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The Latest in DLBCL Treatments

What Clinical Trials are Available to Me?

Edited by:
Katrina Villareal

Experts and patients discuss the latest in diffuse large B-cell lymphoma (DLBCL). Dr. Josh Brody of Mount Sinai Hospital, clinical trial nurse navigator Crissy Kus of The Leukemia & Lymphoma Society, and DLBCL survivor Dr. Robyn Stacy-Humphries share the new DLBCL research, treatments, clinical trials, and expert advice.


Brought to you in partnership with The Leukemia & Lymphoma Society and its Clinical Trial Support Center.



The Latest in DLBCL Treatments - Clinical Trials

Introduction

Stephanie Chuang, The Patient Story: Hi, everyone! This discussion is hosted by The Leukemia & Lymphoma Society and The Patient Story.

I was diagnosed with diffuse large B-cell lymphoma a few years ago and went through hundreds of hours of good, old-fashioned chemotherapy.

Thankfully, our discussion is all about other options that are happening, that have been approved, and that are in the pipeline.

We hear about clinical trials and the term itself can be so daunting. What are clinical trials? Our goal is for you to walk away from this with a much better understanding of what a clinical trial is and if it’s a good option for you or your loved one.

The Patient Story features hundreds of in-depth and authentic patient stories across cancers and conversations with top cancer specialists. The goal is to humanize cancer so that you know that you are not alone. Sign up to be part of our community and you’ll get first access to these programs, new updates, and stories.

We’re proud to be hosting this also with The Leukemia & Lymphoma Society, the world’s largest nonprofit health organization dedicated to funding blood cancer research and offering patient services and education. It has great resources from information specialists who help answer cancer questions to help pay for cancer care costs, including travel for CAR T-cell therapy.

I’m really excited to introduce our panelists. We’re really, really grateful to have them with us.

First off, someone I was lucky to meet at one of these big conferences. A very busy guy. I’m really excited that he’s spending the time with us. Dr. Joshua Brody, director of the Lymphoma Immunotherapy Program at the Icahn School of Medicine at Mount Sinai.

The Latest in DLBCL Treatments - Clinical Trials

Dr. Josh Brody: Thank you so much. This is a great opportunity. It’s really nice to try to reach out to talk to people as directly as we can.

I run the Lymphoma Immunotherapy Program here at the Icahn School of Medicine at Mount Sinai in New York. At Mount Sinai, we are very lucky to be an NCI-designated cancer center where one of our missions beyond patient care is trying to get the next generation of patient care, which is part of developing clinical trials and helping to get patients access to newer, hopefully, better and safer therapies.

I was committed to becoming a cancer doctor from the time I was six years old. As that developed, the plan was for me to become a cancer doctor who develops new immunotherapies for cancer.

We’re very lucky to have the best precedent of immunotherapies helping patients with lymphomas. Even what you called the standard old chemotherapy is not that old because rituximab is an immunotherapy that is part of that old chemotherapy and when I started doing this, rituximab was not even a therapy.

Immunotherapy has a great precedent. Using the patient’s own immune system to help fight their cancer has a great precedent in lymphoma and that is part of what got me interested in lymphoma.

I was doing my training at Stanford in California and it’s a very well-known lymphoma place so it was a great opportunity to hopefully become great at what they are great at. There were a few things converging to get me to become a lymphoma doctor and now I’ve been doing it for a while.

Stephanie: Really grateful that we have people like you who’ve been in this for so long and are so dedicated to helping to figure out what is effective and also what will help with quality of life.

Next, we have Crissy Kus, a nurse navigator with The Leukemia & Lymphoma Society’s Clinical Trial Support Center. We know that you are on the phone all the time helping patients and their family members.

The Latest in DLBCL Treatments - Clinical Trials

Crissy Kus: Thanks, Stephanie. I became a nurse about 12 years ago and started my career early, moving around the units in the hospital every 4 to 6 weeks. After a year of doing that, I was allowed to choose a home unit. I knew pretty quickly that BMT was my home, working with patients with blood cancers.

I help patients specifically with CAR T-cell therapy and lymphoma. I’ve been with The Leukemia & Lymphoma Society in the Clinical Trial Support Center. We’re a team of nurses who help patients and their families explore clinical trial options, learn about their treatment options, and navigate that whole journey — whether that’s proceeding with the standard of care and learning about those details and logistics or identifying barriers to participating in clinical trials and helping them overcome any of the barriers in the way of them participating.

Stephanie: Thank you, Crissy.

I’m also really excited to introduce our final panelist tonight, Dr. Robyn Stacy-Humphries, who has such an incredible story. Someone I’ve gotten to know and I feel very lucky to know you.

You have such an incredible perspective as someone who is a physician who got your own diagnosis not just once but going through treatment three times.

The Latest in DLBCL Treatments - Clinical Trials

Dr. Robyn Stacy-Humphries: First of all, hats off to Dr. Brody. We’re very lucky to have him on this panel.

Like Dr. Brody, I actually wanted to be a doctor from the time I was five or six years old. I went to medical school and residency in radiology and my subspecialty is cancer-focused. I do body imaging, PET-CT, and mammography. I diagnose cancers and do biopsies.

Ironically, I was diagnosed with lymphoma in my late 40s. Very much of a shock to be on both sides of it. Both my parents passed away from cancer of different kinds and then I developed one myself.

Navigating the cancer world as both patient and physician has been unusual and that’s one of the reasons I’m thankful to be here. One of my missions is to try to give back, to try to bridge the gap between doctors and patients so that they can learn to talk to each other better. Patients can learn to advocate for themselves and doctors can perhaps understand where they’re coming from.

Stephanie: Thank you for being here and for offering a perspective that is very unique. We have two physicians on tonight who really care about the patient’s perspective.

This is a personal topic for me as well. DLBCL is all over my medical charts. I was 31 when I was diagnosed and like you, Robyn, there’s that shock. I remember trying to understand: what do these letters mean? Lots of alphabet soup coming at you when you get diagnosed with cancer of any kind.

The Latest in DLBCL Treatments - Clinical Trials

What is DLBCL?

Stephanie: Dr. Brody, in as human terms as possible, what is diffuse large B-cell lymphoma? Are there some common first red flags or symptoms?

Dr. Brody: For Stephanie, I have to apologize for the alphabet soup. That’s a thing we do. We make up code names with lots of letters but not just to be confusing. There’s so much we’ve learned in decades that we make subsets of subsets and then we need more alphabet soup to describe all the subsets. PMBCL, DLBCL, non-GC — it’s letters on top of letters.

Anything that we can say in medicine or science, we should be able to say it in English as well. None of it’s so complicated that we shouldn’t be able to say it in English, especially when we’re talking to our patients. We have to be able to say things in a way that is understandable.

In regular English, lymphoma is a cancer of lymph cells. What are lymph cells? This is really simple. You think about breast cancer, cancer of breast cells, prostate cancer, cancer of prostate cells. It’s a healthy cell that becomes a cancer.

What are lymphocytes? Lymphocytes are a certain type of blood cell. They are specifically blood cells that may live in your lymph nodes. When you say swollen glands because you had a cold or a sore throat or something, those glands we’re talking about are usually lymph nodes.

Lymph nodes are all around your body. That’s the first tricky thing because when you think breast cancer, prostate cancer, you think, “Oh, I know where the breast is, where the prostate is,” so that makes sense. Lymphoma comes from lymphocytes, which mostly live in lymph nodes, so that could be anywhere in the body.

The Latest in DLBCL Treatments - Clinical Trials
Common symptoms of lymphoma

Dr. Brody: The common presenting symptoms of lymphoma depend on which lymph node area had a cell become cancerous. Amongst all of those possibilities, we still say that the most common presentation is a painless, swollen lymph node literally anywhere in the body.

There are subsets of lymphomas that don’t even show up in a lymph node per se. Sometimes we talk about primary mediastinal B-cell lymphoma. There are lymph nodes there, but they’re not in the common lymph node spots. We think of the neck, the underarms, and so forth. They just show up in the middle of the chest, the mediastinum. Nonetheless, the most common presenting symptom is a painless lymph node.

Lumps you get because you had a sore throat are not a painless lymph node. Usually, they are painful or tender lymph nodes. If you have a tender lymph node, that’s a little less likely to be lymphoma than inflammation as a result of a cold or sore throat.

Again, not every lymph node that gets a little bit swollen needs to be emergently evaluated. Otherwise, every person would have a swollen lymph node at some time or another.

The first thing we have to pour on this is a bit of common sense. You have a lymph node that’s a bit swollen for a few days. You can watch it for a few more days and if things start to recover on their own, probably you don’t need to go and get that swollen lymph node evaluated.

Lymph nodes that are swelling, usually painless, and getting worse over weeks and weeks and weeks need to be evaluated. Those are the most common presenting symptoms of diffuse large B-cell lymphoma, which is the highest incidence type of lymphoma.

Stephanie: I really appreciate you sharing the differences between what is more commonplace versus when you need to maybe get something checked out. People do get really worried.

The Latest in DLBCL Treatments - Clinical Trials
Robyn’s DLBCL diagnosis

Stephanie: Robyn, you went through this yourself so it’d be great to hear from you. What was it for you that was a red flag that led to the diagnosis? Share a little bit about getting that diagnosis.

Robyn: I had a swollen lymph node, but it was an unusual location in what’s called your supraclavicular region. You never have normal lymph nodes there. When you have a cold, those don’t swell up. Usually, when you have a lymph node above your collarbone, it can be a symptom of lung cancer, gastric cancer, ovarian cancer, or even breast cancer.

I felt a lymph node literally while I was watching TV. I knew it was bad. It’s never good.

My process for diagnosis went very fast. I ended up with a CT the next day, which I looked at and found out I had lymphoma. I had lymph nodes all the way up and down my neck, which you couldn’t feel. They were all very small. There were too many of them.

I actually had some lymph nodes behind my nose and something called Waldeyer’s ring. I thought I had allergies. I was congested and that actually was lymphoma.

I really had no symptoms besides that. I was working 60 hours a week as a mother of three. I ran every day. I ate well.

Everything went really fast. It was a shock. Before I knew it, I had a CT scan, a PET scan, and a port put in, and immediately started on R-CHOP, which is the standard therapy. It was initially very successful for me. It didn’t work later, but it was very successful at first.

I did six rounds of R-CHOP and as Dr. Brody said, rituximab changed everything. When I was in medical school, non-Hodgkin’s lymphoma cure rate was very low, only about 30 or 40%. Once you added rituximab, it’s over 70% in a lot of cases.

Things have progressed in the last 10 years. Now with the immunotherapies, things are totally different.

The Latest in DLBCL Treatments - Clinical Trials

Stephanie: What a strange experience to have essentially self-diagnosed and have to read your own scans and images, but you do that for a living. I appreciate both of you talking about just how quickly things have changed in the last 10 to 15 years and even in the last five years or so with immunotherapy.

That’s what’s exciting to talk about but also why these programs are so necessary because it is a lot. It’s great to have people who specialize in this area so that there’s a depth of knowledge about all the different options and for whom these options are best.

Standard of care for DLBCL

Stephanie: Let’s talk about the standard of care. Dr. Brody, what has been the standard first-line treatment in DLBCL? We heard Robyn talk about R-CHOP.

Dr. Brody: For the past 20 years, there’s been a bit of an evolution. R-CHOP has been the standard of care. It doesn’t mean that everyone gets R-CHOP, but most people do — certainly more than 80%, probably more than 90%.

Some people may not get R-CHOP maybe because it can be a little tough. We have patients who are in their 90s and they may get a gentler version of R-CHOP or even slight variations of that. We do have patients in their 90s who still get R-CHOP, but it’s not gentle therapy.

The Latest in DLBCL Treatments - Clinical Trials

We sometimes give gentler versions and sometimes even more aggressive versions. There’s a therapy called R-EPOCH. It’s a tougher version of R-CHOP.

In some ways, it seems to be “better” in that it’s maybe more effective, but in a big randomized trial comparing the two, there wasn’t a clear difference. We think that R-EPOCH is just good for certain super high-risk subsets of patients so 5 or 10% of patients get R-EPOCH instead of R-CHOP.

The Latest in DLBCL Treatments - Clinical Trials

That was a big evolution from the CHOP of the 90s and easily added a 10-plus percentage increase in the cure rate to standard therapy for patients with DLBCL so it’s a big, big deal.

I was very lucky because rituximab came out of Stanford and Biogen Idec-Genentech back in the early 2000s so it was an exciting time for us. We now enter the rituximab era of treating patients with DLBCL. Now we’re still seeing comparably exciting evolutions to what may be the standard going forward.

The Latest in DLBCL Treatments - Clinical Trials

Stephanie: Amazing to have all that history and to be front and center when it was all going on; that must have been exciting.

We have a recent approval, polatuzumab and R-CHP, which is R-CHOP without the O for first-line treatment. How much real-world data is there? What are your thoughts about it as another option for people?

Dr. Brody: Pola-R-CHP, we say, is another option. It’s not the right answer, but it might be the right answer in the future. We’ll see.

There’s a randomized trial, POLARIX, where half of the patients got R-CHOP and half got pola-R-CHP. Pola-R-CHP was a bit more effective where 6% more people stayed in remission for the first couple of years. It’s possible that could eventually translate to an increased cure rate, but we need more time to follow those folks and see how they do.

The Latest in DLBCL Treatments - Clinical Trials

But a 6% increase, staying in remission for two years, that’s not nothing. If you were one of those six out of 100 people, that’d be a big deal for you. The only catch is it’s not “for free” in that there are some extra side effects but not too bad. The risk of infections during the therapy was moderate, but it was also a bit increased in the pola-R-CHP. Interestingly, it was about a 6% increase on that side as well.

Maybe 6% percent more people staying in remission and maybe 6% more people getting this significant side effect. The side effect lands you in the hospital so it’s not nothing. A little bit tougher on lymphoma, but a little tougher on patients as well.

The Latest in DLBCL Treatments - Clinical Trials

I wouldn’t say it’s the right therapy for everybody, but certainly, every lymphoma doctor is weighing each patient. It’s supposed to be personalized for each patient. This patient might do well because they’re younger, healthier, and wouldn’t have a high risk of side effects and this other patient may not do well.

A 90-year-old probably wouldn’t get pola-R-CHP because R-CHOP is already tough therapy for them. Higher-risk patients and certain subsets of high-risk patients might get the most benefit from the pola-R-CHP. Probably in the near future, maybe half of the patients are going to get pola-R-CHP and half are going to get R-CHOP.

Risk of relapse with DLBCL

Stephanie: That’s great. Thank you for sharing that and interesting to hear. We’d like to take in one of the patient questions actually. Wilson asks, “What’s the risk of relapse with DLBCL and what is the leading treatment for those who relapse?”

Dr. Brody: As Dr. Stacy-Humphries said, we cure the majority of patients. This is awesome not just compared to the 90s, but compared to the 70s when I had relatives that had this disease. We cure the majority of patients and that’s wonderful. It’s not 100% and we would like to get it there.

Today, we are curing more than 65% of patients, depending on which study you look at. A third of patients could still relapse.

These studies focus on slightly younger, slightly healthier patients. If you look at everybody, it’s probably about 65, maybe a little bit above that with “standard” 2023 therapies. We see that increasing as well over the next few years.

The Latest in DLBCL Treatments - Clinical Trials
Relapsed/refractory DLBCL treatment

Dr. Brody: The standard of care for them depends on a few things. It depends on when they relapse. If patients relapse very quickly, within the first year, the approach is a bit different. The idea is they just got chemo and it didn’t work very well so giving something that kills cancer in a different way might be better.

In the TRANSFORM trial and the ZUMA-7 trial, early relapsers and people that didn’t get a good remission at all or refractory patients, CAR T cells were superior to the old standard.

The old standard was basically more chemo and actually a lot of chemo, which was tough therapy. Those trials both showed that CAR T was better. If you read between the lines, they were also, I would say, safer and better tolerated. That’s a rare win-win, both better and safer. We don’t get a lot of those in new cancer therapies.

With pola-R-CHP, it wasn’t really a win-win. It was maybe better, but not safer. CAR T versus the old standard of more chemo was a real win-win. For early relapses and refractory patients, CAR T is the standard of care. It doesn’t mean every patient has to get it; there’s still some individualization. But for the early relapsers, that’s been the big change over the past year and two. That was not the standard of care even a couple of years ago.

The Latest in DLBCL Treatments - Clinical Trials

For patients whose disease relapses later, it’s even more individualized. The old standard for younger patients with late relapses was this mega dose chemo approach called autologous stem cell transplant. Autologous means you give the stem cells to yourself. We want to distinguish it from the other kind of transplant where you get stem cells from another person called an allogeneic stem cell transplant.

The Latest in DLBCL Treatments - Clinical Trials

For people who relapse a little later and who are young and tough enough to tolerate this tough therapy, that is still the standard but that doesn’t really apply to every patient. When we did those first studies, they were for people under 60 then we started doing it for patients under 65. Now we do it for patients under 70.

It’s tough therapy for people who are around the median age of this disease, which is upper 60s and 70s. It’s standard of care, but a lot of times for those late relapsing patients, they may not be eligible for that approach. Thankfully, there’s a whole bunch of other more targeted options.

Robyn’s 1st DLBCL relapse

Stephanie: Robyn, you had a good response to R-CHOP in the beginning. As you mentioned, it didn’t stay that way. We’d love to understand more about what happened. How far along were you until you realized something was not right again?

Robyn: I was actually in complete remission for four years when my relapse happened in 2015. Again, I felt a lymph node in my neck, which I knew wasn’t supposed to be there.

The Latest in DLBCL Treatments - Clinical Trials

As Dr. Brody said, the standard of care at that point was an autologous stem cell transplant. First, they give you salvage chemotherapy; RICE is what I received. It’s very rough chemotherapy. I also got intrathecal chemotherapy to prevent the lymphoma from going to my brain.

When I was confirmed to be in remission, they went ahead and did the stem cell transplant. They harvest stem cells and oblate your bone marrow using the strongest chemo possible then give you your marrow back.

It’s really a rescue. You have no stem cells left. They give you your marrow then you have to wait for your marrow to come back.

The biggest risk is infection. I got called septic shock and was very, very sick in the intensive care unit on medicines and pressors.

When I survived that, because my case was slightly unusual, it was decided among several institutions that I get radiation, which was really horrible. Two thumbs down, don’t recommend it, but I’m still here.

I was very, very sick. I couldn’t eat solid food. I dropped from a BMI of 22 down to about 15 or 14. It was quite difficult. I was actually trying to work. It wasn’t great, but you do what you have to do to survive. I did get great care so my doctors were fantastic. It’s just I had some complications.

Robyn’s 2nd DLBCL relapse

Robyn: I was in remission for nine months after the autologous stem cell transplant when the lymphoma came back. This time, it came back even more aggressively. Not only was it in my neck, it was underneath my armpit and in my groin.

I had no match for an allogeneic transplant — no one was even close. The doctors were very shocked. But I had already decided I did not want to go through that again.

The Latest in DLBCL Treatments - Clinical Trials

I researched on ClinicalTrials.gov on my own. We started looking at other options. I heard about T-cell therapies. They talked about killer T cells and CAR T. It had been in the news in 2015 or ’16.

I started looking into that and that’s how I ended up going into a clinical trial. I’m very, very grateful I did. It was a phase 2 trial. It was definitely a leap of faith, but I just had a feeling it was the right thing for me.

I was an excellent candidate because I was in really, really good health except for the lymphoma. For a clinical trial, this is perfect because I had no comorbidities. That way the doctors could actually figure out if this was going to really work without something else that would interfere with the procedure.

Stephanie: ClinicalTrials.gov is a great resource. It is not the easiest to navigate, especially for a layperson so that is where the LLS’ Clinical Trial Support Center is so wonderful. Resources like that help people really navigate what’s out there.

The Latest in DLBCL Treatments - Clinical Trials

What is a clinical trial?

Stephanie: When we talk about clinical trials, the research is happening to hopefully help provide more options for people.

A lot of patients have talked to me about efficacy or how successful it is at saving your life or increasing your life span and safety, which is quality of life and side effects. I want to live longer, but how is my quality of life going to look?

Dr. Brody, you’ve been involved with so many clinical trials. What is a clinical trial?

Dr. Brody: We should take Dr. Stacy-Humphries’ example of this. Robyn got that in 2016. There were no FDA-approved CAR T cells in 2016. They got approved in 2017.

Clinical trials are lifesavers. They are an opportunity to get access to a thing that is not yet FDA approved or sometimes things are FDA approved but a newer version or a better version or a combination.

In Robyn’s case, that was the only way to get access to CAR T cells, which years later, we realize are in many ways superior to autologous transplant and RICE. Not in every setting but in some settings, blatantly superior.

Clinical trials are carefully regulated opportunities to get access to medicines or combinations of medicines that are just not yet FDA-approved. This is a preview of future medicine. We don’t want to oversell it because not every clinical trial is successful.

We can’t ever do a trial unless we get all of these things blessed by many different groups, institutional ethical boards, local ethical boards, and the FDA. It is a way of getting access to things that are not yet FDA approved or not yet FDA approved in that combination or in that specific way.

Lymphoma is the fifth most common cancer in America. Pretty common but not as common as other ones like breast cancer. We have more medicines for lymphoma because we’ve been lucky to have more successful clinical trials and more rapid progress. 

The Latest in DLBCL Treatments - Clinical Trials
Researching clinical trials

Dr. Brody: The great thing about clinical trials is the tough thing about them: finding which one is where and at what time. ClinicalTrials.gov is the same tool we use, but it’s not super user-friendly. You can look at it and you might get the answer. At the very least, it might guide you to who to call.

There is no one best way to find out what is the right clinical trial for me. Even if you ask your doctor, they know about some, but it’s hard to know about every single trial in America at any given moment because they change even from month to month.

Stephanie: Crissy, how can someone look up what clinical trials are out there on their own if that’s the direction they’d like to go in?

Crissy: ClinicalTrials.gov houses every cancer clinical trial and general treatment clinical trials in the United States and some outside of the United States as well. Patients can go on there and look up information about studies pertinent to their case if they’re interested.

The Latest in DLBCL Treatments - Clinical Trials

I will give a fair warning. In my previous job, on at least a weekly basis, I had to help hematologists in the navigation of that database. These were really bright physicians and physicians who were the primary investigator on many of these trials and they had a hard time navigating the database.

I tell patients to say don’t get down on yourself. If you looked at that database and it was overwhelming, that’s where we come in. We have a database that sits on top of ClinicalTrials.gov and has all the information that it has. It allows our nurses to update and augment that information in real time so that it’s as updated as possible and has additional logistical information so that we can best communicate the information to patients.

Additionally, most large cancer centers or NCI-designated centers have a page on their website that has all the clinical trials that they have at their site. If a patient is specifically interested in a certain institution in the US, they can likely go to their page and look at the clinical trials that they have.

It’s generally going to link them to ClinicalTrials.gov where they can look at more information about the trial, but most institutions have really good databases on their own that talk about the clinical trials that they have at their site.

The Latest in DLBCL Treatments - Clinical Trials
Misconceptions about clinical trials

Stephanie: Crissy, you’re on the phone a lot with patients and their family members answering questions about clinical trials. What are the top questions that you’re getting and some of the misconceptions that you’re hearing about clinical trials?

Misconception #1: Getting a placebo

Crissy: One of the biggest misconceptions that I hear from patients almost daily is that they’re worried about participating in a clinical trial because what if they get the placebo part of the trial?

In the United States, placebos are very rarely used in clinical trials. When they are used, they’re not used alone. A patient with cancer would never get just a placebo and not some type of effective treatment. The way that a placebo would be used in a clinical trial would be in addition to something that is proven to already be effective.

A really simple example that I give patients using CAR T as an example is if they wanted to study a drug in addition to CAR T that will make CAR T more effective or have less toxicity.

The way that a placebo would be used in that setting would be if you had 100 patients all getting CAR T as the standard of care and 50 of the patients get CAR T and then they get a placebo and then the other 50 patients get CAR T and a drug that’s being studied to see if it makes CAR T more effective or less toxic.

Every patient in the clinical trial is still getting the minimum standard of care. Some patients are getting something to see if it makes it more effective or potentially less toxic and the other patients are getting a placebo.

Misconception #2: Clinical trial is free

Crissy: Another big misconception about clinical trials is that everything on a clinical trial is free or that if a patient doesn’t have insurance, they can participate in a clinical trial to get a drug for free. Unfortunately, while I wish that that was true, it’s not.

There are three buckets of costs that we describe to patients.

Bucket number one is things that are free, things that the patient is not responsible for, and their insurance is not billed for and those are things that are investigational. The study drug that’s being used in a clinical trial? Not billed to insurance. Any follow-up or monitoring specific to the study drug or needed just for the clinical trial? Covered by the sponsor of the trial, not billed to insurance.

The second bucket is things that are billed to the patient’s insurance and those are things that are routine, standard of care. If someone has lymphoma, they’re going to be seen by their physician routinely. Their labs are going to be monitored. They may need to be hospitalized for treatment or symptoms. Those are all billed to insurance because even if a patient wasn’t participating in a clinical trial, they would still be having those physician visits and having their labs checked routinely.

The third bucket is things that come out of a patient’s pocket like the general copays that you would have and travel and lodging to a site. If you needed to travel far away from home to participate in a study, that would be considered out-of-pocket for a patient.

Misconception #3: Clinical trial as last resort

Crissy: The other misconception that I hear quite frequently is that patients think that they can only participate in a clinical trial if they’ve exhausted all of their treatment options and that could not be further from the truth.

There are clinical trials for patients in every step of their diagnosis — from the time that they’re first diagnosed, all the way through having failed multiple lines of prior therapy. There’s a clinical trial for most patients at every stage of their treatment.

This could be standard of care, front-line treatment for a patient with another added drug to see if it makes it more effective. It could be things like studying CAR T in the front-line setting where half of the patients get front-line treatment like R-CHOP and half of the patients get CAR T to see if CAR T is more effective in front-line treatment. Then every step beyond that, including long-term monitoring for patients who are in remission.

The Latest in DLBCL Treatments - Clinical Trials

What is CAR T-cell therapy?

Stephanie: We’d like to delve into CAR T a little bit more. We have been getting a lot of patient questions.

Dr. Brody, can you give us a general description of CAR T-cell therapy? What is it? What does it entail?

Dr. Brody: When I describe CAR T cells to my patients, they think I’m kidding. It sounds like science fiction, but it’s a real thing. They think, “Oh, what decade? When will that be here?” It’s already here.

CAR T-cell is a combination of gene therapy and immune therapy. We take out some of a patient’s immune cells, send them somewhere where they turn them from normal healthy T cells, and insert this new gene called CAR, a chimeric antigen receptor. Now we call it CAR T cells.

They ship the CAR T cells back to you. The patients have to get some chemotherapy before the CAR T cells are reinfused. We say we give that to make room for the new cells to come in. It’s a bit of a metaphor, but it’s conceptually fair.

The gene that we put in, CAR, helps those T cells to go to your diffuse large B-cell lymphoma and eliminate it more potently than any other single therapy that we’ve ever developed. Close to some other immunotherapies now, but it’s quite amazing.

The Latest in DLBCL Treatments - Clinical Trials

They don’t do it perfectly and they don’t do it for 100% of people, but they induce remissions in a good majority of people. Depending on the setting, they may cure 35, 40, or maybe even 50%, but we usually say about 40% of patients. Again, it depends on what’s happened to that patient before and some other things about the patient.

For Dr. Stacy-Humphries, we used to call that an incurable setting — third-line, diffuse large B-cell lymphoma — and now we’re curing 40% or more of those patients. It’s miraculous and it’s not science fiction. It’s a real thing.

Robyn’s CAR T-cell therapy experience

Stephanie: Robyn, you went through this. You’re a physician so you have, I think, more of a know-how of navigating ClinicalTrials.gov or understanding what’s in the pipeline. How did you determine that this was what you wanted to do? You mentioned it was a leap of faith. Who brought it up? What was the experience like when you actually went through CAR T?

Robyn: I decided that I want to do CAR T because I didn’t have an allogeneic match. I could have had a haploidentical transplant, which is a half-match with my son. I didn’t do well with the autologous transplant so I didn’t think I was going to do well or I may not have survived an allogeneic transplant and I may not have had a normal life. I wanted to have that quality of life.

I’d read about CAR T in some scientific articles. I just Googled this. Nobody really told me anything. I just thought this made sense because right now, the basis of cancer therapy is you either cut it, you burn it, or you poison it. Taking your own immune cells is actually much nicer. It’s lovely as compared to the other ones, even though it has side effects.

When I researched clinical trials, I didn’t have that much of an insight. I just put in my diagnosis. I found all of the trials and we emailed every single investigator.

The reason I ended up in the trial was it was the only opening that existed. We looked all over the world. I was really ready to sell the house and move wherever. We were lucky to get one about nine hours away.

Fast forward, I signed up for CAR T. I’m the second person at this huge hospital who gets the treatment. When they took my T cells out, they gave me one chemotherapy agent, bendamustine — some people get FluCy — and had the CAR T cells infused. The infusion took about five minutes. Everyone in the room clapped and just left so it was very anticlimactic.

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In my case, they started working very quickly. By the time I came in, I had a lot of lymph nodes and within 24 hours, they started melting. Within seven days, all my palpable lymph nodes were gone.

I developed cytokine release syndrome. In my case, it was a fever and low blood pressure. Most people feel really lousy, like the worst case of flu ever. I was hospitalized for three days from days 5 to 8. Other than that, I was in a rental condo and stayed at the hospital for a month. I didn’t feel great, but I didn’t feel awful.

Amazingly, I was able to go back to work four weeks later, only working two days a week, which is unusual. I did extremely well and I would say that that’s relatively unusual. I know a lot of people now who had CAR T who were working two weeks after.

Dr. Brody: After the stem cell transplant, how long were you out of work? Just for comparison.

Robyn: I was out of work for three months and when I went back to work, I was not able to eat solid food. I lived off smoothies. It was terrible.

Stephanie: What a comparison. You also said you were young and otherwise healthy except for the lymphoma so all these things may factor into a response.

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Pros & cons of CAR T-cell therapy

Stephanie: Patient Gil R. asks, “What are the pros and cons of CAR T-cell therapy and what is its duration?” Dr. Brody, I think you can answer this question in several ways, but I think in talking about pros and cons, people want to compare. What are the side effects? In terms of duration, how long is the therapy itself and how long is the expected duration of response?

Dr. Brody: Pros and cons, very broadly.

Pro, if you compared it to what Dr. Stacy-Humphries described as the old standard before that, the chemo and stem cell transplant, CAR T cell therapy is both more effective, especially for some patients, and gentler. Robyn was out of work for 2 to 4 weeks, whereas after the transplant she was out of work for months and only on smoothies.

When you ask doctors about efficacy, we can give you numbers. When you ask about side effects, we describe them in more nebulous, vague ways because there are so many numbers you could give.

A great metric is how long were you out of work or unable to do the things you do. If you’re retired but you garden every day, how many weeks or months until you are gardening again? Those are great examples.

Let’s acknowledge the cons as well and Robyn pointed out one. Some of the side effects and the most common and one of the scariest ones is CRS, cytokine release syndrome.

It’s basically like having an infection, but there’s no infection there. You have fevers and sometimes dangerously low blood pressure. Even though Robyn was only hospitalized for a few days, the more common thing nowadays is folks are hospitalized for sometimes a couple of weeks on average.

Sometimes, it’s a boring hospitalization, which is the best kind of hospitalization, just to watch for that side effect to see if it occurs. Sometimes folks have to go to the intensive care unit just to treat that low blood pressure and fever. That is one of the biggest side effects.

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One other scary side effect is called ICANS (immune effector cell-associated neurotoxicity syndrome) but we just call it neurotoxicity or encephalopathy. It means there’s a horrible problem with the brain and this side effect manifests in many different ways like hallucinations and loss of consciousness.

These things sound very scary so I should preface it by saying there’s a very defined time course to these side effects. They almost always happen within the first couple of weeks. There are a couple of rare exceptions of it happening on the third week, but they never happen two months later. Both CRS and neurotoxicity are scary side effects. They’re time-limited for the majority of people, but they’re a serious big deal.

Some patients have a higher risk of getting those side effects, like patients who are older or less healthy and patients who have greater tumor bulk. Patients with enough lymphoma have more of those side effects than patients with just a small amount of lymphoma when they go into CAR T therapy.

This therapy has a greater track record of keeping people in remission for years and years. We have some newer therapies that are as promising, but they don’t have the years and years of track record because they’re newer therapies.

These side effects are not nothing. If you were an 80-year-old patient with a bulky tumor, these cons are a serious thing and we have to start thinking about other alternatives for those kinds of patients.

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What are bispecific antibodies?

Stephanie: Dr. Brody, let’s talk about bispecific antibodies. Some have described it very simplistically as an off-the-shelf CAR T option.

Dr. Brody: This is, I would say, the most exciting and transformational thing in lymphoma and DLBCL, certainly in the last couple of years. Maybe you might argue ever because my belief is their total impact in the next few years is going to be unparalleled.

Antibodies are magical little molecules, big long proteins that bind very specifically to one thing. We make antibodies against COVID after we get a vaccine or get COVID.

A company can make antibodies against certain targets on lymphoma cells. Rituximab is an antibody against lymphoma, but it just binds lymphoma.

Some brilliant pioneers from a few groups developed bispecific antibodies. They bind to lymphoma cells and one of your T cells.

Some people use the Lady and the Tramp with one spaghetti noodle metaphor. If you haven’t seen the movie, the spaghetti noodle brings them together except instead of the kiss between the Lady and the Tramp, this is the kiss of death because the T cell kills the lymphoma cell and kills it pretty well.

In a way, it’s sort of an off-the-shelf version of a T-cell therapy, like the CAR T cell. It’s very cool that CAR T-cell therapy is individualized. I send my T cells in, they send me back my CAR T cells. Logistically and practically, it’s very difficult and it takes a lot of time.

How much time it takes is a bit variable. It could take 2 or 3 weeks to make the product, but sometimes it takes a couple more weeks just to plan the whole thing out. Sometimes it takes more weeks just to get to see the doctor to plan that so there can be real delays there.

Whereas with these bispecific antibodies, you just inject it right into the patient. No delay there so they are in some ways a lot easier because they are off the shelf. You don’t have to make it for each person.

Efficacy of bispecific antibodies

Dr. Brody: The efficacy has been overall awesome. They are not perfect, but they are putting a big proportion of patients into complete remission and some of those patients are staying in complete remission for years so that’s fantastic. Maybe the numbers are a little less amazing than CAR T cells in efficacy, but they’re also a lot easier.

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Side effects of bispecific antibodies

Dr. Brody: Overall, possible side effects are a lot gentler. Those CAR T cells were causing CRS or neurotoxicity in maybe 10 and 20% of patients, whereas these bispecifics caused bad side effects in maybe 1 to 3% of patients.

It opens up a lot of opportunities. A patient that was not eligible for CAR T, because it would have been too scary, could be eligible for bispecifics.

Access to bispecific antibodies

Dr. Brody: CAR T cells are available at a limited number of centers. That can be tricky because you’re not just going there for one day to get the therapy; you’re there for a while, as Robyn was saying.

Bispecifics were just FDA-approved so they may not be available everywhere today. We don’t want to oversell that, but they can be available everywhere and they’re now available at most major centers.

Eligibility for bispecific antibodies

Stephanie: Epcoritamab and glofitamab are newer and newly approved.

How would someone know what questions to ask whether they’re a good candidate for bispecifics or which option to go for? As we know, it was approved for later lines of treatment and even after approval, they’re still in clinical trial because everyone likes to try and move it up earlier in lines of treatment.

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Dr. Brody: Very exciting. These two medicines were just FDA-approved. There was one other that was approved for follicular lymphoma at the end of 2022, which was mosunetuzumab.

There are a lot of these getting studied and approved now. There will be several more approved as sort of a plan C, third-line therapy when Plan A or Plan B don’t work well enough.

If a patient asks, “Is this the right therapy for me?” Tough and detailed question, but the first thing you want to make sure of is that the doctor that you are working with is familiar with the option.

Even though they are available anywhere, there are a lot of new cancer medicines coming out every month and year. This is very tough, especially for community oncologists who take care of every kind of cancer. It would be impossible for them to be super familiar with every new medicine for every type of cancer.

It is not that every patient with lymphoma needs to be seen by a lymphoma specialist, but once Plans A and B have failed, this is not a great situation.

Let’s just be simple about it. Bluntly, it is worth the schlep to go and see a specialist who does nothing but take care of lymphoma patients. They are familiar with these medicines and it would be hard for most community oncologists to be familiar with them.

Community oncologists will be familiar with these medicines over the next couple of years, but they may not be today and they may not have access to administer them because there can be complexity in getting these medicines started in a new practice.

You need to make sure that you’re speaking with a doctor that has comfort around this. A lot of times, community oncologists are vaguely aware of it so they’ll call their local buddy who’s a specialist and say, “You tell me. Should I send this patient to you?”

But as you heard from Robyn, sometimes patients end up advocating for themselves. I’d like to say that there’s a better way, but that does happen. The function of The Patient Story, the LLS, and other patient advocacy groups is to try to be an intermediary so patients don’t have to advocate for themselves.

But if a patient is asking if bispecific antibodies are right for them, there’s a good chance the answer is yes so you should at least be talking to someone that has experience with these.

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Choosing among treatment options

Stephanie: When there are different options and they’re new, how do you make a decision on which option to put a patient on?

Dr. Brody: Although these medicines are newly approved, we’ve been using these medicines for three years, give or take, so we have a lot of familiarity with them. Maybe we didn’t predict this, but epcoritamab and glofitamab are more similar than different.

For example, the complete remission rate for both of them was exactly 39%. What are the chances of that? The high-grade bad side effects were about 3% with both of those medicines.

There are a few nuanced differences. Epcoritamab is given subcutaneously whereas the glofitamab is given intravenously. It’s a little difference, not a huge, big deal.

The timing is a bit different. Epcoritamab has more visits and they might go on for longer. Glofitamab has fewer visits and is designed to be stopped after about nine months.

It doesn’t give you an answer to which one is better. We ultimately make a decision for each patient, but they’re pretty similar overall.

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Stephanie: Let’s bring back CAR T. There are different approvals for different groups of people and there has to be that personal conversation between a patient and the provider to understand the best option.

Generally speaking, if you’re comparing CAR T-cell therapy versus bispecifics in terms of limitations and challenges, what would that summary look like for our patient audience?

Dr. Brody: I’m going to change the question slightly. The question is always which one’s better, CAR T or bispecifics? But that’s not actually the question people really care about because, unfortunately, neither of these cure 100% of people. As the patient, you want to get access to both, not A or B. You might want both this and that or that and then this.

The best question is: what’s the best order to give them? If you were going to get both, would you rather get CAR T and then bispecifics or bispecifics and then CAR T?

Sometimes it’s a moot point because CAR T is approved as a second-line therapy for some patients and so far, bispecifics are approved as a third-line therapy for patients. In some cases, you don’t have to make a choice because this one’s available and that one’s not — that’s going to change a lot in the next couple of years.

I have to give you my honest belief about this. CAR T has one thing that is definitely better — they have a longer, more tried, and true precedent of keeping people like Dr. Stacy-Humphries in remission for a long time. We say “curing” patients. It’s been proven for longer so you might want the most proven thing and CAR T is that.

It still fails for a majority of patients depending on the setting. If it cures 40%, that means there’s 60% that still we need to do better for.

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If you really want to get both, if you were to get CAR T and it failed, you might not be able to get bispecifics because the chemo you get right before CAR T might not make the bispecifics work well. It wipes out many of your own immune cells so giving them in that order may not be great. Giving CAR T and bispecifics right afterward may not be a good option.

If you give bispecifics first and you’re in remission, great! You don’t need something else. But if they stop working, then you could get CAR T afterward. We’ve done that many times now.

It’s not which one is better; it’s what’s the best order to get them if you’re going to get both. For some situations, it’s going to be CAR T. There are a lot of situations for which you might want to get bispecifics first also because it is gentler and the risk of those bad side effects is lower. Some people find that appealing as well.

There’s no right answer, but I’m giving you a little bit of my prejudicial belief about what might be the best order.

Stephanie: Sequencing is a huge question. If bispecifics are approved for earlier lines, it will actually be a consideration for people.

Bispecific antibodies in the community setting

All things considered, part of the question, too, was accessibility. There’s this idea that if it’s off the shelf, more people will have access to it. Do you see any challenges there, even in the community setting, with bispecifics? What are some of the solutions?

Dr. Brody: I was explaining how much easier and gentler bispecifics are compared to CAR T cells. Robyn actually had a good experience, but she did have cytokine release syndrome and people do have to get hospitalized usually for that. Sometimes, for only a few days but most commonly for a couple of weeks.

Bispecifics are gentler. The risk of high-grade side effects is less, but there is still a 3% risk.

As of today, folks getting bispecifics still have to get hospitalized for at least one day just to watch them as they get the first dose of that new medicine. That’s not so bad. One day is less than a couple of weeks, but it’s not nothing.

Some community oncologists may have difficulty getting that hospital bed lined up. It sounds like a simple thing, but practically, it can still be difficult. We are trying to overcome that obstacle.

There’s an ongoing clinical trial of epcoritamab trying to give it at a gentler step-up dosing so patients don’t even have to get that one-day hospitalization. There’s a good chance that the trial will be successful so we’re looking forward to that.

But as of now, even getting a one-day hospitalization might make this an obstacle to getting this with your local oncologist.

Bispecific antibodies as a treatment option

Stephanie: Robyn, you lead this huge group online in the CAR T-cell therapy space. I’m curious if you’ve started to get questions about bispecifics. What is your take on where you think bispecifics might fill a gap or be a good option for folks?

Robyn: Every patient is unique. In community hospitals, most oncologists are very overwhelmed with trying to take care of more of the “bread and butter” type of therapy so I really don’t see bispecifics going into the community hospitals anytime soon, at least in the more rural areas. It’s going to have to be in a city center and often on a transplant unit.

For bispecifics and CAR T, I see them as very similar. On the CAR T site, we do have people who fail. About 40% have a long-term remission rate then there’s everyone else.

Most people after the second or third round should see a lymphoma specialist then they’ll have to decide what they would rather have or what’s best for them. With the new bispecifics, it changes the whole gamut.

Most of the people on the site are actually CAR T, but then when people fail, there’s another site that deals with relapses from CAR T. A lot of those patients go on to bispecifics and they’ve had some real success with that.

Everything’s very early. Patients need to be their own advocates and have to be honest. As much as they would like to stay in their rural hometown or be with their family doctor, if you have something serious like this, you really have to travel.

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New DLBCL clinical trials

Stephanie: Dr. Brody, there are different clinical trials that are happening that we haven’t covered, but as great as these developments are, everything has some limitations. There are always more clinical trials to try and solve those problems. If you could talk a little bit about some of the newer clinical trials that are happening and what problems they’re trying to solve, especially in the bispecific space.

Dr. Brody: Rituximab targets CD20 and these bispecifics so far also target CD20, a marker that’s on lymphoma cells. The CAR T cells target another thing on lymphoma cells called CD19. There are a few of those markers that you could maybe target.

If you target something on the surface of lymphoma cells, if there were a couple of lymphoma cells that didn’t have CD20 or CD19 on them, those won’t get targeted by the therapy and would grow out, escape, and cause the relapse.

We call this antigen escape when that targeted antigen is lost by the cancer cells and then those cancer cells grow back. This is the main limitation of both CAR T cells and bispecific antibodies so there are a lot of ways we could try to solve this problem.

One of the simplest ones is to go after different targets. We now have bispecifics targeting another antigen on lymphoma cells called CD22. The numbers don’t even matter that much. It’s just going after something that wasn’t on the cancer cell initially so they’re still there after the first bispecific.

We have things beyond bispecifics called trispecifics, which are going after two things on the lymphoma cell and then getting the T cell. For example, going after CD20 and CD79 and then grabbing the T cell as well, the effector that’s going to give the kiss of death to that lymphoma cell.

These are good ways to prevent the antigen escape problem. We’re starting some of those trials now. We’ve been treating a lot of people and seeing patients going into complete remission so maybe these will be even better than the already standard of care that was the cutting edge just a month ago, the new bispecific antibodies.

Maybe we’ll have trispecific antibodies as the new standard of care to prevent that problem. Some limitations but some solutions coming up for those limitations so pretty encouraging.

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Different phases of clinical trials

Stephanie: Crissy, a lot of your patients get worried when they hear that one of the studies is in phase 1.

Crissy: I hear that a lot. Patients call me and say, “I only want to participate in a later phase trial like a phase 3 or a phase 4.” There’s a long conversation that goes into explaining to patients that a drug doesn’t go through all four phases of a clinical trial before it’s approved.

Phase 1 clinical trial

Crissy: A phase 1 clinical trial is a dose-finding clinical trial where they find the proper dose and establish safety. How that’s done is in a step-up fashion. Generally, there are a couple of dose levels that are identified and they enroll a small number of patients into each dose level.

They start with dose level one and give that dose to around three patients. They assess those patients and monitor for toxicity for a set number of days, usually more than a month. If no unwanted toxicity is seen, they move up to the next dose level and beyond in that same fashion.

They move up to dose level two, give that to a small number of patients, and assess them for toxicity. If there are no unwanted toxicities, they move up to the next dose level. Same thing. A small number of patients monitor them for a period of time.

Phase 2 clinical trial

Crissy: Once they’ve reached either the maximum dose in the trial or toxicity, that dose level is identified and moved into phase 2. They give the dose level that was identified in phase 1 to a large number of patients in phase 2, usually around 100 patients. That’s when they’re assessing for effectiveness.

If you look at the way a clinical trial is listed on ClinicalTrials.gov, many clinical trials are listed as phase 1/2 and that design that I described is being done on the same clinical trial.

Sometimes, after phase 2 is complete, if the data is robust enough, they’ll submit to the FDA for approval at that point. Sometimes clinical drugs only go through phase 1 and phase 2 before being submitted to the FDA. However, a phase 2 clinical trial is considered the gold standard before being submitted to the FDA for approval.

Phase 3 clinical trial

Crissy: In a phase 3 clinical trial, drugs are being compared to the standard of care. A really good example of this is after CAR T was very first approved, it was only approved for patients who had lymphoma and had failed two or more lines of therapy. The FDA approved it for patients who had failed front-line treatment and then either salvaged with an autologous stem cell transplant or just salvage therapy alone.

A phase 3 clinical trial opened up where CAR T was compared to the standard of care second-line therapy. Half of the patients received CAR T and half of the patients received standard of care with an autologous transplant.

Phase 4 clinical trial

Crissy: A phase 4 clinical trial is long-term toxicity, side effect type of trial for drugs that are already on the market.

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Low enrollment for adult clinical trials

Stephanie: This is where the LSS’s Clinical Trial Support Center can help. Can you explain more about the numbers that you’re seeing? The national enrollment for adult clinical trials is very low and the LLS is trying to get the numbers up.

Crissy: Many patients come to us having tried to look for clinical trials on their own or a doctor told them to look for clinical trials or they had a loved one who just decided to start looking for clinical trials on their own. They often come to us very overwhelmed, having tried to look at ClinicalTrials.gov or other databases for clinical trials.

You can certainly go on to ClinicalTrials.gov and look for trials yourself. What our department does is take that workload off of a patient and their families and do a personalized search for the patients that we work with.

The national average of patients that participate in clinical trials is around 3-5%. Nurse navigators in the Clinical Trial Support Center help patients identify clinical trials that they’re potentially eligible for, identify barriers that they may be facing — logistical barriers, insurance barriers, not knowing what options are available — and overcome those barriers.

Our average of patients that participate is around 22%. The patients that we work with have a higher chance of participating in clinical trials because of the work that we do to help them navigate the entire process.

On behalf of the patients that we work with who participate in a clinical trial, our nurses do more than 20 interactions with healthcare providers or the trial sponsor. Our team and LLS in general really look at that as more than 20 opportunities for a patient to fall through the cracks if they weren’t working with a nurse on our team.

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Travel costs in clinical trial participation

Stephanie: Patient Joy B. asks, “Are travel costs included for clinical trials?”

Crissy: Very good question. Around a quarter of clinical trials close because they don’t reach accrual goals. They have a set goal for how many patients will participate in the trial and they don’t reach it.

One of the reasons that happens is that while clinical trials are at academic sites, patients aren’t always located near an academic site so they have to travel to participate.

A lot of work has been done over the last 5 to 10 years to overcome that barrier for patients. If they have to travel to participate in a clinical trial, how do we decrease the burden for them with that travel? And that’s been identified as financial assistance.

A lot of clinical trials will provide financial assistance to patients who participate in a trial that has to travel beyond a certain distance. Generally, it’s more than 30 or so minutes.

If a patient has to travel more than 30 or so minutes to participate in a clinical trial, I highly, highly encourage them to ask the team at the treatment site if there is financial assistance for me to participate. Oftentimes there is.

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How it looks is different for every clinical trial and every site. Sometimes it is a concierge service that books patients’ travel or lodging for them. Sometimes it’s a prepaid card that helps them pay for the hotel, food, and gas.

Other times, in not-so-ideal situations, it is done on a reimbursement basis where patients submit their mileage, food receipts, and lodging receipts then they’re paid back by the company for those expenses.

There’s been a lot of advocacy from LLS and other groups to change that model. A lot of patients don’t have the money to front that. If they can’t pay for a hotel room upfront, the reimbursement model doesn’t work for them.

Additionally, The Leukemia and Lymphoma Society has copay assistance and travel assistance for patients, whether that’s to get treatment or to participate in a clinical trial.

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Clinical trial paperwork

Stephanie: Robyn, you went through this process. I would love to hear about figuring out logistics, but also you had to go through excessive paperwork before the clinical trial, is that right?

Robyn: The paperwork is very intimidating for most people and even for myself. Look through the paperwork but also talk with your doctor. The paperwork always has the worst things that can possibly happen with the clinical trial, but you also need to ask your doctor, “What is the alternative that I’m getting?” A lot of times, we don’t go into that.

For example, CAR T versus allogeneic transplant. People get a little overwhelmed. Sometimes, they don’t understand that the clinical trial has some risks but even the standard therapy might even have more risks.

Ask questions. Try not to get too overwhelmed with the paperwork. Be your own advocate. Knowledge is power. Read up and be ready to go. Don’t expect all your doctors to have all the answers right off the bat. You need to be able to ask the right questions.

Crissy: If I had the time like a day or so of leeway, I would call the patient ahead of time, get their email address, and send them a copy of the consent form beforehand.

I would tell them, “Look this over with your family. Highlight, write down questions, and make a list of questions that you have about the form before coming to the site.” It’s a long form; oftentimes over 50 pages and that can be a lot in a single doctor’s visit to look over.

Bring someone with you. That can be a village. If where you’re going allows, bring people with you for that visit or have them on video call so there are more ears hearing the information and people who can remember the information.

Lastly, the really important thing is you can sign that form and say that you want to participate, but it’s not legally binding. You can leave the clinic that day and say, “You know what, I changed my mind. I don’t want to participate.” You can do that at any point in the clinical trial — a day later, a week later, months later.  You’re not legally bound by any means after signing that form.

I encourage patients to stay on the trial if possible. For data capturing purposes, we need patients to stay on the study to show the effectiveness or safety of the drug so that it can potentially get to many more people.

Stephanie: I love that message of self-advocacy. What we’ve seen at The Patient Story is people get motivated when they hear other people say, “I was an advocate for myself.” It almost gives a sort of permission to speak up.

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Final takeaways

Stephanie: We’d love to understand the final takeaway from each of our panelists that they’d like for audiences to walk away from. Dr. Brody, what’s your biggest message?

Dr. Brody: Patients with lymphoma are unlucky to have lymphoma but so lucky to be here today with that lymphoma. Twenty years ago, we didn’t have access to medicines that cure patients and keep them in long-term remission to go and live their lives, hopefully just like they were before.

We only have those new medicines because patients join clinical trials. Patients who join clinical trials today sometimes are getting access to the medicines of the future.

These new bispecifics that just got FDA approved, our patients were getting access to them three years ago because they did this slightly scary thing and asked, “Are there any clinical trials available?” For some of them, thank goodness, because they’re still here to tell their story today.

Stephanie: Thank you, Dr. Brody, for being a leader in the space of clinical trials. We also know what a big advocate you are for patients and their families so thank you so much.

Crissy, I know that for you, there’s something about when to talk about these options with people’s doctors, right?

Crissy: Around 90% of adult patients with cancer are treated at community sites. The bulk of clinical trials, unfortunately, are not at community sites. They’re at large academic centers.

From the time a patient is diagnosed, they may not know that there are clinical trial options available to them if they’re not at the site where a patient is being treated. Generally, physicians are going to offer patients what they have at their site.

It’s really important to talk to your doctor. Ask them from the point of diagnosis and at relapse and beyond: What are all of my options beyond the treatment that you’re offering me here? Is there something that’s potentially better or other options that I could access somewhere else?

You’re the driver of your ship and so advocate for yourself. Ask questions. From the time you’re diagnosed, ask about the treatment options that are available to you now and what if. What’s our plan B? If this treatment doesn’t work, what’s next for me?

Explore second opinions. If you’re interested, go to another site and see an expert in your disease and ask what they would recommend to you. There are no ill feelings from a healthcare provider when a patient wants to see another physician in that space and get their input.

For patients who come to me worried that they’re going to offend their doctor, you’re generally not. The grand majority of physicians are not going to be offended if you want to get a second opinion from an expert in the field.

If you are with a physician who is offended by you getting a second opinion, that isn’t a physician I would personally want. I want a physician who wants their patients to advocate for themselves to know all of their options and explore every option that’s available to them.

Stephanie: Thank you so much, Crissy, for that and for your work at the CTSC. Patients and family members find a lot of comfort for sure in having someone to lean on through what can be a very overwhelming process so thank you again.

Speaking of this process, Robyn, you are such an inspiration for people about the power of a clinical trial. We know that it might not be for everyone and it’s a very personal decision, but you have such a wonderful voice to lend when it comes to what is right about a clinical trial.

Thank you also for participating in one because that helped to further the data and the experience so that it could lead to approval. You’re proof of thriving after a trial. What would you like your message to be to our audience?

Robyn: Don’t give up hope. Make sure you ask questions. Feel free to get other opinions. Really good doctors are not insulted when you get another opinion.

I’m living a great life. I’m working. I’m traveling. I saw my youngest child get married. It’s fantastic.

I’ve been a doctor for over 30 years and I’ve taken care of a lot of patients. I’ve read hundreds of thousands of films. I’ve done thousands of biopsies. I’ve held a lot of people’s hands. I’ve counseled a lot of people. But ironically, my biggest contribution to medicine is not as a doctor, but it’s been as a patient so I’m grateful to be here.

Thanks, Stephanie, for doing this. This is fantastic. I wish I had had something like this when I was going through my experience.

Stephanie: Thank you so much, Robyn, Crissy, and Dr. Brody — incredible discussion about clinical trials in the space of DLBCL. We hope you’re able to walk away tonight knowing more and feeling more comfortable about what clinical trials are.

The Latest in DLBCL Treatments - Clinical Trials

For FREE 1:1 support to enroll in and stay in a clinical trial, check out The Patient Story’s partner organization in the program, The Leukemia & Lymphoma Society, and its Clinical Trial Support Center!

Here is a direct link to a form to fill out — and someone from The LLS will reach out after.


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Categories
Cancers FAQ

Dealing with Scanxiety

How to Deal with Scanxiety as a Cancer Patient

Patients share what actually relieves their worries

Three cancer patients discuss how to deal with scanxiety, the overwhelming fear and anxiety that often accompanies medical scans and tests for cancer patients. Our cancer patient panelists Nick Mundy, Lainie Jones, and Matt Ode share their real-life experiences and offer practical tips and strategies for managing scanxiety and maintaining emotional well-being throughout the cancer journey.


This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



Introduction

Alexis Moberger, The Patient Story: We are excited to have this conversation along with our three panelists.

The Patient Story features in-depth storytelling with cancer patients. All three of our panelists actually have shared their stories on our platform. We also have live discussions with top cancer specialists to get the latest information on top treatments and new therapies.

Nick Mundy: I live in the Cincinnati area. I’m 33 years old and a two-time thriver of non-Hodgkin lymphoma. I just finished chemotherapy on May 24th for a diagnosis of stage 4 diffuse large B-cell lymphoma with liver metastasis.

Right now, I get scans every three months. I’ve been getting scans and dealing with scanxiety for about the last decade, long before I ever knew what scanxiety was.

Matt Ode: This is such an important topic because no matter who we are, when we’re going through cancer, we all face this. We all face scanxiety. We all face some type of anxiety.

I’m 31 years old and from Cleveland, Ohio. At 24, I was diagnosed with stage 4 testicular cancer. The doctors found an 11 cm tumor in my small intestine. I went through five rounds of BEP (bleomycin, etoposide, and cisplatin).

I ended up having many complications after my initial surgery, which led to multiple surgeries and eventually to kidney and liver failure. I was in a coma for two weeks and ended up being in the ICU for over 40 days. I had to relearn to walk and relive my entire life again at the age of 25.

Lainie Jones: Thank you so much to The Patient Story for having us and for the amazing community that you have created. I’m so honored to be here. I’m excited to talk about this because it’s something that’s not talked about enough.

I’m 39 years old. I live in South Florida and I’m a five-time cancer survivor. My first cancer diagnosis was at 18 months old so the word “survivor” has stuck with me throughout my entire life. My next diagnoses were breast cancer at 24, melanoma at 25, thyroid cancer at 26, sarcoma, and another relapse of stage 0 adrenal cortical carcinoma.

What is scanxiety?

Nick: Scanxiety might be closely related to PTSD and/or the fear of relapse. According to the Dana-Farber Cancer Institute, common symptoms include irritability, sweaty palms, increased heart rate, and nausea in the time leading up to an exam.

I personally think I have all of those signs and symptoms when dealing with scanxiety. The irritability is off the charts, the sweaty palms, the increased heart rate, and even my bowels change.

We’re going to talk about how we deal with it. I would love to hear what scanxiety looks like for you.

Matt: When I was rebuilding my life, I’d go in and get scans every three months and it can be very stressful at times.

As you prepare yourself, as you do the things you can control in your life, and focus on the things you can control in your life, time will help heal through this process. And as we continue to heal through ourselves through cancer, we also heal through ourselves through anxiety and scanxiety as well.

Today, I am very blessed to say that I am six years cancer-free. I now only have to do one-year scans. For some of you, it may turn from three months to six months to once a year. Everyone’s at a different pace.

Lainie: Scanxiety is something I deal with all the time. My scan routine is every three months. It looks very different for every person, but because I live with a rare genetic mutation called Li-Fraumeni syndrome, I’m monitored very closely.

Something that I always experience is loss of sleep the night before a scan and about two weeks leading up to the scan.

How to deal with scanxiety

Nick: How do we deal with scanxiety? What are some of the tips, tricks, and resources that we use?

Lainie, you’ve got a beautiful outlook and you’ve been going through scans for a long, long time. How do you deal with scanxiety and how do you continue to maintain a positive mindset throughout all of this?

Live incrementally

Lainie: First of all, I want to say I’ve mastered the whole-body MRI. I think that that’s something to be really proud of because I can stay still for two hours.

I live by the motto that I live every day like it’s my first. A lot of people ask, “Wait, what? You live every day like you were just born?” I really do. As a cancer patient, cancer thriver, it’s a gift we’ve been given so that is my motto.

I get scans so frequently that I tell myself if there is something there, it’s only three months old. That’s really helped me stay positive.

I’ve had scans where things show up then you know it’s time to tackle that new adventure. I really think what helps is incrementally focusing on the times of your scans and staying on top of being your own advocate.

You know your body best. It’s so important to have that at the forefront of your mind. I live in three-month increments. Every time I get ready to go get my scans, I think, Okay, here I am, another three months. We’re going after it. Keep a positive mindset all the way through.

Nick: I love that. Living incrementally, living three months at a time. I’m going to take that and put it in my tool kit. I’m just entering the three-month scans so this is new to me. I’ve been through every six months, annually, or when something comes up. With that perspective and that re-framing, it gives you the power back so I really, really appreciate you sharing that.

Mind over matter

Nick: You’ve mastered the whole-body MRI. The cardiac MRI that I’ve gone through is usually about 90 minutes and every time I go through it, I’ve almost tapped. How do you manage to stay still through the two hours?

Lainie: Every single time I get strapped in, there’s an itch at the top of my toe. I think it’s really mind over matter. When I’m laying in that machine, I just put myself in the zone. I’ve mastered it to the point where I fall asleep and need to try to keep myself up.

I really make sure that I have a great playlist. It’s my Beating Cancer playlist on Spotify. Most of the time, institutions can play your Spotify list. I’m dancing mentally and giving myself good vibes. If I can’t play the playlist, I make sure I have some really good tunes to zone out. The noise is unbearable, but it’s mind over matter.

Nick: Truly some great nuggets of information. I really, really appreciate that, Lainie. Thank you for sharing.

Find the right support system

Nick: Matt has absolutely been through it. This man is a warrior and the definition of perseverance.

Matt, I know that you are big on controlling what you can control. Talk to us about how you deal with scanxiety. How do you control all the things that you’re going through and all the feelings that you’re feeling when dealing with scanxiety?

Matt: We have support systems such as our family and our friends, but our family and friends aren’t actually doing the scans. They’re not actually going through cancer. They’re there for us, but that can make us feel really lonely.

How do you find the right support system, especially when you’re feeling alone in the situation? You have this anxiety and you’re talking to people, but they’re not actually going through it. Sometimes you just feel like they’re just listening, but they might not understand exactly.

I was lucky enough that my hospital, the Cleveland Clinic, has what’s called the 4th Angel mentorship program. What they do is connect you with an individual who went through the exact same cancer as you. Ask your hospital if they have a similar program. 

It gave me peace of mind when I was able to talk with this individual who had gone through pretty much the same cancer as me. Every time I’d get a scan, I would text him and say, “Hey man, I’m feeling this today,” and he’d walk me through how he was able to overcome it or what was able to help him. It was a tremendous help.

I built a Facebook group for cancer patients, survivors, and caregivers. The whole premise of the group is to help you along your journey with cancer. We have over 6,000 members in the group now. It’s an incredible family filled with love, support, and people who can relate to one another. You can pretty much search what type of cancer you have and I can guarantee you there’s somebody in that group that is going through something similar.

Ask questions

Matt: If you get really nervous and have so many questions, don’t be afraid to ask your doctor. A lot of times, the anxiety is made-up stories in my head. You have a scenario and you make it the worst possible scenario.

But when I would talk to my doctor and he’d say, “Hey, that’s not necessarily true, this is not necessarily true, and here’s how it actually works. Maybe here’s how you’re feeling and I dealt with so many patients like this,” that can give you a sense of ease.

Nick: That’s so powerful. Thank you so much for sharing that. I love your vulnerability. Sometimes as cancer patients, I think we can get blinded by the headlights and almost forget that we have the right to ask these questions. We forget that it’s okay to feel how we are feeling at this moment.

I love the Facebook group because it’s imperative to have a great support system and other people that you can express yourself authentically and honestly with that have walked a mile in your shoes.

We are all surrounded by people that love us. We have great family and friends and caregivers, but if they haven’t been in your shoes as a patient, it’s very hard sometimes to get the sincere empathy that you’re really looking for.

The group that you have sounds phenomenal. I’ve gone through this journey many years where I felt alone and I could have definitely used a Facebook group like that. I’m glad that you initiated that and created it.

Be vulnerable

Matt: One last thing is your vulnerability is not your weakness. Your vulnerability is actually your strength. I’m not saying to open up to the world. You don’t have to be a panelist like us and share your story everywhere. Being willing to open up to somebody that you can trust is like baggage getting off of your shoulders.

When I first got diagnosed, I did not want to share any of my emotions for a good month. I was stone cold, afraid to share anything, thinking I was weak, especially as a man. I felt like being a man, you can’t just express how you’re feeling.

When I was finally able to release some of my emotions and really express what I was going through, I could then take away what I wasn’t able to control and focus on what I can control, where I needed to go, and the steps to help heal me.

Lainie: And also, just to add to that, you’re helping other people while doing that. It’s so important. A lot of times, we hold things in and don’t realize that when you’re sharing your story, it’s going to help other people. It’s so important.

Nick: I love that we’re having this discussion because often there’s another person who’s got the same scanxiety, fear, worry, or same question that you have. By being vulnerable and leading the way with that, it gives other people permission to be vulnerable as well and so I’m really glad that you guys both highlighted that.

Name your emotions

Nick: There are a lot of different ways that I’ve dealt with scanxiety over the years, some healthy, some not so healthy. Today, I really lean more into anything that’s going to improve my wellness or give me the best chance at being here long term so I’m making decisions that are going to give me more life.

One of them is naming the feeling that I’m feeling. Scanxiety, as we mentioned earlier, can manifest in multiple different ways and lots of different feelings, physical symptoms, and mental symptoms.

If I can’t name what I’m feeling, I’ll pull up a feelings wheel, similar to one that you’ll see in a therapist’s office. There are different emotions in the middle and often, I’ll start off with angry. From there, I’ll look at the other things and really see what is it that I’m really feeling.

I know that I’m presenting as angry, but what’s really underneath that anger? There’s typically fear, sadness, and feeling withdrawn. I take the time to pull out the feelings wheel or just sit down and put pen to paper and write what I’m feeling.

Take it a step further and share with someone who is a safe and trusted person: a loved one, a friend, a family member, or a peer-to-peer mentor like the program that Matt was talking about. I know that The Leukemia & Lymphoma Society has a peer mentor program as well.

Get that feeling out and remove the power that it can grow when you keep it inside. Sometimes you feel like you have to be tough and put on a face for everybody. When you keep those feelings inside, it can bubble up and just explode. I can have an angry outburst, throw up from being so sick of how I’ve worked myself up, or have my knee shaking as I’m walking in before a scan.

I have found that naming the feeling, expressing it, and talking about it has taken the power away from it and it’s given me power back over the situation.

Manage your environment

Nick: The next thing that I try to do is manage my environment. Typically, when we hear environment, we’re thinking about the setting around us. If you’ve been going through scans like most of us have, there’s not much that you can do to manipulate your external environment.

But leading up to that scan, you can manipulate the environment of your home or office and create a safe place that feels very zen, relaxing, and peaceful. Spend time there and create a ritual for yourself.

As important as it is to make sure that you cultivate the proper external environment, I think it’s even more important to cultivate the right internal environment by being conscious of what you’re telling yourself. What’s the story that you’re telling yourself? What’s on repeat? Be really cognizant of that.

Managing my internal environment goes to telling myself the facts. I’m a master at spinning stories. When I do that, I get sick. I just keep going. I have to tell myself the facts. I do that leading up to my scans. I do that in the car. I do that while I’m in the MRI or PET scan machine.

What that looks like for me is, “I am safe. I am loved. I have everything I need to live a full life today at this moment. The only thing that worrying about this situation is going to do is change my health. It will not change the results. But if I continue to worry like this, it can and will impact my health over time.”

I want to live a very long and healthy life. I want to give myself the best chance and I know that me stressing myself out is going to lower my immune system. It’s going to open me up to infection. As someone who’s battled febrile neutropenia and been hospitalized countless times, I’m doing anything I can to boost my immune system.

We receive information from our doctors and that information changes from appointment to appointment. But the facts are still that I am safe, I am loved deeply by my family members, by my friends, and by my support system, and I have everything at this moment to lead a successful and meaningful life today.

And really, today is all I have control over. I don’t have control over the three months from now when I go back to get my scan. But today, I have everything I need to live a meaningful, fulfilling, and joyful life. I remind myself of that and I have to continue to replay that over and over until I eventually believe it and that becomes my default.

Practice deep breathing

Nick: Box breathing or breathwork, in general, is something I do to get myself nice and calm. One of my favorite sets of breathwork is a nice deep inhale through the nose for four seconds and then exhaling through the mouth for six. I’ll do that about 10 times.

By focusing on my breath, it brings me back to the here and now. It doesn’t allow me to project myself into the future, into the doctor’s office where he’s reading me the results about my end of life because that’s the way that my brain works.

When I start to spin these stories about what the doctor’s going to tell me when I see him or her next week, all of these things have helped me mentally, emotionally, and physically.

Lainie: That’s so awesome. I suffer from lymphedema in my left arm and I’ve had numerous cellulitis infections from it. There was a point when I was in the ER and my heart rate was so high because I was so worked up. I was covered in hives,

My husband said, “You have to calm down and take deep breaths and just put relaxing music on.” Your box breaths would have been so helpful at that moment. They said, “You’re going to be admitted into the cardiac area if your heart rate doesn’t drop.”

Those deep breaths and getting in the zone are so important. Your body can do crazy things, but make sure you’re in tune with it.

Make healthy choices

Matt: I love that. I would say one thing that has helped me tremendously is focusing on the foods that I eat and making sure I try to get some type of movement.

I know that for some people who are going through cancer, it’s tough to workout. Getting some type of movement in and eating the right foods will not just mentally, but also physically prepare you for the scans to come up. If you’re prepared, you will feel more confident, you will have more courage, and that usually leads to less anxiety.

I eat clean foods such as lean protein, vegetables, and fruits, and stay away from fast food and heavy carbs as much as I can. I’m not saying carbs are bad by any means, but some of these things make you bloated. It’s not good for your gut health and ultimately not good for your mindset.

When I feel like crap, guess what that means? It leads to more anxiety in my life. Going into that scan, I’d feel less prepared. When I’m eating clean and moving, I’m doing everything I can to try to heal my body.

You’re never going to be perfect. There are going to be ups and downs. I remember during my chemotherapy, there were some days when the only thing I could eat was a peanut butter and jelly sandwich, so I ate a peanut butter and jelly sandwich.

But if at least 80% of the time you really try to take control of your health, you’re going to feel so much better going into these scans. You’re going to feel confident and stronger. You’re going to feel like you’ve done everything you could control.

Whatever the outcome is, if you’re getting three-month scans, guess what? The worst possible scenario is they caught it within three months, but you did everything you possibly could to take care of your health. For me, that has made a massive difference when it comes to preparing for my scans as well.

I created a whole list of healthy food options, healthy snack options, and healthy vitamins. Talk to your physician before taking anything. It’s made a massive difference in my life and allowed me to feel more confident and more prepared going into my scans.

Anxiety while waiting for the results

Nick: There can also be some relief after you’ve gotten your results from the scans and found out that there was something there. We’re talking about scanxiety, but this is also another form of scanxiety that I could definitely relate to.

In 2022, I started feeling all the signs and symptoms of my non-Hodgkin’s lymphoma coming back. The fatigue was starting to set in. I was having wicked night sweats every single night, my beds were drenched, and my lymph nodes started to swell up.

I told my oncologist and the doctors in the ER, “I need a scan. Something’s wrong with me. I had cancer last year and I think I have cancer again.” Everybody said, “No, you’re fine. You look healthy. You’re strong. You’re in good shape. You’re doing all these physical activities.”

That made me feel like a crazy person until I got my scan. I had to beg to get the scan. When I got the results, I saw the words liver metastasis and lesions. From there, I had a biopsy a week later. Then a week after that, I found out that I had stage 4.

While I wasn’t relieved to know that I had stage 4 with liver metastasis, I was relieved to have my intuition recognized and validated. I know my body better than anybody else. I live in it 24/7.

I knew that something was off. For people to continuously tell me that something wasn’t wrong made me feel all of the signs and symptoms of scanxiety. There was a little bit of relief once the diagnosis came.

I say that to cover the spectrum of scanxiety. We could interview 15 other people and they are going to have different things that they do and different experiences with their scanxiety. I wanted to share and make somebody else who might be going through something similar feel seen. You can have scanxiety and almost relief or have some of these things come up as you do find things that are on your scans and your results.

Anxiety during treatment

Lainie: Treatment on its own can be anxiety-ridden. I’ve done chemo three different times and I’m on treatment for the rest of my life so I get infusions every 21 days.

When I was going through the aggressive portion of chemo, I would always try and make it fun. Turn lemons into lemonade. I know that sounds so cliché, but making an experience that’s maybe a little dark or not so fun helped put me at ease.

I would always have somebody come with me, a friend or family member, and just have fun. I know that sounds silly, but sometimes fun helps that anxiety go away. Make it into an experience. Every day is a memory so make it a memory.

Treat yourself after a scan 

Nick: Do you have a go-to treat after your scan? You got to treat yourself. After you’ve gotten out of the two-hour MRI, what do you do? How do you celebrate or how do you at least sigh and let yourself just breathe again?

Lainie: The first thing is I go to the bathroom. That’s a treat on its own.

Matt: I love it. I still have anxiety until I get my results. My results usually don’t come for 3 to 4 days so even after I’m done with the scan, I’m still nervous. I got half of it done. Now I got to get the results.

Anybody who gets scans usually waits at least 12 hours, sometimes even 24 hours, before they can eat anything because they need to make sure their body is completely cleansed.

Once I get my results and get the all-clear, I take my wife and we usually go to a nice steak dinner. That’s how I do it. I celebrate when I get the actual results.

Lainie: I love that. I don’t really have a specific food I like to eat after. All I know is I just want a big cup of water to get rid of that crap that they inject in your body. Fortunately, for a whole-body MRI, there’s no fasting. I try to eat a little something before.

I go to MD Anderson and I just sit and wait. I don’t really have a celebratory meal. Maybe get a nice coffee.

But when I have surgeries, that’s a different story. I like to have my McDonald’s waiting for me when I’m done with surgery. It’s not healthy, but a guilty pleasure.

Matt: We all deserve a little guilty pleasure.

Lainie: Yeah, exactly.

I travel to Houston every three months for my scans. I always keep my medical ID band on. If my husband doesn’t come with me, when I get home or once we get the all-clear, he has to take it off. It’s like a celebratory tradition. Another three months to go! It’s always nice to have those little traditions as a cancer patient.

Staying strong before and after a scan

Nick: How do you not lose your will to fight?

I personally feel like there is no way that I can lose by showing up and living life to the fullest on a daily basis, being the best version of myself that I can possibly be.

I empty the tank every single day. I live boldly. I love boldly. I try to treat others with respect. I try to honor my values and my morals. This is outside of cancer, really.

At the end of the day, I really feel like if I operate like that on a daily basis, losing is not even an option. I’m going out, I’m giving it everything I’ve got every single day, and I think that’s the best way that I can possibly honor life.

We’re all going to die. We came into life the same way. We’re going to leave the same way gradually or suddenly. But in order for me to be prepared for that, I just need to live well. I try to live well on a daily basis. I feel like if I live well on a daily basis and I love well on a daily basis, then there’s no way that I can lose.

Matt: I love that, Nick, that was perfectly said. I really wouldn’t have to say another thing. Going through what we’re all going through makes life just a little more precious. It puts things into perspective.

The little things that I used to worry about before cancer, like certain arguments or feeling I might be losing certain friends, don’t really matter so much anymore. What does matter is the people who love me. Being the best possible version of myself, just like Nick said. Then to add a little cherry on top of that is giving back.

Personally, being able to serve and help others is what gives me true happiness and fulfillment in my life. I have a little saying and it’s actually an acronym called h.o.p.e. — help one person every day — and that is just the motto I live by.

If I can help one person every day, being a Christian, I feel like I’m able to serve God in the way that He wants me to. I’m not pushing religion on anybody, but that’s another thing.

My faith has helped me through a lot of this. I know a lot of people have some type of faith; that will help you through it as well. Being the best version of yourself, realizing that life is just a little more precious, not worrying about those little things, being of service to as many people as you can, and knowing when your time is up, you can say, when you meet your Creator, that you did everything you possibly could.

Lainie: Matt, I love that. For me, it’s one word: purpose. We are all here for a reason.

People know me as the girl who’s had five cancers; that’s not very hard to forget, but I don’t let it define who I am. I let it empower me. It’s so important to take your experience, empower others, and not look at cancer as a death sentence. Let this empower who you are and help inspire others because it’s so important.

Unfortunately, we have been given a gift that nobody wants. Take that gift to help inspire others and lead with purpose.

I have a social media platform that I use to share my journey. I truly believe that if I’m helping one person, that’s why I’m here, thriving, and living every single day like it’s my first.

Conclusion

Nick: I love it. Man, this is phenomenal. I am so grateful to The Patient Story for connecting us and for hosting events like this so we can have real talks and discussions with other cancer patients, caregivers, and family members who are in the trenches because we need it. Nobody fights alone.

Thank you, Lainie and Matt.

Alexis: Thank you, Nick, Matt, and Lainie, for joining our discussion. We definitely want to continue these live discussions and make sure that they are educational and helpful to patients and caregivers. You can also find the latest patient stories and the latest medical news on our platform.


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Categories
CLL Medical Experts Medical Update Article

How to Work With a CLL Specialist

CLL Conversations

How to Work with a CLL Specialist and Build a Strong Team

Are you or someone you know navigating the complexities of chronic lymphocytic leukemia (CLL) treatment? We understand the importance of building a strong support system and collaborating effectively with multiple doctors. The Patient Story features a panel of experts and individuals with firsthand experience.

This discussion features Dr. Nicole Lamanna from Columbia University Irving Medical Center, Dr. Spencer Bachow from Boca Raton Regional Hospital, and CLL patient Lisa P. Our CLL patient voice leaders, Michele Nadeem-Baker and Jeff Folloder, moderated the conversation.


This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



How to Build a Strong Medical Team

Introduction

Stephanie Chuang: I’m Stephanie Chuang, founder of The Patient Story and a blood cancer survivor. It’s another edition of CLL Conversations and our topic is how to build a strong CLL team. We have an incredible group of people to help [give] some guidance, sharing their own experiences from the patient’s perspective as well as from the physician’s perspective.

Our goal at The Patient Story is for patients, by patients and to help those who have been diagnosed with cancer or those around them navigate life after that diagnosis. Our tagline is Humanize Cancer. We specialize in in-depth conversations with patients, care partners, and cancer specialists. Our goal is to help people through a really tough time.

How to Build a Strong Medical Team

Michele Nadeem-Baker: Thank you so much, Stephanie, for ensuring that the CLL and SLL communities are spoken to here at The Patient Story. I’m Michele Nadeem-Baker, a medical and health journalist and also a CLL patient.

When I was first diagnosed in 2012, things were so different in the CLL landscape. Once I started treatment, I made a vow to try to help other patients. Since then, I’ve been growing my patient advocacy and patient leadership and one of the people I do that with is Jeff.

How to Build a Strong Medical Team

Jeff Folloder: Hi, I’m Jeff Folloder, a passionate patient advocate. I really take this seriously because it’s really, really important for me to share that you can live a great life with CLL. Not just a good life; a great life.

I just entered my 14th year of dealing with CLL and it seems like yesterday I got the diagnosis. But what I’m really excited about right now is introducing you to Lisa, someone I met years ago in a waiting room and I’m so glad that she’s going to share her story.

How to Build a Strong Medical Team

Groups like this are so helpful so I’m very grateful, especially when you’re new and don’t know what lies ahead. There’s so much information.

Lisa P.

Lisa P.: I’m Lisa. I was diagnosed in 2012. I just went for a routine physical and got the diagnosis, which came as a surprise, but it doesn’t define who I am.

I’m a mom of three grown children. I’m a yoga instructor. I actually went to yoga after my diagnosis to help deal with it. I used to go to yoga as a workout and once I was diagnosed, yoga became much more than that to me. It became a mental practice that helped me not to spin the stories in a scary direction, but to stay grounded and focused on what was going on without being so fearful.

I was very grateful to have someone like Jeff to talk to; really comforting. I remember meeting in that waiting room after meeting online. Groups like this are so helpful so I’m very grateful, especially when you’re new and don’t know what lies ahead. There’s so much information.

Jeff: This is going to be a fantastic discussion. We also have two world-class medical experts joining us. Dr. Nicole Lamanna is a hematologist-oncologist at Columbia University.

How to Build a Strong Medical Team

Dr. Nicole Lamanna: I’ve been doing this for a long time. I started at Memorial Sloan Kettering and was there for 12 years. I’ve now been at Columbia University since we set up a leukemia service. I’m also a staunch CLL patient advocate as well as a CLL physician.

I had an interest in leukemia when I was in my early days of training. I found it a very complex and unique disease. I was very fascinated by the immunologic things that can happen with CLL patients. I had a mentor who did CLL and I decided I would continue research. I’ve been doing that ever since. Twenty years of doing CLL, at least.

It’s a disease that you live with for a prolonged period of time. I like taking care of other aspects also, not just CLL. Folks have been with me for 20 years so it’s almost like a primary care internal medicine clinic. I enjoy building relationships that last a lifetime so that has also been a very important aspect of my practice and one of the other things I like about treating patients with this disease.

Michele: Dr. Lamanna, it’s always such a joy to see you and to also be with you on these programs. You are such an advocate for all of us and what a specialist you are. It’s a delight to have you with us.

We have with us Dr. Spencer Bachow, a hematologist-oncologist at Boca Raton Regional Hospital.

How to Build a Strong Medical Team

Dr. Spencer Bachow: I knew I didn’t want to do internal medicine; I wanted to be a subspecialist. It wasn’t until I did my malignant hematology rotations as an internal medicine resident that I had role models. These were the types of doctors that I always dreamed of. The way they thought about patients was very different and I knew this was the type of doctor I wanted to be.

I got into it from great role models and the same with CLL. Dr. Lamanna was my fellowship mentor and you could really feel the excitement she and everybody else had in this field.

A lot of the cancer advances that we’ve seen in CLL are some of the biggest. The transformation of the treatment of CLL is one of the biggest cancer advances of the 21st century.

Finally, like what Dr. Lamanna said, it’s a very heterogeneous disease where a lot of patients do well long term. You could establish long-term relationships with them. You get a chance to help people during some of the most difficult stages of their lives.

How to Build a Strong Medical Team

Finding a CLL specialist

Jeff: One of the things that Michelle and I constantly hear, constantly see, especially in online groups, is the recommendation to get a CLL specialist. It’s almost always the first thing that’s tossed out to someone new who shows up. Go get a CLL specialist.

I’m fortunate I live in a metro area. Michele’s fortunate she lives in a metro area. Getting access to a CLL specialist is not very difficult for us. We have them around.

Not everybody who gets diagnosed with CLL has that access. Or maybe they do. How do you build a strong CLL team when you might not necessarily have one in your hip pocket?

My first doctor wanted to start a treatment program that was ancient by CLL standards and I quickly learned that it wasn’t right for me. I had to make changes. I had to get a CLL expert on the team. I did just that and here I am 14 years down the road, doing great because I built a good team.

Michele: Jeff is the second CLL patient I ever met and that was probably a year or so into knowing I had CLL. He came up to Boston and we both spoke at an event. It has been wonderful having Jeff as my CLL buddy and all the things that we’ve been doing together. We are both so passionate about this.

I didn’t even know what a CLL specialist was. I did know there was such a thing as a hematologist-oncologist, but just because I knew one personally doesn’t mean I really knew exactly what all this meant. I think that’s how a lot of us are when we’re first diagnosed.

I was first diagnosed while I was working in South Florida. I had the job of my dreams. I was at the C-level of a major international company with a corner office overlooking Biscayne Bay.

I was diagnosed by someone at a hospital nearby except they didn’t explain anything about CLL. They told me to come back in four months. They had nothing to give me when I asked. But again, this is back in 2012. Things have come a long way since then, thank goodness.

I left everything behind; I really didn’t have to. I quit my job. I was living between Boston and there. I moved back north because I knew Boston has a plethora of healthcare.

When I was diagnosed, I didn’t even know there was such a thing as a CLL specialist. I didn’t even know what CLL stood for. I started seeing a CLL specialist once I heard about one and that’s how I started building my medical team.

Since then, I have been a huge proponent of having a CLL specialist on your team. You don’t have to have one to see all the time if you don’t live near one. Jeff and I were very blessed in that we happen to have centers near us.

Jeff, when you heard about specialists, did you get to one right away or did you take your time in seeing one?

Jeff Folloder: For me, it was right away. I did not feel comfortable with the advice that I was getting. I leaned on a family member who worked at a large research facility in Houston and they got me hooked up.

What you and I have been doing over the past years is encouraging people to get in touch with a CLL specialist, no matter where they are. That’s actually something that Lisa was encouraged to do.

How to Build a Strong Medical Team

How CLL specialists work with local hematologist-oncologists

Jeff: I want to toss this to Dr. Lamanna. How do you work with a local hematologist-oncologist? How does this whole concept of having a CLL expert quarterback actually work in real life?

Dr. Lamanna: You both have been blessed by being in cities that have major academic centers that have CLL specialists.

CLL is not a common disease like breast cancer or colon cancer. CLL is relatively small when we compare them to solid tumor cancers. Most oncologists might see a little bit of this and a little bit of that, and that’s fair.

Although I would love for every CLL folk to come and see me in New York, we know that’s not feasible or possible. Oftentimes, folks will come for an opinion, to discuss their disease, or at a crux where they might need treatment.

I will communicate via phone, email, or message and start a relationship with their local person to help guide them, particularly if this is not a disease they typically treat.

As Dr. Bachow alluded to, there’s such an explosion of treatment options. Depending on other factors, navigating these treatments and choosing between different drugs can seem a little daunting. I’ll try to communicate with their local physician to see if I can help them, guide them, and be a link between the patient and their local physician.

Sometimes it’s extremely easy because their physicians are very willing to have that extra specialist help them in an area that they’re less familiar with. Sometimes it doesn’t go as quite smoothly as I’d like. 

My patients know me. Oftentimes, if I think something’s a red flag, I will speak honestly about that. I need them to find somebody that I think is going to be in their best interest. This isn’t about egos. I know many patients actually feel uncomfortable about having a team because they don’t want to upset their local physician.

Remember, this is all for you. This isn’t for me. This isn’t for your local physician. This is really about you getting the best care that you need for your CLL. If you’re uncomfortable talking about that with your physician, that could be a problem.

You want to be able to communicate with your physician and the physician team about your needs and any issues that arise. You’re going to build a long-term relationship so you want to find a local physician that you can trust, that you can work with throughout the years, and then if advice is needed from somebody like myself, they’re willing to take it because the likelihood is I probably see more CLL patients than they do.

Most of the time, it works well. Occasionally, there may be some issues that need a little bit of hand-holding until they smooth out over time so that you can also include the specialist, particularly at certain cruxes that might come along on your CLL journey.

Dr. Bachow: Echoing what Dr. Lamanna said, the CLL specialist is very important. There’s a huge landscape of all kinds of different treatment options that we didn’t have several years ago. Knowing when to use them and how to safely use them can be tough for anybody. Employing the CLL specialist is very, very, very helpful as a local CLL doctor and a local hematologist-oncologist.

A lot of times, we don’t have access to certain clinical trials that our patients may be candidates for and may be interested in and that is a huge plus you can get when you have your patient meet with a CLL specialist. The local doctor is still important because things happen. Complications happen, hospitalizations sometimes occur, and if you don’t live near your CLL specialist, having somebody there who knows your care is very important.

Additionally, a lot of the CLL treatments these days can be very labor-intensive and require very frequent follow-up. Unless you’re planning on moving to where your specialist is, having a local person that you can trust, that your CLL specialist trusts and that can work together as a team is so important.

How to Build a Strong Medical Team

Lisa’s CLL story

Michele: I met Lisa about four years ago. We’ve been buddies virtually but she lives near where I used to live in Florida. We even know some of the same people.

I was really touched by how you educated yourself on CLL. You learned a lot. You were able to be your own advocate, which is so important, and I’ve always noted that. Could you share when you were diagnosed, your experience, and how you ended up being educated and advocating?

Lisa: I was diagnosed during a routine physical with my primary care doctor. She re-did the blood work, thinking it was a machine glitch, and it wasn’t.

I was immediately sent to this wonderful local doctor at the time and I adored him. He gave me some information, but he wasn’t a CLL specialist by any means and he was very open to me going to other places.

It was really the resources online, support groups that I found, and Jeff that I got directed, speaking to people who had already lived this experience. They pointed me to the current treatments. Oral BTK inhibitors were just starting to explode at that time. Infusions were more common back then.

How to find a CLL specialist

Michele: How did you find your eventual specialist?

Lisa: Once I was diagnosed and starting to get thrown into the trenches of what the reality of this was, I became very involved online, met Jeff, met some other people that had been dealing with CLL for longer, and you hear, “Find a specialist.”

There is a lot of information out there. I would watch Patient Power videos. The Leukemia & Lymphoma Society offers a lot of panels of doctors’ discussions. I would listen to them and listen to the new research. All these specialists are generous, giving their time, and that is how I found both specialists that I went to just by watching videos and being my own patient advocate.

Dr. Lamanna sits on a lot of panels. I would watch these videos and hear her on these panels. On some of them, she was sitting right next to my other specialist. He was getting older and was going to retire, too.

I was just drawn to her. I loved how she spoke and how she relayed information. I loved her personality. I said to my husband, “I really like her. I want to go have drinks with her.” That’s how I felt watching the videos.

It was a small world. I had a visit with my local doctor at the time and I mentioned Dr. Lamanna to him. He literally looked at me and said, “I don’t know why I didn’t think of this before.” They knew each other very well. He texted her and said, “I have a patient and I’m sending her to you.”

My daughter was moving to New York. She was just graduating college. You have to find what’s going to work in your life and it makes sense. I was going to New York anyway so why not have a specialist there?

The puzzle pieces came together and I had this wonderful team. I felt that my local doctor had a better means of communication now. I love and trust my specialist and my local doctor. They communicate well.

Scott’s CLL Story

Michele: We have Scott who talks about how he found a CLL specialist and his path to getting one.

Scott W.: Hi, Michele. My name is Scott. I’m a news photographer in Cincinnati, Ohio, and I was diagnosed in November 2019.

Finding a CLL specialist

Scott: At first, I didn’t know what a specialist was. I was assigned a hematologist at one of the hospitals here in town. It was a shock to find out that there’s this thing called watch and wait, which just didn’t make sense to me, as I’m sure it didn’t make sense to a lot of other first-time folks diagnosed.

I started doing some research and found that there’s some controversy, I guess, and some progress being made on whether watch and wait is appropriate or not. I started questioning my hematologist-oncologist about it and he didn’t really have any answers for me.

I sought out another hematologist, still didn’t know what a specialist was, and was getting sort of the same thing. “Well, you’ve got about five years to live, but you’re not sick enough to have treatment.”

I got frustrated and, by good fortune, my general practice doc said that one of the premier specialists in the world was coming to Cincinnati and that he is accepting patients for CLL.

I signed up and was one of his first patients here in Cincinnati. Within five minutes of our first meeting, he said, “Yes, we can start you on treatment right away. And I can say with 95% certainty that we can put you in remission and reset your lifespan to pre-diagnosis limits.”

How to Build a Strong Medical Team

How to find the right CLL specialist

Michele: Dr. Lamanna, how can anyone find the right specialist? Is there a list? Lisa had one, but this is a long-term relationship. This is probably the person you’re going to be with for the rest of your life so it’s really important that it works.

At what point do you need to bring a CLL specialist onto your medical team? Do you do it just after you were diagnosed? Do you wait until it’s time for treatment? How do you even know?

We want to ask the doctors because we all seem to have our own opinions as patients. This is not meant to take the place of someone’s local hematologist-oncologist who works in conjunction with them.

Dr. Lamanna: You all have already mentioned a couple of areas. One is these online forums, The Leukemia & Lymphoma Society, Patient Power, and the CLL Society. There are lists of CLL specialists in states all across the country so that might provide a starting point, depending on where you live.

You might be restricted because you need to see someone in the area where you live because of your circumstances and so you want to do local. You have to do what fits you. There are people like Lisa who can travel to another state to see a specialist.

Ultimately, your personality and the personality of another physician have to jive, too. Not everybody may jive with a particular person so that’s another layer to add in.

How to Build a Strong Medical Team

When to see a CLL specialist

Depending on when someone’s initially diagnosed, if you’re not receiving the information so you understand the disease and where you’re at, having that first consultation is very helpful.

If the local physician isn’t spending enough time to explain things because you don’t need treatment and they’re rushing you out the door and saying, “You have a good cancer. You don’t need to see us. You’re great,” that’s not really satisfying to many patients when they’re first diagnosed with any cancer. Sometimes that initial consultation is important.

Another very important time, which Dr. Bachow brought up, is when you’re told you might need therapy. The question is: do you need therapy? What kind of treatment is being recommended? There are new agents and each patient might have a little bit of a different nuance to their disease so that’s really another key point to see a specialist.

Then there are clinical trials. There might be some options that could be really important as well.

Certainly, any time is a good answer, but if you don’t have the ability to do it very frequently, those key time points might be important.

How to Build a Strong Medical Team

Dr. Bachow: As Dr. Lamanna said, a good time is if you’re at diagnosis and you don’t feel like you’re getting all the information that you need to feel comfortable with the diagnosis.

One time that you really should it’s when you’re going to need treatment, but you can also take it a step further — you don’t want to wait too long.

In some cases for patients with very high-risk disease, their disease can grow exponentially and it may be tough to get in to see a CLL specialist. They’re all so great that they’re booked out weeks and weeks and weeks and they’re doing favors all the time, double-booking patients to bring them in.

I wouldn’t necessarily say just when you’re told that you need treatment. You and your doctor should try to talk together. “Am I more likely to need treatment in the future rather than not need treatment?”

Maybe now’s the time to go get more information, hear what trials are out there, and hear what the treatment landscape looks like now. If the time does come, you’re not rushing to see somebody.

Michele: That’s such an important point, Dr. Bachow. You want to have that established relationship in case it is more of an emergent time.

My CLL relapsed really quickly and I was looking for a second opinion because I was given so many choices. That’s the beauty of research right now. We have so many choices between what’s been approved and what’s in a trial. I didn’t have time to find someone. I had to start treatment the next week.

Thankfully, I had a great relationship and established one with Dr. Lamanna. Knowing you, it’s not like I had to wait months to get to see you so it was wonderful. There can be challenges in getting in to see one.

How to Build a Strong Medical Team

Patient’s perspective working with a local oncologist & a CLL specialist

Michele: What are the challenges and workarounds of working with different teams in different healthcare systems? Lisa, what did you experience here? You were working with different healthcare systems.

Lisa: The biggest challenge with the first CLL specialist I went to was communication as well as changing doctors when my first doctor suddenly left for a different facility.

My local doctor struggled with getting calls and emails returned. He would voice a little bit of frustration when I would come in for appointments. He hadn’t gotten the information he needed and if I could call and see if I could get things sent. That was the biggest challenge and part of what made me feel I didn’t quite have my right team yet.

One thing I always heard was to go to one of the world-renowned places for leukemia and lymphomas. My local doctor at the time encouraged me because he was also looking forward to having this be a learning experience for him. I went and it was great. They were wonderful.

I don’t have anything bad to say about my experience there other than it wasn’t the right place for me. It was difficult to travel to and I was hearing frustration from my local doctor. When I first went, I didn’t need treatment. After all the testing they did, I was told I’d probably need treatment in about three years and they were absolutely right.

The first doctor I saw was lovely. Shortly after my first appointment, I ended up getting a letter that she was no longer there and had moved to a different facility in California. Then I was on my second doctor so the next time I went, I was meeting a new doctor again.

I started my treatment there. I did my first course then they sent the protocol home so I could finish here. He was frustrated with the lack of communication. It’s a very big, well-known hospital and doctors are busy so he wasn’t getting responses to emails in a timely manner. You can’t expect anything right away.

What was frustrating to me was that he was frustrated. We ended up finishing after three rounds because that treatment didn’t really work well for me.

Dr. Bachow wasn’t my original local doctor. He came into the picture later. Unfortunately, my local doctor passed away unexpectedly so I was left with this situation where now I didn’t have my team.

The first time I ever went to Dr. Lamanna, Dr. Bachow happened to be her fellow. When we met him, we adored him. We thought he was great. We both went to the University of Florida. We knew he was moving back to Florida.

When I was in this position, I called Dr. Lemanna and she said he was in Boca Raton. I was really lucky. He’s just as wonderful. You need to have trust in both your doctors. To me, the biggest thing is communication.

Nowadays, we have telemedicine visits. If you can’t travel as much, it’s really important to try to get in the system with a specialist so that when they are needed, if your disease does accelerate, you’re already in the system.

I can see Dr. Bachow here and if we have questions, if there’s an unknown, or if we’re unsure, I can see Dr. Lamanna via telemedicine visit through Columbia Health. We can send my lab reports.

It’s the communication, the ease of appointments whether you’re traveling or doing virtual, trusting both doctors and the doctors willing to have a shared patient relationship with each other. That’s what I have been fortunate to find, not once but twice and I feel so grateful for that.

Jeff: I would love to tie two thoughts together. You went through a lot in the beginning. You had to deal with different doctors. You had to deal with travel. You had to deal with different levels of comfort. Ultimately, it was your comfort, your ability to mesh well with the doctor as opposed to being abrasive that guided your decisions. That’s really, really important.

We’ve got two doctors who are enthusiastic and their personalities are top of the scale. That doesn’t always happen with every patient relationship. The goal is a long-term relationship so you have to be comfortable with the team that’s taking care of you.

How to Build a Strong Medical Team

Communication between a local oncologist & CLL specialist

Jeff: How do you coordinate between a local oncologist and a CLL specialist at a distance? This can be a lot of heavy lifting.

Dr. Lamanna: As long as the CLL specialist and the local physician communicate, there are lots of different ways that they can build a relationship. Phone, messaging, and texting are one way of getting records seamlessly. Sometimes via email attachments and faxes.

Remember, different physicians may want to communicate in different fashions, but as long as you can make a connection between the two and they figure out which way works best for them, that’s fine.

Again, as Lisa noted, if there seems to be a struggle, then obviously something’s not working well and that needs to be addressed. You want records and things to be done in a decent time frame, especially if it impacts you.

There are many different varieties to establish that communication given the technology that we have today so it’s not difficult. Technology has gotten better. It’s become easier to communicate so there are a variety of different ways that two physicians and the patient can do that.

Jeff: Dr. Bachow, how do you keep everyone in the loop when everybody’s using different medical record systems? I know we’d like to think that everybody’s on the same page, but that’s not always the case. How do you guide patients? Can you tell us some of your experiences when the platforms don’t sync up quite perfectly?

How to Build a Strong Medical Team

Dr. Bachow: Office notes and consultations should be faxed back and forth. As Dr. Lamanna said, every doctor is different. The best way of communicating is probably more direct: email and cell phone.

Do the two doctors have a prior relationship together? Do they see each other at national meetings? Luckily, the hematology and CLL world is somewhat small and people do know each other quite a bit. The two doctors having a prior relationship is important but that doesn’t always happen.

You have to recognize that doctors are busy. Discuss with your local hematologist-oncologist what kind of changes would really warrant us reaching out to the CLL specialist sooner rather than later. We’re sending office notes, letting them know the most recent CBC results or physical exam, etc. What kind of changes would warrant us to pick up the phone and call them?

Working with other CLL doctors around the country, I also found that not all of them are like that and that’s okay. Everybody’s extremely busy, but some of them are very busy. They’re running a lab or traveling all the time and getting access to them is not always very easy. Sometimes you do have some important questions for them.

I’ve had an experience where I learned that it doesn’t matter how much you email or if you happen to get their cell phone; I’m just not going to be able to talk to this doctor. But I’ve learned to build relationships with that doctor’s staff — the nurse practitioners, physician assistants, advanced clinic nurses — who have direct access to the CLL specialist and they’ve been able to convey information. I feel comfortable with that and as long as the patient feels comfortable with that, then it turns out to be okay.

Michele: Thank you, doctors, for those answers because that is something we all worry about.

Jeff: One of the bright faces that we have on the support group on Facebook is a young lady by the name of Christy and she’s got a story that she would like to tell.

How to Build a Strong Medical Team

Christy’s CLL story

Christy V.: Thanks, Jeff. I was diagnosed with CLL in 2017 and that’s when I was referred to an oncologist. From that point, I started considering seeing a CLL specialist based on things that I had seen online from other CLL patients who said that that made a world of difference in their treatment.

Getting pushback from the oncologist

Christy V.: When I asked my oncologist at the time about seeing a CLL specialist, he pushed back a little bit. He seemed to think that it would be fine to proceed with just my local primary oncologist.

I was a little bit concerned about that because I feel that any patient, regardless of their disease or their diagnosis, should be able to seek a second opinion, especially in this case because CLL is a potentially serious diagnosis. Based on what I have been reading in CLL patient forums and support groups, it’s vital to seek the opinion of a CLL specialist.

Finding a new oncologist & a CLL specialist

Christy V.: Based on the hesitancy of my first oncologist to “allow” me to see a CLL specialist, I determined that it was probably better that I find a local oncologist who is a better fit for me and is more open to working with the CLL specialist.

At that point, I found a local oncologist that’s actually closer to me. I also found a CLL specialist within about three hours so that was very helpful. That got me started and feeling a little bit more confident about my diagnosis and that I was going to get good information.

My CLL specialist works very well with my local oncologist. I have some complicating factors with my diagnosis. I have rheumatoid arthritis and it can get a little bit tricky managing both. It was really important for me that my oncologist, my rheumatologist, and my CLL specialist work together to make sure that we are treating both while not harming one or the other.

Finding a CLL specialist

Christy V.: It’s very important to find the right fit for you. Don’t feel intimidated or feel guilty for switching oncologists or deciding that you need to find somebody who you trust. Not only do they need to have the knowledge to treat your disease, but you also have to be able to trust them. For me, that’s really important.

I have to be able to speak to them, feel comfortable speaking with them, and feel comfortable that they are considering my best interests so that’s why I made the switch.

This is a lifelong illness and sometimes people spend more time studying about a new car they’re going to buy than researching the doctor that they have. I did some research and found a CLL specialist that I like and that my oncologist was comfortable working with and that’s worked out very well.

How to Build a Strong Medical Team

Different opinions among doctors

Michele: What do you do if your two doctors disagree or have differing opinions on the next steps for you? Talk about stress for a patient, right?

Lisa: Honestly, I haven’t had that happen. Should it happen, as the patient, we ultimately have the final say so.

Right now, I have two doctors that I love and trust so much. I would just have to go with my gut and trust in myself. Maybe bring in a third opinion, but sometimes too many cooks… I’d have to see because I have not experienced that.

Jeff: Way back, my first doctor wanted to start treatment immediately and aggressively. My CLL specialist was literally putting up the stop sign and saying, “No. Don’t do that. I helped invent that. It’s old. We’re going to do nothing,” which is a completely different program to talk about.

But, yes, sometimes doctors are going to disagree and like what Lisa said, this is when the patient has to take a deep breath and figure out which voice resonates best with them.

Michele: What do you do when you get two completely different recommendations from two CLL specialists? Dr. Bachow, what happens if doctors have varying opinions about the next steps for approach and care? How can patients and caregivers understand the right way to go? I know this is similar to the last, but it has a little bit of a different nuance.

How to Build a Strong Medical Team

Dr. Bachow: If you’re going to have more than one CLL specialist — and some people get multiple opinions or have multiple people weighing in — there is a good chance that, at some point, there’s going to be a difference in opinion on how you’re treated and that’s not necessarily a bad thing.

The treatment for CLL has become very nuanced and sometimes there’s more than one right answer. If you put yourself in the patient’s shoes, it can be very frustrating and anxiety-provoking.

Speak to each doctor and be frank with them. Say, “I’ve seen other doctors and they’re recommending this. Why would you not recommend that and you’re recommending this instead?”

Something else you can do is if you develop analysis paralysis, if you have so many different opinions and you’re not sure what to do with them, use your local doctor to help bridge them all together. Weigh the pros and cons of each one to help yourself make an informed decision.

It’s a tough situation, but it’s also a fortunate situation in that you have the ability to have multiple opinions from multiple CLL doctors. It can be very frustrating, but it can be managed.

Michele: And local doctors generally see you more so they might know you better.

Dr. Lamanna: It’s very true. There are circumstances when there’s more than one drug that could be totally applied to a particular individual, which is a good thing because it means they have a lot of different therapeutics they can use. There are situations that might be a little different and we have different opinions about that.

Sometimes, there isn’t a particular right answer. But other times, if there’s more than one answer, then from a patient perspective, you’re also looking at other things like side effects of the therapy, social circumstances, and your ability to go to and from the clinic. One therapy might require hospitalization or more frequent monitoring and maybe that doesn’t work with your lifestyle right now.

There’s more than one thing that might also go into choosing an agent. If there’s more than one being offered, the decision will perhaps be more personal and not necessarily due to the specifics of your disease.

There’s no doubt that you can certainly get another opinion but sometimes, that can be a little bit limiting, too, because then it becomes a little bit difficult. As Dr. Bachow noted, that can be challenging sometimes.

When you’re getting five different opinions, then what do you choose? You’re the one who’s faced with that. Usually, it’s not that many differences of opinion, but it does occasionally happen.

Sitting down and talking about the different options with somebody who will be more than willing to go through all those options is important. You can level out the playing field and see where the differences really are and that will help guide you to choose something that works for you.

How to Build a Strong Medical Team

Hematologist-oncologist vs. CLL specialist

Stephanie: Dr. Bachow, you’re in a different kind of group. You’re really working as a CLL specialist. A lot of the local hematologist-oncologists aren’t. There was a question referencing how long someone’s been a hematologist-oncologist and how close they would be to the research.

Dr. Bachow is young and closer to being a fellow at a time when there was a lot of research happening. There were some differences people were seeing locally, depending on if their local doctor was older and more set in their ways and maybe less open to the idea of clinical trials or new methods. Have either of you heard anything about that before?

Dr. Lamanna: To be honest, the relationship that Dr. Bachow and I have is a unique one so that’s a little unfair. He is closer to somebody who’s a true academic than not. He has access to clinical trials and things like that.

You’re talking about folks that are dealing with hematology-oncologists who also treat lung cancer and other things and one or two CLL folks. There’s no doubt that could be more of a challenge.

What it boils down to is having a good doctor who you can communicate with and who takes good and loving care of you. Then a CLL specialist can guide them in terms of the treatment options and help with the management of certain toxicities and issues with drugs that they need to look out for while they’re treating somebody.

They can have a very good physician who’s willing to talk with somebody, who has more experience treating CLL than they do, and really willing to hear them out.

I’m not expecting them to know the data. Somebody willing to understand certain things that I’m looking for or what they need to pay attention to versus somebody who really doesn’t, who is irritated by me calling, who doesn’t want to hear me, who doesn’t want to hear that I’m a specialist, let alone a female because they’re somebody who’s really stuck in their ways and they don’t want to deal with it, that’s a red flag to me.

Unfortunately, I don’t mind telling the patient that I have a problem with that. It’s up to them to choose whether they want to stay with that physician or not; that’s not my call. But if they don’t want to work with me and I’m trying to help the person, then that tells me that there’s a problem, right?

Sometimes we’ll use a call as a vetting, particularly if it’s somebody I don’t know, that I haven’t worked with before, just to see if they’re somebody that’s willing to work with a specialist if the patient needs it. As somebody who does this all the time, I can get a sense that that person is somebody I can work with.

Jeff: The CLL specialist as champion is very, very important for patients to hear. Patients need to know that they have someone in their corner who’s going to work towards their best care.

How to Build a Strong Medical Team

Dr. Lamanna: That’s what you want to do. I know that doesn’t always happen in practice. Some of us are more willing to do that than others.

To be fair, I’m sure not every CLL specialist wants to do that either because that’s a lot of extra work. I don’t want to say that all of my colleagues will be willing to do that, but I do think that most of us who love taking care of CLL patients want the best.

When people come and see me, I don’t stress that they need to stay with me, especially if they’re coming from far away. If they have future questions, they can email me. I recognize that they can’t always make that same connection so I’m really there for them and I’m willing to help. Everybody is a little different.

Dr. Bachow: Dr. Lamanna and I have a unique relationship with regard to CLL. I’m in a community setting where I can’t only see CLL patients, but I’ve been able to develop a reputation and build up my practice where I’m only seeing blood cancers for the most part.

For instance, multiple myeloma, which I’ve had to learn. I’ve had to learn how to reach out and find out who is big in the multiple myeloma field and what are some of the new things. Who can I contact to run cases by, especially for patients who have very aggressive managed care plans that can’t go for second opinions? I have a lot of patients that can’t go for a second opinion. Who can I run the cases by?

My perspective really is finding good people to run cases by, not just send patients for a second opinion. Those that can’t go and have an established specialist, at least. Being able to run new situations by them, they can give you advice on them off the cuff.

Dr. Lamanna: That happens, too, where doctors will just call because they know so-and-so treats this cancer or so-and-so treats that cancer and we have those relationships so they’ll email or just call us. We’ll be helping them and we know that their patients aren’t going to be seeing us. We’re just trying to help them because they need advice on a particular case. Many of us do that as well.

How to Build a Strong Medical Team

Limited options due to HMO restrictions

Jeff: What we’ve been talking about is something that’s actually a luxury. A lot of people have really great insurance that will allow this second opinion, that will allow the consultation with the CLL specialist. And if that doesn’t work, maybe a third, fourth, or, as you said, even a fifth consult.

What happens if you’re in a tightly managed HMO-style program? You’ve been assigned to a hematologist-oncologist at best, but more likely, you’re with a generalist who’s seeing everything from solid tumors to hematology patients.

Barbara, a care partner to her husband who’s had CLL for more than a dozen years, asks, “We are members of a closed healthcare system and are assigned an oncologist. Who needs to be on the CLL team? How do we get them on that team?”

Do you have any words of advice on how to navigate that?

Dr. Lamanna: You might be able to get a free consultation through some of the panels if you’re really strapped and not able to go for a second opinion somewhere due to insurance limitations. There are different ways through different patient advocacy groups to have access to CLL specialists like myself to go over your case for free.

We also take calls from local physicians without having seen a patient because of our relationships with physicians across the country. We’re willing to talk to them and help advise the physician about their patient who’s having issues.

Michele: There are programs to help access a specialist and one that a lot of patients we know have been using is the CLL Society’s Expert Access™, an innovative program offering free consultation to patients, providing them with expert opinions to share with their local treatment team. We urge any patient to consider using this service when they are unsure of their disease status or their treatment plan.

Jeff: It’s a really great program that we recommend quite a lot on social media.

How to Build a Strong Medical Team

Living your life with CLL

Jeff: When I was first diagnosed, my CLL specialist told me that I wasn’t going to die from this disease, I was going to die with this disease and that was actually very comforting to hear. You hear the word cancer and you immediately think death sentence.

Here we are, more than a decade past that, and I had the opportunity to be with my first CLL specialist again. When he gave me a great big hug, he said, “You’re not going to die from this. You’re not going to die with this. You’re going to die from something else,” and it was really, really cool. That’s been like guidance for me.

Go live your life. Go live a great life. What kind of guidance can you give patients and their caregivers as far as living that great life?

Dr. Bachow: Live your life to the fullest. Stay in close touch with your family. If you’re working, continue to work. If you’re still able to, continue with your usual activities of daily living.

The CLL Society, The Leukemia & Lymphoma Society, and different social media networks are involved with CLL. Reaching out to other CLL patients is very important so you can learn that other people are living their best lives with CLL and you can, too.

Dr. Lamanna: I’ve always taught people that this is a chronic disease. People live with many other medical problems on a daily basis, like diabetes, heart disease, and hypertension. Some people take medications every day for some of their other medical problems.

You need to understand that this is a chronic medical condition, you’re living with this like other medical problems, and you move on. This doesn’t mean that this isn’t an important part of your life, but you need to live your life. This is a chronic condition that you can live with and that we can manage.

How to Build a Strong Medical Team

Lisa: Live your life. Enjoy. Do things that bring you joy, that relieve your stress levels, and then just be confident in the team you create once you find it and that can be a journey.

I’m lucky I am able to travel to New York, but I’m also lucky that I have Dr. Bachow here. I can honestly say I’ll be seeing more of Dr. Bachow and not necessarily as much of Dr. Lamanna because of the ease, my trust level in him, and knowing that he’s also well on his way to becoming a CLL specialist. How lucky am I? But I love traveling to New York so I’ll check in with Dr. Lamanna.

Find doctors you trust. Trust in yourself. Advocate for yourself, whether it be insurance, your treatment, or whatever comes up in your health care. Do the best you can.

I had two children get engaged four weeks apart so I’ve been planning weddings. In the midst of all that, we’re building our dream home. We just had wedding one, moved into our dream home, and now I’m well into planning bridal shower two, wedding two, and just enjoying all of it.

What I really find amazing is that 11 years ago, I wasn’t sure I’d be able to do these things. I didn’t know I’d be here. How lucky am I that I am? Hopefully, in the next few years, I’ll be able to say, I’m a grandma.

Jeff: Outstanding. That is the stuff that I love to hear. People aren’t just saying words, not just parroting things. They’re having those moments. Lisa, I am so glad that you are living well. I remember meeting you in that waiting room and it seems like a world away, but so much has changed for the better.

Lisa: We all are.

Jeff: We’re doing that and it’s a great story to tell.

Lisa: And through this pandemic. It was scary for us to get through these last few years and still is. We’re doing it.

Jeff: We’ve got hope for a cure for some of us. We’ve got great treatment programs. We can do this.

How to Build a Strong Medical Team

Conclusion

Jeff: We honestly hope that each of you has taken away useful tips, some clarity, and guidance on how to build a great CLL team and how to work with different physicians on your team. It makes a big impact.

We are so glad that you joined us today and we hope that you’ll look for more programs with more content.

Stephanie: Thank you to all who participated. It was really amazing to hear what everybody had to say.

Doctors Lamanna and Bachow, thank you so much for your time and your dedication to patients and their families. Lisa, hearing about all that you’ve been able to do; really appreciate you sharing your story. And, of course, Michele and Jeff, always a pleasure to work with you, and excited about more collaborations.

When you get the chance, don’t forget to sign up for our newsletter list so you don’t miss any of the content and the latest in these programs. Wishing you all the very best and really hope to see you at our next program and discussion. Thank you!


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The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma

The Future of Multiple Myeloma Treatment: Expert Q&A on Bispecific Antibodies 

A Q&A with multiple myeloma expert Alfred L. Garfall, MD, MS

Explore cutting-edge multiple myeloma immunotherapy as patient advocate Jack Aiello engages with Dr. Alfred Garfall from Penn Medicine. Discover the role of CAR T-cell therapy, bispecific antibodies, and monoclonal antibody engagement in cancer treatment.

Jack Aiello has been living with multiple myeloma for 28 years. In this conversation, he speaks with Dr. Alfred Garfall, a hematologist at Penn Medicine.

They discuss the advancement of immunotherapy for multiple myeloma, the difference between CAR T-cell therapy & bispecific antibodies, and the role of bispecifics in the myeloma toolkit of immunotherapies.


Janssen

Thank you to Janssen for its support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Jack Aiello and Dr. Alfred Garfall the exciting advancements of bispecifics in multiple myeloma treatment.

Introduction

Jack Aiello: I’m Jack Aiello, a 28-year survivor of multiple myeloma and advocate from the San Francisco Bay Area in California

I’m often asked, what did I do to be around for 28 years?

Most of my treatment was [during] my first eight years. I had a tandem autologous transplant, but that didn’t work very long for me. I had chemotherapy treatments and was in a clinical trial [but those] didn’t work too well either.

I had one option left: an allogeneic transplant where donor stem cells are given to me. That’s not done in myeloma these days because [of] its high mortality rate [of] 40-50% just from the transplant. But the reason it did work for me is it gave me a new immune system.

I’ve watched the development of an incredible number of myeloma treatments. The growth of myeloma treatment continues at a rapid pace and the landscape of all of those treatments is really quite incredible.

We’ll be talking about safer ways to use your immune system with treatments called bispecifics that again will use your immune system to fight the myeloma.

We’re happy to welcome Dr. Alfred Garfall, a myeloma expert at Penn Medicine.

Dr. Alfred Garfall: It’s an honor to be here with you, Jack. You’ve been dealing with myeloma for a much longer time than I have, for sure. Probably going back with it before I even finished medical school.

I’m an assistant professor of medicine at the University of Pennsylvania Abramson Cancer Center. I’m part of a group of six physician investigators who focus on multiple myeloma, taking care of multiple myeloma patients, conducting clinical trials with new multiple myeloma therapies, and also doing pre-clinical studies looking at developing new therapies for multiple myeloma.

The success of immunotherapy for cancer, not just in blood cancers but in other cancers, [has] been one of the big success stories in all of medicine in the last decade or so.

Dr. Garfall

I’ve been practicing since 2014. I trained with Ed Stadtmauer, the leader of our program, during some of the early days of CAR T-cell therapy. I remember being a fellow and seeing some of the first results come out from Penn using anti-CD19 CAR T-cells, now an FDA-approved therapy for leukemia and lymphoma.

The impetus for me to get involved in this work as a clinical investigator was seeing some of those results come out and being really inspired by all the progress that was happening in immunotherapy for hematologic malignancies.

Immunotherapies & bispecific antibodies in myeloma treatment

Jack: What are immunotherapies and what are bispecifics?

Dr. Garfall: Broadly speaking, immunotherapy for cancer is any therapy that tries to induce the patient’s immune system to fight cancer. The success of immunotherapy for cancer, not just in blood cancers but in other cancers, [has] been one of the big success stories in all of medicine in the last decade or so.

You can go back even further to allogeneic stem cell transplantation. The whole idea of allogeneic stem cell transplantation, which has been a therapy for blood cancers for decades now, is to utilize the immune system of a stem cell donor to recognize cancer in the patient and try and kill cancer.

You can think of a stem cell transplant or a bone marrow transplant as an immune system transplant. If your immune system has failed to eradicate your cancer or multiple myeloma, maybe if we give you the immune system of another patient, that will be able to recognize your myeloma as foreign and attack it.

That strategy has proven successful for a variety of blood cancers. It’s not used as much now for multiple myeloma for a number of reasons, but the effectiveness of bone marrow transplantation for chronic myeloid leukemia, where this bone marrow transplant procedure is very successful, was one of the founding observations that immunotherapy for cancer works.

What we’ve seen in the last 10-15 years is the success of approaches that are more pharmacological — drugs as opposed to procedures — that can replicate that immunologic effect in a more targeted and safer way. [An] allogeneic stem cell transplant is still a high-risk procedure.

We’ve seen the success of strategies to induce immune responses against cancer play out in a number of different cancers. Most notable of these is melanoma with an immunotherapy approach called checkpoint blockade that can wake up a sleepy immune system against the cancer cells in patients with melanoma.

That same paradigm has played out across a number of solid tumor cancers — lung cancer, kidney cancer, [and] bladder cancer among others— and we’re seeing that approach save lives all the time.

In hematologic malignancies, it’s a slightly different approach to get the immune system to fight cancer. These techniques harness T-cells, which are a part of the immune system, that play a role in fighting cancer but also [in] fighting infections. Approaches of what we call redirecting T-cells.

T-cells are the cells in your body that are trained on specific proteins. These are typically found in bugs that make you sick — bacteria, viruses. It turns out that those T-cells have the ability to kill cancer cells, but in patients with an established cancer, those T-cells aren’t doing the trick.

We want a target on the surface of the myeloma cell that can distinguish the myeloma cell from healthy cells in your body. Then we want to find a way to get the T-cells to recognize that target and kill the cells that express that target, namely the multiple myeloma cells.

Dr. Garfall

These latest therapies that have come down the pike in blood cancers, namely CAR T-cells and bispecific antibodies, redirect all the T-cells in your body away from the virus or bacteria that they might have been designed to treat and towards the cancer cell.

CAR T-cells and bispecific antibodies, redirect all the T-cells in your body away from the virus or bacteria and towards the cancer cell.
CAR T-cells and bispecific antibodies, redirect all the T-cells in your body away from the virus or bacteria and towards the cancer cell.

CAR T-cells and bispecific antibodies do that in a similar way, although there are some important differences between them. [The] approach of CAR T-cells and bispecific antibodies has been successful. We see that in [the] FDA approval of CAR T-cell therapies and bispecific antibodies initially to treat B-cell acute lymphoblastic leukemia then non-Hodgkin’s lymphoma and, subsequently, multiple myeloma.

Difference between CAR T-cell therapy & bispecific antibodies

Jack: As myeloma immunotherapy treatments, how do CAR T and bispecifics differ from one another?

Dr. Garfall: Both these approaches try to get your T-cells to recognize your multiple myeloma cells by a molecule on the surface of the myeloma cell. We want a target on the surface of the myeloma cell that can distinguish the myeloma cell from healthy cells in your body. Then we want to find a way to get the T-cells to recognize that target and kill the cells that express that target, namely the multiple myeloma cells.

How CAR T-cell therapy works

The way that’s done with CAR T-cells is that T-cells are taken out of your body and brought to the lab. Those T-cells are genetically engineered so [they] can recognize that target on the multiple myeloma cells. Those cells are infused back into your body.

With that engineering, those cells will then be able to recognize the target on the surface of the multiple myeloma cells and kill the multiple myeloma cells. It’s a bit of a complex process because in order to create this therapy for a patient, you have to make a product for that particular patient.

Every patient has to have the CAR T-cell therapy manufactured for them using their own cells. No other myeloma therapy works that way where you have the therapy manufactured for the particular patient.

Most myeloma therapies are drugs. That’s a complexity [of] CAR T-cell therapy that’s different from other multiple myeloma therapies, but it’s quite effective. We can talk more about how well it works for multiple myeloma patients, but it’s a really effective new therapy.

How bispecific antibodies work

It really is an amazing feat that you can get the same kind of clinical effects with bispecific antibodies as you can with CAR T-cells but with the simplicity of a pharmaceutical that can be given without that complex patient-specific manufacturing.

Dr. Garfall
Play the video to watch Dr. Garfall explain bispecific antibodies

Dr. Garfall: Bispecific antibodies try and do that same thing but in the form of a drug. A bispecific antibody is a molecule that’s got two arms. One arm grabs a T-cell and the other arm grabs a multiple myeloma cell by recognizing a target on the multiple myeloma cell, just like the CAR T-cell does.

This bispecific can grab a myeloma cell with one arm, grab a T-cell with another arm, bring them together, and force that T-cell to recognize the multiple myeloma cell.

How bispecific antibodies work
How bispecific antibodies work in cancer

It’s the same basic strategy as CAR T-cells in that we’re trying to get the T-cell to recognize the myeloma cell, but you’re doing it in the form of a drug rather than through this complex genetic engineering process. That has the advantage of not requiring T-cell extraction and patient-specific manufacturing.

It’s a medication, like daratumumab or elotuzumab. It can be pulled off the shelf and given to a patient. You can get very similar levels of T-cell activation against multiple myeloma with bispecific antibodies that you can get with CAR T-cells.

It really is an amazing feat that you can get the same kind of clinical effects with bispecific antibodies as you can with CAR T-cells but with the simplicity of a pharmaceutical that can be given without that complex patient-specific manufacturing.

FDA approval of CAR T-Cell Therapy & Bispecific antibodies

Teclistamab

Jack: We have one bispecific antibody called teclistamab, also known as Tecvayli, that’s currently FDA-approved. How is it given? Who is it given to? What are the typical responses and how long do they last?

Dr. Garfall: Teclistamab is the first approved bispecific antibody for multiple myeloma. It recognizes this molecule called BCMA.

A lot of the new immunotherapies against multiple myeloma recognize BCMA on the surface of myeloma cells. We have two CAR T-cell products that are approved for myeloma called Abecma and Carvykti; they recognize BCMA. Then teclistamab, a bispecific antibody, also recognizes BCMA.

Administration of teclistamab

Teclistamab is given as a subcutaneous injection, which is quite remarkable if you think about how simple it is compared to CAR T-cell therapy. It’s impressive progress in terms of our treatment options to have that kind of potent immunotherapy that can be administered as a subcutaneous injection.

These bispecific antibodies are actually more potent in terms of how they activate the immune system than something like daratumumab. The dose of the antibody is quite a bit lower. While Darzalex has to be given as that long, three-minute subcutaneous injection, teclistamab is just a really quick subcutaneous injection. But that’s a minor point.

It’s given as a subcutaneous injection once a week. [In] the clinical trial, it’s been shown that you can extend dosing to every two weeks or even every four weeks. We’re going to get more data on less frequent dosing. But right now, the way it’s approved by the FDA is as a weekly subcutaneous injection.

Dosing of teclistamab

Because of some of the risks of teclistamab and the concern that it might activate the immune system a little too quickly and lead to some side effects, the first couple of doses [is] given as little steps up. You start with a small dose. Then a couple of days later, you get a medium dose. Then a couple of days later, you get the full dose.

Those first few doses are typically given in the hospital so that if [a] patient’s immune system gets a little bit overactive, that can be managed quickly. But that risk seems to be really confined to those first few doses.

Once you get past those first few doses, you really don’t have that risk with ongoing dosing. It can be given in the outpatient clinic without concern for toxicity the rest of the time that you’re on the medication.

The way that it’s given right now is that you keep getting it as long as it’s working. We may hear more about alternative strategies that don’t give it forever. Right now, as long as it’s working, patients continue to get the medication on a weekly or every two-week basis.

That’s what is so exciting about medications like teclistamab and CAR T-cells.

If these therapies can show so much promise in patients whose myeloma has become really, really aggressive and refractory to therapy, we think that there’s going to be even more impact when we can use these therapies a little bit earlier on in the disease course and perhaps even in combination with other therapies.

Dr. Garfall
High response rate to teclistamab

It’s an accelerated approval so it hasn’t had the big phase 3 clinical trials that compare it to other therapies for long-term outcomes, like how long people live with myeloma [and] how long it keeps the myeloma under control. Those studies haven’t been completed yet.

It showed really promising activity just in itself in patients with myeloma that were running out of treatment options. It showed a response rate of about 65% as a single medication, which is really impressive as a single medication. Most of these responses were really good responses. The vast majority were either very good partial responses or complete responses.

Almost all patients who responded to the medication had at least a 90% reduction in the amount of multiple myeloma in the body. That’s really impressive for patients who are running out of treatment options, whose myeloma had become resistant to all the standard medications.

For a single drug to have that kind of response, especially with the simplicity of subcutaneous injection, that’s really promising. We’re really excited that it’s out there now and we’re able to use it to treat patients who are not on the clinical trial.

The response rate [is] that much higher [and] robust in terms of 90% reductions in myeloma. We’ve learned [with] Velcade and daratumumab, once we got past those phase 1 studies, and those medications have been moved into earlier lines of myeloma therapy and combined with other therapies, that progress has led to many, many years of improvement in the expected survival of multiple myeloma patients.

That’s what is so exciting about medications like teclistamab and CAR T-cells. If these therapies can show so much promise in patients whose myeloma has become really, really aggressive and refractory to therapy, we think that there’s going to be even more impact when we can use these therapies a little bit earlier on in the disease course and perhaps even in combination with other therapies.

Daratumumab and Velcade showed 30% response rates initially. When you started combining them and moving them into earlier lines of therapy, we saw those benefits magnified many times. We’re optimistic that we’re going to see that same trend with some of these newer immunotherapies.

What are the side effects of bispecific antibodies in multiple myeloma?

Jack: Can you talk about the side effects of bispecifics?

Dr. Garfall: This is where some of the complexity comes in. We do worry when the medication is given that it can activate the immune system too quickly and that could lead to some complications.

Cytokine release syndrome (CRS)

In its simplest form, cytokine release syndrome (CRS) is just some fevers but if it gets out of hand, it can progress to difficulty breathing, low blood pressure, [the] potential to be in the intensive care unit, and even potential for patients to even pass away from this complication.

If you look across these types of therapies and different diseases, there have been patients who have passed away from cytokine release syndrome (CRS) getting out of hand. That’s why patients are watched in the hospital with those initial couple [of] doses.

The experience with teclistamab has been very favorable in that patients who get CRS for the most part have it in a mild to moderate form that is very manageable. We have not seen patients in the teclistamab studies pass away from CRS complications. But in theory, we know it’s possible and that’s why patients are in the hospital.

If somebody has a fever after they get teclistamab and it starts to get a little out of hand — maybe it’s not just one fever, but it progresses to two or three high fevers — there are really good medications we can give to calm down that inflammation. Then you can allow subsequent doses to proceed and still get the same therapeutic benefit against the myeloma but without additional fevers and cytokine release syndrome.

We think of this as a very manageable complication. It is the same kind of thing that can happen after CAR T-cell infusion and we manage it [in] very similar ways.

Right now, its use is restricted to places that have expertise in handling that complication. Not every oncology office is hooked up to a hospital with a specialized oncology unit that’s capable of managing some of these complications. In our region, it’s mainly the academic centers that are using this medication.

There are a number of bispecific antibodies that are being developed not just for multiple myeloma but for lymphoma and other cancers. With time, I do think that the oncology community is going to get more comfortable with these toxicities and have pathways in place to handle them even at a community center or community hospital so that these drugs are available not just to patients who are connected to a big center but to patients all around the country and world.

Susceptibility to infections

Dr. Garfall: There [are] inflammatory reactions that can happen with the first few doses and, fortunately, those are confined to the first few doses and not an ongoing problem.

As patients get this medication for months and months though, we’ve learned that it is immunosuppressive even as a single medication.

We do worry about infection over the long term. Infection is a concern we have in any multiple myeloma patient with any therapy, but we do think the risk is a bit higher with teclistamab and other bispecific antibodies that target BCMA.

There are some things we can do to manage that risk. We generally recommend that patients take some prophylactic antibiotic against pneumocystis pneumonia. The most common way we handle that is to give Bactrim, which is an antibiotic that’s very good at preventing that type of pneumonia.

We give patients IVIG. IVIG is antibody replacement therapy. Think of it just like if your red cell count gets low, we can give you a red cell transfusion. If your platelet count gets low, we can give you a platelet transfusion. If your antibody level gets low, we can give you an antibody transfusion. Intravenous immunoglobulin is basically a transfusion of antibodies that can raise your antibody levels.

Teclistamab kills the normal plasma cells in the body. We think of myeloma plasma cells as cancerous plasma cells, but your body also has normal plasma cells. The normal job of plasma cells in your immune system is to make the antibodies that help you fight infection.

[For] patients who get teclistamab over the long term, the drug really lowers the level of normal plasma cells in the body and therefore lowers the amount of normal antibodies being produced in the body. We can get around that by giving patients periodic transfusions of antibodies that have been collected from donors.

IVIG can be dosed every one to three months to maintain antibody levels at a level that preserves some of your immunity. But that does add complexity to this otherwise simple therapy.

While the drug itself is a simple subcutaneous injection once every one to two weeks, when you throw in that you may have to get IVIG therapy every couple of months, it does add to the burden, cost, and, even a little bit, the risk of the therapy. But it’s an important measure to reduce the risk of infection with teclistamab because we have learned that patients getting teclistamab over the long term are at significant risk of infection.

Jack: In the past, there were shortages of IVIG. Is that still an issue or do we not worry about that anymore?

Dr. Garfall: Periodically, there have been shortages of IVIG in certain parts of the country. During the pandemic, I think there were some shortages.

Also, IVIG is quite expensive. We sometimes have to fight with insurance companies to get it covered.

IVIG is more or less available in different parts of the world. We’re fortunate in the US to be able to get it for most of our patients, but it’s not as readily available in other places so that is a significant issue we have to worry about.

Possibility of giving bispecific antibodies for a fixed duration

The myeloma research community has been so impressed with the quality of the responses. We’re beginning to think maybe we don’t need to continue this medication forever. Maybe it’s a medication that can be given for six months, nine months, a year or so, and, during that time, you’re going to have to have all this really proactive management of infection risk.

If your response is really good, as many of these responses are, maybe you can stop the therapy and the myeloma will remain under control. Without the medication, the immune system will start to build back up and you can have the best of both worlds — good myeloma control and an intact immune system.

Some patients on the clinical trial had to stop treatment for one reason or another. Even after stopping treatment, a lot of those patients remained without any myeloma progression for many months.

I think that is going to be a focus of the next generation of clinical trials: trying to figure out how long we have to give these medications. Can we find a balance between long-term infection risk and myeloma control with a fixed duration of therapy?

Cevostamab study

Another bispecific antibody being tested right now that has a different target is cevostamab. The way those clinical trials were done was it was given for a year and then stopped. That one’s not FDA-approved yet. We got some results from the initial clinical trial and we’re starting to see how those patients are doing after they’ve stopped it.

In patients who had good responses after one year of therapy, none of them have really had the disease grow back if they had a good response before stopping it. That’s really promising.

As we learn more about these agents, maybe we won’t have to give them forever and deal with years of immunosuppression. Maybe we can give them for a fixed period of time and reduce the risk of infection.

Treating with more than one bispecific antibody

Jack: Why do we need more than one bispecific? What’s the benefit of that for patients?

Dr. Garfall: There are a few potential benefits. Both CAR T-cells and bispecific antibodies need to recognize the multiple myeloma by a molecule on the surface of the multiple myeloma cell. The one that’s been investigated most intensively is BCMA. Teclistamab and the two CAR T-cell products that are approved recognize BCMA. There’s a couple [of] others that are in development that recognize BCMA.

What we’ve learned though is that if you give a therapy that targets BCMA long enough, the myeloma may get smart and get rid of BCMA. What you’ll have is myeloma that’s growing. It’s evading the treatment. The myeloma has adapted and masked or turned off the BCMA molecule so the drug can’t recognize the myeloma anymore.

What’s great about other bispecific antibodies that are being developed is that they recognize a different target on the myeloma cells. Even a myeloma that is no longer expressing BCMA might be recognized by some of these other bispecific antibodies.

Bispecific antibodies target different markers on myeloma cells, offering recognition even when BCMA is no longer expressed.
Bispecific antibodies target different markers on myeloma cells, offering recognition even when BCMA is no longer expressed.
Talquetamab (bispecific antibody)

The next one to probably be FDA-approved is a drug called talquetamab, [which] recognizes a molecule on the surface of the myeloma cell called GPRC5D.

There are some patients who have received teclistamab, it stopped working, they’ve gone on to get talquetamab, and the talquetamab worked. [This] suggests that patients can really benefit from therapy with one bispecific antibody for a while, have it stop working eventually, and then be able to move on to benefit from another bispecific antibody that targets a different target on the myeloma cell.

Teclistamab and some others target BCMA. Talquetamab targets GPRC5D. Cevostamab targets FcRH5. We’ll have this toolkit of different potent immunotherapies that all recognize multiple myeloma in different ways. That gives us more ways to attack the myeloma with different targets and makes it harder for the multiple myeloma to evade all the therapies we have.

Jack: Both of the CAR Ts also target BCMA. If I relapse from a CAR T, does that mean that a drug like teclistamab is not really available to me because I may not have BCMA anymore? Or does the BCMA marker come back after a certain length of time?

Dr. Garfall: We’re still learning a little bit about that, to be honest. These are all new therapies. We haven’t had tons of patients who have progressed on one and gone on to receive the other.

This is a little bit premature to say but we are learning that patients who progress after CAR T-cell therapy that targets BCMA probably still have some BCMA on their myeloma cells for a variety of reasons.

It’s been reported at the 2022 ASCO annual meeting that a small group of 20 or so patients who had previously received a therapy that targets BCMA — for example, a CAR T-cell — if they go on to get teclistamab, about 50% or so of them will respond. Now that’s a small number of patients so maybe the actual percentage is a bit higher and lower, but it’s not hopeless.

Someone who progresses on a BCMA-targeted CAR T-cell could potentially benefit from a BCMA-directed bispecific antibody. There are even some results the other way around — patients who have progressed on bispecific antibodies and gone on to respond to CAR T-cells.

It is worth considering. These are really patient-by-patient decision-making processes that you go through with your doctor about whether it makes sense to try some of these.

We’re starting to get more tools available. There are some ways on a bone marrow biopsy to look and see whether your myeloma expresses BCMA. I hope in the next couple of years we’ll have some blood tests that can give us a hint at that so we can be more sophisticated and precise in our treatment decisions based on these tests that we can do. We’re not there quite yet, but it’s definitely within reach.

Where are bispecifics administered?

Where are bispecific antibodies administered

Jack: Do you think patients will have a chance of getting bispecifics from the community oncologist rather than having to travel? Or will patients always have to go to a medical center for those first weeks of treatment?

Dr. Garfall: I’m optimistic that this will not be confined to the big medical centers, but it might take a little while. With any new drug, it takes a little while for physicians to get comfortable with it.

There are special registrations you have to do to be able to give this drug in your practice. There’s [a] certification process you have to go through with the FDA called a REMS (Risk Evaluation and Mitigation Strategy) program where you, your pharmacy, and your office have to take some training to demonstrate that you understand the particular risks of this medication and how to manage them.

I’m optimistic that it will get there, especially because this is not just teclistamab. It’s not just this one drug. It’s not just for multiple myeloma. There’s already another FDA-approved bispecific antibody that’s approved for lymphoma. There’s probably going to be more coming down the pike for lymphoma. Once there’s that kind of momentum behind a type of medication, everybody starts recognizing that it’s really important to figure out how to give it not just in these larger centers but in the community.

I also think we’ll start to see some trials of outpatient dosing. Everybody may not [have] to be in the hospital. Certain patients who are a little sicker and [have] more problems may need to be in the hospital.

Your typical patient who is just starting to progress and not having major complications of disease progression yet can maybe be safely dosed in the outpatient setting with a lot of close monitoring. These are some things that we’ll figure out over time.

Jack: It’s only approved for patients who have had three or four prior lines of treatment, right?

Dr. Garfall: That’s an important point. It’s this accelerated approval for patients who have had four or more prior lines of therapy, who are running out of options. So far, it has only been tested in a phase 1 and a phase 2 trial.

There are phase 3 trials going on that will hopefully confirm that this is a good medication that helps multiple myeloma patients live longer with the disease. I think that will open it [for] use a little bit earlier on in therapy rather than having it be reserved for patients who are running out of options.

Treating high-risk patients with bispecific

Treating high risk patients with bispecifics

Jack: High-risk patients are more difficult to treat than others. How do they do on bispecifics and immunotherapies in general?

Dr. Garfall: When you’re talking about a patient population that is in four or more prior lines of therapy, in some ways, those are high-risk patients. Even if a patient was low risk when they started with multiple myeloma, 10 years down the road after lots of prior therapy, that disease can be pretty aggressive.

When you see response rates of 60-plus percent with a single medication in patients who have had that much prior therapy, that includes a patient population that has [an] aggressive disease whether they were officially designated as high risk when they started or not.

We see patients with extramedullary disease — multiple myeloma started to grow as tumors outside the bone marrow. Those patients maybe have a little lower response rate to the medication, but many of them do respond. This is still a real option to try for patients, even with some of those higher-risk features, but the response rates might not be quite as high.

We’re still waiting to see how long these responses last and whether there are any meaningful differences between different groups of multiple myeloma patients.

What was also really encouraging from the teclistamab data is that if you look at patients who are responding to the medication, a year later, about 70% of the patients still have ongoing disease control. The medication’s still working for them.

We’re still waiting to see how long that can go. We have patients in our practice from the clinical trials who’ve been on the medication for three years and it’s still working.

Now, I bet that’s another way that some of the higher-risk patients will be different from the standard-risk patients. Even though it’s working for them initially, maybe the responses aren’t going to last as long. That’s true of most myeloma therapies. Patients with more aggressive disease may respond really well to all the medications, but those responses may not last as long.

Updates on bispecific antibodies

Jack: What are you interested in hearing regarding bispecifics from the American Society of Clinical Oncology (ASCO) Annual Meeting and European Hematological Association (EHA) Congress?

Dr. Garfall: I think we’ll get some updates with longer-term follow-up, on teclistamab and other bispecific antibodies, about how long these responses last. They haven’t released the actual data to know whether any new bispecific antibodies will release promising data.

I imagine we’ll hear some data on the use of CAR T-cells in earlier lines of therapy. All these therapies that are initially tested in patients who have run out of options [are getting] tested earlier on.

In the last six months or so, we have had the publication on the use of Abecma, the first CAR T-cell approved for myeloma, in patients with two to four prior lines of multiple myeloma therapy. This was one of the first phase 3 studies with Abecma where they really compared Abecma to the standard therapy. They found that Abecma worked better than the standard therapy.

I think we’ll be hearing soon about the first study with Carvykti, which is the second anti-BCMA CAR T-cell to be approved. I believe there’s been a press release that it’s also favorable. When you compare Carvykti in patients with one to three prior lines of therapy earlier on, for that first or second relapse, Carvykti seems to work a lot better compared to one of the standard options.

We’ll hopefully get more data on how much better and more detail about those responses. In the next year or so, maybe we’ll start to see some of the results from ongoing studies with bispecific antibodies.

It’s really exciting. It’s going to be confusing for us physicians to try and figure out when to use which one of these new therapies. But overall, it’s really exciting to have all these new options coming down the pike so quickly for our patients.

Conclusion

Jack: I learned an awful lot about bispecifics, an exciting treatment paradigm for multiple myeloma. Dr. Garfall, I really appreciate it. Thank you so much for spending time with us. I look forward to learning more in the future.

Thank you for joining us on The Patient Story.

Dr. Garfall: It’s been a real pleasure. Thanks so much for the invitation. It’s so nice to speak to you. I hope this was helpful.


Janssen

Special thanks again to Janssen for its support of our independent patient education content. The Patient Story retains full editorial control.


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Categories
Active Myeloma Cancers Chemotherapy Clinical Trials Darzalex (daratumumab) dexamethasone KRD (Kyprolis, Revlimid, dexamethasone) Multiple Myeloma Pomalyst (pomalidomide) Stem cell transplant

Julie’s High-Risk Multiple Myeloma Story

Julie’s High-Risk Multiple Myeloma Story

Julie C.

Julie’s initial symptoms were somewhat atypical for high-risk multiple myeloma.

She started getting food aversions, queasiness, and fatigue. She then visited her gastroenterologist who, after ruling everything out on his end, did some blood work, which showed that she was anemic.

After being sent to a hematologist, she got a bone biopsy and was eventually diagnosed with high-risk multiple myeloma.

She voices how she processed her diagnosis, how her disease progressed after different treatments and how she decided to be part of two clinical trials.


This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


  • Name: Julie C.
  • Initial Symptoms:
    • Queasiness
    • Food aversions
    • Lack of appetite
    • Fatigue
  • Treatment:
    • Stem cell transplant with KRD induction therapy (Kyprolis, Revlimid, dexamethasone)
    • Chemotherapy: D+PD (Darzalex Faspro, Pomalyst, dexamethasone)
    • Talquetamab (clinical trial)
    • Cevostamab (clinical trial)

It’s so important to take charge and have control where you can. You can’t control this disease, but you can control how you respond. You could become knowledgeable and make decisions.

Julie C. timeline
Julie C. timeline
Julie C. timeline


Introduction

I have two adult children: a 30-year-old daughter and a 32-year-old son and a wonderful husband. We’re going on 34 years together.

We are hoping to spend several months in Florida, which I haven’t been able to do before because of my treatment. It’s a real pleasure.

I love to golf, walk, work out, and travel. Although I didn’t do too much of that recently, I hope to get back to doing that.

Julie C. family
Julie C. outdoors

Pre-diagnosis

Initial symptoms

Early July 2020, I was feeling queasy. I had a lot of food aversions and fatigue. I thought it was my stomach so I went to see my gastroenterologist. He did an endoscopy and had me get an MRI. He ruled everything out on his end, but he did do some blood work. He was concerned about those results and sent me to a hematologist. That’s when everything started moving along toward getting me diagnosed.

They weren’t the typical symptoms, as most myeloma patients have bone pain and other things so I guess that’s a little odd. Something was off in my body. I felt like I had morning sickness, but I knew that wasn’t possible!

I really am so grateful that he ordered the blood work; the hematologist took it from there. He had me come back for a couple of visits for more labs and then he said I needed to have a bone marrow biopsy. At that point, I knew something was really wrong. I felt it.

High-risk multiple myeloma diagnosis

We went in for the results. My husband came with me. The hematologist told me I had multiple myeloma. I didn’t know what that was. I figured it’s a blood cancer, but I’d never heard of it.

My initial feeling was, “Okay, tell me what I need to do to get through it and get cured. I’ll do whatever I have to do.” Little did I know what was ahead of me.

He generally described what it was. I had lambda free light chain and I had 80% plasma cells. He didn’t get into too many of the specifics, but he referred me to a top myeloma specialist who happened to be about 30 minutes away from me.

My myeloma doctor went into great detail about my disease. He was writing on a chalkboard. The most important thing is t(14;16), translocation (14;16), and beta 2 microglobulin of 6.2. I’m saying, “What?” He says, “You have a high-risk disease,” which he got into a little bit.

He explained that people who have certain cytogenetics with the disease may progress quicker from their remissions, have a shorter duration of response, and the disease could be a little more aggressive. He explained all of that as it related to how he was going to treat me.

Julie C. with husband
Julie C. travel
Reaction to the diagnosis

Of course, I did what you’re not supposed to do: Google everything. What is high-risk multiple myeloma? What does it all mean?

All of the terminologies you read on Google are not good because they talk about progression-free survival. What is that? “Wow, am I not going to make it? Am I going to have only three years? What does this all mean?”

I was fearful. I was fearful of what was to come. I needed to understand it.

I did a lot of research after that appointment. I went online — The Multiple Myeloma Research Foundation, the International Myeloma Foundation, The Lymphoma & Leukemia Society — trying to get as much information and learn as much as I could, which was helpful to me.

I wanted to have some control in a situation where you don’t have control.

Julie C. family
Breaking the news to the family

My kids were actually living with us at the time because of COVID. I explained it to them. I said, “This is treatable.” I didn’t tell them it’s not curable.

My family’s been incredibly supportive. My husband, especially during the induction period, was with me at every appointment. He was understanding. He was totally, totally supportive. I’m very grateful for that.

Julie C. with husband
Julie C. travel

First-line treatment

Discussing the treatment plan

My myeloma specialist explained the induction therapy. He recommended KRd: Kyprolis, Revlimid, and dexamethasone. Then I would go for a stem cell transplant.

Because I was high-risk, he was planning on a tandem transplant, which would happen three to six months after my initial transplant.

I trusted him. My sense was when you’re first diagnosed, there’s a standard regimen to have induction therapy. My impression was there were a couple of drugs you could change up. He said that regimen would be best for high risk and I trusted that.

Julie C. family
Getting a second (and third and fourth) opinion

Incidentally, I did get a lot of opinions early on before I decided on going to Hackensack University Medical Center in New Jersey. I had a consultation from one of the big hospitals in New York. They agreed that was a good treatment plan as well.

I know myself. I need to get all of the information. I need to feel comfortable. It is just my personality, really wanting that reinforcement to know I’m making the right decisions.

During that first year after I was diagnosed, I probably had four or five myeloma specialists, very well-renowned people, where I had second, third, and fourth opinions. Whenever I had to change a drug regimen and make decisions, I wanted to get input.

There are a lot of options for myeloma. Everybody’s myeloma is different and it can be treated in lots of different ways.

Induction therapy

I started my treatment in October 2020. My last treatment for induction finished in December.

I started preparing for the stem cell transplant at the end of December.

Julie C. travel
Julie C. with husband
Side effects from the induction therapy

I actually only had two cycles of induction. One of the reasons was that I was getting fevers. Whenever I had the treatments, I would always have a fever the next day.

The first one was like 102°F. I would take Tylenol and it would go down. Subsequent ones weren’t as high, but the doctor was concerned about that.

They weren’t sure what caused it. They think it may have been the Kyprolis but they weren’t sure.

I had night sweats with the induction. I just changed my pajamas often!

Preparing for stem cell transplant

There’s a special stem cell transplant doctor who handles the transplants. It’s a whole process where they need to collect the cells.

In order to stimulate the growth of the stem cells, I was taking Zarxio probably eight or ten days in a row, giving myself injections. After, I had to get chemo.

They told me I would lose some hair in that process. I chose to get a short haircut at that time in order to ease that feeling of losing my hair.

They collected the stem cells. A week or two after, I was admitted to the hospital and they put in a central line.

I received melphalan, the high-dose chemo, the next day. I was admitted for about 12 days in the hospital.

Post-stem cell transplant

I ended up not having the tandem. I did not sustain remission after my stem cell transplant. My doctor said it happens to only about 10% of patients.

Three months after my stem cell transplant, I had progression of disease. I don’t know the medical reasons.

They weren’t going to proceed with a tandem stem cell transplant since I didn’t sustain the first one.

Julie C. stem cell transplant
Julie C. stem cell transplant
Reaction to the stem cell transplant not working

The first year after my diagnosis was really difficult. I didn’t sustain remissions and I understood that that was not like most people.

I was worried. Will I find something that’s going to work?

I was meditating. I was trying to become more spiritual. This was all during COVID so I was home. It was challenging emotionally.

Conversations with the family

Everybody was really supportive. My kids were fabulous. My siblings and mother live in different cities. They were always calling me to see how things were going.

I gradually started telling more people in my circle of friends about my disease. I would have Zoom calls with friends who I hadn’t talked to in months. There were a lot of positive things with that.

I established a relationship with a nurse navigator at the MMRF who was a godsend to me. She was always there for me to talk to if I needed to get another opinion or her thoughts about medications and whatnot.

I also have a myeloma coach who’s fabulous, who I initially spoke to quite a bit during COVID asking, “What could I do to pass the time?”

Second-line treatment

My myeloma team recommended a standard-of-care regimen, which was daratumumab, Pomalyst, and dexamethasone. At that point, I received a lot of opinions from other myeloma experts to really see if this should be the route. That was the route I took.

We started on that regimen. I was going to the hospital every week at that point.

They gave me Revlimid the first week because I had to get the insurance company’s approval for Pomalyst. For one week, I had Revlimid then they switched over to Pomalyst in that three-drug combination.

I had two or three cycles and then I started progressing again. Another decision point.

Julie C. travel
Julie C. travel
Mental & emotional state

I did respond initially but then the disease started progressing after that. Emotionally, I was scared. Will we find something that’s going to work?

I went for a consultation in New York City. I’m very fortunate to live in the New York City tri-state area with some top hospitals that are accessible to me. I know a lot of people in the country don’t have that. I was very lucky to be able to get in-person appointments with some of these specialists.

I went to Memorial Sloan-Kettering. The doctor there concurred with my doctor at Hackensack, agreeing on what the next thing should be. We talked about adding selinexor to the mix or going on a clinical trial. The decision point was shall I go on selinexor or go on a clinical trial.

They talked to me about the side effects of selinexor. I asked for their recommendation. The majority thought a clinical trial would be the best thing for me.

Third-line treatment

Exploring a bispecific clinical trial

It was the hot new area. A lot of developments and a lot of buzz. I didn’t know a lot about it. I didn’t understand immunotherapy or bispecifics but later it was explained to me.

I trusted my doctors. They thought the clinical trial was the best route. I did put trust in them.

I can’t say there was one thing that they said that made that decision for me other than feeling like they all felt it was the best thing for me to get on to a clinical trial.

At that point, Hackensack was trying to find me a clinical trial there, but they didn’t have anything available for me. One of the doctors on the team told me to talk to one of the top people at Mount Sinai, who’s still my doctor, about clinical trials.

I had a Zoom call with him and he said, “We have a clinical trial for you that you’re eligible for and it’s called talquetamab.” He discussed it with me, explained what the bispecifics were, and I ended up getting into that trial at Mount Sinai.

Julie C. family
Julie C. with husband
Joining the talquetamab clinical trial

You go through a screening process. You meet with the research nurses and the doctor. They let you know about the side effects. I was well aware of what those would be.

The screening was a couple of hours. They go through a lot of specifics with you about the trial and what’s involved. A lot of information. Then you sign a 35-page consent form.

My husband and I talked about it but not with the rest of my family.

I did have an idea about clinical trials from some myeloma support people. I figured five years from now, maybe I’d need one. I didn’t realize my disease would be that aggressive and moving so quickly.

I had spoken to other patients that my coach had put me in touch with who had the same cytogenetics as me. I wanted to reach out to people who had similar myeloma.

I did speak to a couple that had been on clinical trials and had myeloma for 20 years. Some of them were on the Revlimid trial and they talked to me about what that felt like.

I felt very comfortable participating in that way, that it could help other people and, hopefully, help me.

I started the testing at the end of August then I was admitted. You have to go into the hospital for the first couple of weeks for step-up doses so that was in September.

I was on it for two cycles and then my disease started progressing again.

For this particular trial, you stay in the hospital for 10 days. You’re admitted to the hospital because one of the side effects is cytokine release syndrome or CRS, which happens with these bispecific antibodies. Your body has to adjust to the drug and they have to treat you for the CRS in the hospital.

Experiencing cytokine release syndrome (CRS)

I had grade 1. It wasn’t horrible.

It happened the day after I received the first treatment. I had a fever and feeling like I have some sort of virus. They gave me tocilizumab. Immediately, the fever went away. It was a miracle drug.

Julie C. travel
Julie C. family
Side effects of talquetamab

They told me that some of the side effects would be related to the skin, the hair, and the sense of taste. I experienced all of those side effects.

They had many patients on that trial in Mount Sinai. I had loss of taste and dry mouth. My fingernails split and fell off. The top layer of skin on my hands and feet came off.

It was difficult with those side effects. But I knew what the risks were. I knew I could possibly get them.

It seemed pretty quick. Within the month, the first thing I noticed was my hands got very opaque and then the skin started peeling.

The dry mouth came later. The loss of taste a little bit later. There was a little bit of a delay in the nails. They got worse gradually.

Nothing resolves them. They don’t go away.

Managing the side effects

The nurses were very good about giving me some over-the-counter things that worked.

There was a patient who was also on the talquetamab study, a woman about my age. She was willing to talk to other patients. We bonded.

She told me about creams, lotions, and things she used that helped. One was a prescription, Biotène for my dry mouth. There were some lozenges.

There was support there. The research nurses are all fabulous about giving you that information.

Julie C. travel
Julie C. family
Bispecific antibodies for multiple myeloma

Talquetamab was twice a month. There would be a pre-treatment of Benadryl and Tylenol. I would get the medicine through IV, which would last a few hours. I stayed afterward for observation then went home. That was every couple of weeks.

It was a full day because when you start the day, first they take your labs and you have to wait an hour for the results. If your blood counts are good, they proceed. The pre-meds are an hour before you get the infusion so you’re waiting for that.

Basically, I looked at it as time to just hang out and watch the latest movies on Netflix. It was kind of a relaxing day.

Discovering plasmacytomas

When I was diagnosed in October, they found a couple of plasmacytomas from the MRI I had. I had a plasmacytoma in my pancreas as well as in my manubrium.

At the time, they weren’t sure it was a plasmacytoma on my pancreas. They weren’t going to do a biopsy; that was too invasive.

After my induction therapy, the tumors shrunk. They realized they were plasmacytomas most likely from the myeloma.

When I was inpatient for talquetamab, one of the side effects was very intense pain in my abdomen. The doctor explained that the medicine was targeting the pancreas because that was where I had this plasmacytoma, which I thought was fascinating.

Julie C. friends
Julie C. sister's MMRF walk
Julie C. family

Fourth-line treatment

As soon as I started seeing my numbers going up a little bit, I was alarmed. I wasn’t waiting till they got to the level they said is progression of disease. It was close.

I talked to my doctor. He recommended another trial, another bispecific called cevostamab. I asked for another opinion from another myeloma specialist and was actually considering going on a different bispecific antibody trial.

Each bispecific antibody has a different target. There’s BCMA, which probably many patients have heard about with CAR Ts. Talquetamab has a different target and cevostamab has yet a different target.

I was contemplating: should I go on a BCMA bispecific? Is that something I should consider?

My doctor at Mount Sinai said, “Look, there are only five slots for cevostamab at Mount Sinai. There’s one slot that opened up and you could have this slot.” He thought I should take it so I took it.

At that point, I was so uncertain about what would work so I went on the cevostamab trial.

Joining the cevostamab clinical trial

I don’t think I had to do all of the pre-tests because some of them were still good from the last study. They did require a brain MRI so I had that.

I was anxious to see if I was going to respond to this medicine. The only thing I was focused on was: am I going to respond? I was very anxious to see if it was going to work.

It was in December 2021. I was inpatient, but it was a different protocol from talquetamab. You’re inpatient three weeks in a row for only four days each time and then you’re discharged. They do step-up doses each of those three weeks, but you’re not there the entire time.

Julie C. family
Julie C. at home
Side effects of cevostamab

I had CRS again. They treated that; it was fine.

I went home and I was on the schedule. This particular trial has an endpoint after 17 cycles. Each cycle is 21 days.

I was able to have three weeks in between treatments, which was wonderful. It was just great. The first time I had that kind of time span between treatments. We were able to go to Florida back and forth a little bit during that time and enjoy life a little bit so that was great.

COVID added some complications to that because I was fearful of traveling with my immune system the way it was. It was a wonderful feeling just being let out, being able to live my life.

Every three weeks, I went in for an infusion. There’s an endpoint to this trial. I think it’s the only trial where there’s actually an endpoint.

After 17 cycles, which actually equates to a year, you’re done with the treatment. That’s the protocol of this particular trial.

It was a pleasure not having to be at the hospital every week or every other week. Going once every three weeks, I knew that I had a full day there. I became friendly with the research nurses and all of the people there. It was my routine, but I was able to live my life in between that.

I also didn’t experience the kind of side effects I had with talquetamab. With cevostamab, I didn’t have any side effects where I felt badly. I felt fine.

My neutrophil count would come down and I had some neutropenia. I would have to have the Zarxio periodically throughout the treatment. I wasn’t tired. I didn’t realize it, but they were keeping on top of that.

During one of the cycles, they actually withheld treatment because of my white blood count. My neutrophils were low but that was it. Other than that, I felt fine through this process.

I was very grateful because I responded immediately to this drug.

Feeling hopeful

One thing I felt quite good about is the doctors said to me that these bispecifics act differently than other drugs. People are sustaining remissions. They’re long, durable responses. I felt that gave me some hope.

I actually connected with a woman who was on the cevostamab trial, one of the very early, early trials. She was off of the drug already, maybe a year and a half, and she was still in remission. I was hopeful hearing that.

Julie C. friends
Julie C. sister's MMRF walk
Julie C. sister's MMRF walk
Reassurance from another myeloma patient

It was wonderful. I found this woman from an article she wrote on one of the myeloma support websites and they were able to give me her contact information. She wrote about being on the cevostamab study and we had a phone conversation.

It was just reassuring. It’d be nice if people could reach out to each other on these trials, but I know there’s a lot of confidentiality there.

Final treatment & follow-up protocol

My final treatment with cevostamab was on December 1st, 2022. I’m in stringent, complete response, MRD negative, which I’ve been in since early spring. So knock on wood, I’m really hopeful and grateful.

I’m able to be in Florida. I just have to submit my labs once a month to Mount Sinai, go back for an in-person visit once every three months, and get a PET-CT. I’m very grateful right now.

Managing anxiety

I’m happy. I want them to be on top of it. I did ask my doctor recently, “Will I have to get the PET scans every three months indefinitely?” He wants to keep them going.

I have extramedullary disease and they want to make sure nothing is happening on that end that would show progression of disease. I hope to get to a point where I don’t need to go every three months for that, but I understand.

I accept the fact that it’s a chronic illness. I realize on an intellectual level that there could be remission. There could be periods where I fall out of remission. I have relapses.

Right now, emotionally, it’s hard to go there and I don’t want to think about that. I feel good now. I guess when that happens — if it happens — I’ll deal with it. I’ve accepted that intellectually. Hopefully, emotionally, I’ll be okay with that as well.

Julie C. friends
Julie C. with husband
Importance of clinical trials

I am such a proponent of clinical trials right now. It’s a wonderful option for people that have an aggressive disease like me, who are not able to sustain remissions. I trusted my doctors that these were the best decisions for me.

Some trials are newer than others so they have less data. Cevostamab did not have as much data. I would ask questions about certain side effects and they just don’t know everything yet. I was told, cevostamab will be hopefully FDA-approved in 2025 so there’s still a way to go. One bispecific is already FDA approved.

There are so many options for patients. Early on in my diagnosis, I just didn’t really know if anything was going to work. I was worried that nothing would work for me and I am so grateful that I was on the trials. Unfortunately, one didn’t work, but I’m still happy that I participated.

You also get a lot more attention when you’re on a clinical trial. At Mount Sinai, you get your own private room.

It’s always an important conversation to have with your doctor. The clinical trials could mean the difference in your disease and getting better.

Words of advice

Everybody should feel comfortable getting second, third, or however many opinions they feel they need. If the doctor that they are seeing does not support that, I think that’s a problem.

I did tell my doctor I was getting these opinions as I was doing it and he was fine with that. I think everybody has to feel comfortable, whatever they’re comfortable with.

I always took half a Xanax before a bone marrow biopsy. It was quick. The good news is it doesn’t take long so it’s uncomfortable for a couple of minutes and then it’s over.

I personally like the doctor telling me what they’re doing so I’m prepared. It’s important. Then breathe.

Julie C. outdoors
Julie C. family

I made a point to walk the halls almost every day when I was inpatient. In Hackensack, they have a completely isolated ward for the stem cell transplants where nobody was allowed in and maybe that was because of COVID. I was able to get out of my room and walk the hallways.

In the hospital, the days just went by. I had some Zoom calls with my family. I can’t even remember everything I was doing. I didn’t feel like doing a whole lot. Watching Netflix shows and so on.

I actually took a course on Coursera on how to analyze research studies, figuring that could come in handy for me with my diagnosis. It got very technical, but I did that.

It’s so important to take charge and have control where you can. You can’t control this disease, but you can control how you respond. You could become knowledgeable and make decisions.

I don’t think there’s anything wrong with getting second, third, and fourth opinions if that’s what you feel comfortable with. Doctors are happy to do that. They really are. Every doctor I spoke with gave me different insights.

Seek out all the information through all of the wonderful resources and nonprofits that we have for myeloma. There are a lot of people out there who want to help so I’m grateful.

I want to help people with my experience and I’m hoping that people can gain some knowledge from my experience.


Julie C. feature profile
Thank you for sharing your story, Julie!

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Multiple Myeloma Stories

Clay

Clay D., Relapsed/Refractory Multiple Myeloma



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Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
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Melissa V., Multiple Myeloma, Stage 3



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Elise D., Refractory Multiple Myeloma



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Treatments: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
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Marti P multiple myeloma

Marti P., Multiple Myeloma, Stage 3



Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatments: Chemotherapy (bortezomib & velcade), daratumumab/Darzalex, lenalidomide, revlimid, & stem cell transplant
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Ray H., Multiple Myeloma, Stage 3



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Categories
Gastrointestinal Medical Experts Medical Update Article

Lynch Syndrome: What Patients Need to Know

Lynch Syndrome: What Patients Need to Know

A Q&A with Lynch syndrome specialist, Michael Hall, MD, MS

Dr. Michael Hall

When Jackie was diagnosed with 3B/4 adenocarcinoma, her GI doctor suggested she may also have Lynch syndrome, a condition that increases the risk of developing numerous cancers. Families with Lynch syndrome typically have more family members who are diagnosed with various cancer, according to the Mayo Clinic.

After a genetic test, the condition was identified in Jackie’s results and she became the first person in her family to identify Lynch syndrome in her family’s DNA.

To better understand Lynch syndrome and how to test for it early, The Patient Story spoke with Dr. Michael Hall, a medical oncologist at Fox Chase Cancer Center.

He is the chairman of the Department of Clinical Genetics and co-leader of the Cancer Prevention and Control Program, one of the cancer center programs at Fox Chase composed of various researchers.

In this conversation, he discusses Lynch syndrome, what cancers patients would be more at risk for, and who should get tested.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Lynch syndrome is common enough that I think any young patient or any patient who has colorectal cancer, if not now but in the near future, really should be tested for this syndrome.

Dr. Michael Hall

Introduction

How did you get into medicine?

My mother was a nurse and I just found the stories of medicine interesting and compelling. I took a couple of years off after undergrad and realized that it was definitely what I wanted to do.

I went to medical school at Columbia. Spent some time in Boston for my residency, [in] Chicago to do some training for fellowship, and then, ultimately, matured into an oncologist.

Since I became a full-fledged oncologist, I’ve worked at a couple of places. I was at Columbia in New York for a few years, got some great mentorship from the cancer epidemiology team, and got my first grant.

Then I became interested in Fox Chase. There were a number of people who were working in this area of hereditary genetics, cancer, and Lynch syndrome. At that point, I recognized a great opportunity.

I was also a little tired of living in New York so it ultimately all worked out. I moved and I’ve been at Fox Chase since 2008.

How did you get into Lynch syndrome?

My interest in genetics and Lynch syndrome started during my fellowship training at Chicago. I was mentored by a giant in the field, Funmi Olopade. She was a major force in BRCA1 & BRCA2 research.

I was interested in being a GI (gastrointestinal) oncologist. She said to me, “If you’re going to be interested in GI oncology, you need to get interested in the GI syndromes then.”

I started out being interested in pancreatic cancer. Then that evolved over time to GI syndromes, like Lynch syndrome and FAP (familial adenomatous polyposis).

What’s been amazing about Lynch syndrome research is when I first started in this field, everyone looked at Lynch syndrome as incredibly rare. It’s good to have one person at the center who knows a little bit about it, but you’re probably never going to see it. No one knew anything about MSI (Microsatellite Instability) testing, IHC (immunohistochemistry), or any of those things.

In just a few short years, we’ve seen Lynch syndrome with the emergence of immunotherapy, with some great research coming out of the Australian group and an Ohio State group. This disease is actually incredibly common in the population.

The total turnaround has been really an eye-opener to me about how much science can change over a short period of time. It also has opened up a big opportunity for us to identify a large swath of the population who have this very common risk that we can actually do something about. That’s been really inspiring as well.

Whenever you’re in a research area, it brings you together with other folks who are interested in that same area and that’s led to a wonderful peer group that I’ve developed over the years. Everyone [is] focused on this same goal of addressing Lynch syndrome, hopefully making the lives of our patients better.

What is Lynch syndrome?

Lynch syndrome is a risk. It’s like driving your car without a seatbelt. You can, you could drive all over town without a seatbelt on and never have something happen to you. But Lynch syndrome is if you did have an accident, something could happen.

This is an inherited risk in one of four genes that we know are related to editing and repairing small mistakes that get made in an individual’s DNA. When that DNA is being replicated or gets damaged, usually it’s because when our cells replicate, that has to happen very quickly. We have billions and billions of cells so those enzymes, that are in place to replicate our DNA and form two new cells, have to work really fast.

They make mistakes along the way. Human beings have a lot of amazing backup pathways. If those mistakes get made, there are groups of genes and enzymes that come in to repair those mistakes.

Lynch syndrome is one of those families of genes called the mismatch repair pathway. There are very specific times when our cells and our bodies need that pathway to work. Individuals with Lynch syndrome have a risk that that pathway can get disabled.

If that pathway gets disabled, there can be an accumulation of small mutations that happen throughout important genes. That accumulation of mutations and the dysfunction of those genes ultimately can lead to cancer.

At the same time, what’s been discovered in recent years is that [the] pathogenic process of mutations accumulating is actually very, very distinct to people with Lynch syndrome. We’ve been able to harness that distinctness and the ability of our immune systems to recognize the tumor, the process of tumors forming in Lynch syndrome, to use immunotherapies to help our own immune systems basically turn on a Lynch syndrome cancer.

We’ve seen [this] in medical literature. I’ve had a number of patients in my practice. Examples now are all over the place of people who have metastatic cancer with Lynch syndrome [and] can be cured with immunotherapies. This, unfortunately, doesn’t happen for everyone, but the chances are actually pretty good.

This is how this syndrome works. It is basically a risk of accumulating these mutations. Again, if one is lucky, that risk may never play out in the formation of cancer. However, we know that risk is elevated compared to average-risk individuals in the population.

That accumulation of mutations and the dysfunction of those genes ultimately can lead to cancer.

What cancers would Lynch syndrome patients be more at risk for?

The classic group of cancers, especially colon cancer, is always going to be near or at the top of the list. There are these four, some people say five, genes that contribute to Lynch syndrome. Two or three of the genes are actually [at] higher risk to develop colon cancer. The other two genes are perhaps a little lower risk or later onset cancers.

Endometrial cancer is also at the top of the list, particularly for women who have uteruses. There are some families where endometrial cancer is actually the dominant cancer.

Then there are others, ovarian cancer [and] gastric cancer. We do sometimes see small bowel and pancreatic cancers. We can see cancers of the ureters and then there are some Lynch syndrome families who can get skin manifestations as well. They’re not cancers; they are growths that you want to get rid of if you get them.

How does age play into this?

There have been some studies looking at this. What appears to be a shifting of the age of earlier onset colorectal cancer, I can say with reasonable confidence, is probably only slightly explained by the syndromes we know about like Lynch syndrome, FAP (familial adenomatous polyposis), and others. The prevalence of those syndromes is pretty constant in the population so we wouldn’t really expect those to be causing a shift in the age of cancer diagnosis.

What I think is more likely is other genes plus environmental factors. Genes that we perhaps don’t know about right now or how they’re involved in this plus environmental factors like [the] food we eat, how we exercise, or how well fed we are. Actually, our nutritional status as human beings is a lot better now than it used to be many, many years ago.

All of these things probably play into changes in the rates of cancer that we see in the population and the ages at which those develop. I think it’s important to always, in these young cases that we’re seeing, think about Lynch syndrome. Test these individuals. But I don’t think this explains the shift.

Everyone with a diagnosis of cancer should have access to hereditary genetic testing if they want it…The tougher question is: how do we test everyone else? If you’re testing patients with cancer, you’re behind the eight ball.

Who should get tested for Lynch syndrome?

Lynch syndrome is common enough that I think any young patient or any patient who has colorectal cancer, if not now but in the near future, really should be tested for this syndrome.

The Ohio State group and others show that if you test patients with colorectal cancer under the age of 50, you’re going to find that about 8% or 9% of those colon cancers have Lynch syndrome. If you test over 50, it’s going to be a smaller chunk, but it’s still going to be a pretty significant percentage of people.

If you look overall at all colon cancers, Lynch syndrome comes in roughly about 2.8% to 3% of all colon cancers and that’s common. Especially because we have great ways to screen these folks, we have other things we can do. There are emerging new prevention approaches. With a disease that is common, we should really be testing everyone.

Testing has become much more accessible [and] much cheaper. What we’re seeing is national guidelines shifting direction — full disclosure: I’m part of some of them — recommending this testing for all colon patients. I think it will not be too many years before that is fully endorsed by the whole medical community.

There have been some great data from Jewel Samadder’s group from Mayo Clinic showing that if you take all comers with any kind of cancer and you test them with a large gene panel, you’re going to have roughly a 10% chance that you’re going to find some relevant gene that relates to people’s risk of cancer that’s actionable and meaningful.

That tells me that everyone with a diagnosis of cancer should have access to hereditary genetic testing if they want it. Not everyone wants it. I think the tougher question is: how do we test everyone else? If you’re testing patients with cancer, you’re behind the eight ball.

What we want to do is test people who are in their 20s and 30s, who have their lives ahead of them, can plan ahead, can think about, “Am I going to smoke or not? Am I going to drink or not? Am I going to exercise or not?” Because that’s where we can really make an impact on preventing cancer in the population. Identifying those folks for whom we should focus resources like frequent colonoscopies and other things versus individuals who don’t have to worry about that.

Clues like mom had ovarian cancer: huge red flag. You need to get testing. We can use information from population genetics to help individuals understand what risks they may be facing.

A nice study out of the UK showed that if you tested lots of folks for Lynch syndrome, not based on family history, you’re going to find meaningful mutations in many folks who never have a family history of cancer. But those folks can still go on to get cancer themselves. Family history helps you, but it’s far from perfect.

When you think of a world where this is a common disease and testing is relatively cheap, I can tell you being in this business, it’s much nicer to know you have a risk and prevent [it].

We do a lot of survey groups in my research team looking at patients’ preferences for different kinds of ways of preventing disease. We asked them, “Would you want to start taking immunotherapy or start using aspirin or exercise three times a week?”

The kind of prevention people are actually most interested in are actually nutritional interventions. People want information that guides them, that helps them eat better foods and foods that will help them prevent disease, much more so than they’re interested in things that are more invasive or they may perceive as being riskier. Helping them understand those risks early in ways that they might be able to address them is really important.

What we want to do is test people who are in their 20s and 30s, who have their lives ahead of them, can plan ahead… Because that’s where we can really make an impact on preventing cancer in the population.

How does genetic testing help with the treatment plan?

It does [help], especially the immunotherapy part. Immunotherapy really put Lynch syndrome on the map a few years ago. There was an “Aha!” moment in science that was huge. It doesn’t matter whether it’s colon cancer, endometrial cancer, or whatever.

In this process of DNA mistakes that happen in the tumor, there are proteins produced that are non-native to our body. There are these little fragments of proteins that our cells wouldn’t normally make. A patient’s immune system recognizes those and realizes that [they] shouldn’t be there. The tumors very quickly hide away from the immune system. When I describe it to my patients, it’s like they put up little umbrellas to hide under.

This therapy that was developed and came on the market a few years ago, what we call immune checkpoint blockade or anti-PD-1/PD-L1 therapy, basically is able to take down those umbrellas [and] allow the immune system to swoop in. In a large number, although not 100% of cases, [it] can sometimes allow an immune system to completely control a tumor if not cure it.

It is incredibly important these days for patients to be tested early on, especially [with] colon, endometrial, and several other tumors, to find out whether their tumor is MSI high or looks more like Lynch syndrome versus not.

Of course, there are some MSI high tumors that are not Lynch syndrome. But again, that’s a really important question that needs to be asked early on in the treatment of almost every cancer these days.

Is there a vaccine coming out for Lynch syndrome?

As is often the story of medicine, there’s been lots of great research over the years, particularly by a group in Germany, but they’re not alone.

A very smart scientist Matthias Kloor and the team that he works with in Germany [is] looking at these peptide fragments that these tumors make that the immune system recognizes, analyzing them, purifying those, and developing vaccines that would be able to stimulate the immune system to recognize those and hopefully enhance the immune response.

They also identified peptides that were common across lots of different Lynch syndrome tumors, like endometrial cancer [and] ovarian cancer. There are ones that are commonly produced by all tumors.

There are some trials now going on. There [are] at least two. One that’s ongoing in the US that I’m part of, based out of an MD Anderson consortium. This small trial is basically looking at whether the vaccine will stimulate the T cells in patients. This is a small early study. If that goes well, the next step would be a larger study to look at some specific cancer or some intermediate outcome.

There’s also another study that’s going to be opening, which will also be looking at another vaccine, but [with a] similar idea. We’ll initially look at the stimulation of the immune system but also at some biologic endpoint.

There may also be others along the way. I think it’s [a] really, really exciting time.

We’ve had our first two patients participate here. All has gone smoothly, I have to say. It’s probably the most exciting thing that I’ve been part of because this is something I’ve been reading about for 10-plus years. To finally see it come about and be able to offer patients a treatment like this is incredibly exciting.

The main thing I would caution patients [about] if they went through their primary care provider is that genetic counseling is really an integral part of this.

What is the process of getting tested for Lynch syndrome?

There are multiple ways these days and I think that’s ultimately a good thing.

It used to be that you had to come to a center like Fox Chase. You had to go through what we call the clinic-based, high-risk program. Sometimes those programs would have a long wait to get in. That’s still an option for patients and I think that’s a good option.

I firmly believe that patients who are having this kind of testing need to have genetic counseling. What’s nice in 2023 is there are more ways to go about that.

Patients can get testing through their primary care providers. Providers may have some access to genetic counseling remotely or sometimes the genetic testing companies they’re using may have their own counselors.

The main thing I would caution patients [about] if they went through their primary care provider is that genetic counseling is really an integral part of this.

The other way is what we call direct-to-consumer where patients can go online. There is a company where the company has its own online doctor. There’s online counseling and they can send patients a kit. It’s not my preference for patients, especially patients who may have concerns or may have lower health literacy [and] need more help with the decision-making process.

But, again, I do think that option has a place for patients who may be otherwise reluctant to come through a big cancer center or may have concerns. It allows patients to do the testing outside of their health insurance. There are, again, pluses and minuses to it, but I think it has a place. All of those exist for patients as ways to get tested.

Is there a risk in panel-based testing?

There are many different companies that offer different variations on the same theme, which is generally panel-based testing where you can get tested for a bunch of different genes all at once, including the Lynch syndrome genes, to identify any risks that may be in the family.

There are some panels that are over 100 genes but that’s not actually the right answer for every patient. When you do a large panel, you have a high chance that you may find uncertain results in the Lynch genes or other genes that you don’t really know the answers to.

You may also find what we call incidental findings. You may be thinking, “My brother had colon cancer at 40 so he has a pretty high chance that there’s Lynch syndrome. I want to get tested for that.” What if you, lo and behold, find a BRCA mutation? That can be pretty unsettling for some people and, again, why counseling is so important.

There needs to be a bit of a “buyer beware.” You need to know the pros and cons of that approach. It’s not infrequent that when we’re discussing our cases weekly with my counseling team, there will be patients who come along who just want to keep their testing simple.

They don’t want the 50- or the 100-gene panel. They just want to focus on either 12 breast cancer or colon cancer genes because they don’t want all of that risk of distracting information. It’s important for people to understand that they do have those choices before they jump into this.

This is something that has been amazing for me in medicine [since] when I started. We would counsel basically one gene at a time. We had women with breast cancer who we might counsel for an hour and a half to just BRCA1 and 2.

Now, only 15 years later, we’re doing this much broader pre-counseling for patients. But we really then focus on the results counseling afterward, especially when patients are getting panels of 80-plus genes, you couldn’t possibly counsel for every gene individually so it’s really fascinating how it’s changed.

When you do a large panel, you have a high chance that you may find uncertain results in the Lynch genes or other genes that you don’t really know the answers to.

What is ICD-10?

ICD-10 is the new coding system. It does separate out Lynch syndrome a little bit more so now there’s a code for MLH1 & MSH2, so each of the genes. I use them, but there is also a general Lynch syndrome code as well.

When I’m having an interaction with a patient, doing some counseling, or bringing someone in to review testing results, I will include that code.

Unfortunately, some of the ICD-10 codes that will help docs get reimbursed for high-risk syndromes are not high-capture codes like a colon cancer diagnostic code. They are lower capture V codes that, for the doc, may mean minimal to no reimbursement.

This is one of the challenges in the field. Again, our health system is very much structured around spending a lot of money on treating complex diagnoses and not spending much money at all on preventing disease.

Hopefully, one day, we’ll see that the amount that a provider gets for spending time with someone to test them for Lynch syndrome, to counsel them correctly, to help them understand what they can do about that risk should be reimbursed as well as treating cancer down the line or at least some parity in those two.

Conclusion

One of the hardest things about genetics for patients is these intrinsic fears that they’re discriminated against. Understanding it all can be hard. Sometimes their doctors don’t even understand it all that well.

It really has been pretty amazing to be part of it all. Part of the joy of being in research medicine is some of the amazing colleagues you meet along the way. Being part of this mission to understand this disease better, help the patients, see them at meetings, and learn about this is really, really pretty amazing stuff.


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Categories
Chemotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories Primary Mediastinal B-Cell Lymphoma (PMBCL) R-EPOCH

Stephanie’s Stage 4 Primary Mediastinal Large B-cell Lymphoma (PMBCL) Story

Stephanie’s Stage 4 Primary Mediastinal Large B-cell Lymphoma (PMBCL) Story

Stephanie V.

After her father’s Hodgkin lymphoma diagnosis, Stephanie still never thought her persistent cough was anything more than allergies or asthma. But after her cough progressed and she couldn’t do or say anything without coughing, she finally decided to go to urgent care.

As doctors cleared fluid from her lungs, they found a mass in her chest. She was then diagnosed with stage 4 non-Hodgkin’s lymphoma only two years after her dad’s diagnosis.

She voices how she processed her diagnosis, how she advocated for her health, and how her father’s diagnosis impacted her cancer journey.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Stephanie V.
  • Diagnosis:
    • Primary mediastinal large B-cell lymphoma (PMBCL)
  • Staging: 4
  • Initial Symptoms:
    • Allergic reaction
    • Lungs felt itchy
    • Shortness of breath
    • Asthma/allergy-like symptoms
    • Persistent coughing
  • Treatment:
    • Pigtail catheter for pleural drainage
    • Video-assisted thoracoscopic surgery (VATS)
    • Chemotherapy: R-EPOCH
Stephanie V. whiteboard quote
Stephanie V. and James
Stephanie V. timeline


Introduction

I work in private wealth management. I manage a team that oversees investing high net worth accounts. I enjoy developing my team members and associates that report to me; that’s always been something I’ve been interested in since I started with the company. I’ve been with them for almost eight years so it’s been quite an endeavor in that sense.

In my spare time, I like remaining active. I’ve danced since I was 2.5 years old. My passion was always ballet, but I also did tap, jazz, [and] contemporary.

I studied dance in college with a focus on economics. I did dance on the side knowing that it wasn’t going to be my end goal or career, but something that I kept up with. Now I’ve translated that into exercising on a regular basis and trying to keep active. Remaining active has always been something important to me. 

In the winter, we go skiing and spend time with family. It’s always been very important to me.

My father’s Hodgkin’s lymphoma diagnosis & journey

We’re very healthy individuals, my dad specifically. He works in construction so [he has] an active job. He’s very tall, very lean, [and] very healthy.

We started to notice [that] he had this cough in late 2017-early 2018. He works in dirt so we thought, Oh, he’s inhaling too much dust. He’s just coughing it out. It did become very persistent and we said, “Maybe he should go to the doctor [to] get this checked out.”

He hadn’t been to a doctor in 20 years; didn’t really need to go because he’s a healthy person.

His tumor was so dense [that it was] difficult to get a good sampling. He had many biopsies because every time, the results came back inconclusive.

The doctors knew that he pretty much had Hodgkin’s lymphoma. He had every symptom in the book: night sweats, weight loss, coughing, and itching. We knew he was sick, but we couldn’t get that confirmed diagnosis.

After about three or four months of going back and forth and finally getting that confirmed diagnosis, he was able to start treatment. I forget what treatment he did, but I consider it an old-school treatment. It wasn’t the ideal treatment that they wanted to do for him, but they did that one I think because of insurance purposes.

He went through his treatment cycles and had a clean scan, but within three or four months, he had the cough, itching, [and] night sweats again. It came back.

Stephanie V. dad Joe's Garden

The next plan was to do a stem cell transplant where he was his own donor. Now, this is [the] summer of 2019. He was in full isolation. We were wearing masks and gloves to visit him. We could have visitors at that time as it was pre-pandemic. He started to do immunotherapy as [a] maintenance treatment after the stem cell transplant.

He’s been good ever since, thankfully. He has his regular checkups with our lymphoma team at the cancer center. He’s now doing one-year scans but has a checkup every six months. He was pretty much confirmed clean before the pandemic started.

Stephanie V. swollen eye

Initial symptoms

I didn’t really have any symptoms other than a persistent cough. I pinpoint this back to a day in February [when] I might have had a food allergy mixed in with some dust contact shortly after. I guess my immune system might have been down and couldn’t fight whatever was coming into my body at that point.

I did a teledoc appointment that weekend. My face was very swollen and I was prescribed some prednisone. A few weeks later, I still didn’t feel very well. I still had itchy lungs.

I went to the doctor in person. They prescribed allergy medication. It was winter in New Jersey. I already have food allergies [and] eczema and so I said, “Okay, add it to the list.”

I noticed shortness of breath in April 2021. I was actually supposed to get married [that month]. My husband, then fiancé, [and I] were in Newport, Rhode Island, for our would-be wedding date and we were walking around. Our hotel was over a little bridge that had an incline.

I noticed that I was getting out of breath and we were just walking around, not even having anything to drink. It was just a nice day and I was very out of breath. I had to stay in the hotel room more than we’d liked.

May 2021 was when my symptom progressed. I started to have a cough and more asthma allergy-like symptoms where I definitely was more short of breath. I went to the doctor and they said, “It’s probably asthma. I’m going to give you two inhalers.” One was albuterol and something called Qvar, which was a little bit more intense. I said, “Okay, this was probably coming.”

Coughing progressed

By June 2021, my coughing had progressed a lot more where I really couldn’t do anything or say anything longer than a sentence without coughing nonstop. It was impacting my work.

I speak a lot. I do training for my team and I couldn’t get through a presentation or even a sentence without coughing so that was becoming a lot more noticeable. Definitely, not a time when you want to have a persistent cough. It was confirmed many times [that I] didn’t have COVID.

After not feeling well to the degree that I was that morning, I finally decided to go to urgent care. I was going to go that week, but I realized that morning I had to go. I did get sick from coughing so much. I think my body was probably doing it out of habit at some point, too, just because I couldn’t go more than two minutes without coughing.

I was convinced it was pneumonia at that point just because [of] the way I was coughing. I just couldn’t breathe.

Stephanie V. and dad
Stephanie V. and James

Pre-diagnosis

Going to urgent care

First, I went to urgent care where I demanded an X-ray. They said, “You might have COVID.” I knew I didn’t. I asked for a chest X-ray.

Before I even put my clothes back on, they said, “You have something that’s called a pleural effusion or an empyema and you need to go to the emergency room right away.”

This was a different medical group than where I ended up getting all my treatments. They said, “Go to this hospital. We’ll call you in.”

I said, “If this [has] anything to do with my lungs, my dad already has a pulmonologist that’s at a different hospital network. We know people there. I’m going to this emergency room instead.”

They called the hospital that I wanted to go to. You need to advocate for where you want to go [and] what you want to do because it is all about you at that point.

Going to the emergency room

I did get to the emergency room. This is the middle of the day on a Monday [so there were] a lot of people in the emergency room, probably about 50 people waiting. I [was] waiting my turn and the second I said my name, they said, “We’ve been waiting for you.”

They pulled me into another room, threw a gown on me, [and] started to do all these tests. I’ve never been to the hospital other than when I was born. I go to the doctor [for] my yearly visits. All these tests, all these patches on me, [I was] getting a little nervous.

Then they said, “Okay, we have your blood.” At urgent care, I did not have a fever. The second I got to the emergency room, I was 101°F or 102°F. I think my body was just saying, “Okay, this is time. We’re going to show every symptom we have now.”

They put me on a gurney and rolled me into my other room. I did start to cry a little bit because I was very overwhelmed. I was with my sister and at first, [we] were very lighthearted. We make a joke out of everything so I was said, “Oh, I guess it pays off going to urgent care first before going to the ER because they can give a heads-up.”

Everyone else is either walking to an exam room or in a wheelchair, but I get a gurney and I said, “Okay, no one’s really telling me what’s going on. They’re just all acting a little fast.” That’s when I got a little bit nervous.

Stephanie V. in the hospital
Stephanie V. and mom

They told me I had about a liter of fluid in my right lung that needed to be taken out. They couldn’t do it that day, but they would be able to do it the next day. Not only was this my first trip to the hospital, [but I’m also] now automatically staying [the] night.

I was admitted on a Monday. They didn’t know it was cancer until Friday. There’s so much fluid in my lung that they first thought pneumonia or pleural effusion and they need to get that out. Once they cleared out the lung, that’s when they did the CT scan and saw the mass in my chest.

They didn’t tell me until Friday. They were just concerned about what was happening in the lung and how to treat it. I don’t know if they didn’t care to look at it. I don’t want to make it sound like the doctors were being careless, reckless, or anything like that, but I think they were just addressing that issue first.

Rolling into the OR, they said, “Oh, by the way, can you sign here? Because we’re also going to biopsy this mass in your chest.” All I remember thinking was, Interesting. My dad had a mass in his chest, but at that point, I still didn’t think it could ever be lymphoma. I said, “Oh, that’s interesting,” and the next thing I know, [I’m] getting a mask on me and going to sleep.

There’s so much fluid in my lung… Once they cleared out the lung, that’s when they did the CT scan and saw the mass in my chest.

Requesting a chest X-ray

That is a lesson learned from my dad’s experience. He is considered young by most standards so I’m considered extra young.

When he had the cough, I think he had gone to the doctor maybe two times, one for a physical because he hadn’t gone in so long.

At that point, I think anyone over 50 should be getting a chest X-ray from what I understand. But that first doctor did not do a chest X-ray so he could have seen something earlier.

When I was coughing so much, my mom said to me, “When you do go, get a chest X-ray because that’s where we’re going to start every time,” not thinking that this was going to turn into stage 4 cancer.

We said, “Okay, it’s what? $12 for a chest X-ray with insurance or something like that. It’s very harmless and we’ll just cross that out.”

Stephanie V. with family
Stephanie V. in the hospital
Getting back from the OR 

I wake up. They cleared out my lung, but there was still a lot of infection in there. While they were in there, they took [a] biopsy of the chest and the lung as well.

I get rolled into the surgical ICU for recovery. This is pandemic time so we only had two visitors at a time. A couple of minutes later, my mom, dad, and fiancé came in. I thought, “Interesting. We have three guests. How did we do this? This is very nice.” If my sister was there, that would have been the goal but, obviously, we can’t push it.

I had my important people there and I was asking my fiancé because he was sitting right next to me. I asked, “ Did they say anything? They mentioned a mass [in] my chest. Did they mention anything about it? I don’t know what that is.” He just shook his head and said,, “I don’t know about that.”

I have a popsicle in my mouth because I had a sore throat from the anesthesia. I’m licking away and I said, “Okay, well, this is it, guys. I’m going to be here for a couple of days, go home, and we’ll all laugh about this later.”

She immediately called the cancer center and said, ‘My husband’s a patient and I believe my daughter’s about to be a patient. What can I do?’

Diagnosis

Getting the official diagnosis 

The doctors come in. I thought they were just going to go through the surgery and say what I have to do to fix myself. It was actually a team of surgeons. They can’t say it without having [the] biopsy results, but the doctor was very confident that I had lymphoma in my chest.

I looked at my fiancé and my parents and asked, “Are you sure you didn’t pull my dad’s files? We’re in the same hospital unit and he had [a] mass in his chest. Dad has lymphoma, not me.”

They left. My mom’s face, I knew she already knew the information. What I came to learn was the doctor called her, telling her that I was out of surgery. He said, “I was able to look at the actual mass and at the cells and I believe it’s lymphoma.”

She said, “Please do not tell my daughter until I get to the hospital with her father [and] her fiancé. She cannot hear this news alone.” That’s how they got three visitors in the hospital.

The second she got that phone call, she went into her mode. This is Friday afternoon. She immediately called the cancer center and said, “My husband’s a patient and I believe my daughter’s about to be a patient. What can I do?”

Stephanie V. at home

We didn’t have the biopsy results but she wanted to get our names on the board immediately.

She did say she paused because again, I’m in this transition of getting married and my spouse might be the one who wants to make some decisions, too. She had to pause and turn to my fiancé and say, “Are you okay if I start running with this?” He said, “Please. Go right ahead,” because she knew the road to take and we just had to get right in there.

Stephanie V. at home
Reaction to the cancer diagnosis

I still think it’s absolutely bizarre. We’ll never understand. I’m not sure when I’m going to say, “I just had stage 4 cancer and my dad had it, too, all within five years.”

I was very calm. I don’t think it actually hit me until someone mentioned family planning. That was hard to understand, especially as I’m trying to get married and I have someone who is looking to me to start a whole life together. I thought,“Well, this might get cut short.” But otherwise, I was calm.

I like to deal with things as they come. I accept it and say, “Okay, what are we going to do about this?” I do that in my work. I’m learning in my life, too. That’s not to say I don’t have anxieties or stresses about it, but I do think I remain calm under these pressures.

You never want to see that look on both my parent’s faces. You never want to be the cause of their worries. I think that that happens naturally when you become a parent, I’m sure. But to this degree, I don’t think you ever want that.

My mom’s got her way of reacting [to] things. But I know with her, I was in good hands. We knew what we were going to do. It was going to get done.

With my dad, [it] was hard to look at him, and over the course of the next couple of months, too, because he knew what I was about to go through more or less. You don’t want that for anybody.

He said, “If I could trade places with you, I would ten times over,” and you just don’t want to hear that. I don’t want him to go through it again, too.

I think it’s more stressful for me to see everyone else worry about everything… You don’t want to be the cause of people’s worries and restless nights.

We’re [a] family who jokes and tries to make light of things when we can. Looking at my fiancé at the time, I said, “You can get out now. It’s going to get ugly.” My mom said, “Yeah, James, we’re going to give you three tries and after three, you’re in. So here’s your first try. You can go.” Of course, we’re joking and, obviously, he wouldn’t leave.

You don’t sign up for those things. No one does. But we didn’t even say “I do” yet and this is the “in sickness and in health.”

I think it’s more stressful for me to see everyone else worry about everything. That was the heaviest weight to carry. Not my health or what I had to go through but seeing other people go through it. Seeing it with my dad, I knew as a loved one how that felt. You don’t want to be the cause of people’s worries and restless nights.

Having a support system when you get your cancer diagnosis

I wouldn’t have expected it any other way. There’s no scenario where they wouldn’t have been there. I think that’s the part that she gets done every time, like having those three people in the room knowing that this is life-changing news. If she could get my sister in there, too, she would. I think that’s just the way she does things.

You can’t just hear about it by yourself with a SpongeBob popsicle stick. You need those people around you. That’s when day one starts.

You’re never alone in this process. But to hear that news, you cannot be alone. For her to do that, that’s the person that she is, knowing that she’s done it before.

Stephanie V. and James
Stephanie V. treatment

Treatment

Starting treatment after cancer diagnosis

It was about a month afterward. I got the confirmed diagnosis a few days after I was released from the hospital. I got [a] phone call from the surgeon.

I called my mom right away and said, “Okay, it is lymphoma.” There was a case where it could have been some lung disorder or disease that would still be treated with chemo, but it wasn’t cancer, so that was also a blessing in disguise. We said, “Well, we know lymphoma so we’ll take it.”

My mom immediately called the cancer center and said, “We officially have the diagnosis.” The surgeon was about to call the cancer center as well.

The cancer center called me back and said, “Our oncologist has an appointment open [in] 45 minutes. Can you go?” My mom’s at work, I’m at my house, and the cancer center was about 25 minutes away. I said, “I don’t know if we can get there. Let me call you back.”

I called my mom. I said, “She’s available in 45 minutes, but you’re at work, Mom.” My mom said, “No, we’re going. I’m dropping everything.” She had an amazing boss at the time who was so understanding and knew everything about my dad’s history. Anytime anything happened, she would just say, “I have to go,” and he said, “Okay.” That’s it, no questions asked.

She picked me up. We sped down to the cancer center and got our appointment with the oncologist. She’s a rock star.

These are people who’ve known my mom now for a little over two years. They know my dad. They’re the younger couple so people tend to recognize them and know them in the unit.

The look on their faces… The head oncologist and her team of nurse practitioners had this look. My doctor said, “I’m so sorry.” She genuinely was upset that we were in there.

She went through the whole thing and that’s when they said the staging. My dad never got a staging. They just treated him. My parents had asked a couple of times, but they never really clarified. We think maybe 2 or 3 and I could totally be wrong about that.

But for me, right away, it was, “Okay, well, you’re stage 4.” I said, “What?” I didn’t have any symptoms other than this cough, but my lung was completely infected and that was all the cause for it.

Immunotherapy & chemotherapy treatment

I did the egg retrieval on a Thursday. That Friday, I did my first round of immunotherapy and rolled right into chemo.

I first started the chemo treatments end of July. I did R-EPOCH.

Side effects of chemotherapy & what helped alleviate them

I, fortunately, did not have many side effects. I was nervous because when I learned what R-EPOCH entailed, which was 96 hours in the hospital every round, that was not what I was expecting. I was expecting a couple [of] hours once a week outpatient, just like my dad had all these months or years.

Digestive issues, yes, but I always have digestive issues anyway. I did have shots that I had to take at night after each treatment cycle for about five or seven days to boost my white blood cell count. Those give you achy bones literally. That’s pain that you don’t know exists until it actually happens.

I would remind myself that the pain I’m feeling is my body producing white blood cells so I would just try to imagine that and cope with it. I would find going for walks helpful because when you do sit for too long, that’s when the aching really did come.

When I was in the hospital, I would walk because I can. Most people in the oncology unit cannot walk so I said, “You got to get up because no one else can and you have absolutely no excuse.”

I think I would do like three miles a day around the unit. I would walk anywhere that had space and anywhere that I could. That was basically the most helpful thing to do because otherwise, you’re just sitting in a hospital bed. Sometimes you have a roommate and you’re hearing their pain so walking was what I had to do.

Stephanie V. at home

I was exercising here and there. Still tried to do Pilates [and] yoga when I could. If I don’t work out X amount of times a week, that’s mentally not good for me.

I also did it because of the weight fluctuations that you experience with treatment. That was hard especially that first round because I was coming off IVF drugs and I got bigger because they pump so fluids in you to protect you from all the drugs that you’re getting.

At the time, going through the whole process of freezing my eggs was a huge inconvenience to me because I just wanted to get better… I had a bigger fish to fry in a way.

Stephanie V. and James

Fertility preservation prior to cancer treatment

We wanted to do family planning. She knew I was getting married and she made it seem more important to me than I think I really realized. She explained that the drugs we’d probably go with could impact my fertility, but it’s not guaranteed. She felt that it would be important for me to take the time and do that.

Sometimes patients don’t have that time. She did say, “You do have time. I will give you time to do it. We think it’s probably best to do so.”

At the time, going through the whole process of freezing my eggs was a huge inconvenience to me because I just wanted to get better and then have a wedding. I knew every day counted because my hair, whatever it was going to be, needed to grow. I said, “The faster I’m done, the faster it will grow.”

I went to the first doctor that she recommended. They do egg retrieval in the office and although it is local anesthesia, they weren’t comfortable with where my mass was with being able to breathe properly. They didn’t think they had the proper facility to do that procedure for me.

She confirmed that I should go to a doctor at Cornell in Manhattan because they do the procedure in a hospital. I went to that appointment [and] then found out that their labs were closed for a full week so I had to delay the process. But once we started with the shots and everything, it was a quick 10 days.

Family planning decisions with your fiancé

That part of the journey is a bit of a blur. We knew about lymphoma. We knew how to do cancer. We didn’t know about this.

This was something that we did together because my mom’s said, “Oh, I’ll handle the cancer part. This is your family.”

We knew we were going to do it, especially after the strong recommendation from my oncologist. One thing we did discuss was eggs versus embryos. That will be one of the first questions that you’re probably asked.

Freezing your own eggs is the first step of IVF if I am explaining it correctly, where you’re producing as many eggs as possible to retrieve all in one.

With the embryos, that’s when you mix in the sperm that you could freeze as well. I believe there are some benefits to freezing embryos. I think there’s a higher success rate.

We discussed it and decided that just freezing the eggs was what we wanted to do at the time. There was some extra time needed in order to do embryo freezing. But just in case anything were to also go wrong in our relationship or anything like that, these are my eggs.

Because we weren’t married yet, even though we were about to be, these are mine. He said, “Absolutely. This is the decision that we want to go with.”

Stephanie V. and James
Stephanie V. egg freezing meds
Process of freezing eggs

The hardest part for me was the last couple of years. I know that I was in a very different circumstance than most people and I fully recognize that, too. I saw this as somewhat of an inconvenience because I had a bigger fish to fry in a way.

But looking back, it’s completely different because you don’t know what’s going on in that next stage. Because I have to go to two doctors and [the] time that it took to get through all those appointments, that was more of the inconvenience for me.

The whole process is very, very difficult. You become a nurse for yourself immediately.

I’m very fortunate [that] I was a beneficiary of programs that help with paying for those medications. But if you’re doing that because you want to start a family and you’re not a cancer patient, I cannot imagine how people pay for multiple cycles.

The stress of keeping your needles clean and becoming a nurse overnight is absolutely insane. Learning the exact dosages and getting everything in order is crazy. Then administering the shots.

I’m someone who doesn’t mind needles, but I couldn’t give myself the shot. I was living at my parents’ house at the time. We bought a house in the same town so my fiancé was living in the house and he would come over every night for dinner.

After dinner, [he] and my mom would rock-paper-scissors for who’s going to give me my shots. I would mix them.

My mom was used to giving needles because she had given my dad white blood cell count boosters a few years ago. But that was in his arms; we were doing it in my belly.

James — and he would say this, too — was a little bit more, I don’t know, reckless. I would always bleed after he would give me the shots. One shot, Menopur I think, burns so badly.

Getting stuck every single day and then drawing blood in the morning, I was getting tired and I would cry. I would try to hide my crying, lying down on the couch. That Menopur shot would just send you over.

They knew they had to stick me two more times that night; that’s what was hard. You don’t want to do that to somebody. I was crying because I [didn’t] want them to feel bad, but they [did] because they’re inflicting pain on me.

In hindsight, probably the best thing that we could have done to ensure, hopefully, a family going forward whether we have to use them or not. It’s good to know that we had them.

Stephanie V. blanket
Stephanie V. outdoors
Taking care of your mental health

I’m in the suburbs of New Jersey. I have to go to my morning monitoring in Manhattan at 6 o’clock in the morning. A lot of mental work there.

I just had the mentality, “This is what you have to do. While it’s not the cure for what you’re actually sick with, you have to do it because this is your future.”

At that time, I had gone back to work basically after I was admitted and had my initial diagnosis. I was off a week or two to start the whole cancer process, but then I did go back to work for a few weeks before I officially started treatment.

I was just in a mode at that point: morning monitoring, back to my house, work, dinner, shots. I kept that routine pretty consistent and just added doctor’s appointments. That helped me keep focus and remain distracted from these bigger things that [were] happening. That’s just how my brain is wired.

I did work through all of my treatments. When I wasn’t in the hospital, I came home for a couple of days and took some rest but then I did work when I could work. That’s a testament to the company and the team that I work on. They were very understanding.

They allowed me to have that mental space, too. I don’t think I took on anything brand new during that time, but they allowed me to keep the things that were important to me, which was very helpful.

Planning a wedding & getting married

I should have gotten married originally [in] April 2021. We moved it because of the pandemic. Then when I was diagnosed, obviously to me, that was the last thing I needed. I said, “We will see what happens.”

My oncologist said my treatment plan was six cycles. She said after three, she would expect remission. Up until that halfway point, I didn’t think about the wedding very much, other than my hair. I was said, “We’re not talking about it.”

At this point, it’s not really happening, but we haven’t canceled anything. We did tell our vendors, “We’re dealing with this. We’re not talking about anything else,” and they were all very understanding. I don’t think they looked for payment. Good people out there.

After the midway point, I had my PET scan and the oncologist told me that I was in complete remission. I still had three cycles left. That’s when the wedding planning came.

Ironically, after that scan, I started to get more [anxious] because we’ve been in this bubble the last few months of, “We don’t have to worry about anything other than me literally surviving.”

I had that routine: wake up, work, maybe have a doctor’s appointment, have dinner, [and] go to sleep. That was the routine. I go to the hospital [if I] have treatment. That was it.

Stephanie V. bride
Stephanie V. wedding gown fitting

My doctor said, “You can start to plan. I’m comfortable with you moving forward with your wedding.” I said, “It’s in April.” She said, “Yes, that’s fine. You should be good.” I said, “We’re inviting more than 200 people.” She says, “That should be fine.” She gave us the okay. That’s when it all started to sink in.

One night, I just could not sleep. I was naive for a while with the hair because I had a few nurses tell me they had seen some patients not lose all of it so I hadn’t shaved my head or even cut it at that point. I just basically looked like Gollum from Lord of the Rings. It was bad. I should have cut it a lot earlier.

But that was an area where they knew I could joke about my hair, but no one else could. I know my mom and sister were definitely texting each other, being like, “She still hasn’t cut it.” That’s fine. Talk about it between them.

I thought, “I don’t think I’m really going to have a lot of hair,” because I was imagining maybe a Charlize Theron little bob-pixie thing going on.

I was constantly Googling “stages of hair growth after chemo.” I wanted a month-by-month playbook of it. Not many pictures out there to give you what you could look like. Obviously, everyone’s hair is different. Constant Googling of “how fast you can grow your hair safely.”

One night, I could not go to sleep. I tried some of the anti-anxiety medications that they sent me home with and that didn’t help. I think it made me worse.

I just remember texting my fiancé, saying, “Today is not a good day.” It was probably the only bad day I really had. He works in finance as well; very market-sensitive job. He asked, “Do you want me to just come over and sit with you?” I said, “No, no, there’s nothing to do.”

I thought,“Okay, life is going to start again and it’s going to be fast because I’m going to be done in November, God-willing, and if all looks good, I’m going to get married in April.” It was like the freight train was just pushing past anything that was blockading it and we were full steam ahead.

I think April was the true finish line in that sense. Technically, May, when I sat down on the beach in Turks and Caicos for my honeymoon. The wedding was the end in sight.

Follow-up protocol after cancer treatment

[I got] my results right before Christmas. I had so [much] vacation time left over for the year that I basically took off most of December, which I never do.

My fiancé and I got massages that day. We had brunch then he came with me and we thought, “It’s either going to be a good Christmas or a bad Christmas,” but it was a good one.

Stephanie V. and James
Stephanie V. vacation

We were used to every three months checkups for my dad, but she said, “I don’t want to see you until June and you’re going to be married.”

I wasn’t sure if she did that because three months would be around March if I were to do that and maybe she didn’t want to ruin anything.

Now, my checkups are every six months. I don’t even do PET scans anymore. I just do CT scans. So to me, she’s not as worried about anything because you don’t have to do the more detailed scans.

Everything so far [is at] complete remission. That’s where I think I have scanxiety and mostly because of what we’re finding more now afterward.

Getting diagnosed with Chiari malformation

I was getting migraines and they definitely were more pronounced after chemo. I thought that was because [I was] coming off a lot of bad, bad drugs. I noticed they were tension headaches. There were certain situations where I would get them.

My sister did remind me that I did get these headaches and tension headaches before I was sick, too. The night I got engaged, I had a terrible migraine. My head was throbbing.

I was sensitive to light as well. If it’s a beautiful, sunny day and I’m outside, throw in a high noon hard seltzer or something like that [and] I’ll get a migraine. I can only have maybe a couple of sips and I’ll get a massive migraine.

I did mention that to my oncologist. In that June scan, I was clear of cancer, good on that front, but she did mention that I had something called Chiari malformation, which is something that could cause the headaches that I was getting.

Stephanie V. out for drinks
Stephanie V. and sister

She recommended [for] me to go to a neurologist, which has been something that I’ve been on a new journey with learning a new topic and health area itself.

Many people can have it. You might not have any symptoms, but I’m pretty asymptomatic, given how severe it has become where it’s caused some issues. It’s caused the syrinx in my spinal cord.

Something that you look back and say, “Yes, I had cancer, but if I didn’t have cancer, I would have never probably mentioned my migraines or tension headaches or I thought they were really normal.”

People tell you, “You’re a woman between the ages of 25 and 50,” which is a very broad age range by the way, “so it’s pretty common for you to have migraines.” You just named half the population so we’re all supposed to have migraines? If I had stuck with that, I’d probably have not gotten the surgery because I’d say, “Oh, I’m just a woman who gets migraines.”

Words of advice

Be very detailed with what you’re experiencing. I went to the doctor for my yearly checkups until I was 28 years old. Now, I try not to overdiagnose myself, but I’m realizing I think I’m onto something when I have some of these issues.

Keep a notebook of every appointment [and] everything you discuss. I learned that from my mom. She has my dad’s whole medical life written in a notebook. We started my own notebook when we got into this whole mess.

Know your baselines. I learned that my temperature is in the high 97°F so if I get to 99°F, that’s off. I’ve also known my resting heartbeat. When it’s low, it might be because I’m on steroids and that’s what makes it super low. Then when I come off those and when I come out of surgeries, I run really high but I’m getting enough oxygen.

No matter how specific it might sound, start to log certain things you’re experiencing, like hand tingling. That’s definitely something that comes up with a lot of these drugs, neuropathy.

That’s something that I knew from my dad. He sort of has permanent neuropathy [whereas] mine was expected to be temporary, which it was. With my Chiari, the hand tingling is also a symptom so I don’t know where it came from, really.

Stephanie V. with family
Stephanie V. with family

That notebook is, for lack of a better term, your Bible. That’s your journal and that’s where you also can hold your medical team accountable.

In my IVF journey, someone dropped a term. They said, “Oh, by the way, did you know this?” I said, “No, I didn’t,” so I wrote it down.

The doctor said, “Not something you need to address today, but maybe something that you might want to address in the future or know about.” I wrote it down and that’s something that I need to go back and address as well.

Write down terms that you know and terms that you don’t know then research them. There is harm [with] over-researching, of course, as we all know. You go down the rabbit hole.

I read my scans and reports afterward. I’m lucky enough [that] I have a radiologist in the family. I could text her at any point and say, “What is this? What is that?”

Utilize the resources that you have or the people around you because, unfortunately, everybody has an experience with cancer. I’m not the first and I’m, unfortunately, not going to be the last. Everybody has an experience or a trick or something to do. I knew walking was my thing for treatments and staying whole [at] that point.

Family conversations about cancer

[In] my first round of chemo, I was in the same hospital room that he was in and I walked the same hallways. I actually have a picture of him walking with my mom and I was walking behind him. Then, two years later, I’m walking those same hallways. I had some of the same nurses as he did.

When he first got sick, I listened to Bob Marley’s Three Little Birds. “Don’t worry about a thing. Everything’s going to be all right.” My mom is from Jamaica so it’s special to us.

I would listen to that song every single morning when he first got sick and I never told anybody. He would also listen to that song when he was in the hospital for his stem cell transplant. [For] three weeks, he would listen to that song every day as well.

That was our father-daughter dance. It all says it in the song. “Everything’s going to be all right,” whatever it is. We both know that.

Stephanie V. and dad
Stephanie V. with parents

There’s probably a lot we could say to each other, but I don’t think we need to because we both just know. It’s not a great world to be around, but I think there’s a lot of beauty that comes out of it with the people that you meet [and] other experiences that you see.

We know that we are healthy. The other people that we see in that unit are sick people. We are very fortunate. I don’t think that goes unnoticed either where we were able to control what we could, whereas we know there [are] a lot of situations out there where you can’t. I think that goes unsaid as well, but we both know it.

For anybody who’s going through anything, whether it’s cancer or seeing an individual go through it, there are definitely dark times but after every storm, the sun does come out and shine. Trying to keep your head up in those times is helpful, no matter how hard it is.


Stephanie V.
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Health Insurance and Cancer Treatment

How Does Health Insurance Work for Cancer Patients? A Lawyer Explains It All

Abigail Johnston feature profile

Abigail Johnston was diagnosed with stage 4 metastatic breast cancer after she found a lump in her breast.

After transitioning from a busy career to going through cancer treatment, she started her own nonprofit, Connect IV Legal Services. She recruits lawyers to do pro bono work for people with stage 4 cancer.

In this conversation, Abigail uses her experience as both a cancer patient and a professional lawyer to answer common questions about health insurance and cancer care. She also offers her top tips for getting the most out of your health insurance plan.

She talks about the different types of health insurance, the role of insurance brokers, CPT codes, the importance of understanding your insurance policy, and financial assistance programs for cancer treatment.


Does My Insurance Cover My Cancer Diagnosis?

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Cancer Health Insurance – A Lawyer Explains Top Tips & Resources



Introduction

It’s been more than 20 years since I graduated from law school and I’ve been a licensed attorney in Florida ever since then.

I [practiced] different types of law, [including] personal injuries [in] the beginning so [I was] dealing with people who had car accidents, medical malpractice, or some product hurt them, that sort of thing.

Over time, I transitioned into family law, [which] had to do with divorces, child custody, alimony, [and] all of those things that happen when a family is legally dissolving. [From] there, I got a lot of exposure to Medicare, Medicaid, and Social Security, not always knowing exactly what was going on in those situations and having to figure it out and troubleshoot it. That all served me very well when I was diagnosed with stage 4 metastatic breast cancer in 2017.

I like to call myself a professional patient at this point because, basically, I go to the doctor and that’s my job, as well as taking care of my kids. From going to the doctor maybe once a year to a specialist doctor’s appointment once a week, it seems like sometimes, that was a really big adjustment.

Dealing with all of the stuff that came with that on a personal level, I started seeing so many of the things that are broken in our system and how hard it is to access care.

That led me to start my own nonprofit, Connect IV Legal Services. I recruit lawyers to do pro bono work for people with stage 4 cancer. I also run legal clinics. As I began to talk to many people, I started seeing a whole lot of trends in questions, issues, and solutions. 

Abigail Johnston
Abigail Johnston

Different types of health insurance

Health insurance can be divided into two buckets, private and government, and that [has] to do with which entity is paying.

Private health insurance

Most people get private policies through employment, whether your employment or your spouse’s employment. When that’s not a possibility, through the Affordable Care Act, there are health insurance companies that participate in the marketplace. You can always go directly to a health insurance company and get a private plan, whether that’s through the marketplace or not.

The good thing about the marketplace is that there is [a] structure in terms of what has to be covered and opportunities to get subsidies that usually depend on income.

The challenge for the marketplace generally is that every state is completely different. Some states will have one participating provider, other states will have more so there will be some more competition. The marketplace can be complicated.

Continuation of health coverage (COBRA)

For people who have left their employer, there is COBRA coverage, which is supposed to cover you for up to 18 months after you leave a position.

Government healthcare programs

Government plans have different types of structures.

Medicaid is tied to income. The program is usually offered to people [whose] income is tied to the poverty level. How that is evaluated usually is the poverty level times 100% or times 400%.

Then you get to the point where Medicaid is both federal and state. Some states have expanded Medicaid, some states [don’t] — that can be super complicated and is usually where you need a social worker to help you figure out exactly what you qualify for [and] which programs you don’t.

You can access Medicare through Social Security disability. For people who have been diagnosed with a serious illness, there’s a five-month waiting period for Social Security disability. Once that five-month waiting period has expired, you have 24 months before you are eligible for Medicare.

If you’ve been diagnosed with a serious illness like metastatic breast cancer, five months [after] your date of diagnosis, you’re eligible for Social Security disability. Then 24 months later, theoretically, you are eligible for Medicare. You have to have applied for Social Security disability. You can’t just sit around and wait. In order to qualify for Medicare, you need to apply for Social Security disability.

Abigail Johnston with group of ladies
Abigail Johnston family Christmas picture

Medicare has a whole lot of parts. Part A is offered for free once you’re eligible for it and that covers hospitalization. The nice thing about that is you can have Medicare Part A and private insurance at the same time, which is what I have.

I have my private insurance through my husband and then I have Medicare Part A. I go to the hospital and pay zero because Medicare covers whatever my private insurance doesn’t cover. It’s a very seamless process. It works great for me.

Once you get to B and I think all the way to M, they cost money. You can also get Medicare based on your age. You start getting different types of benefits.

Once you hit 65, sit down with a Medicare broker. For those of us in the metastatic cancer community, our treatments, our medication, our doctors, [and] our scans are all in the top tier, the things that cost the most.

You may have heard of the donut hole. A lot of people who went on Medicare and thought that they had coverage for medication realize that there was this hole. The most expensive drugs were not covered or not covered without a really significant out-of-pocket cost.

Insurance brokers

Should cancer patients use an insurance broker?

I always recommend working with a broker because this is what they do. They have you list your medications, your doctors, and your scans then they refer to your policy to explain what you’re covered for.

I know some people sign up for one thing for the first six months and then sign up for the second thing for the second six months because there [are] different benefits to different parts.

Insurance brokers who specialize in Medicare are paid by the plans so you pay nothing out of pocket. I believe [they] are really key in designing coverage that will actually cover what you need to have covered.

hands on laptop with notebook on the side
How do you find an insurance broker?

I believe all insurance brokers have to have a license. You can always Google “insurance brokers in my area” with your zip code.

I recommend that you look for a broker that specializes in Medicare and then I suggest you ask, “How many people with metastatic breast cancer have you worked with?” It really is a bit of a niche.

I have some insurance brokers that I work with and I send the people with MBC to them because I know that they have done the extra work to really understand metastatic breast cancer.

There are also brokers in the marketplace so they would help you design or pick the right plan within the marketplace as well. A Google search would usually give you somebody.

I also recommend that you ask the social workers or nurse navigators at your cancer center. A lot of times, they’ve worked with people and developed relationships with brokers that have some kind of expertise or extra training.

Financial assistance programs

Most pharmaceutical companies will have a foundation and specialized copay assistance programs.

Copay assistance programs are designed to help you with your copay. We’re in that top tier. Even if you have an amazing health insurance policy, a lot of times, based on the negotiations between the pharma companies and the health insurance company, you may have a significant copay.

If you have private insurance, the copay assistance programs can come in and defray that cost. Quite frankly, I think that’s the least that they should do because the amounts of money that are being paid out by health insurance companies are pretty significant.

Pharmaceutical companies put [in] a whole lot of time, effort, and money. They expend that in order to develop medications so the price points are set based on how much they had to put in.

When you have private insurance, you have access to these copay assistance plans. In my experience, typically the pharmacy where you get your medication filled can help you apply for those things. Otherwise, it’s a pretty easy process.

The problem many people encounter is when they are on either Medicaid or Medicare, [they] no longer qualify for those copay assistance programs. The reason for that is how Medicare is able to negotiate with the pharmaceutical companies on behalf of everybody in Medicare.

There are certain perks that are no longer offered because they’ve already negotiated as a good rate as they can with the pharmaceutical companies. At that point, some people will get a $2,500 or $3,000 monthly copay until they reach out-of-pocket maximums.

Abigail Johnston in the hospital
insurance policy

Understanding your insurance policy coverage

Regardless of what insurance company [or] policy — government, private, COBRA — the most important thing that people need to know about what they have is what it covers.

Most insurance policies are going to be hundreds and hundreds of pages long. Typically, you can get that directly from the company. They are usually in PDF so you can search for keywords.

Deductible

There [are] a couple of key things that I think everybody should know. Number one is your deductible. That’s the money that you have to pay every year before you hit your out-of-pocket maximum before sometimes some benefits kick in.

There may be more than one deductible. I have a deductible that applies to doctor’s visits. I have a deductible that applies to medication. Different numbers. I have to meet both of those. I have to pay both of those things before my insurance kicks in.

Out-of-pocket maximum

The second thing that’s super important to know is your out-of-pocket maximum. I doubt there [are] plans that don’t have this. You have to pay up to X amount and then the insurance kicks in either at a different level [or a] different percentage.

Between your deductible and your out-of-pocket maximum, that’s what you’ve got to plan to pay throughout the year before the insurance coverage typically kicks in at a higher percentage.

Sometimes you can have what’s called coinsurance — that’s usually hospital stuff or procedures. But your deductible and your out-of-pocket maximum are the two things that you really should know and have in your mind.

Number one, you have to budget for that. Number two, it’s really nice to be able to walk into a doctor’s office and be like, “Nope, I’ve met my out-of-pocket maximum. I don’t have a copay today. I don’t have anything to pay.”

laptop money calculator
Limits on scans

In addition to knowing those big picture numbers, knowing other numbers like what kind of scans and how many will my insurance cover.

Medicare is the most restrictive. There’s actually a lifetime limit on PET scans, which many cancer patients get.

A PET scan is where you are injected with a radioactive isotope that reacts with metabolic activity. Because cancer is really, really active, you have things that light up — or you hope you don’t have things that light up. When you have cancer, things light up and that can give a doctor a really good understanding of how metabolically active the cancer is.

Why would insurance deny a PET scan?

If your doctor orders a PET scan, sometimes — and, quite frankly, a lot of times — the insurance company will challenge that order by saying, “Is this really necessary?” Every doctor’s office I’ve dealt with knows how to deal with that. They schedule [a] peer-to-peer where your doctor is talking to a doctor that’s hired by the insurance company.

Peer-to-peer review

Here’s something really important. Your plan says what you are entitled to in that peer-to-peer discussion.

What’s a peer? The first peer-to-peer conversation that my medical oncologist had, who had 30-plus years of experience, was talking to somebody who is a family medicine doctor who had been out of medical school [for] five or six years. Are those peers? I don’t think so.

I objected. Unfortunately, my doctor had to do the peer-to-peer a second time, but they actually provided an oncologist with a similar level of experience.

As a person who is paying the premiums, typically, that is in your policy. You are entitled to have the insurance company pay for a peer to talk to your doctor. In my experience dealing with a lot of these and my own personal experience, when an oncologist is talking to another oncologist, things don’t get denied as frequently.

two people talking

When your oncologist is talking to somebody who has a specialty that’s different from oncology, there’s a huge amount of education that has to happen. Your doctor should not have to spend time justifying the treatment plan.

They should be able to talk to somebody who understands what they’re talking about. That is different from if you’re trying to do something experimental, but, at a basic level, you are entitled [to] your doctor to be able to talk to a peer.

Typically, when an insurance company denies something that is standard of care or is typically done, that’s it. They have [a] peer-to-peer discussion, it’s approved, and it goes forward. If it doesn’t, then there are other things that have to happen.

Before many insurance companies pay for a PET scan, they will require a bone scan and a CT scan. [With] a bone scan, you’re ingesting some kind of radioactive tracer that reacts with different things in your bones so cancer, instead of lighting up on the scan, shows up as black. Sometimes MRIs then are ordered to look at the organs more carefully.

This is the thing that I’ve heard from doctors. Doctors like different scans. They like looking at different scans. They like comparing different scans. If you’ve already always had one kind of scan, they like to look at that other kind of scan.

Your doctor is going to be the one to know what scan they need in order to see what they need to see. They will work with your insurance company the best they can to get the images that they need in order to make good decisions.

I know that some people get really, really, really upset when they can’t get a PET scan because their insurance won’t cover it. Doctors know how to deal with this. Whereas some doctors think PET scans are the gold standard, they also can work from a CT scan and a bone scan.

The biggest thing with this is not to worry as a patient. The doctor is going to do what they need to do to get the scans that they need to get you the care that you need.

Yes, insurance companies are a bit of a gatekeeper when it comes to this, but if it’s really necessary, your doctor or their office knows how to get things covered.

doctor examines mammograms

The healthcare system is hopelessly confusing and hopelessly broken in so many ways that we need every advantage we can possibly find in order to navigate all of it.

The thing that I’ve learned [from] all of this is that everything’s negotiable. If you need a particular test or scan and your insurance company is not cooperating or your doctor is struggling to get things approved, call up companies, ask for a reduced rate, and ask for them to waive their fees.

Even if you have private insurance, ask for Medicare rates because those are usually lower than health insurance is able to negotiate. Medicare is negotiating on behalf of millions of people so they can get better rates. A lot of times, there’s a lot of room to work with if you need a particular thing done.

Another thing that I’ve noticed is when a particular medication or procedure is approved by the FDA, it can take a little while for that medication or test to be added to the list at your insurance company. If it’s a medication, it’s called a formulary.

[If] something is approved by the FDA, it probably won’t be added to the formulary for a couple of months. Sometimes, that can create some delays for patients. “Hey, this new medication just got approved by the FDA. I want to get on it right now. I’ve been waiting for it.”

Unfortunately, that can mean a bit of a delay just because it does take some time for health insurance companies to get all the information they need from the pharmaceutical companies into their formulary, figure out how much all the costs are, [and] do all the negotiations.

It can be a really complicated process. In that particular situation, that’s where the foundations that are attached to the pharmaceutical companies can often get you some supply before they work out all those kinks.

Current Procedural Terminology (CPT®) codes

In order to get reimbursed for the things that they’re doing, they have to use a CPT code. Every procedure, medication, time, or anything they want to get reimbursed for, there’s a code for that.

There’s been a recent controversy where some of the CPT codes changed. There’s a particular surgery called the DIEP flap surgery that a lot of people who are getting mastectomies and reconstruction like to get. In the way that they changed the reimbursement schedule, it means that doctors will probably no longer offer that surgery and so a lot of people are very concerned about that right now.

There is a separate, administrative body that sets not only the CPT codes but also recommended reimbursement rates. Once that’s been set, the coders in the doctor’s office send a billing document. Then they have the CPT codes and they’re billing for whatever procedure was done.

Now, these coders are doing this all day long. These are human beings. They’re selecting codes and, hopefully, it’s correct.

For those of us who are having the same visit every month, the same blood work every month, saving those explanations of benefits that you get from your insurance company, you can spot trends. You can [see] what they’re billing for every single time so if they’re suddenly billing with a different CPT code, you can see [if] that was something they did incorrectly.

holding credit card using laptop

Setting up payment plans

Every single doctor’s office and medical practice is set up to do payment plans. If you need to spread out paying for your medical bills at $20 a month or $5 a month, whatever payment plan you can afford, setting that up in advance is always better than getting a call from a collection agency.

Talk to your doctor’s office and say, “How can we do this? How can we set up a payment plan?” Then you’re meeting an out-of-pocket maximum by spreading out those payments.

I have not heard of any medical practice that won’t waive interest if you’re consistent with your payment plan. Ask if they would waive interest so it’s not like you’re financing a debt. You’re just on a payment plan until you pay it down.

Most, if not all, cancer centers will have a financial aid office. Sometimes it’s run through a chaplain’s office or benevolent office. Just like pharmaceutical companies, about every major cancer center has a foundation attached to them.

Now, a private doctor in private practice may not have a foundation, but you can bet — and it’s a sure bet — that they’ve worked with people who have financial struggles because of medical treatment. Approaching them upfront and saying, “Look, this is going to be an issue,” and working out a plan is one of the best possible things you can do.

Social workers are the ones who usually have the most information on what local organizations provide financial assistance for patients. There are lots of them. Social workers are a great point of contact.

Sometimes a nurse navigator will have some of that information as well. Start with the place [where] you receive your medical care from and work with them on how to meet those bills.

Financial assistance from cancer organizations

There are organizations that have various funds. The American Cancer Society has a fund. If you get on their mailing list, then you find out when that fund opens.

There are many different funds. Some will be specific to, say, people of color, people with MBC, or moms. Whatever the particular circumstances are, get on those mailing lists so that you know when there is a fund opening.

Living Beyond Breast Cancer also has various funds — some focused on MBC, some focused on young women, etc. The Susan G. Komen organization also has some funds available.

Universally, what happens with these funds is that they open and close pretty quickly. Everybody’s waiting for them to open so that they can apply.

There’s a wonderful organization in the northeast called Infinite Strength that specifically focuses on financial support for single moms with metastatic breast cancer. You have to have a child under 18 in the home. The Cancer Couch typically just funds research; that’s another place where people will raise money.

There [are] a couple of other organizations that will fund very specific things. It will fund, say, just medical costs or just your mortgage, utilities, etc. There’s something called the Pink Fund out of Michigan that’s pretty much funded by the Ford Corporation. They also provide funding.

Abigail Johnston Surviving Breast Cancer org

Every single one of these organizations has an application process and most are related to household income. People at 100% or 400% of the poverty level seem to be the range that I see.

Then there [are] other places where you say, “I have this diagnosis,” and they give you a gift card or they give you $100 whenever their funds open.

Unfortunately, there’s no place where all of this information is kept. Most people who are in this situation are looking at every different possibility. Some social workers will be a really good contact for that.

At the end of the day, cancer is expensive and financial toxicity is real because there’s only so much money to go around.

man holding phone

I think one thing that is very important for everybody to know is that as a consumer, you are protected by the Fair Debt Collection Act. If you are being called, i.e., harassed, by a collection agency or even by your medical office, if you say, “I dispute this debt, I do not owe this debt,” for whatever reason — you don’t even have to give a reason — they are no longer allowed to call you, harass you, [or] send you letters.

They have to stop or they incur fines. The only thing that they can do, at that point, is [to] file a collection lawsuit against you, which is something that most are not going to do unless it’s a large amount of money.

Don’t keep taking the harassment. If you’re being harassed and you legitimately cannot pay a bill, simply explain. “I don’t agree with this bill. I don’t agree that I owe this. Please stop calling me.” They have to stop harassing you.

Way down the line, bankruptcy is an option. I think I saw a statistic that over 60% of bankruptcies in the United States are filed because of medical debt. That is probably one of the big reasons why most medical offices, cancer centers, etc., will enter into payment plans with people because they know if they don’t, they’re going to get nothing and something is better than nothing.

There [are] a lot of options and different possibilities. The one thing they cannot do is refuse to provide care. If you are going to a cancer center and you have bills, they may put some pressure on you to pay them when you go, but they can’t refuse care based on a bill that is pending.

Words of advice

If you have a caregiver or somebody in your life who is looking for something to do for you, organizing the medical piece of things — gathering the information with your insurance policy, keeping track of your explanations of benefits — [is] a great job to give somebody who is organized [and] wants to help. 

Have a notebook [when] you’re talking to insurance companies, your doctor, drug companies, whoever you’re talking to. I have a notebook that sits beside my computer. I’m immediately writing down [the] date, time, who I talked to, and what happened.

I always ask for confirmation numbers, whatever can get them back to whatever discussion [we] had. I don’t know about anybody else but once chemo brain happens, there are just things that don’t stick anymore.

Unfortunately, it’s confusing. For instance, my mom went in for chemotherapy. They walk out and they’re like, “You owe us $40,000 or you can’t get chemotherapy. Oh, but by the way, if you cross the street, you’ll pay $50 out of pocket.”

A lot of people don’t understand that prices for medication change based on how you get it, like a pill, injection, or infusion. It’s the same medication but it’s billed [in] different ways.

Then it’ll be billed differently whether you get it in a doctor’s office, in an outpatient center, in the hospital, outpatient at the hospital, [and] inpatient at the hospital. That’s insane because there’s no way any patient could ever know those things except by shopping, basically, or if there’s a social worker who’s very aware of that.

Abigail Johnston medical binder
Abigail Johnston with mom

In the situation with my mom, they were like, “Just walk across the street.” Yes, it’s business, but I do find that most of the staff really want to find a solution for the patient. But sometimes, it’s just hopelessly confusing.

There is a bill pending called the Cancer Drug Parity Act that would streamline that for the patient. You pay the same no matter how you get your medicine, no matter where you are. But I don’t know that it will ever pass because it would affect millions of contracts that are being made all the time between all of these different entities.

Part of the Cures Act says that when you get a scan, as soon as the doctor gets it, you have to get it at the same time and that’s usually pushed out in a patient portal.

Medical practices have to be upfront as far as what they’re charging. Typically, when I walk into an urgent care center, there’s a poster and it’s like, “This is what you’ll pay if you have insurance. This is what you pay if you’re paying cash.”

Usually, if you’re having a procedure or getting medication, they will give you an estimate as far as what it will probably cost. Hospitals and doctor’s offices are required now to be more transparent about those things.

If the cost of something is not covered by your insurance policy, [if] you’re going to have to pay some out of pocket, [if] you haven’t met your deductible or your out-of-pocket maximum and you know you need to have a payment plan, these are all things that are good to just ask about upfront. Sit down with the financial person to work out a plan.


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Amy’s Stage 3B Colorectal Cancer Story

Amy’s Stage 3B Colorectal Cancer Story

Amy H. feature profile

Amy was told her symptoms were all in her head. As a mom of two, she began to feel “off” and tired and got some bloodwork to assess her health. After her bloodwork returned clean, her doctor attributed her symptoms to anxiety.

She started seeing a counselor and prioritized her mental health but her symptoms only got worse. After finding blood in her stool, she demanded a colonoscopy.

After the procedure, her doctor admitted he was wrong and Amy was diagnosed with 3B colorectal cancer.

She voices how advocating for health saved her life, the importance of knowing your genetics, and how she’s working to break the stigma of colorectal cancer.

She shares her experience undergoing stomach surgery, learning to live with an ostomy bag, and finding her “new normal” after cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Amy H.
  • Diagnosis:
    • Rectal cancer
  • Staging: 3B
  • Initial Symptoms:
    • Feeling off
    • Abdominal pain
    • Bloating
    • Weight loss
    • Blood in stool
    • Thin stool
    • A massive shift in bathroom habits
    • Exhaustion
  • Treatment:
    • Radiation
    • Chemotherapy: Xeloda & oxaliplatin)
    • Surgery: total proctocolectomy with ileostomy, APR reconstruction, and radical hysterectomy

Let it out, cry it out, and then get up and try to live every day the best that you can. It slowly, slowly, slowly does get better after cancer.

Amy H. ostomy bag
Amy H. timeline


We all just do the best we can where we’re at. If I just do one step at a time, one test at a time, one idea at a time, I’ll get there.

Introduction

I’m 37 [and] am a mom of two young girls. Being a mom takes up so much of my life. It’s very encompassing, but I love spending time with them.

I love concerts, spending time with my friends, [and] traveling to new places.

Amy H. family
Amy H. family

Pre-diagnosis

Initial symptoms

About a year before my diagnosis, I really was not feeling myself — rundown, irritable, [and] not feeling good. I chalked it up to being a mom.

I saw my primary care physician and had some blood work done. Everything came back standard. My symptoms weren’t really directly [associated] with colon cancer at that time.

I sought mental health treatment, [talked] to a counselor to figure out if this was something going on in my head. I know that’s a common theme among women who’ve been diagnosed with cancer. We tend to be given this list of other reasons that it could be and then we run down that list.

My more acute symptoms came closer to my diagnosis and that entailed really intense abdominal cramping. I had a total change in my bathroom habits.

I was [losing] weight and I was not intending to. I’m a smaller person. I was looking very thin, even for me.

I went from being slow-moving in the bathroom [to] things running through me. I could tell something was up that way.

Then finally, the very serious symptom that usually pushes people over the edge: I had blood in my stool.

It was a week before our family went on a camping trip. We love these cabins in northern Arizona and we go often. That week before that, I was starting to have blood. At first, I was just like, “Let’s hope that goes away, whatever that is,” and it just continued and continued.

I remember thinking, I’m so embarrassed. I don’t even want to have to tell my husband [or] my doctor any of this, but I knew that it was going to take something serious to figure out what was going on.

At that point, I knew. I had [a] family history of cancer. My grandma [had] colon cancer when I was a baby, literally a newborn. She fought colon cancer in 1985. And so I had in my mind that this is not normal.

I went to my OB because as a woman, I feel like you just look to your OB first. She said, “No, this is not normal bleeding for hemorrhoid or post-childbirth.”

The bleeding was probably the biggest indicator that something was truly wrong, but those other symptoms can be a little vague. Knowing your family history and your body [are] really important.

It was late summer, right around August. [In] September, things started to progress. I put in to see my OB. She could see me two and a half weeks later. Saw her two and a half weeks later. She told me, “This is wrong. This is not right.”

Amy H. family

I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off.

Amy H. in the hospital

She referred me to the GI who saw me, again as it goes, two and a half weeks later so now we’re in October. [I] had to kind of fight him for that colonoscopy and basically tell him, “I don’t care if I have to write the check. I don’t care what it takes. I need this colonoscopy to know what’s going on inside of me.”

It was a little intense because I feel like I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off.

I remember there was a point where it was like, “Either put me on the schedule or just call your security and they can escort me out because I need this colonoscopy.” He was like, “Whoa, whoa, whoa, Miss. It’s okay. I will give you the colonoscopy.”

He was happy to do it for me. It scares me sometimes to think that had I just accepted the answer, had I not been the hard head that I am, this might have not happened in the time frame that this all happened.

I needed that colonoscopy so I could get into treatment so that I was ready for surgery because the world shifted after all of this happened.

I found myself having to really pull that backbone out and say, “Nope, I need the colonoscopy. I don’t care how unglamorous, I don’t care that I have to do prep. I need it.”

Something I’ve learned through this about colonoscopy is that’s really important to know exactly what’s going on in your colon. It’s the best way for doctors to diagnose you if you are having symptoms. Of course, if you’re 45 or older, no questions. You need to get it done.

Even with my family history [and] the acute symptoms I was showing, it was pretty startling to me, looking back, how I still had to advocate so hard. I really shouldn’t have because I had all of these things lining up.

I think it’s why I really want to get this out there. You know your body. I was telling medical professionals, “Something is wrong with me.”

To their credit, they’re going off of so many numbers, but the numbers are changing. Genetics and genetic predispositions, we’re learning so much so quickly. They’re playing catch-up.

Amy H. on the bed
Amy H. with daughter

Diagnosis of Stage 3B Rectal Cancer

Once they did the colonoscopy, to that doctor’s credit, he did come and face me to say, “No, I was wrong. You have cancer.” He didn’t use the word advanced cancer. He just said it’s not new. It’s been there.

Come to find out that it probably wasn’t. It was likely about two years. Because of the Lynch component, I think it propagates faster. It’s one of those things [of] him not knowing as much about Lynch as probably a doctor who is in GI now coming through. I’m sure now he handles it much differently and is educated, but it is hard to be that kind of person who shifts over the understanding.

It was an intense conversation, but I felt like, “I don’t even care what you think of me, Doctor. I’m going to say I need this. If I’m wrong, great. That’s the beauty of this test. We can know that.”

I was very drowsy from my colonoscopy, but he had to come out, grab my hand, and say, “Amy, it is cancer. You were right.” I know that was probably a watershed moment for him in his career, too, because he did tell me I was one of the only patients he’s ever diagnosed that was under 50 or 60.

I’ve talked to other people in the colorectal world about this since then. Sometimes, it’s a wonder if you’re not getting people diagnosed because you’re not providing the screening to them that they really should be getting. How many people slip through the cracks?

I know every person who shares their story says, “Be your own advocate,” and then when they push back, go further. Push more.

Initially, when I came out of the colonoscopy, the GI doctor told me he didn’t think it was new, but he believed that I was probably about stage 2. It was arbitrary at that time, but he was looking at the size of the tumor, where it was, and everything. They really can’t tell you much initially.

I left that colonoscopy knowing I had cancer, knowing it was not a little tiny nothing that they could have taken out. He didn’t touch anything when he was in there because he was so nervous about where it was at. Was I right on the verge of it breaking through my wall, the colon wall, or any of that? 

You get thrown back out into the universe with, “Okay, now you have cancer and it’s going to take about a week for us to do this test, this test, this test, this test to say you’re either stage 1, 2, 3, 4.”

During that time in between, I remember saying, “I want to remember this time,” because I didn’t know if the cancer was everywhere. Immediately, it felt like, “Oh my gosh, my body is riddled.”

Thankfully, I was able to have those three procedures within that week’s time. I had a more intense colonoscopy then I had [a] CT and two MRIs to come out with the diagnosis of stage 3B, which means that it had not broken through that wall. It was very close. We were very close to widespread impact.

Amy H. with daughter
Amy H. with daughter

The GI doctor referred me to their person; I went a whole different way. But the oncologist I found, he’s amazing.

[He] and his team right away said, “This is Lynch syndrome. We want you to have the blood test, but you likely have Lynch syndrome. That’s why you have it so young and that’s why it’s so advanced.

“Here’s what we’re going to do if this test comes back positive. Here’s the plan.”

They never told me what the other plan would have been. It was like, “We’ll talk about it if it doesn’t come back positive,” but it did come back positive.

My tumor itself is a Lynch-related tumor, but it’s not MSI high (high microsatellite instability). 

What is Lynch syndrome?

Lynch syndrome is a genetic predisposition to certain cancers. There is a list of them but most notably, it’s colon cancer.

In 2011, I lost my mom [to] uterine cancer. At the time, they didn’t quite understand the link between the two. Lynch syndrome was already being talked about, but it takes time for the information to get out there.

Unfortunately, when my mom passed, it was just like, “Well, that was a terrible thing and now move forward in your life.” Whereas if I had this information, they’d say, “Your grandma passed of colon [cancer], your mom passed of uterine [cancer] — these are Lynch family cancers.

“You need a colonoscopy now and have them every year, every three years, depending on your results of those,” and I would have caught my cancer before it became a bigger issue for my body.

The beauty of screening is some of these treatments for early, early stage cancers, especially treatable cancers like colorectal cancer, are very simple procedures. You go home at the end of them. I wish I had that information, but because I had [a] family history, I truly believed that I had something really wrong with me.

The women in my family had a rough go and I felt like, “All right, it’s my turn now,” and that was in the pit of my stomach. So my mom and my grandma did not die in vain.

Amy H. with mom
Amy H. in the hospital

Every person’s treatment plan is so individualized. But knowing that ahead of time, we went with a treatment plan that made sense for Lynch syndrome, which included a pretty drastic surgery.

That all happened within a week. Two weeks after getting diagnosed, I went in to get tattooed on my hips and started daily radiation.

We’re well into it and need to act quickly. They moved really fast to get me into treatments right away.

I had just turned 34 in May and this was the end of 2019. I felt really young.  I meet people who were in their 20s when they were diagnosed. Sometimes it feels like people didn’t even get a chance to really start their life before they were dealing with this alternative life.

But well beyond Lynch syndrome or colon cancer, understanding your genetic makeup is so pivotal to your health care. We’ve heard about it all over with BRCA and Lynch syndrome is just another one of them.

We just need to get people in tune with their family history. Ask questions. I’m sad a lot of my family members are gone, so I can’t ask them about people in the past.

Ask questions while your parents are here, especially people my age. Get that information down. A lot of people’s families hide colon cancer because it’s not glamorous to talk about. It’s embarrassing. We’re more willing to talk about poop, bathroom habits, and colonoscopies than our grandparents were so make sure you are getting the full story.

That’s really tough but it’s a sad fact. I am not that uncommon anymore and it is showing up more and more.

There [are] all kinds of theories around why and we can theorize and all of that, but I think part of how we handle this is that we start changing how we’re treating our patients, screening them, [and] hearing their symptoms.

We need to stop telling women that they’re anxious, stressed, need more sleep, less coffee, lose weight, or whatever it is.

Women know their bodies. I’m not saying anything that men don’t, but we know our bodies. We know what’s normal for us so speak on it.

If you’re feeling something different inside of you that you’ve never felt before, it doesn’t hurt anyone for you to look into what it could be.

Amy H. with mom

If you’re feeling something different inside of you that you’ve never felt before, it doesn’t hurt anyone for you to look into what it could be.

Amy H.'s stage 3B Rectal Cancer surgery scar.

Treatment of Stage 3B rectal cancer

I tend to think, Gosh, my alarm bells went off just in time to get me in for that colonoscopy so that I could start my process.

My oncologist referred to it as a marathon so we did it in three legs. The first leg was [the] initial radiation and chemo. Six weeks [and] took some time off.

Surgery was the second leg, which is a bear. I had a 9.5-hour surgery. I had what’s called total proctocolectomy with APR reconstruction. They took everything below my small intestine and rebuilt my bottom with muscle and tissue from my abdomen. I was cut open on my abdomen. I had an ileostomy placed [and] live with an ostomy bag now.

At the same time, because of this genetic component [of] Lynch syndrome, I chose to have an elective hysterectomy. Had two kids, really fortunate to get to be a mom. Love my kids and I love children.

The idea of my life going farther, who knows what would have happened? I could not have that risk. I wanted every risk out of me. That was just the way I felt [at] that time. I said, “Take it all, doc, literally everything.”

They removed [part] of my tailbone because of where it was. They were worried about it. I said, “Don’t need it. Don’t need it.” That was tough.

After surgery, I did have a nine-week break then I went in for IV chemo, which was just another part of the marathon. I did six treatments and slowly started to ease back into trying to be a normal person or the person that I used to be.

Follow-up protocol

I’ve learned through that process that there’s no going back to square one or to normal — not with your body, not with your mind, not with everything.

I feel really good, which always kind of worries me a little bit, but I’ve had no evidence of disease since my surgery. I’ve had all clear scans.

I do a tumor residue blood test. Thankfully, all of those have come back clear.

My ostomy works great. I’m learning, growing, and accepting that and just my body overall after everything that’s happened.

Amy H. in the hospital
Amy H. ostomy bag. Amy's is for her small intestine so it’s referred to as an ileostomy.

Living life with an ostomy bag

[An] ostomy bag is worn on your abdomen. Mine is connected to my small intestine so my small intestine comes out of my abdomen. There’s a tiny little piece of it called a stoma; it’s just another word for opening.

You can have a stoma for your bladder, you can have a stoma for your colon, or you can have a stoma for your small intestine. Mine is [for the] small intestine so it’s referred to as ileostomy.

Different ostomies have different schedules, but I tend to change my bag every third morning. In between that, my bag just stays on. I empty it when it’s full.

My life as far as using the bathroom is altered but the only part that’s really impacted by that is the part that happens when I close the door and no one’s in there with me.

[As] life does, it takes a really long time for it to re-settle down, but it does settle back down.

Living life with Lynch syndrome

Through talking to other people who’ve been through this, I’ve been learning how to live my life with Lynch syndrome. It’s a roller coaster.

I have to be scanned more often than the average cancer survivor. I have a myriad of tests because I have these other risk factors.

I think it’s been going pretty [well]. This is hard for anyone. It’s a total change in your perspective. What your daily life is like changes.

It gives me this new drive. I really want other people to know about this. I want other people to know about going through cancer treatments and what that’s really like so you’re not feeling like every post is only [about] the positive side of it.

When I first started sharing my journey, that was where I was at. I was like, “I’m gonna do this. I’m gonna do it with a smile. I can handle this.” There are parts of it that if I just wouldn’t let myself feel those feelings, I don’t think I would have ever come through them.

My tagline, I think, is just being authentic through everything that’s happened to me. There are parts of me that I feel have grown. I appreciate the person I am now.

Amy H. is a stage 3B rectal cancer survivor.
Amy H. arm bruise

There [are] other parts of me that feel like I was damaged during this. My mind is still trying to grasp: how does somebody go through this and keep going?

Part of my success in it is truly just seeing other people do it. Other people have lived this. I’m not the first person. I’m not the first person with an ostomy. We just got to keep changing how we talk about this stuff, making it less taboo.

On the other side of it, after cancer is over or after treatment is over, is the fact that this is [a] different kind of fight. Keep going and use that shifted perspective for positive things.

Shifted perspective brings me down sometimes because I see so many people walking around not taking advantage of their health or taking advantage of [the] knowledge that’s available to them.

I also feel a lot more self-assured. I feel like I can do things that I didn’t think I could do before. I’m more independent as a person. I’m more confident. I’m more willing to look at myself and say, “All right. This is the body you have now.”

One of [the] first things I wrote that really started to change the tide of how I was sharing my story was, “Are you just going to lay here and cry about this all the time or are you going to get up and live?” Got to get up and live.

Let it out, cry it out, and then get up and try to live every day the best that you can. It slowly, slowly, slowly does get better after cancer.

There are other parts that you have to have as a challenge, like going in for more screenings and staying on top of that.

I don’t think I ever heard of an ostomy before. When I was told that I was going to have an ostomy bag, I heard him say bag. I understood what he was saying about removing my colon and it was a little foggy there. But one of the first things I did was I went home and looked online.

I looked up “ostomy” on Instagram and wouldn’t you know it, there [are] a lot of really amazing people that have an ostomy. Not only are they amazing, but they’re smart enough to know that when you go looking for support.

I can go into a support group without anyone even knowing I’m there if I just look up #ostomy online. I can read about people who are doing this every day. I can see women in bathing suits owning this.

I thought, Gosh, I’m not even going in a two-piece bathing suit on my Instagram before my ostomy bag. I’ll never in a million years do what they’re doing. But seeing them made me realize that people are living with these things. It was really powerful for me.

I’m driven in this format of Instagram and social media [because] it’s so casual. People can see it and the more they see ostomy bags, I feel like that taboo comes down. We feel less like we have to hide it away or whatever.

Amy H. mirror
Amy H. ostomy bag

When I heard, ostomy felt to me worse than cancer. I just was like, “You’ve got to be kidding me. My life is going to be over. I’m going to be a monster. I don’t even want this.” I just melted down.

Then I could see people living positively with an ostomy and see women my age having one, too. It feels like you hear that, you start looking at it, all the brochures are old people. It doesn’t feel like a 34-year-old woman should have this.

I slowly got my mind wrapped around it. I tell people now, “At the time, the ostomy to me seemed like it would be the worst part of this whole thing. Now, the easiest part of everything I’ve been through is to live with an ostomy.” That impacts me so much less in my day-to-day life than the mental hardship of going through cancer, cancer treatment, [and] scans post-cancer.

When people come to me and say, “I’m going to have an ostomy bag,” I’m like, “Well, take a deep breath because this is a lot to digest.” It did take me time.

Any strong, brave, out-there person handling their ostomy well had those same feelings, too. They had a moment of, “I don’t know if I can even do this.”

Why I’m out here being a loudmouth is that I live my life with an ostomy. I am a mom with [an] ostomy. I chase my kids the same. I go to concerts. I hang out with my friends. I travel. I go on airplanes. I just did the Disney cruise with my two girls. I do it all with the ostomy. It’s not the way I saw my life when I was a little girl, but it’s not the worst thing.

Just keep going. Like anything we do in life, the more you do it, the less mind-blowing it is.

Go easy on yourself. This is such a hard process.

Words of advice

My message to anyone who is either recently diagnosed or still grappling with their diagnosis is just one thing at a time. One appointment at a time. Get your questions ready [and] have yourself organized, but focus on that one step at a time.

I remember trying to see the other side of surgery in my mind’s eye. When I couldn’t see that, I thought to myself, Am I going to die during surgery? I couldn’t envision what my life was going to be like. I couldn’t see myself having the ostomy and doing it.

But when I woke up [after] the surgery was over, I just did that same thing: one step at a time. I would say, “Oh my gosh, my drain’s full. Okay, drain my drain. Okay, my bag. Now I need to change my bag. Okay, one step at a time.” I remember changing my bag for the first time with shaky hands.

Just keep going. Like anything we do in life, the more you do it, the less mind-blowing it is.

Go easy on yourself. This is such a hard process. I’ve spent — and spend, I will fully admit — a lot of time beating myself up for not handling it better, not being a better advocate, [and] not knowing the things I felt like I should have known before.

I keep coming back time and time again to: we all just do the best we can where we’re at. If I just do one step at a time, one test at a time, one idea at a time, I’ll get there. It’s allowed me to learn a lot more than I ever thought was possible and make a lot of amazing friends.

Amy H. with husband

Cancer is just the worst club to be a part of, but truly, the best people I’ve met are cancer survivors. So if you are there, find a support system. It doesn’t need to be big, it doesn’t need to be grand, and it doesn’t need to be the things that we see on TV, social media, or any of that.

Find a few people who get it. Talk to them. Go easy on yourself and just keep going. This is hard, but it’s doable. Life is worth living.

Cancer is just the worst club to be a part of, but truly, the best people I’ve met are cancer survivors. Find a support system.


Amy H. feature profile
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CAPOX (capecitabine, oxaliplatin) Colon Colorectal Patient Stories

Haley Pollack’s Stage 3C Colon Cancer Story

Haley Pollack’s Stage 3C Colon Cancer Story

Haley P. feature profile

Haley Pollack had returned from parental leave when she started experiencing extreme fatigue, but she blamed it on postpartum. At the time, she had a 6-month-old baby and a 3-year-old at home. But her symptoms weren’t going away. She was diagnosed with stage 3C colon cancer at 37.

She shares how she learned about her diagnosis, how cancer impacted her as a young parent, and how she launched an organization called the Bright Spot Network to help other parents going through a cancer diagnosis.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


  • Name: Haley P.
  • Diagnosis:
    • Colon cancer
  • Staging: 3C
  • Initial Symptoms:
    • Constipation
    • Fatigue
    • Shortness of breath
  • Treatment:
    • Surgery
    • Chemotherapy: CAPOX (capecitabine & oxaliplatin)
Haley P. with daughters
Haley P. timeline


I didn’t feel good, but I did not feel sick. If the blood work hadn’t been covered by my insurance, I wouldn’t have gotten it, 100%…
That blood work ultimately saved my life.

Introduction

I’m a mom of two kids, Amira and Mona. I live in Oakland, California. I have a dog. I’m a knitter.

I’m the executive director of Bright Spot Network, which supports families where a parent has a cancer diagnosis.

Pre-diagnosis

Initial symptoms

In April 2018, I had my daughter Amira. I was 37. I had a really normal pregnancy [and a] pretty normal birth, but throughout my pregnancy, I was really constipated and had stomach pains. I was pregnant so [it] wasn’t super atypical.

After I had her, it got really bad, but I was nursing and was probably dehydrated. All these things [I was] really able to explain away.

Haley P. family
Haley P. pregnant

Constipation had become pretty debilitating. Finally, my husband was like, “You don’t have to live this way. Go to the doctor.”

I get there and I’m telling my doctor, “I’m constipated,” and he gives me some stuff for that.

But I’m also a little short of breath and I’ve been really tired. I had been basically gaslighting myself and telling myself that it was all related to being recently postpartum. Thankfully, my doctor didn’t. He said, “Let’s just get some blood work.”

»MORE: Read Nadia’s account of medical gaslighting

I got my blood work. I didn’t feel good, but I did not feel sick. If the blood work hadn’t been covered by my insurance, I wouldn’t have gotten it, 100%.

The next day, the lab called me. “Don’t get in a car, don’t drive. You are anemic. We don’t know how you’re standing on two feet.” That’s how it started.

The anemia [was] really what snapped me out of it. When my doctor [requested] blood work, it made me feel like maybe there is something else here. I felt like I was gaslighting myself. Of course, I’m tired. I’m a new mom. But [I’m] not really recognizing how deeply fatigued I was.

I felt like I was gaslighting myself. Of course, I’m tired. I’m a new mom. But [I’m] not really recognizing how deeply fatigued I was.

I think for parents, especially for women, there’s this extra that we put on ourselves that we can do all of these things. We can be [working] full-time at a really intense job, nursing in the middle of the night, and pumping at work. Doing all this stuff, it was easy to write off [the] tiredness. That blood work ultimately saved my life.

Having cancer in my family, I was shocked but not surprised to hear about cancer, if that makes sense. 

Diagnosis

I finally talked to a doctor and they said, “You need to get a blood transfusion right now. Let me reiterate that we are unsure how you are walking on your two feet.”

I was in urgent care because it was a Saturday. When I went in to go get [a] blood transfusion, that was the beginning of what set everything in motion. I saw how concerned the doctors were about this anemia.

I had this low-grade fever and the doctors couldn’t figure it out and that alerted me to how serious everything was.

It’s hard to get a colonoscopy if it’s not an immediate thing. It took me a few weeks to get on the schedule. I was signed up for it pretty early on but, in the meantime, I was seeing other doctors.

Haley P. in the hospital
Haley P. with daughters

At that point, people were just running through the possible scenarios. I knew it wasn’t my period and I knew it wasn’t childbirth, but it wasn’t until they told me, “You have cancer.” I still am shocked about it. I think a lot of cancer survivors and patients feel that.

After my colonoscopy, they were able to tell me immediately that they thought that I had cancer. They saw what looked like bleeding tumor in my colon and that was the cause of the anemia.

Things started to move fast. My mom died from breast cancer. Having cancer in my family, I was shocked but not surprised to hear about cancer, if that makes sense. 

In the weeks, months, and years really since that time, I really thought that I knew what cancer could do to a family. I was 16 when my mom was diagnosed and 25 when she died. But it’s different to be the patient and it’s also different to have little kids. There’s a different level of anxiety.

We have a shared experience that we didn’t have before. I just want to talk to her about her experience. I went with her to get chemo. I just wanted to talk to her about it and about her own feelings. I want to dig in with her.

Right after the colonoscopy, I had a CT scan the next day. The scan basically confirmed the cancer, but still can’t stage anything.

I met with my oncologist. The timeline is a little hazy here, but from the CT scan, they were able to say, “This is the surgery that we think you need. It might look a little different, but this is what we think you’ll need.”

My understanding is that for colon cancer under stage 4, the standard of care is pretty well respected. The option I had was between the two different types of chemo.

My doctor was encouraging me to do the one that had the harder side effects so that if that was harder for me, I’d be able to go to the other chemo that is still super brutal, but some of the side effects are a little bit easier on your body. But the effectiveness of both of those chemos [is] pretty similar.

Haley P. with daughters

I really thought that I knew what cancer could do to a family. I was 16 when my mom was diagnosed and 25 when she died. But it’s different to be the patient and it’s also different to have little kids.

Haley P.

Treatment

I went with CAPOX because [with] FOLFOX, you get a chemo pump that is on your body for 24 hours. For my family, it just felt like if there was an option where I didn’t have the chemo on my body, [that] is better for my family in terms of having little kids.

Oxaliplatin was the infusion and capecitabine is an oral pill. It was a three-week cycle. I would get the infusion, start the chemo pills on the first day of the cycle, I would have two weeks of pills, have a week off, and then start again.

Side effects from chemotherapy

The worst for me was nausea. I didn’t throw up a lot, but I was very, very nauseous. For me, nausea always was worse when I wasn’t eating and chemo did not make me want to eat anything.

Whatever anti-nausea I was on it, I almost associated it with nausea, if that makes sense. I would take it at the beginning of my chemo cycle. It was like a psychosomatic response to that pill.

I didn’t advocate for myself enough to ask my doctor if there [were] other types of anti-nausea. I was taking a THC tincture that helped to isolate the munchies. I would take that and it would help my hunger.

Walking was really helpful. I experienced pretty serious neuropathy in my feet and my hands, but also just muscle. I don’t know if this is technically neuropathy, but my muscles would basically clench.

Surgery for stage 3C colon cancer

For colon cancer, if they’re able to get all of the cancer out during your surgery, you are declared NED (no evidence of disease) [on] the day of surgery.

Because my cancer was so advanced, they do chemo as a clean-up, assuming there was still cancer in [my] body. So many of my lymph nodes had been infected and the cancer had been so deep in my colon, they were making the assumption that there was probably cancer elsewhere. I got another CT scan a month after my last chemo.

Ultimately, where cancer is [in] the colon determines what type of surgery you have or if you need some sort of ostomy or other assisted technology.

I didn’t end up needing an ostomy. But now that I know a lot about colon cancer, I know a lot about people who go in for a hemicolectomy and the cancer looked a little different and that the doctor needed to make a decision.

I wish somebody told me that if you are going in for colon cancer surgery, something worth asking your doctor [about is] the likelihood of coming out of surgery with a temporary or permanent ostomy.

For me, that wasn’t true. My surgeon did tell me that there would be changes to my bowels and that did happen. But our colons are amazing. Things evened out is the way I would describe it.

The hardest thing was getting out of bed. The first time, the nurse tried to help me out of bed. That was maybe the hardest three minutes of my life.

The surgery was laparoscopic, but they do a pretty major incision to remove the tumor. But I’m really thankful to that nurse who is just encouraging me every step of the way. I really credit being able to walk around the hospital with a pretty easy recovery from the surgery.

Haley P.

I wish somebody told me that if you are going in for colon cancer surgery, something worth asking your doctor [about is] the likelihood of coming out of surgery with a temporary or permanent ostomy.

Haley P. with daughter
Enrolling in a clinical trial

Early on, my doctor said, “We’re going to try to get you into this clinical trial,” to ward off recurrence. It’s a really big trial.

A clinical trial nurse approached me about it. When I signed the initial paperwork to get enrolled, pretty soon after my very last chemo, I started receiving pills that I took every day for three years.

In addition to that, quarterly blood work and then meet with my doctor periodically [via] virtual appointments and in person a little bit more frequently. I’m still on the trial even though I’m no longer taking the pill. I’m still enrolled [and] doing research. The blood work has slowed down as well as the appointments, but I’m still continuing to communicate with the team.

Words of advice

Listen to your body. I really wish I had. 

People are really scared of a colonoscopy because you have the prep. It’s not comfortable. The idea of a colonoscopy makes folks squeamish. It’s not a big deal when it comes down to it. It’s so important.

Colonoscopies are one of the most effective ways to find colon cancer. They’ve now changed the screening age to 45.

The future after a stage 3C colon cancer diagnosis

The doctors said, “You’re going to be enrolled in this for eight years.” At this point, it’s very low touch. [During] those first three years, I felt like I was meeting with the clinical trial nurse every day.

Anytime anybody would ask me anything about the future, I’d think, “Let’s just keep our fingers and toes crossed.” Unfortunately, we have a lot of cancer in our family. My mom, my aunt, [and] my grandma died.

The idea of surviving cancer is not the story that I know. Of course, now it’s different. Now I know a lot of people have survived cancer, but, at the time, it didn’t feel that way.

I remember being at work and having this team meeting where we were encouraged to write down where we hope to be professionally in five years. It was waterworks for me. I thought, I just hope I don’t die. 

Haley P. family

One of the things that I knew instinctively when I was going through it, but I’ve learned now professionally, is how important it is to talk to your kids about your cancer diagnosis. 

Haley P. family

Bright Spot Network

I had really, really good medical care. Despite their best efforts, the social workers who were so helpful in so many ways really couldn’t point me to resources for me as a new parent who was navigating this experience and navigating it for my kids.

As we know, being a cancer patient doesn’t just happen to the patient. It’s the whole family, the whole community that’s being affected. If you’re a parent of little kids, then kids are affected, too

I wasn’t able to find the resources. To be fair, it’s not that they didn’t exist, but they existed on sites for other cancer types. I’m a colon cancer patient.

That made the very terrifying experience of being a young cancer patient a really alienating one as well. And that’s so true for young adult cancer patients in general. That’s my entrance into that alienation, I guess. 

Then I had a nutritionist connect me to another new mom with cancer, Aimee Barnes. We became fast friends and reflected a lot [on] how there [weren’t] resources for parents who were navigating a cancer diagnosis, even though we know that this is a key part of the cancer patient experience for young parents. From there, Bright Spot Network was launched.

“As we know, being a cancer patient doesn’t just happen to the patient. It’s the whole family, the whole community that’s being affected. If you’re a parent of little kids, then kids are affected, too.”

At Bright Spot Network, we work with parents who are diagnosed with cancer while raising young kids or diagnosed while pregnant. We focus on families with kids 0 to 6.

We have a bunch of programs. We have virtual support groups for parents in active treatment, parents in long-term survivorship, parents with stage 4 cancer, and partners of parents with cancer. Those are monthly. We periodically offer weekly groups.

So much of my cancer experience was really impacted by being a parent. One of the things that I knew instinctively when I was going through it, but I’ve learned now professionally, is how important it is to talk to your kids about your cancer diagnosis. 

You might think that they’re too young to understand, but they understand that something’s happening in your family. Telling them and walking them through the journey is going to be helpful to them and to you.

Your kids are making up a story in their heads. Help them understand what’s really happening in age-appropriate ways. You can go to our website for advice about this, but that’s going to ultimately help them and help you.

It’s really about welcoming them into the process the same way that you’re perhaps welcoming other community members into your experience through helping them, through helping in other ways.

Haley P. with daughters

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