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The Latest in Hodgkin Lymphoma

The Latest in Hodgkin Lymphoma with Matthew Matasar, MD

Dr. Matthew Matasar

Matthew Matasar, MD, is the chief of blood disorders at the Rutgers Cancer Institute of New Jersey and RWJBarnabas Health. He oversees hematologic malignancies, transplant and cell therapy, and benign hematology. He is also a professor of medicine at Rutgers Robert Wood Johnson Medical School.

Dr. Matasar sat down with Samantha Siegel, MD, a relapsed/refractory Hodgkin lymphoma patient, to discuss some of the most exciting news coming out of ASH 2022.

The American Society of Hematology (ASH) hosts an annual comprehensive meeting that covers new research, scientific abstracts, and the latest topics in hematology.

Thank you to The Leukemia & Lymphoma Society (LLS) for its support of our patient education program!

Dr. Samantha Martin


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


Samantha S. happy no more chemo

Introduction

Dr. Sam Siegel, The Patient Story: My name is Sam Siegel. I’m a mom of three, a physician [in] internal medicine, an avid jogger, and somebody who generally lives a very healthy life and enjoys life. I was pretty shocked when I was diagnosed with stage 2 Hodgkin’s lymphoma on the eve of my 38th birthday.

That’s got a pretty high cure rate of about 90%, especially if you go through with the recommended chemotherapy, which I did. I took six months of the standard chemotherapy regimen called ABVD.

Samantha S. walk outside

I completed all six months and had a scan shortly after finishing that declared that I was in remission. I had no evidence of disease and what some people would even consider cured. But I really wasn’t feeling well. Even though the scan was clean, I wasn’t feeling right.

Ultimately, I had to get chest surgery to get a lymph node right near my heart in order to get diagnosed with the relapse. Once that was diagnosed, I started targeted therapy.

It’s been an incredible journey from doctor to patient and pretty soon back to doctor as I start easing back into practice towards the end of my maintenance chemotherapy that I’m on post-transplant. But it’s taken a long time to recover and to evolve as a person and make meaning of this experience.

[During] the first round of this, I kind of felt victimized by the whole process and that if I did what the doctor said and followed through with everything, it would be a nuisance of four to six months. I’d lose my hair but it’d be cured and I’d never hear from the thing again.

Samantha S. thoracic surgery post-op
Samantha S. getting strong post-BMT

When it didn’t work out that way, I began to see it differently altogether. I choose to believe that this cancer came into my life as an opportunity to learn about my health and my well-being, about setting realistic goals and expectations for myself, about taking care of myself and making a space for my own self-care.

And that’s one of the main reasons why we’re having this conversation today with top Hodgkin’s lymphoma specialist Dr. Matthew Matasar with Rutgers Cancer Institute. What are the most up-to-date treatments? How should patients be thinking about Hodgkin’s lymphoma in this new era of immunotherapy and all the new therapies that are offered?

The landscape of treatment has really changed in the last 10, 20 years and that’s after decades and decades of very little change in Hodgkin’s treatment. So I think it’s a really hopeful time and a really wonderful time to be having this conversation.

Tell us about your journey into medicine

Dr. Siegel, TPS: Can you tell us a little bit about your journey into medicine and how you became interested specifically in blood cancers and lymphoma?

Dr. Matthew Matasar: When I was in college, I was a philosophy major and I went to medical school because I wanted to become a medical ethicist. I was told by my philosophy professors that if you want to be a medical ethicist, you need to have an MD or else nobody listens to you. You have no chops. So I went to medical school with the intention of being a philosopher [and to be] a medical ethicist.

When I got to medical school, there was patient care, research, and science. It turned out to be super interesting, fun, richly rewarding, and hard. And I was hooked.

Then [I] was trying to figure out where I could have an impact. My thinking has always been, “I want to be somewhere where what I’m doing matters and where if you’re good at it, it really matters.” If I can work hard and be good at something, I can actually make the world a better place in some small way. And that led me to cancer medicine, to oncology.

I was introduced to the field of lymphoma by wonderful mentors and I was overwhelmed by how little I knew and how little we knew about these diseases. I was like, “Yeah, I could imagine doing this for 30, 40 years, and I still won’t know everything I want to know, but maybe I can make a difference and help people along the way and I’ll never be bored.” And here we are.

My thinking has always been, ‘I want to be somewhere where what I’m doing matters and where if you’re good at it, it really matters.’

What’s new at ASH 2022 on Hodgkin’s lymphoma?

Dr. Siegel, TPS: Do you have any hot-off-the-press, new announcements in Hodgkin lymphoma that you’d like to share?

Dr. Matasar: ASH is chaos incarnate. There’s just a ton of science. Everybody is presenting everything new.

We continue to learn how best to use our best medicines in treating patients with Hodgkin lymphoma when they’ve been newly diagnosed as well as when, unfortunately, the disease has come back despite receiving good treatments.

There [are] a lot of questions about the best way to treat patients when they have a new diagnosis. We have all these good medicines — chemotherapy programs, targeted therapies, novel therapies, [and] immunotherapies. We have all these tools in our bag, each of which has good effects in terms of treating or hopefully helping to cure Hodgkin lymphoma, and each of which has bad things about it — side effects, risks, toxicities, things that it does that hurt people.

How do we mix and match all of these tools to come up with the best approach for an individual person? How [do we] personalize that approach? How do we tailor it so that we’re maximizing the chances of cure and, at the same time, minimizing short and long-term risks from treatment? This is the holy grail of Hodgkin lymphoma. How do you maximize cure and minimize risk? We have some good insights [from ASH 2022] in Hodgkin’s and [we’re] continuing to move that forward.

This is the holy grail of Hodgkin lymphoma. How do you maximize cure and minimize risk?

There’s long been this understanding that immunotherapy treatments, [which] harness the immune system to kill cancer cells instead of just poisoning them with chemotherapies, are very powerful treatments [for] Hodgkin lymphoma. We know this and there [are] many FDA-approved treatments to treat Hodgkin lymphoma when it’s come back after traditional treatments have failed. A lot of us want to figure out how best to use those medicines for patients before their lymphoma comes back. How do we use those to cure them the first go around?

There [are] a lot of different ways that you can imagine doing that. You can imagine we’re going to use these medicines in everybody who’s diagnosed with Hodgkin lymphoma — if you have a little bit, if you have a lot, if you have early stage, advanced stage, if you have bulky disease, [if] you don’t have bulky disease. Maybe everyone should get immunotherapies. Maybe nobody should get them. Maybe only people with high-risk disease should get them. Maybe we should only use them when treatments look like they’re not working as well as they should.

We’re continuing to get [a] first look at a lot of the clinical trials, evaluating using immunotherapies in combination with chemotherapy for patients with newly diagnosed Hodgkin lymphoma with the intention of trying to maximize cure, minimize risk. I would say the data at ASH is a little bit of a mixed bag. We’re seeing very good success in terms of getting patients into remission by combining chemotherapy and immunotherapy.

We also see that incorporating immunotherapy into treatment programs for patients with Hodgkin lymphoma comes with a price. And I don’t just mean financial price. They come with risks.

Immunotherapies activate the immune system. That can cause trouble because that activated immune system can then act against your body, [which] can lead to immune reactions where the immune system is injuring healthy parts of your body and causing lung inflammation, inflammation of your intestines or your skin, and vital organs like your heart. We have greater insight now into that risk-benefit profile [and] the risk balancing of using these treatments in patients with newly diagnosed Hodgkin lymphoma.

My read on the data is that we’re going to need to be a little bit choosier in who we use these powerful but not-without-risk treatments. It shouldn’t be a one-size-fits-all approach. I think that’s the wrong way to do it. The data at ASH supports that. If you use it as [a] one-size-fits-all, you’re going to lead to side effects that maybe were avoidable.

We need to be a little bit more nuanced, a little more subtle, [and] a little smarter in picking who we think needs these treatments in order to achieve cure and not have to go through the rigors of the treatments that we use to cure this disease when it’s come back after good first treatments.

We’re continuing to get [a] first look at a lot of the clinical trials, evaluating using immunotherapies in combination with chemotherapy.

How do chemotherapy and immunotherapy work?

Dr. Siegel, TPS: Could you tell us a little bit more about how traditional chemotherapies work, how immunotherapies work, and how the safety and side effect profiles compare with the two therapies?

Dr. Matasar: We can do that by taking a little bit of a walk back and looking at how the treatment for Hodgkin lymphoma has evolved over these last few years.

Since I was in medical school, the treatment was ABVD chemotherapy. A, B, V, D — four medicines. Each one of the different chemotherapy medicines [is] given in combination. These medicines [are] given by vein every other week for some number of months, up to six months in total. And this treatment cured many, although not all, patients.

We always wanted to do better. We knew that ABVD chemotherapy has side effects, particularly B in ABVD — a medicine called bleomycin — and that medicine is well-known for its risk of potentially causing lung injury, which obviously is not anything that we ever want our patients to experience. We’ve been trying to get rid of that drug and a very important clinical trial was conducted globally.

ECHELON-1 was a large randomized clinical trial. The great computer in the sky flipped a coin. If it came up heads, they would get ABVD and if it came up tails, instead of the B, they would get a new medicine called brentuximab vedotin or BV for short, and that would get switched out instead of the old bleomycin. It compared this new AVD plus BV compared to the old ABVD treatment.

In that study, we learned that patients who get the new treatment with BV are more likely to be cured and live longer than patients who receive the traditional ABVD treatment. That was a landmark event. It tells me that I now have a better tool to cure more people and help them live longer than I could before, which is awesome, so that moved us forward. Now we have AVDBV as our new and improved standard treatment.

My hope is that we will be able to cure more people using immunotherapies the first go around

The question is: can we do better and can we then incorporate things like immunotherapies on top of that? Many people are looking [and] saying, “Can we add immunotherapy onto AVDBV or switch one of those drugs out and add in immunotherapy? And can we continue to ratchet up the sophistication of our treatment to cure more people and help them live longer?” We don’t know yet. That’s the work that’s ongoing.

My hope is that we will be able to cure more people using immunotherapies the first go around but we need to figure out exactly [which] patients benefit the most, who needs it the most, as well as who’s more likely to have side effects with this medicine.

Dr. Siegel, TPS: How are those medicines given? Would that look like an infusion every couple of weeks like ABVD?

Dr. Matasar: In some ways, logistically, the patient experience is similar, whether you’re getting ABVD, AVDBV, [or] incorporating immunotherapy. 

Typically, what this looks like is you come in [and] you see your doctor or his or her team to make sure you’re doing okay. They check your blood [and] make sure everything’s copacetic.

You get your treatment intravenously [by] putting an IV into a vein in the arm. If they have trouble getting IVs, [there needs to be] some way to give the medicines intravenously safely and that can be some form of a catheter, which is a tube that goes into a blood vessel in the chest, or what’s called a mediport, which is a little button that gets put under the skin of your chest with a little tube that goes out.

These treatments are typically given every other week. For patients with advanced-stage diseases, treatments are typically given for six months or six cycles or 12 treatments, however you want to parse it out. But that’s often what patients can expect to experience.

There is no stage of Hodgkin lymphoma that’s not curable… Stage is important because it tells us how hard we got to work at this.

What does staging mean in cancer?

Dr. Siegel, TPS: You touched on staging and I think that’s a really important clinical point for patients. You mentioned we’re trying to individualize treatment for Hodgkin’s patients based on their risk of relapse, their age, and their underlying health. There are terms going around like early stage but unfavorable versus later stage. What does that mean? There are a couple of different classifications.

Dr. Matasar: For a lot of cancers, stage is king. Cancers start in an organ in the body — your breast, your colon, your prostate, or some part. Stage is oftentimes the most important thing about what this is going to look like for you. What’s your experience going to be? Stage 1 — Yay! We got it so early! Stage 4 — often a very different conversation.

This is not the case for Hodgkin lymphoma. There is no stage of Hodgkin lymphoma that’s not curable. Staging is just fancy [medicalese] for describing where in the body the cancer is. Stage 1 means it’s in one lymph node or one lymph node area. Stage 2 is in a couple of lymph node areas but all on one side of the body.

We think of the diaphragm as the Mason-Dixon line for the body. If it’s on both sides, then that’s advanced stage or stage 3 — lymph nodes above and below the Mason-Dixon line.

Stage 4 just means it’s in lymph nodes and something else in your body — could be an organ like your liver or your lung.

When some types of cancer have spread into other organs, that’s a very different situation from where those cancers start. Hodgkin lymphoma is a lymphoma, a cancer of lymphocytes, of immune cells, so this is [a] cancer that comes from the immune system. By its nature, your immune system is through the whole body so it shouldn’t be a surprise if these cancers show up in more than one spot. It doesn’t have anything to do with whether or not that illness is curable.

[The] stage is important because it tells us how hard we got to work at this. Patients who have less disease generally need less treatment to achieve their best chance of cure. Patients who have more disease will often need to receive a more comprehensive course of treatment in order to give them the best chance of achieving the cure, which we not only know is possible, but usually expect to achieve for our patients.

That question of whether we should do risk-adapted intensification of treatment is still, I would say, an experimental approach.

Where do PET scans fit in the treatment plan?

Dr. Siegel, TPS: Where do PET scans fit in there? There’s this idea [of] PET-adapting therapy — getting your PET scan when you start, then getting a PET scan after you’ve had some treatment, and then using that to tailor the treatment as you go. What does that mean and how can that be used?

Dr. Matasar: A PET scan is a type of body scan. It’s a way of taking pictures of inside the body, like a CAT scan where you will often use medicine that lights up the blood vessels so you can see what you’re looking at — very clear black and white pictures. A PET scan is more like an Andy Warhol painting — very bright, vivid colors and you get a lot of information about what’s going on.

What lights up in a PET scan is metabolism. It’s what parts of your body are actually using sugar for energy and the more sugar that absorbs, that sugar then is actually a little bit radioactive, and it glows for our cameras — not radioactive in a dangerous way, but radioactive in a I-can-take-pictures-of-that kind of way.

By doing a PET scan, you can see what areas in the body have unusual or abnormal metabolism. We know that Hodgkin lymphoma is very metabolically active. Those cells are using lots of energy so they light up very brightly on a PET scan. I can see those areas that are lighting up and that is really how we best stage our patients. It’s the best look at where the cancer is and isn’t at the start of treatment.

We know that many patients with Hodgkin lymphoma will have very quick improvement [in] their PET scans, even after only two months of treatment. Oftentimes, after just that little bit of treatment time, that PET scan will often be already normalized. That’s often our expectation going into treatments that the scans should get that much better that quickly.

Back when we were doing ABVD chemotherapy, I’ve already mentioned that bleomycin can be hard on the lungs. We know that the more bleomycin we have to give our patients, the more risk there is of causing lung injury. So we used the PET response adapted approach.

We would do treatment for two months and we’d do a PET scan. If that PET scan was already looking great, yeah! Awesome! We’re on the right track. Let’s not give any more bleomycin. Let’s take it easy on those poor lungs and just do AVD — no more B — and finish the next four months or six months of total treatment, but no more bleomycin to spare lung injury.

We’re not doing so much ABVD anymore. We’re doing a lot of BVAVD. We don’t have the same approach right now in terms of tweaking our treatment along the way based on that PET scan that we do after two months. We still tend to do it because we think it gives us pretty good predictive power in terms of how things are going.

There are situations in which that scan after two months may be so spooky looking to us that we may recommend moving to an even stronger chemotherapy program in order to try and make more progress. Two months, not such great news so far, kick it up a notch.

That question of whether we should do risk-adapted intensification of treatment is still, I would say, an experimental approach. We continue to see data emerging at ASH and other congresses as people look at ways of trying to address people who have an unfavorable or worrisome scan after the first two months to try to make more headway.

We recognize pretty well that radiation therapy, as effective as it is, carries a long-term risk for some patients, depending on where the radiation therapy is delivered.

Where does radiation fit in all this?

Dr. Siegel, TPS: Where does radiation fit in all this for Hodgkin’s?

Dr. Matasar: I would say that radiation therapy is still absolutely an important treatment modality that we have in our pocket. If you want to be rigorous about it, we would say that radiation is the single most active treatment in the treatment of Hodgkin lymphoma. It’s the thing you can do that is most guaranteed to get a quick response when you need it.

We are using radiation therapy a lot less than we have in months, years, and decades past and that’s because we’re trying to maximize cure but also minimize short and long-term risks. We recognize that radiation therapy, as effective as it is, carries a long-term risk for some patients, depending on where the radiation therapy is delivered.

Chemotherapy goes to the whole body from the nose to your toes so it can affect the whole body in terms of side effects. Radiation therapy is a focused treatment on a certain area and wherever the beam shines is wherever is being affected. If that beam shines on healthy tissues, there’s a risk of causing injury to those healthy tissues.

Radiation therapy for Hodgkin lymphoma is well-known for carrying certain important risks, depending on where that beam may shine. What if that beam is shining on breast tissue? In younger women and women under the age of 35 — definitely 30 — we know that if radiation therapy touches breast tissue at that young age, it can confer an increased risk later in life of developing breast cancer. And the last thing any of us want to do as doctors is to give treatments that put our patients at risk of other cancers later in life.

It’s very challenging. Do we use it anyway? Yes, if you have to. If it’s that or Hodgkin lymphoma presenting a peril to life and limb, then, of course, you have to do what you have to do. Then you are talking about how you apply good survivorship care after Hodgkin lymphoma has been cured to work to protect and safeguard a patient’s health in the months and years to come.

For patients and their caregivers, the most important thing to remember is that survivorship care is cancer care.

Survivorship & patient care

Dr. Siegel, TPS: You just touched on survivorship and some of the most important issues that survivors are facing long-term. Survivorship becomes a really, really important issue for the decades after patients are cured of their Hodgkin’s. What are some of the top things, in addition to the potential injuries to the tissues or secondary cancers that patients may get from having had the treatment?

Dr. Matasar: For patients and their caregivers, the most important thing to remember is that survivorship care is cancer care. Everybody who’s gone through Hodgkin lymphoma deserves to receive compassionate, thoughtful, wise survivorship care as they survive and live with their history of Hodgkin lymphoma.

Everybody should be able to generate what’s called a survivorship care plan, which is simply an easy, straightforward document that says this was my diagnosis — Hodgkin lymphoma. This was the treatment that I received — which medicines, which doses, how many rounds or cycles, did I need radiation therapy or not? If I did, what tissues in my body were touched by the radiation? What are the recommendations from my oncologist and their team regarding my care going forward? What do they think I need to do to be able to safeguard my health the best?

Whether it’s a digital document in your electronic medical record or something that you simply have in a file at home, that simple document can then go with you, [which] you can then share with your other doctors, your primary care providers, your other providers so everybody’s on the same page. Everyone understands what you went through and what everybody should be attentive to protecting your health going forward.

What goes into that in terms of what to do and what we advise our patients in terms of safeguarding their health depends on the treatments that you received and the risks that are associated with the various treatments that we give.

[For] people getting ABVD or BVAVD, the A in that program is a medicine called Adriamycin or doxorubicin. We know that medicine carries a risk of some small magnitude — but not zero — of increasing the risk of heart problems later in life. People that get these treatments should have attention to their heart health in the years and decades to come.

How much we need to scrutinize the heart, how often we need to do testing, and what types of testing vary from person to person based on how much of that medicine you needed and how healthy you are otherwise. Do you have other heart health problems or other medical issues that may complicate your heart health? That can be personalized in a survivorship care plan.

If there [are] complex needs, then people can actually get that care at survivorship clinics, which increasingly exist in the context of cancer centers. Patients who are survivors at [the] highest risk for complications from treatment can be followed in a more multi-disciplinary, thoughtful, data-driven way so that we can really do the very best job at protecting our survivors.

We’ve made such great strides in the treatment of patients, few though they are, who have their lymphoma come back despite good first treatments.

Advances in the treatment of the relapsed/refractory Hodgkin

Dr. Siegel, TPS: The relapsed/refractory group is a small subset of people in Hodgkin’s. My understanding from what I read of the abstracts at ASH seems hopeful even for patients who relapsed after having had a transplant and that’s really exciting for those of us who have already relapsed once.

Dr. Matasar: We’ve made such great strides in the treatment of patients, few though they are, who have their lymphoma come back despite good first treatments. Right now, we are able to cure the majority of people even when their lymphoma comes back after the treatment.

What I always tell my patient when I meet them for the first time, as I’m describing the choices that we have together to treat their lymphoma, I say, “Don’t forget that even if things go wrong and your lymphoma comes back, which is not what I hope or expect, but just remember that if it comes back, that is not a death sentence. We are still likely to cure the disease at that point. Cure meaning go away, never come back again, happily ever after, the end.

“That may require a little heavy lifting. It may require a little bit of creativity. But our expectation is still, even if it comes back, that we would and will be able to cure it. Just remember that. [On] those dark nights when you’re lying in bed and you’re worried about, ‘What if this isn’t working?’ You can remember, ‘Nope, Matt said that that’s not a death sentence and that there [are] lots of good things that we can do there.’”

That is true now after ASH just as it was true before and all the more encouraging. Where’s my encouragement coming from in this setting? I’ve been talking about those immunotherapies, as nuanced as I think we need to be about their use in patients with newly diagnosed Hodgkin lymphoma because those patients are often cured without such treatments.

In patients who have the disease come back after chemotherapy, we know that immunotherapies are very powerful and can really lead to a tremendously greater chance of cure than we had before those treatments were available to us.

We’re now understanding better how to combine those immunotherapies with other chemotherapy medicines that we traditionally use after [the] first chemotherapies have failed us. This combination of chemotherapy and immunotherapy for patients when their lymphoma comes back after good treatment is proving to be very powerful, safe, and highly successful at getting patients into remission or back into remission.

This combination of chemotherapy and immunotherapy for patients when their lymphoma comes back after good treatment is proving to be very powerful, safe, and highly successful at getting patients into remission or back into remission.

Dr. Siegel, TPS: That’s wonderful. I feel so lucky to be alive [at] this time in medical science and [have] accessibility to medicine. I think it’s just incredible. We’re so lucky that people are excited about this and interested and have continued to develop the science to help keep us alive.

Dr. Matasar: This is really a global effort. The amount of work that is being done at a global scale to improve outcomes for patients with Hodgkin lymphoma is breathtaking. And what that means is that the pace of discovery is breathtaking and our ability to continue to cure more patients safely and effectively and to restore them back to health, it’s truly inspirational.

The pace of discovery is breathtaking and our ability to continue to cure more patients safely and effectively and to restore them back to health, it’s truly inspirational.

Any words of advice to patients and caregivers?

Dr. Siegel, TPS: I agree. Any last thoughts that you think are important to relay to patients or caregivers?

Dr. Matasar: Don’t be afraid to ask questions. So often I have patients come in and they are overwhelmed — and of course. There’s so much relief to hear a plan, to hear good news that there [are] treatment options, and that cure is attainable that there’s a reluctance to want to rock the boat, to advocate for yourself, to ask questions, and to learn more.

That deference to the physician on this side of the chair? I don’t want that. I don’t need that. I would much rather be in a partnership and a conversation. What I tell my patients is that this is not my journey. This is your journey. You’re the one climbing the mountain. I’m the Sherpa. I’ll drag your bags alongside you. But this is your journey and I need you to be as prepared and ready, as informed and engaged as possible so that we can do this together.

Ask questions. Learn. Satisfy your curiosity. Ask the what-ifs. Understand your risks. Understand what your role in this is. How can I improve my outcomes? What can I do to keep myself safe [during] treatment? What should I do with exercise? What about diet? What about sexual activity while I’m on treatment? How does it affect my life? What about work? How do I disclose this to people that I’m dating? All of this stuff. The questions that naturally swarm all of our brains.

We’re trying to understand this terrible thing that’s going on. If you don’t ask those questions, you’re doing yourself a disservice and you’re not giving your doctor a chance to do the right thing with you and for you. So my one piece of advice: ask questions.

Ask questions. Learn. Satisfy your curiosity. Ask the what-ifs. Understand your risks. Understand what your role in this is.

Dr. Siegel, TPS: One of my favorite questions that my doctor asked me was, “What’s really important for me to know about you to take good care of you?” And I told him, “I love being a mom, I love playing guitar, and I love running.” The lung toxicity [was] really important to me. Neuropathy, which is really important. Knowing that was a key part of knowing how to take good care of me because we watch out for nerve issues, for trouble breathing, and things that could really impact my quality of life.

Dr. Matasar: Sounds like a wonderful oncologist.

Dr. Siegel, TPS: Absolutely. Thanks so much for taking [the] time to chat with The Patient Story. We’re so lucky.

Dr. Matasar: It’s my privilege. There’s nothing more important than this piece of things. What we do is about our patients, their caregivers, [and] their loved ones. This is all it’s ever about so the opportunity to share my thoughts is an honor.


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



Introduction

Stephanie Chuang, The Patient Story: I’m the founder of The Patient Story and I’m also a cancer survivor [of] lymphoma.

The Patient Story is co-hosting this program with The Leukemia and Lymphoma Society or LLS, which, as many of you already know, is an incredible organization with top resources to help guide you through myeloma — diagnosis, treatment, and everything in between.

We also want to thank Karyopharm Therapeutics for its support of our educational program. We do want to stress that The Patient Story and the LLS retain full editorial control.

Many of you are probably very familiar with Jack Aiello. He’s been living with myeloma for almost 30 years and even more incredible than that alone is for a lot of this time, Jack has dedicated himself to the research of the latest and greatest — what’s coming out in terms of the developments in therapies and the knowledge in terms of how to deal with myeloma — and he does this not just for himself but for those of you out there as well.

Stephanie Chuang
Jack Aiello

Jack Aiello: I was diagnosed with stage 3 multiple myeloma in early 1995, 28 years ago. At the time, I had been married for 20 years and had young kids — 16, 14, and 10 years old. I remember when the doctor told me that at my stage I was probably going to live for only two to three years, that was pretty scary. I didn’t know what to say to my wife. We shared a good cry and I remember talking to my kids and saying I had something wrong with my blood because I was going to be in the hospital for 96 hours. I tried to leave it at that. You try to protect your children as much as possible.

Ultimately, I ended up having a tandem autologous transplant — two autologous transplants about four months apart — but they only gave me a year and a half remission.

In late ’97, I started a clinical trial for thalidomide, which was really important to the world of myeloma because a third of the patients responded to that treatment. Unfortunately, I was refractory. I didn’t respond at all. My disease condition got worse as I was on it. I tried other chemos — they didn’t work.

I had one other available to me — in this case, [the] fourth line of treatment — called an allogeneic transplant, meaning that instead of using my own stem cells as was done in an autologous transplant, I used donor stem cells. It worked. It’s not done much today because even back then, there’s a 40 to 50% mortality rate just from the transplant. Today, we have so many other safer treatments that it doesn’t make sense to do. But it was the only option available to me back in ’98. And I haven’t been on any treatment now since the early 2000s.

→ Read more about transplants from the LLS

Two things I did right. I found that we had a myeloma support group in the San Francisco Bay Area, where I live, and they helped educate me about myeloma and [the] questions I should be asking. The second thing I did that really made a difference was seek out expert opinions. Ultimately, I went to Little Rock, Arkansas, to go through most of these treatments. Back then and still today, Little Rock [is] a premiere center for treating myeloma patients so that made a huge difference for me.

Today, whenever I talk with myeloma patients, I always suggest that they get a second opinion from expert doctors and there are so many more available these days from around the world. I’m fortunate enough to be pretty knowledgeable about myeloma these days.

The top doctors and researchers from around the world meet [at ASH] to discuss the latest in blood cancers, specifically myeloma. Two of those doctors are joining our conversation today: myeloma specialists Dr. Josh Richter and Dr. Muhamed Baljević. Both are committed to seeing myeloma patients in their clinics and also furthering research to get us those next improvements in treatments.

We will be highlighting the summary of top takeaways in myeloma from the ASH conference for first-line therapy patients all the way through later relapse. The big buzz at ASH for myeloma patients was the word bispecifics. But before we go there, there was some update that could actually change treatment for some myeloma patients today. And it has to do with steroids.

Jack Aiello with other multiple myeloma advocates
Dr. Muhamed Baljević

Cutting back on the use of dexamethasone

Dr. Muhamed Baljević: There was an important piece of data presented in frail, newly diagnosed patients where we demonstrated that it’s possible to cut back on dexamethasone completely. This is really important for patients. We’ve all received these questions.

Glucocorticoids are not easy to tolerate with [a] multitude of side effects. In these frail patient populations where patients have multiple comorbidities — some may have diabetes, brittle diabetes that’s insulin-dependent — it’s really a success that we are presenting data like this, that we can show that it’s safe and feasible.

Quite frankly, even in my own clinic, I and many others are trying to see if we can pull back on the use of glucocorticoids long-term. Perhaps, in the beginning, there’s some bigger role but later on, would be lower.

What are bispecific antibodies?

Jack: Let’s go now into the big area of buzz — bispecific antibodies. Dr. Richter, can you help us understand what bispecifics are? We actually know about monoclonal antibodies like daratumumab. But what’s a bispecific antibody?

Dr. Josh Richter: People may be familiar with monoclonal antibodies like Rituxan or Darzalex. It’s got one arm, grabs onto the cancer cell, and kills it. Bispecifics have two arms and classically, right now, each of those arms does this one thing: one arm grabs onto our T-cells and activates them to attack the cancer [and] the other grabs onto the cancer cell. This arm that attaches to the T-cell attaches to something called CD3. It’s on all T-cells. That, for the most part right now, is the same. But the arm that grabs onto the cancer cell is different.

At ASH, we’re seeing presentations from four different other arms. BCMA, some people may have heard of. It’s the target of many CAR T therapies and a drug called Blenrep. Talquetamab targets something called GPRC5D. There’s another drug called cevostamab that targets FcRH5. There’s another drug that targets CD38, the same marker that’s attacked for Darzalex, but also using the T-cells, and that drug goes by the name ISB 1342.

Really excited about talquetamab because right now, the majority of our T-cell redirecting therapies [have] all been BCMA. We have two FDA-approved CAR T-cells. They both attack BCMA. We have one FDA-approved bispecific. It attacks BCMA. We had an antibody-drug conjugate called Blenrep. It was taken off the market, but there are two ongoing phase 3 studies — the DREAMM-7 and DREAMM-8 study — which will hopefully bring the drug back within the next year, year and a half. Fingers crossed.

Dr. Josh Richter

Dr. Baljević: I personally think it’s a good drug and it’s an important drug for some subsets of patients. We learned that we will still be able to give that [to patients] on compassionate access. I think that’s important because not all patients will be eligible for CAR Ts and maybe even for bispecifics.

Dr. Josh Richter

How soon will patients be able to start on bispecifics?

Jack: Let’s talk [about] real-world access for patients and caregivers. With all of the bispecifics, how soon are we talking?

Dr. Richter: Teclistamab was approved. We have started giving the drug. Commercially, it’s available. As opposed to a CAR T where there [are] limited slots because of production, this drug is available. But let me put a little caveat on that.

Right now, the way the drug is recommended to be given by the FDA is that you get several step-up dosings and this is done mostly inpatient. You have to be admitted to the hospital for about seven to 10 days. We can’t admit 30 patients at a time. Every institution is developing [its] own SOP of how many patients they feel comfortable with [in] a week. Right now, we have a list of patients that have been waiting and now that we’re giving the drug, we’re going through that list pretty [quickly]. My guess is that within the next couple of months, we will have gotten through that list and we’ll be able to say, “Okay, you’re progressing. You need the drug. You can get it.” It’s going to happen a lot faster than for CAR Ts.

When will bispecifics be available in Community Cancer Centers?

Jack: How about true availability? For instance, CAR T has been limited to certain sites, mostly bigger and academic hospitals. Will bispecifics be available for those of us getting care in the community?

Dr. Richter: That’s a really, really great point. The short answer is yes. Yes, it is, but it’s not going to be given in the community just yet. There [are] still pretty high rates of CRS. It involves admission. It involves some of the management strategies that a lot of these doctors are not as familiar with.

A lot of hematologist-oncologists out there are used to dealing with [the] side effects of classical chemo. Then they got used to dealing with the side effects of checkpoint inhibitors. It’s going to be a learning curve.

We’re willing to partner with the community. You come to us, you get that first inpatient dosing, get you through the risky part, and then get you back to your community to get your regular treatment.

Jack Aiello and wife with grandkids
Dr. Josh Richter

What is cytokine release syndrome?

Jack: We hear a lot about CRS — cytokine release syndrome — as a side effect, especially when it comes to these T-cell therapies. Dr. Richter, can you share what it looks like in patients from low to high grade when they experience CRS and how it’s managed?

Dr. Richter: There’s a grading system. What does it mean? There is something called the CTCAE, the common terminology [criteria for] adverse events, and it grades everything from a grade 0 to a grade 5 — from stubbing your toe to a heart attack to CRS. Grade 0 is you don’t have it, 5 is you’ve died from it, and 1 through 4 is gradual worsening.

In clinical trials, we often look at grade 1, 2 as being the milder ones and 3, 4, the more serious ones. In general, grade 1 CRS is just some fever. You spike a little temperature. You feel fine. Your other vital signs are fine. You’re not having any trouble breathing [or] anything like that. For grade 1, you don’t really need to do anything. If it persists, you can start adding drugs like tocilizumab. For early grade 1, you could just give Tylenol if you want. Simple things like a little IV fluid [and] a little Tylenol will settle them down.

Grade 2 is where your pulse is getting a little faster or your blood pressure is starting to drop. If your O2 sats starts dropping, that’s starting to get into grade 2, that’s where we’re really coming at there with things like tocilizumab.

Then as we get to 3 and 4, that’s where oxygen is getting worse. You may even need more oxygen support, even getting to the point of being on a ventilator. Not very common.

Will bispecifics be given in the outpatient setting?

Jack: With that in mind, will bispecifics be able to be given in the outpatient setting?

Dr. Richter: There are already a number of people starting to give these completely outpatient. There are certain risk factors for higher-grade CRS. If you have a very high tumor burden, we know you’re more likely. If certain markers like your LDH are already cranked up or circulating plasma cells, we know you’re more likely to have it. If we have someone that doesn’t have all those risk factors, we could give it as an outpatient.

But there’s actually some data from another bispecific being presented at ASH that is going to make it more applicable to the outpatient.

Jack Aiello with kids

Thoughts about patients needing hospitalization with bispecifics

Jack: For teclistamab, there is the initial two-step dose, then the third full-strength dose, all given at least 48 hours apart. Patients are then required to be in the hospital to manage possible side effects for at least a week. What are your thoughts about the requirement for patients to be hospitalized with bispecifics for the time being and the burden associated with that?

Dr. Muhamed Baljević with patient in bed

Dr. Baljević: This is really important because it’s really essential that we use this drug safely. The label is advising that inpatient admission and monitoring be considered for each of the doses in this step-up schedule, which is basically one, four, and seven — seven being the first full dose that they would continue with. Potentially, that does imply that people would need to spend nine days in the hospital.

There are a number of efforts that are going to be attempted to see what we can do. Can we consider doing some of this therapy in the outpatient setting, partially or maybe even fully? There’s also [the] possibility of having [a] slightly different step-up schedule of one, three, five with [a] seven-day admission rather than nine. Cutting back a little bit on the days spent [inpatient] has an impact on how hospital systems can deal with the costs associated with therapies and reimbursements for these therapies.

Really important period ahead for how this drug is going to be used in the broader sense in academia but also in [the] community importantly.

Dr. Richter: Cevostamab is another one of those bispecifics — CD3 to grab onto the T cells, something called FcRH5 that’s on all the myeloma cells. There [are] two presentations at ASH that I think in and of themselves wrap into a nutshell how we are likely to approach all bispecifics in the future. If you put them together, this is the blueprint.

We’re talking about CRS. We recognize that some people [are] going to end up in the hospital, have high grade, or get sicker. When you develop CRS, we give a drug like tociluzimab. What happens if you use it as a pre-medication? What happens if you give it before you even give the first dose? Can you mitigate or prevent CRS? And that’s exactly what they did for cevostamab. They took patients and they gave them a prophylactic dose of tocilizumab and it took the overall all-grade CRS rates from over 90% down to the 30th percentile. And that’s just the beginning.

People will just say, “Well, wait a minute. If we give toci, are we going to affect the efficacy?” For cevostamab? Absolutely not. We have not affected efficacy, but we’ve markedly reduced the incidence of CRS.

We’re all starting to talk about how we’re going to approach this. Should we consider giving people tocilizumab before we give them bispecifics, particularly for the people we worry may not tolerate it? 40-year-old, no medical problems? Not as worried. 80-year-old, [with] multiple comorbidities, may not be able to tolerate that grade 2 to 3? Consider giving them tocilizumab.

Dr. Baljević: I think that’s really interesting because we may yet use the findings of that cevostamab study to try to plan how we can reduce the incidence of CRS in other bispecifics and maybe even in the CAR Ts. A lot of interesting data [was] presented.

Jack Aiello with friend multiple myeloma advocate

Limited duration treatment with bispecifics for relapsed/refractory myeloma patients

Jack: There is also research pushing towards the possibility of limited duration treatment with bispecifics for relapsed/refractory patients, meaning not having to continuously be on treatment. Can you share more about this?

Dr. Josh Richter with family

Dr. Richter: The whole standpoint is [to] treat until progression or intolerability. We don’t stop therapy. It’s true for all the bispecifics, except cevostamab. This is fixed duration — 17 cycles, which rounds out the drugs every three weeks so it’s step-up dosing. It’s one year of therapy and then you stop.

We’re starting to see patients who’ve completed that and we’re monitoring them off therapy. In that trial, they have the option of being re-treated if they progress while they’re off [treatment]. We have patients greater than six months and we have a number of patients greater than 12 months. Patients completed a year of therapy and are now another year in complete remission, off of everything, and living their lives. If at some point the disease comes back, we come right back in with a drug that put them back into remission.

This gives us a number of advantages. Number one is obviously how patients feel. But there [are] two other big ones. One is something called T-cell exhaustion. If you give these drugs that activate the T-cells and you say, “Fight, fight, fight,” eventually they get tired. Maybe they’re getting tired [to the] point where you don’t need them and when you do need them, they’re not ready to go. Giving someone a break off the drug, those T-cells can recuperate and when you need them, they’re back ready to fight.

Dr. Baljević: [A] deeper understanding of T-cell function, T-cell exhaustion, and resistant mechanisms is needed and that’s where some of these other agents that have [a] positive impact in those situations can lend themselves even more useful. For example, selinexor is such an agent where some of the preclinical data has already been published and demonstrated maybe some of these roles.

Jack: Is the hope that other bispecific can also test this finite duration?

Dr. Richter: Absolutely. That is the big buzz when you talk with all of the pharma companies [at ASH]. Because why did cevostamab choose a year? We even asked them and they couldn’t give an answer, but I’ll give the answer. One year is a nice round number. It’s not a biological thing. It’s a nice round number. But what this is becoming thought-provoking for all the other bispecific manufacturers is to say, “We need to do this, but with a biological endpoint.”

For example, complete remission and then two more cycles and then stop or MRD negative and three more cycles. But right now, the big discussion is to not just pick a random number but to have a biological response. Right now, these are the big discussions in the halls of ASH: how do we design the next series of trials?

Jack Aiello out in nature
Jack Aiello IMF

Who would qualify for bispecifics?

Jack: Remind us: who would qualify for bispecifics?

Dr. Richter: You can say patients who’ve had four or more prior lines. Another thing we talk about is triple-class refractory so refractory to a drug like Revlimid, a drug like Velcade, and a drug like daratumumab. Now we’re even going [to] the next step: also refractory to a drug like a BCMA drug.

What we know is once that gets those approvals towards the end, we start learning more. We move it further up. New combinations. There [are] already trials in bispecifics in one to three prior lines and a few that are on the verge of opening as upfront therapy. Very new, not a lot of people on them. We’re still trying to figure that all out.

Dara had a response rate of 30% in the end and when you give it upfront, in combination, it’s 100%. What happens when you take a drug that [has a] 70, 80% response rate in someone who’s had an average of six prior lines? If you move it upfront, do you cure some people? Do you get remissions that are so long [that] it’s a functional cure?

That’s why the myeloma world couldn’t be more excited right now. There is a combination out there and there are actually several discussions right now of cure protocols and cure goals.

What is the overall takeaway from CAR T-cell therapy?

Jack: Dr. Richter, what’s the overall takeaway so far on the CAR T-cell therapy front?

Dr. Richter: The CAR T front is that they work well in the later lines. If you move those further up, initially we were worried about more side effects because it’s all about the T-cells again. As you go through your therapy, those T-cells get tired. And when you give a CAR T or collect T-cells in someone who’s had a whole bunch of therapy, you’re collecting tired T-cells.

What we were worried about is if we collect early on T-cells that are more robust, maybe they’re going to give you more side effects, more CRS, [and] more neurotoxicity. That is not happening. That’s not the case. So we know that we can give these drugs early on, but some of the early data has been extremely encouraging.

Jack Aiello with family
Jack Aiello and wife with friends

The big question is: is it better than other therapies early on? Now, there’s a study called the KarMMa-3 study, which compared ide-cel versus an early regimen in relapse like dara-pom-dex. We don’t have the data just yet, but there was a press release to say that CAR T beat it. A lot of excitement about moving CAR Ts into early relapse.

Then there [are] two strategies right now about CAR Ts upfront. One strategy is comparing CAR T versus transplant and that’s a really interesting one but that’s not my favorite. My favorite is transplant followed by a CAR T with the idea of your induction [bringing] you down, your transplant [bringing] you down [further], and then immune therapy to sweep up what’s left. I’m hopeful that that might be a curative approach for some people.

How do you choose CAR T or bispecifics and in what order?

Jack: You were talking about how sequencing is going to matter but also in choosing which direction to go. For your patients, how are you going to decide or determine whether it’s going to be CAR T first and then you go to bispecifics or the other way around?

Dr. Baljević: That’s really important. We’re still learning how to recognize what the best patients are.

Personally, if I have a patient that can receive CAR T therapy and I’m in a position to give them CAR T therapy, preferentially, I probably will do that. Though we now have a first agent that’s bispecific and off the shelf by definition. We are expecting another number of agents in 2023, maybe Q2 — maybe one targeting BCMA or another one targeting GPRC5D for the first time. I think that both are associated with some of the serious side effects.

Autologous CAR Ts are associated with some requirements for generation and synthesis. Patients that are relapsing and have diseases with velocities that are pretty aggressive and whose proteins are rising rapidly, whose counts may be changing, or whose kidney functions, mineral levels, and calcium levels might be threatened, may not be the best candidates for those types of therapies. They’re better candidates for off-the-shelf therapy. That doesn’t only include BiTEs, but it may also include allo-based CAR T cells off the shelf.

Dr. Muhamed Baljević
Dr. Josh Richter with baby

Dr. Richter: It’s all in context. If you look at some of the drugs like dara [with a] 30% response rate at six months or so in heavily refractory, we use it upfront.

The MAIA regimen — dara-rev-dex — for elderly, transplant-ineligible patients, the average remission upfront is greater than five years. What does that look like with CAR T? We’re still trying to figure that out.

Let’s say the two are equivalent. Giving someone standard therapy or CAR T, there [are] risks and benefits. CAR T, you have to be admitted; standard therapy, you don’t. CAR T is a one-and-done; standard therapy, you have to continue on. CAR T is usually something that we reserve for the younger and fitter. If you’re older [or] frailer, the other direction may be the way to go. But the other question is until CAR T is a one-and-done cure, we’re trying to improve remissions. There [are] a number of studies looking into maintenance after CAR T.

Updates on CELMoDs

Jack: Were there any updates on CELMoDs?

Dr. Richter: These drugs, just like Revlimid, worked in people who had thalidomide and pomalidomide worked in people who had Revlimid. These drugs work really, really well in people who’ve had the others.

Iberdomide, for example, is one of the most potent ones and it has a lot less in terms of what we call myelotoxicity — it doesn’t lower your blood counts as much. If you wanted to strategize an optimal maintenance drug, it’d be a drug that someone’s going to tolerate very well and not lower their blood counts, especially after something like a CAR T where your counts may be lower.

These CELMoDs are really going to be a big part of our therapy. We probably have to wait till 2025 [or] 2026 for regimens like Velcade-iber-dex and dara-iber-dex. But some push to consider those drugs in earlier lines. There [are] a number of great drugs on the horizon.

Jack Aiello and wife at Hamilton
Dr. Josh Richter playing guitar

What role do ‘novel therapies’ play?

Jack: What role do the more recent novel therapies play now?

Dr. Richter: Right now, if you look at CAR Ts and bispecifics, it’s patients who had at least four lines of prior therapy. If we’re giving dara-RVd upfront and you’re getting car-pom-dex in your second line, you’ve got a gap in there. Now, that gap is very important because if you’re going to collect T-cells, if you’re going to collect CAR T, you can’t give a drug that kills T-cells.

For example, bendamustine is a drug that a lot of people had been using in that line. Bendamustine is a great lymphoma drug. It kills lymphocytes. So if you give benda and then you try to collect CAR Ts, you will fail. Selinexor is an excellent drug so we’ve been using a lot of it there to help bridge the people to get them to CAR T.

Understanding what dose is best for selinexor

Jack: Dr. Baljević, speaking of selinexor, you presented additional details on using this drug weekly instead of twice a week, providing efficacy with fewer side effects. Both the STOMP and BOSTON trials used this lower selinexor dosage in combination with carfilzomib and Velcade respectively. Can you expand on this topic?

Dr. Baljević: We are shown the value of selinexor as an agent in this difficult-to-treat population. Earlier, we were talking about the outcomes of high-risk patients. Anybody who is triple-class refractory, even if they’re not harboring high-risk cytogenetic features, they are, biologically, already in a place where they have progressed on multiple good therapies. We know from previous large-scale analyses that these patients have short, medium progression-free survivals and survivals that are measured in single-digit outcome endpoints.

What we did is looked at the patients that were exposed — and some of which were actually refractory to CD38-based therapy as well — and we looked at what type of outcomes they can have with selinexor-based, importantly, weekly treatments. A lot of investigators still have angst using selinexor twice a week. I agree with that. I have never given anybody selinexor 80 mg twice a week. These are active triplets with Kyprolis and dex, with Pomalyst and dex, [and] even with Velcade and dex so BOSTON data phase III was [a] positive report. But particularly with the second-generation PIs (proteasome inhibitors), and IMiDs, Pom, and Kyprolis, these are powerful triplets that are effective in this difficult-to-treat population.

Jack Aiello with granddaughter Dec 2016
Jack Aiello with roasted turkey

It’s going to be really important for us to try to understand: what is the best way for us to try to utilize agents with [a] different mechanism of action? How are we going to treat patients who are triple-class refractory and BCMA refractory potentially? A lot of these agents are being brought in early.

KarMMa-4 [and] CARTITUDE-5 are exploring the use of CAR T as a part of the first line. CARTITUDE-4 is going to be looking at cilta-cel versus two different standard of care options: PVd versus DPd. Some patients will potentially be treated in the second line with powerful agents. So what do you do with those patients? Well, we don’t know. We’re just generating that experience. We need agents with [a] different mechanism of action, that we can rely on that can actually treat this difficult-to-treat patient population.

How do we include more diverse populations in clinical trials?

Jack: Wonderful. We are seeing diversity, equity, and inclusion more and more, addressing the need to make sure that we are more inclusive of different populations. What can pharma, doctors, and patients do to increase diverse populations in clinical trials?

Dr. Baljević: This is such an important question. We are not doing such a good job in [the] myeloma field as myeloma specialists accruing minorities and disparities. We have data on that.

For example, [the] African-American population is still being accrued in the single digits on clinical trials so that’s a problem. And some of the other disparity populations as well. Where I practice and where I am in charge of the program, that’s really a programmatic goal for us to try to do better and increase disparity accruals on clinical trials.

In fact, we have a grant with LLS. [The Leukemia & Lymphoma Society®] is really an amazing partner in so many areas and they’re supporting [the] increase of awareness and access of patients from the community areas, especially those that are underserved geographically. We are partnering successfully with colleagues in the community, trying to bring patients, and increase access to good quality clinical trials for hematologic malignancies in general, including myeloma.

We need to do a better job. That really needs to be a goal of every single myeloma physician. Hopefully, in the future, we’re going to see more trials that have more balanced accruals in terms of different ethnicities [and] different disparity populations in particular.

Jack Aiello with other multiple myeloma advocates
Jack Aiello and wife out in nature

Dr. Richter: When I started this and people were diagnosed, I said, “We can’t cure this disease. I’m very sorry.” Today, we cure some people. [It’s a] small number and I will admit it’s by accident. We don’t know that we did something extra special for that particular person. The next generation is intentionally curing more with the goal of intentionally curing everyone and we have the pieces to start getting closer and closer to that.

Conclusion

Jack: Thank you to Drs. Richter and Baljević for joining this discussion about the latest in myeloma treatment as we head into the new year. There was an incredible amount of myeloma information at the recent ASH meeting and you’ve helped distill it down for patients to be able to understand. Patients, thank you because all of this information comes your way and is important for your own education and enabling you to be your own best patient advocate.

Stephanie: Thank you, Jack, for leading this discussion. Thanks again to Drs. Richter and Baljević for such a rich discussion. There’s just so much to know about in the space of myeloma. Thank you again for joining us.


Follow-up questions

January 2023

We asked Dr. Richter to help answer some of the pre- and post-event questions submitted. Unfortunately, we could not address them all, especially if they were too individualized, as our specialist cannot provide you with personalized medical advice. 

This is not meant to be medical advice or replace information from your own medical team. Please consult with your doctor and medical professionals before making treatment decisions.

General

Based on the ASH conference, are any changes to the NCCN guidelines in myeloma therapy likely to occur? Any new information with regards to treatment for patients with multiple myeloma with plasmacytomas?

The NCCN meets regularly to discuss and implement changes. Changes can occur from new manuscripts, trials, conferences, etc.  as it’s an amalgam of all of this. I’m not sure that there are any changes planned at the moment.  

Plasmacytomas can be thought of in two ways.: solitary plasmacytomas and plasmacytomas associated with myeloma. In the first one, radiation offers the potential for cure. In the second one, you can use chemotherapy and/or radiation to control them.  Nothing really new about them from ASH.

Treatment response

What treatments will have the best outcomes for high-risk patients, specifically del 17p?

We don’t really know this just yet.

Why do some patients not respond at all to the gold standard of Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone?

We often don’t know this as well. There is extensive work regarding the role of cereblon in patients who do or don’t respond to Revlimid.

What is the average length of time a drug regimen works before having to switch to a new one?

This is different for everyone and highly variable. That being said, it tends to be longer in earlier lines (i.e. The first line lasts longer than 2nd line than 3rd line, etc.).

If a patient doesn’t do well on chemo and is transplant-ineligible, what is gold standard for next steps?

There is no universal answer. We decide therapies based on three main factors:

  • patient-related factors
  • disease-related factors
  • treatment-related factors 

There is no “gold standard,” and there are oftentimes multiple options with different risks and benefits. 

With all of the new developments, has the length of life increased?  We were originally diagnosed 3 years ago and told the average lifespan is 7-10 years. Is it still accurate?

The length of life is certainly increasing.   The most up-to-date data is listed on the SEER website

However, as you will note, the data currently looks at 5-year survival rates for patients from 2012-2018 as it has not been 5 years since 2019. We really don’t know the rates of a patient diagnosed today. But they continue to improve. Unfortunately, those with high risk and more specifically ultra-high risk are not seeing the same degree of benefit.

Side effects 

Multiple myeloma affected my kidneys to the extent that I had to begin dialysis. I had a stem cell transplant in 2018. Are there any new treatments to help with this reversal? I have the urge to urinate only.

Myeloma can affect the kidneys in a number of ways. Some are reversible, and some are far less reversible. In general, the longer one remains on dialysis, the harder it is to reverse the kidney damage.

How to overcome side effects from multiple myeloma chemotherapy? Weight, neuropathy/tingling feet, tiredness, or agitation.

Best to discuss this with your care team. There are a number of strategies, but they need to be individualized to you, your treatment, and your myeloma.

Had BMT, in remission, feeling great, but no libido. What did it? The cancer, chemo, radiation — all of it. Can’t use Viagra and mainly have no interest. I was not like this pre cancer.

Therapy can lower testosterone levels. Consider checking them in consultation with a urologist.

Transplant

My 35-year old husband was diagnosed in 8/2022 and will be undergoing an autologous cell transplant in January and an allogeneic stem cell transplant in March. Advice for recovering from transplants?

Eat well, sleep well, and exercise. Basic tenets of life will help before, during, and after transplant. The other strategies should be discussed with your care team and be individualized to you. 

What are my treatment options if I can’t get another bone marrow transplant in a new relapse?

There is no universal answer. We decide therapies based on three main factors (patient-related factors, disease-related factors, treatment-related factors). There is no “gold standard,” and there are oftentimes multiple options with different risks and benefits. 

CAR T

One side effect of CAR T-cell therapy is a depleted immune system and extremely low IgG. This seems much more serious than its current explanation. How serious is this?

CAR-T can lead to immune suppression in a number of ways. Many of them recover with time. IVIG is a good strategy to augment your immunoglobulins during this time.

Can the CAR T-cell therapy be repeated after, or is it a one-time treatment?

Patients can be treated with more than one CAR-T, albeit this is not a common occurrence.

What results have you seen with patients that have had a second CAR T that targets BCMA?

There is limited data looking at patients who receive a 2nd BCMA CAR T. The outcomes are extremely variable and depend on a lot of things, such as how long was it in between your CAR T’s and what is the nature of your relapse.

Bispecifics 

Is teclistamab being administered out there in community hospitals and clinics yet? How is it doing?

So far the overwhelming majority of teclistamab is in academic centers as the FDA approval recommended inpatient admission to the hospital for the initial step-up dosing. It will take time to roll out in the community.

How many deaths “approximately” have there been caused by bispecific clinical trials and treatment?

There is unfortunately no way to answer this for a large number of reasons, apologies.

MRD

What would constitute MRD positive/negative in numbers, if possible? For example, M-spike = 0 for how long, abnormal plasma cell population percentage of WBC, and what else is relevant?

MRD evaluation is independent of M-spike because the M-spike measures a protein and the MRD test measures the actual cell. MRD can be assessed by a number of different methods, with the two leading methods being next-generation flow cytometry (NGF) and next-generation sequencing (NGS). The positive/negative parameters are set by the technology and the number of cells analyzed. 

Second cancers

What are the prevalence and treatment considerations for patients with relapsed/refractory multiple myeloma (RRMM) that develop myelodysplastic syndromes (MDS)? Are there clinical trials in our area, and if so, how do you find out about them?

MDS is an uncommon but known entity in patients with RRMM. The treatment options are individualized for MDS, just as they are in myeloma.  Options include therapies like the hypomethylating agents and even drugs like lenalidomide.

Trials for MDS in RRMM patients may be complicated as many trials exclude patients with other malignancies. Always best to discuss with your care team about the options. Clinicaltrials.gov lists all trials and oftentimes includes the inclusion and exclusion criteria, as well as a contact for the teams running the trial. 

Which myeloma drugs/treatments cause increased prevalence of melanoma?

In general the answer is none. Myeloma itself can increase the risk of non-melanomatous skin cancers. Melanoma is a rare occurrence in patients with MM. That being said, drugs like lenalidomide can increase the risk of a 2nd cancer such as melanoma. 


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Categories
Arimidex (anastrozole) Breast Cancer Chemotherapy Hormone Therapies Invasive Ductal Carcinoma Patient Stories Radiation Therapy

Bethany’s Stage 4 Metastatic Breast Cancer Story

Bethany’s Stage 4 Metastatic Breast Cancer Story

Bethany W. feature profile

Bethany achieved remission after being diagnosed with stage 2 breast cancer, at 34. After learning she was cancer free, she started to make big changes in her life including, separating from her husband, moving to Colorado and falling in love.

But not too long after, she started getting severe back pain. After being told she didn’t need a scan, the pain worsened until she finally begged for one. A lower back MRI revealed lesions all over her bones and she was diagnosed with stage 4 metastatic breast cancer.

  • Name: Bethany W.
  • Diagnosis:
    • Metastatic Breast Cancer
  • Staging: 4
  • Initial Symptoms:
    • Lower back pain
  • Treatment:
    • Chemotherapy
    • Radiation
  • Maintenance Treatment:
    • Zometa (bone strengthener)
    • Anastrozole (hormone therapy)
    • Ibrance

I just crumpled into pieces… I felt like I did everything… ‘What more do you want from me, life?’

I was so angry. So angry. Now I have metastatic breast cancer, stage 4.

Bethany W. in bed
Bethany W. timeline

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


Starting a new life in Colorado

It was exhilarating. I felt amazing and just fell in love with Colorado, with the adventure, with nature. I got really connected with a cancer community called First Descents. They work with young adults impacted by cancer and create these free adventure trips. I had gone on some trips with them and it was so fun to connect with young people that were going through cancer.

When I’m in the treatment center, everyone has gray hair and they’re like, “You’re too young to be here.” I’m like, “Apparently not. I’m here. I just felt like I couldn’t relate to people. Same thing with cancer support groups. It was just all older, older people. Finding a younger community, I got to come right into that.

I started dating. I was very scared about dating post-cancer. I dated for fun… Then I met this guy named Tim.

I ended my marriage. I started dating. I was very scared about dating post-cancer because I had so many scars and changes, and I was worried that it might be some kind of baggage, you know? Like, “Oh no, who’s going to love me now knowing that I’ve been through this and that it could come back?” I didn’t live in that fear, but I acknowledge that that’s possible so it was really interesting.

I dated for fun. It was just a fun, playful thing. Then I met this guy named Tim. We met on a dating app, had dinner at this tea house in Boulder, and just hit it off right away. We just fell in love. We met one month before the COVID pandemic, which was hilarious.

If I’m going to be with someone, I need to be with somebody that I can really enjoy life with, especially when things get hard because they will get hard. That’s just life. Some other curveball will happen so I need someone that can make it fun, make it silly because I can do that. I need a partner for that, too.

Going into a pandemic was perfect for us. We had a freaking ball. We hunkered down together. We danced all night. We cooked amazing meals. We watched movies. We just made it so fun and just fell, fell, fell for each other.

We had been together for a little over a year and we moved into our first home together.

Bethany W. outdoors

If I’m going to be with someone, I need to be with somebody that I can really enjoy life with, especially when things get hard.

Bethany W. with family at the beach
Bethany W. handstands at the beach

Relapse

Symptoms

I started having [lower] back pain. When people are in remission, every new pain, new symptom, new anything, your mind [goes], Oh my god, it’s cancer. It’s cancer. You got to talk yourself out of a lot of those things. But for me, if it’s consistent like it lasts over two weeks, definitely take it to the doctor.

I called my doctor right away when I started having pain. I took my boyfriend to meet my family in Florida and we did a handstand contest on the beach with my nieces. We wanted to get [a] photo where all of our feet were up at the exact same time so we took a million photos and did a million handstands. My back really hurt that night.

The next day, I was like, “Oh my god, I’m getting old.” By the time that trip came around, I actually was wondering if I needed a wheelchair at the airport. It was so much pain. 

When people are in remission, every new pain… your mind [goes], Oh my god, it’s cancer. It’s cancer.

Pushing for a scan

I called the doctor. They’re like, “This sounds like an injury. I think you’re fine.”

I had a follow-up appointment three weeks later. I was limping and they’re like, “You know, 90% of people have [lower] back pain.” I’m like, “Are you sure I don’t need a scan?” And they’re like, “No.” I’m like, “Okay, okay.” 

I asked my OB-GYN, “Maybe I should get a scan.” I just kept asking everyone and no one thought I needed one. 

I went for chiropractics and yoga and tried to heal it. It kept getting worse to the point where it was so difficult to walk. Some days it would be okay. Because it wasn’t constant, they ruled it out as a recurrence.

Well, I had enough. Again, I hit that same “Enough!” moment and I’m like, “I need a scan. I don’t care. I’m getting the scan.”

I found a spine specialist. He finally ordered a scan. Insurance declined to pay for it because they said it wasn’t medically necessary.

At that point, I’m five years out from cancer and being pronounced physically cancer-free, and I’m like, “But I’m a cancer survivor. What do you mean?” They said, “Okay, fine. We’ll pay for it after you do six weeks of physical therapy.” So I do physical therapy. Later learned that it’s probably doing more damage to my body than healing. It certainly didn’t help. 

Bethany W. seated on couch
Bethany W. profile

I finally get a [lower] back MRI. At that point, it was really screwing with my adventure plans in Colorado. I was like, “I just need to know what this is so I can heal it. I want to rule out cancer, but I just need to know what it is.”

The doctor called me two hours later and I was at home alone on the couch. He said, “Are you sitting down?” I’m like, “I am now.” And he said, “We found lesions all over your bones.” I didn’t know what lesions are like. “What was that? Is this cancer?” He’s like, “It appears so. You need to call your oncologist right away.”

Reaction to the possibility of a relapse

I just crumpled into pieces. That’s stage 4.

I felt like I did everything. I did all the treatment. I even wrote and published my book. I tried to help people all my career. I was coaching clients. I have classes that I run and I was like, “What more do you want from me, life?” 

I had a PET scan and found out it was in my liver [and] all over my bones. You couldn’t count the spots in my liver. Also in my lymph nodes and my stomach.

I was so angry. So angry. Now I have metastatic breast cancer, stage 4.

I have [a] new medical team in Colorado, but I have humans and while they definitely messed up on the scan part, they were then all over my care.

It was in my liver [and] all over my bones. You couldn’t count the spots in my liver. Also in my lymph nodes and my stomach.

Treatment

I did not want a timeline and they didn’t give me one. They’re like, “This is treatable for many years.” I’m like, “Curable?” They’re like, “It’s not curable.” I know [there are] new medications and everything so I still hold out hope for that but, right now, I’m [accepting that] I am on treatment for life until I’m shown differently.

Going back into that world was absolutely crushing at first. I kept it quiet in the beginning. I was such a big sharer before, but I was like, “I need to work through this on my own first. Just my family and my people.”

At the time, my partner [and I] were only a year in. I’m like, “You are free to go. This is the hardest ask of anything. No one’s going to blame you.” I tried to give him every out and he was just like, “I am so in this with you.”

Everyone rallied. It was just beautiful. I had this moment where it was like, “Okay, you know what? This is happening. Whether I like it or not, it’s happening.” And so that turned on that thing in me, that was like, “Make the best of it. It’s happening.” It’s really what I believe. Live life in every way possible. Not to wait on things that [I] really want to do and just embrace what’s in front of me. 

I’ve been living with stage 4 cancer for a year and a half, and I went back into chemo. Two new chemo drugs did a really good job of shrinking things.

I know [there are] new medications and everything so I still hold out hope for that but, right now, I’m [accepting that] I am on treatment for life until I’m shown differently.

Bethany W. and Tim
Bethany W. with mom and Tim
Maintenance treatment plan

Now I’m on a maintenance treatment plan. I get a monthly infusion, a shot in my butt for hormone therapy, and then daily pills. It’s really manageable.

How often do you have treatment?

I go once a month. I make a very ridiculous reel every time I go in, which distracts my mind and makes it silly and fun. The infusions, the bone strengthener, it’s called Zometa.

I have a hormone therapy pill I take every day. It’s called Anastrozole.

I’m on a medication called Ibrance — that’s three weeks on, one week off — and that’s what knocks down my immunity. [Sometimes], I have to take an extra week off because my immunity is too low to continue that one so it’s a little bit of a dance with that one. It’s all working.

I also do acupuncture and massage. I eat as clean as I can, but whatever I’m eating, I’m going to love it and that’s more important to me than being super strict and crazy with food.

Side effects from treatment

With treatment, there are some side effects. They’re very manageable. I’m very immunocompromised. Fatigue and low immunity are the two main things. I learned to let my body rest and not push it. Some days, I can do so much. It’s like, “Yeah!” It’s very exciting. But I’m very much living in the present moment.

Follow-up protocol

I get scans every three months and so far, so good. 

My scans are phenomenal. I’ve had no new growth and I’m really grateful for that. I know it can change. I’m aware of that reality, but I’m trying not to live in the small world of that reality as well. I’m just like *fingers crossed*.

I follow people [who’ve been] around 10, 20, 30 years, and I’m like, yes! I’m going to soak my mind in those miracle stories because that’s what makes me feel good and empowered. I’m well aware of the other ones. It’s medicine for me. It’s mental medicine.

Live now. Live here now. Appreciate being here now. I would not have that perspective if it hadn’t been for cancer. I’m now in year seven of being in cancer treatment and I’m living a really, really beautiful life that I love. And so I love sharing that with people as well.

Bethany W. aerial yoga

If something feels off and not right, speaking up is so important.

Bethany W. at the beach

The importance of self-advocacy

It’s hard to hear that inner voice because you’re not quite sure. Is that my inner voice or just my fear speaking? If there’s any inkling, it is worth your peace of mind to get it checked out.

In my case in breast cancer, they stop scanning you when you’re pronounced cancer-free. I actually asked for a scan at the end of treatment. They did it but then they didn’t scan me again. I would demand a scan every year. Some doctors actually do that so I’m a little confused [about] how that works. But I would want at least an annual scan for your peace of mind. Your peace of mind is so worth it.

I would have demanded harder for [the] scan for the [lower] back pain. I would have said, “Listen. If the doctor said no, I need you to write in your notes that you’re denying me a scan right now that I’m requesting.” It’s a little bit of a power play, but do it because they’re liable for that and then that’s in the notes, that’s in the records. If something feels off and not right, speaking up is so important.

When my mind is clear, I’m at peace. I’m open. I’m asking better questions. It’s easier to make decisions… I can do that from a place of empowerment rather than panic.

Just getting answers is important. I’ve had to advocate [at] the beginning of my stage 4 treatment, too. I wasn’t getting called back. It was so confusing. Finally, I was like, “I need to talk to a manager now. This is stage 4. This is my life and I need to know that you guys are on top of this.” And she was wonderful. She [talked] with people and then all of a sudden, I did get a callback right away.

I recognize the medical system is busy. They’re so overworked. This was also [during the] pandemic. I was in a pandemic getting stage 4 cancer. So I have to be aware of that but also take care of myself the best that I can and also take care of my mind.

An advocate for my own mind, my thought patterns, what I’m feeding my mind, and what thoughts are running in there. If they are fearful and stressful [thoughts], I really do bring them to that practice of inquiry and question them so I can have a clear mind going into this process.

When my mind is clear, I’m at peace. I’m open. I’m asking better questions. It’s easier to make decisions. It is easier to do research if I’m not in agreement with something I’m hearing. I can do that from a place of empowerment rather than panic, which I’ve done both. Definitely experienced both but one way is a little more fun than the other.

Speak up and take care of your sweet mind and emotions. We’re going to go all over the place. It will be [a] roller-coaster [at] times as well. Falling apart is such an important part of healing, too. We’re letting those emotions flow through and out of our bodies. It’s not bound up and stuck in there then and that’s so healing as well. I really welcome grief. It’s so natural and necessary in the healing process, too.

Bethany W. holding book outdoors
Bethany W. and Tim

Living with stage 4 cancer

Within a matter of months, my [lower] back went from it hurt to walk to actually [being able to ski]. I remember getting on the mountain for the first time. I didn’t know if I’d ski again. I thought I might be in a wheelchair. I was just so grateful.

I went skiing. I can hike. I’ve been paddleboarding. I traveled to Costa Rica with my mom. We had a really fun girls’ trip. I got to be there for the birth of my nephew. So many magical, amazing things have happened that I’m like, “You know, this is not what I thought stage 4 cancer would be like. Yay! Oh my gosh, I can still have a great life with this, too.”

Now I’m really, really passionate to keep living, period, and keep sharing and helping others. It’s giving me this amazing sense of purpose. I got to record the audio version of my book as well. 

Everything is shrinking and disappearing physically in my body. I very much hope it stays that way. I live in cancer land so I know so many people and my friends are passing away. They’re dying and that is the absolute hardest part of this. [They’re] good people who are making all the right decisions and have great mindsets, too. For some reason, their bodies aren’t responding to treatment and it’s heartbreaking. I think I’ve lost 14 or 15 friends in the [span of a] year and a half and each time, it does not get easier. It just breaks me. And that’s going to be part of my journey.

The longer I live, the more I will see that so I just think: how can I honor them? How would they want me to live my life? They wouldn’t want me to live in grief and crying, but I am going to cry for a bit and then I’m going to honor them by living it up. They have given me so much wisdom, too. Just hug your loved ones and love your life. You’re so lucky to be here. I really want to keep holding that perspective.

If I look at the statistics — which I don’t, but I, unfortunately, come across. If I’m reading an article or [it’s] Breast Cancer Awareness Month, my whole Instagram feed is full of it and I try not to look at it — the odds are not in my favor to be here for very long. But, at the same time, those statistics are based on old medications.

The medication I’m on right now is newer. I haven’t even entered [the] clinical trial phase yet. It’s not based on those medications. For something to become a statistic, it takes years. Years. So it’s old data. It’s not my body. My body isn’t in any of those stats. I have to bring myself back to reality. It’s like, “You’re doing well. Things are disappearing.”

Even though these nightmares happened, it doesn’t have to always be a nightmare. We think of cancer as a death sentence. I look at it like it’s also a life sentence. Let’s really live life and prioritize the things that [we] really want and not wait anymore.

There’s also that pressure [to] do it all now. I can’t do that. My body can’t. My finances can’t. I do have to work with that part of it as well.

Bethany W. gratitude

What a gift and a privilege it is to be able to live this work and then share it as well.

Bethany W. holding book 5 years

Words of advice

I birthed [my book] in between my diagnosis. People ask me, “How are you so positive? How are you enjoying?” Not all the time, of course, but how I find that state of mind is all in this book [as well as] humor, silly stories, and tips. It’s how I support myself now with cancer as well. 

I’m so proud of this book. It’s the book I wish I could have read when I was first diagnosed. It’s helped so many people [and] that’s such a nourishing feeling. When I get an email from a stranger that [says], “You totally changed my experience of cancer,” what a gift and a privilege it is to be able to live this work and then share it as well.

Look at what every challenge of this journey is teaching you. It might be to slow down, to advocate, to be more present. It might be to fall apart. It might be to ask for help, to say yes to support. There [are] so, so many lessons in this journey.

I’m not saying that if I would have learned those lessons, I wouldn’t be in this situation. We’re in it. Who knows why, but we’re in it. It’s a way to extract a lot of beauty from it as well. That puts me in a state of gratitude and appreciation for what I’m going through instead of fear and anger. To me, that’s also physically healing, to be grateful. I don’t think it can hurt, that’s for sure.


When she was in her late 20s, Bethany used to find lumps that turned out to be either swollen lymph nodes or cysts that would eventually go away. But that one lump she found, which she decided to not get checked, turned out to be cancer. She shares her story of how her cancer journey began.

Read Bethany’s stage 2 breast cancer story here »


Bethany W. feature profile
Thank you for sharing your story, Bethany!

Inspired by Bethany's story?

Share your story, too!


Metastatic Breast Cancer Stories

Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer, HER2+ & Colon Cancer, Stage 3
Symptoms: Shortness of breath, lump under armpit, not feeling herself
Treatments: Chemotherapy, Transfusions
April D.

April D., Metastatic Triple-Negative Breast Cancer, BRCA1+



Symptom: Four lumps on the side of the left breast

Treatments: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Brittney shares her stage 4 breast cancer story
Brittney B., Metastatic Breast Cancer
Symptoms: Lump in the right breast, inverted nipple

Treatments: Surgery, chemotherapy, immunotherapy, radiation
Bethany W. feature profile

Bethany W., Metastatic Breast Cancer



Symptom: Lower back pain
Treatments: Chemotherapy, radiation, maintenance treatment

Abigail J., Metastatic Breast Cancer, HER2-low, PIK3CA+



Symptoms: Back and leg pain, lump in breast



Treatments: Surgery, chemotherapy, radiation, CDK4/6 inhibitors


Categories
AC-T Adriamycin (doxorubicin) Breast Cancer Cancers Chemotherapy Cytoxan (cyclophosphamide) Invasive Ductal Carcinoma Mastectomy Radiation Therapy Surgery Taxol (paclitaxel)

Bethany’s Stage 2 ER+ Breast Cancer Story

Bethany’s Stage 2 ER+ Breast Cancer Story

Bethany W. feature profile

When Bethany was in her late 20s, she used to find lumps in her breasts that turned out to be either swollen lymph nodes or cysts and would eventually go away. But when she was 33, she neglected to get one lump checked and it turned out to be cancer.

She shares her journey of how she went from not believing in medicine to blending the natural healing world with Western medicine and how the fear of recurrence pushed her to make big life changes.

  • Name: Bethany W.
  • Diagnosis:
    • Breast Cancer
    • ER+
  • Staging: 2
  • Initial Symptoms:
    • Lump in breast and armpit
  • Treatment:
    • Adriamycin (Doxorubicin)
    • Cytoxan (Cyclophosphamide)
    • Taxol (Paclitaxel)
    • Double mastectomy
    • Radiation

Here I am studying all these ways to be present, to be mindful, to embrace life, to learn, [and] to grow. What if that’s cancer? What if cancer is something that can be a teacher in some way and even improve my life or maybe help me appreciate life more?

Bethany W. holding book
Bethany W. timeline

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


Pre-diagnosis

Tell us about yourself

I live in a small town just outside of Boulder, Colorado. I’m pretty obsessed with nature and adventure. Colorado just offers so many options for that. I’m so excited [about] ski season, hiking, nature walks, kayaking, [and] paddleboarding. It’s a new life for me out here. I’ve been here [since 2019]. I love anything outdoors. I love movement. I love life and the people in it.

I enjoy whatever is in front of me, whether it’s [a] delicious cup of coffee and chatting or sitting in the infusion chair for treatment.

[I’m] a lover of life and an inquisitive person as well, someone who challenges traditional belief systems, ways of living, or ways of looking at things. I get a little extra excited when someone’s like, “Oh, this is the only way.” I’m like, “Hmmm. Really? Okay, well, maybe we can challenge that a bit and see how there are just so many ways to live life, to enjoy life, to heal, [and] to be with people.”

I was [previously] in Texas. I was in Dallas and a little bit in Austin. Before that, I grew up in Florida. Florida, Texas, [and] Colorado are my three main homes.

Bethany W. outdoors with dog
Bethany W. aerial yoga
When did you start to feel something may be off?

I found [the] first lump in my late 20s. At that time, I had a career as a yoga therapist, worked in wellness for many years, studied mindfulness and ate organic. I consider myself a really healthy person. I have no family history of cancer. But I did find a lump in my breast [so] I went and got it checked out. It was just a swollen lymph node or a cyst and it went away. I had very dense breast tissue. I had maybe four or five of those.

The first one [was] very scary. I didn’t realize there could be lumps that weren’t cancer. When you have dense breast tissue, it means it’s lumpy. Over time, those lumps would change and work themselves out so I learned how to monitor them, take them in and I felt I [had] a pretty good rhythm.

Fast forward to 33 [years old]. I found another one and decided not to get this one taken in and checked out. By that time, I already had enough of them and it’s always turned out to be nothing. I [didn’t] feel like going through that [whole] ordeal. I didn’t have health insurance at the time either. I was paying out of pocket for anything doctor related. I wasn’t very motivated to get that one checked out.

I first found the lump [in] November 2014. Over time, I noticed that it did start to grow. I talked myself out of it. I told myself that it was possibly a fibroadenoma. It’s just another swollen cyst. I’m so healthy. I don’t have a family history.

It wasn’t until the following summer [that] I felt another lump in my armpit and I’m like, Hmmm, that’s different. I had a really good girlfriend who was also a yoga teacher. Very healthy, lives a healthy lifestyle, has a great attitude about life, and she was diagnosed with a really aggressive form of sarcoma — stage 4 right off the bat — and it started as a pain in her hamstring, which she just thought was something from yoga. When she got diagnosed, that was definitely the wake-up call of, “Hey, you’re not immune to this. Young bodies get cancer.” I didn’t know much about it. I didn’t know many people. That really prompted me to get things checked out.

How much time had passed before you had the lump checked?

It was about eight or nine months in between. I found that lump, didn’t take it in, and then finally I did.

I considered myself a natural person. I would use nature to heal. Medicine was something I didn’t believe in at the time and [I would think to myself], “Oh, even if it was something serious, I wouldn’t use Western medicine to heal me. Are you kidding? That’s Big Pharma and I had all these beliefs about it.”

Getting the initial scans via thermography

When I did decide to get that lump checked out, I actually went for thermography. I was with a naturopath. I was in Texas at the time and had used it in conjunction with ultrasounds prior to that time. The results matched always. I was told with thermography that “there’s no radiation so it’s healthier for your body. It detects cancer six years earlier than mammograms.” It was just toted as kind of the better, healthier way to detect what’s going on in your breast tissue.

Those scans showed no signs of cancer in my breast or in the armpit so I was elated. The doctor gave me some homeopathic remedies, some other treatment options [to] flush my lymphatic system, and cleansing.

But in my time working with him, the lump started getting bigger in a matter of weeks. I asked him, “Are you sure I shouldn’t maybe get a mammogram? I don’t know. This feels weird.” We repeated [the] thermography scans two more times. Again, no signs of cancer.

Bethany W. hospital gown

You are not too young [or] too healthy to get cancer. It can happen to anybody.

Bethany W. diagnostic testing period
Finally getting an ultrasound and mammogram

I still felt off. Finally, I was like, “I think I need an ultrasound or a mammogram.” And he said, “Okay, but just remember that mammograms cause cancer.” That’s a big story out there that prevents a lot of women from just going to a doctor and getting things checked out. I said, “Screw that. Maybe. I don’t know, but I have some big lumps here and I need to know what these are.”

I’m so happy I listened to that inner voice. I would have loved to turn her on nine months before when I first felt the lump, which is a big part of why I tell my story now. You are not too young [or] too healthy to get cancer. It can happen to anybody. Cancer loves bodies. It is just looking for a place to grow and thrive.

I did go the route of an ultrasound and a mammogram, which showed very suspicious activity. By that point, the lumps were protruding. You could see it coming out [of] my breast. A biopsy is what confirmed it.

What was that moment when you said you needed to see what this is?

I was driving home from my third or fourth appointment with the naturopath and I expressed my concern one last time. “I don’t know. I don’t feel comfortable with this.” His answer: mammograms cause cancer. I did respond, “I already have the lumps. Do you think they’re going to magically turn into cancer if I get my first mammogram? Do you think that that’s the case?” He [got] startled and [said], “Well, you do what you need to do.” I’m like, “I am.”

I actually kind of stormed out of that office, got in the car, and got my mom on the phone. My mom has a background in nursing. The whole time she’s like, “Go to the doctor. Who is this guy? Seems like a quack. Go to a doctor.”

I also felt really lost at that time, too. I knew I wanted one. I had no idea how. Here I am, I’m 33. I don’t have health insurance. I feel like an idiot. I’m beating myself up about not having health insurance in this situation. This was [at] the beginning of Obamacare. Health insurance for someone who is self-employed was so expensive. It was half my income for the month and I just couldn’t afford it.

Luckily, my husband at the time, his mother worked in a doctor’s office in Dallas. I reached out to her and I’m like, “Is there anything you can do to help? I need to get these lumps explored.” I’m so, so, so lucky because she just jumped right in. She got me [an] appointment with her PCP. I qualified for a charity grant for a mammogram and ultrasound.

Now, did I think it was cancer? No, but I wanted to rule it out. I need to know what this is just for my own peace of mind.

Luckily, with the Affordable Care Act, I was able to get health insurance in the middle of the year because I had just moved so I qualified for special enrollment. It was just this magical thing all coming together.

Bethany W. blood extraction

It really started dawning on me: Oh my god, this could be cancer. What if this is cancer?

Getting the biopsy

My insurance hadn’t kicked in yet. I could have waited a few weeks to get the biopsy, but I got a quote for it. I think it was $825 or something. Cue naivety. I thought, I can do that. That’s worth my peace of mind right now, honestly. I’ve just been in this already for weeks and I just need to know what this is.

Bethany W. yoga
Dealing with “scanxiety”

At that point, I just got trained in this mindfulness practice of inquiry called The Work of Byron Katie so I have all these tools for dealing with stress. That’s literally my career at that time. During the diagnostic phase, when I still couldn’t figure things out, it really started dawning on me: Oh my god, this could be cancer. What if this is cancer?

I completely spiraled downhill. My mind was full of worst-case scenarios and all I could think was I have cancer. My life is over. All my dreams are done. My relationships are over. This is going to absolutely crush my family. I couldn’t see any kind of good or positive outcome in this situation.

I was just torturing myself for not getting things checked out sooner. Thoughts like, It’s my fault. I did something wrong to create this in some way. Obviously, I wasn’t healthy enough or good enough or a good enough person. I had all this self-blame going on and with my mind full of all of those beliefs, all those emotions, I just spiraled down and didn’t want to leave my bed. I was depressed. I was lashing out at people that were trying to help me. I’m like, “You don’t understand. You don’t know what this is like.” It felt so lonely.

I knew the mammogram and ultrasound were suspicious. I had a biopsy scheduled. The interesting part now is that that time period was so important to me and my journey because I really got to see the cause of [my] suffering and the cause of my pain [at] that moment because I had no idea if it was cancer.

Cancer could not have been the problem [at] that moment. We didn’t even know if it was real or not. But what was real was everything that was going on in my mind. My mind was full of it — not of cancer [but] just worst-case futures. I believed them and I went downhill.

I hit this moment where I was like, “Enough! This is enough! I can’t do this anymore.” I hit a level of suffering where it was just, “I have to try something else.” That moment,  just like that inspiring moment to go get a mammogram, that inner voice kicked in again and it’s like, “Girl, you have tools for this. Let’s go back to them.”

I reached [into] my little healing toolbox and pulled out The Work of Byron Katie, which was the practice that I was just certified in. It’s a way to take those thoughts [and] get them all out of the mind. Write them down on paper. Beliefs like, “My life is over. Cancer will ruin everything. I’ll die young.”

I just started writing. Writing, writing, writing. Then I started questioning those beliefs and asking myself: “Is it true that my life is over? Can I really know for sure?” I’m like, “I can’t know for sure. It feels that way, but I don’t know. I don’t even know if it is cancer. Even if it is cancer, does that mean my life is over right away? I don’t know [the] cancer world well. Actually, there are people that are still around that have been diagnosed.”

Bethany W. aerial yoga
Bethany W. close up

Then another question of that process is, “How do you react when you believe that your life is over?” And that’s the depression, that’s spiraling down, that’s the lack of motivation to even take a walk around the block or eat [healthily]. I wasn’t motivated to do anything and [was] angry, rageful, and just lost.

Then I asked myself the final question of that process: “Who would I be in this same situation?” I have a biopsy scheduled at that point. Who am I in this situation? I don’t know what it is, but who am I without the thought my life is over? I had to sit and meditate in that space for a bit. Another thought would come in. I’m like, “Put out that thought. Who am I without that thought?” It slowed down my mind enough to come back to reality.

[At] that moment, [the] reality was there’s no proof there’s cancer at that moment. I have the next step, which is the biopsy scheduled. How grateful I am that I’m able to do that. I’m breathing. I actually felt really good physically without the thoughts. I have more energy. I’m not so tense. I’m seeing I have a lot of support around me.

Then I move into turning these thoughts around — My life is over → My life isn’t over — and looking for some examples of that. In reality, I’m alive. I’m speaking. I’m looking at this body. I’m moving. I’m breathing. I’m eating. I’m digesting, I’m showering. I’m alive. My life is not over. It’s happening right now. Then I started to look at even if it was cancer, how could it be true that my life isn’t over, you know? Or maybe my life is just beginning?

I started entertaining this possibility of, “Let’s play with this worst-case scenario, and how could that even be good.” I sat in that question, journaling, writing, and some really neat answers came out. I was like, “You know what? This could be a really amazing adventure. Here I am studying all these ways to be present, to be mindful, to embrace life, to learn, [and] to grow. What if that’s cancer? What if cancer is something that can be a teacher in some way and even improve my life or maybe help me appreciate life more?” That was already starting to happen.

Going in for the biopsy

When I went in for the biopsy, the nurse, her name was Joy and I just thought it was perfect. She was so sweet. I watched her walk me through all the details, put on the cozy socks, and she had a warm blanket for me. I’m just like, “Wow, there’s so much kindness here.”

The doctors came in. They explained everything and held up the giant needles that were going to be going [into] my body. They’re like, “Do you want to watch the procedure on the screen?” I was like, “Hell, no. Please put something over my eyes and thank you.”

I was really mindful through all of it and it was kind of fun. I talked with everyone and I was grateful that it was happening because these tests are what’s going to tell me what’s going on in my body. Therefore, I can know, stop living in that land of the unknown, and then know how to deal with it.

Bethany W. smile

Diagnosis

Official diagnosis

The official diagnosis of breast cancer was September 16, 2015. I had done a full body PET scan [and] brain MRI just to confirm it hadn’t spread to other places. Getting those results that it hadn’t was very nice to hear. Very relieving.

I had hormone-positive cancer, ER-positive. It loved estrogen. My body was really good at making it in my young 30s.

Bethany W. treatment
What was your reaction to the diagnosis?

By the time I heard those words, “You have cancer,” it was a few weeks after my 34th birthday. I was at home sitting on the couch, watching TV. I had known the results could come in any time. While I say I could find peace with cancer, I was still stalking my phone like crazy. I remember thinking, Should I get a car wash? Eh, no, I’ll just stay. I’ll just stay here.

My husband had just come home. I saw the number on the phone. [It] was the PCP’s office and it was just like, “Oh my god. Oh my god. This is it!” [My] heart rate goes up and he’s sitting next to me.

She was so kind. She said, “You know, I wanted to tell you as soon as possible. I know you’ve been waiting on the results and this is the part of my job I really don’t love. This is the hard part of my job.”

They found cancer in both breasts and the lymph node. Hearing those words, it was just like time stopped. I think I could have described every nanosecond. My hand was on the couch, the other one was on the phone. We had our foreheads touching, just leaning over, and we were just frozen.

Then she went on to share, “People get through this. I just had a patient who’s in her late 20s. She made it through. She just had her first baby.” I love that she was being a human on the phone with me and very caring. I still was like, “Are you… Really? Cancer? This is cancer?” It took moments to settle in. I was like, “What?”

We hung up the phone and I looked at my husband. I was like, “What do I do now? What do we do?” Then he just grabbed me, pulled me in, and we just started sobbing. While that was such an intense moment, I felt so much love, too.

I stood up and got really hot. My body started sweating. I had to take my shirt off. I was just pacing. I’m looking down and I’m like, “That’s cancer? What?”

Then it began — meeting with the breast surgeon [and] oncologist, and getting more tests done. My insurance kicked in finally and that biopsy bill turned out to be $8,000 instead of $825.

Bethany W. hospital bed

It was so much all at once. Just the emotions of my life just changed forever. With all the mental practice I was doing, I was trying to stay present with it. “Okay, it’s go time.”

It’s also heart-crushing how quickly your life changes. In my 30s, everyone else is growing careers, growing babies, and I’m growing cancer. I’m just like, “What? What the heck?”

Bethany W. treatment

Treatment

My first chemo was [at] the beginning of October. Within mid-October, I was bald.

They staged it at a late stage 2, early 3. There was a large mass in my breasts, a few little satellite nodules, and my left armpit had a tumor [that’s] 4.8 cm. That was the one that I felt. Some other ones were looking positive as well.

I asked — of course, Miss Natural Me, was very naive — and I’m like, “Oh, so we could just scoop that out in a little surgery and I’ll be cancer-free by the end of the year, right? That’s how this works.” And no, that was not how that worked.

I showed up to the office and again, my breast surgeon — so kind — is looking at me like a human. I know not everybody gets that experience and I was just so grateful. She’s holding my hand. She’s walking me through everything.

We couldn’t do surgery right away. She said, “If we did [the] surgery, it would be very mutilating to your body, especially in the armpit area, because you might lose the use of your arm. With that, I think we should do chemotherapy first with the goal of shrinking everything and then be able to have less invasive surgery.” That sounded like a great plan because I’m like, “I love my arm. I very much would like to use it.” So that was clear.

Then she said, “Five to six months of very aggressive chemotherapy, then surgery, then six weeks of radiation, and then five to 10 years of hormone therapy.” And that’s where I was like, “Are you kidding?” I just looked at her stunned.

I remember her drawing the graphs of how cancer cells multiply and divide in the breast ducts. I just was like, “That’s my body? You’re talking about my body right now? This is so confusing to hear all of this because I feel so healthy. If I didn’t have those lumps, I just felt on top of my health, on top of the world. I felt great.” 

I love this moment. She grabbed my hands, looked me right in the eyes, and said, “You feel healthy because you are healthy.” I was just like, “Dang, you’re awesome.” Because that’s true. You think, “Oh, now I’m a cancer patient and now I’m sick.” No, I’m also a really healthy person. I just happen to have some cancer growing in my body. And that’s a totally different perspective than what we hear out there. Very empowering to hear as well. I am healthy. I am strong. And then you know what? I got this.

Starting chemotherapy

I dove right into that treatment plan. I thought of it in phases. It was too much to wrap my head around everything.

[I got] Adriamycin and Cytoxan, so AC. Four treatments every other week and that’s known as more aggressive, go after it really quickly, so a little bit more intense on the body. Then 12 weeks of Taxol so that took me into finishing in March. There were some times [when] my numbers were too low to be able to continue treatment so I’d have to take a break and come back so it extended it a little bit, which is normal in the process, too.

Bethany W. masked up during chemo
Bethany W. treatment

The stories I heard about chemo [and] what I saw in movies are my reference points of chemo being poison. I actually challenged some of those beliefs, specifically that chemo is poison to my body and that it’s poisonous to me. I found the opposite. Chemo is healing my body when I took it through that process.

You read the side effects, it’s terrifying. Imagine this future of bald, vomiting, gray skin. No quality of life is where my mind was going at first. Then as I started walking through it in inquiry, it was like, “I don’t know if it’s poisonous to me. I’ve never had it. I don’t know how’d my body react. I’m young, healthy, and strong. There’s a lot of complementary natural ways to support side effects and I’m actually pretty excited to learn more about that stuff.”

I started blending the natural healing world with this Western medicine world. [I] also looked at my other beliefs about Western medicine. You hear, “Oh, Big Pharma is only in it for money,” or “Doctors aren’t human. They’re just trying to make you sick.” These were the things I was hearing at the time in the natural world. I laugh at a lot of it now. Maybe that’s true in some cases but I’m looking at my doctors holding my hand, looking me in the eye, and crying with me. That’s a human right here. And you know what? They want what I want: to be cancer-free and live a good life. It doesn’t really look good on them if I’m dying next week. They’d run out of patients really quickly. It was just seeing this other world of medicine.

I became so grateful. It became a privilege. I’m so lucky I have treatment options.

Here’s this thing I’m going through. How can I make it better and more fun? Because whether I like it or not, I’m going through it.

When I went in for chemo, I nicknamed it. I changed the name to see love. I did this for a lot of things. I changed the name to something super cheesy, but it made me feel better.

I’d go and get all plugged in with my port. I’d see the kindness in the nurses. I’d make friends with my neighbors. I’d bring all my movies, coloring books, or whatever to entertain myself and I would have fun. There was this baseline of here’s this thing I’m going through. How can I make it better and more fun? Because whether I like it or not, I’m going through it.

How did you deal with hair loss from chemotherapy?

I loved my hair. My hair and my breasts, I considered my two best assets. I love them. My hair was touching my butt — long, curly mermaid hair — so that was really emotional. I hadn’t had a haircut in forever either so I knew that would be hard.

Bethany W. c-love
Bethany W. bald is the new beautiful

I decided to throw a hair party. I had a friend, a yoga client, who had a hair studio. He opened it up on a Sunday. I brought friends and family in and we had champagne and sushi. It was a really fun day and a special moment.

I had so much hair come out. I also was able to donate it. I found an organization that makes wigs for young children who have been affected by cancer. I just thought if I can’t have this hair, the thought of little kids running around playgrounds wearing it just made me smile. So I did that.

I started chemo with a little pixie cut and I really thought that I would bypass any emotions about actually losing my hair. I was like, “Yeah, I got this.”

Day 16 was the morning I actually did. It was exactly when they told me it would be. I started feeling like my scalp was really tender. I woke up at 6 a.m. I looked [at] the pillow and there were clumps of hair. I had heard about that when I was starting to read books. I was like, “Okay. This is it. It’s happening. Okay. Okay. We can do this.”

I leave my husband in bed and I go to the shower. I had read that you could rub it out when it was wet in the shower so I’m rubbing it out more and more. I’m looking at the floor and [there are] clumps. They look like little wet hamsters all over the shower floor. I’m trying to build myself up like, “Okay, okay, you’re good. You’ve got this.”

The steam got to be so intense that I thought I might pass out in the shower so I stumbled out. The moment that I was not prepared for was looking in the mirror. These patches of hair and zigzags. I had no idea who was looking back at me in the mirror.

I lost it, just started screaming. My husband came in and I was just like, “Get it all out now! Get your shaver!” And he’s like, “But my shaver won’t work on heads. It’s only for faces.” And I was like, “Go buy one!” I grabbed scissors. I started cutting this part [in front]. I was a disaster. I can laugh about it now because it’s one of the funniest stories but at the moment, it was so dramatic. Finally, a few hours later, he had gotten the shaver. I charged it and just shaved it all off.

It was so interesting to look at the pain behind being bald [and] eventually, losing my breasts or having my breasts replaced. I did have a double mastectomy. These are what make me a woman and beautiful. Those are my beliefs. I looked at them, like, “Is that really what beauty is?” In reality, I know it’s what I think it is but is it? Can I find it anyway?

I started loving being bald. It’s so freaking easy after having hair down to my butt for years. Warm things like the shower felt so good on my head, like a little scalp massage. All senses were heightened. Then it was fun. I’d walk around really proud. I would go to fancy restaurants in Dallas, totally bald but with a really cute dress on. I was like, “I’m going to own this. Whatever. It’s happening. I’m going to own it.”

Bethany W. shaved head
Bethany W. angel wings

I think I have this pattern of “It’s so hard” right in the beginning, I freak out, and I let myself freak out. Those emotions are natural and they’re meant to flow. Then eventually, I’ll make peace with it and be like, “How can I make this fun? What can we do here?” I took that mindset to each phase of treatment.

Deciding on breast cancer surgery options

After chemo, then the surgery decision. Chemo shrunk my tumors. It was amazing. It was like magic. It shrunk them down to microscopic level. [There were] barely signs of cancer come Christmas that year. 

I had all surgery options — a lumpectomy, a single, or a double. I completely tortured myself [during the] decision-making process because I loved my natural breasts. But, at the same time, I saw that my breasts are very dense. They’re very good at growing lumps. Now, would I have cancer again? I don’t know, but I’d have a lump again and that would mean I’d have to go through ultrasounds, mammograms, and biopsies over and over.

I also had very large breasts for my body. They yanked on my neck and shoulders and I had headaches frequently [so] I was entertaining the idea of what might it feel like to not have [them]. After torturing myself for a long time around the decision, I did choose a double mastectomy for my long-term peace of mind and that felt good for me.

I know it’s always a personal decision. All treatment really is so I don’t judge people. Everyone’s just doing what’s right for them. I’m really happy that I made that decision.

I had my double mastectomy and had tissue expanders put in place. Those are like temporary breasts that go through radiation better than implants. They hold their place better because when you go through radiation, your skin will tighten and shrink.

That surgery was my cancer-free date. They got clear margins. They removed some lymph nodes as well.

Remission

I didn’t hear the news right away. I heard the news in the car with my mom. We were on our way to a park downtown to have lunch. We had just gotten some vegan pizza. The doctor called and [we] pulled over right away. It was funny. She said it in a very sterile voice. She’s like, “The pathology results came back and there is no evidence of disease.” I was like, “I’m sorry, what? What? What are you saying? Are you saying that… Is the cancer gone?”

It was really weird. As soon as I got around, we hung up the phone. We’re sobbing and then we went to the park. [At] that time, I was still healing from surgery. I had drains hidden in a fanny pack underneath my clothes and my breasts were taped up — literally a bra full of tape holding everything together. I’m sitting there at this park in downtown Dallas eating pizza with my mom.

It’s exciting to get that news but, at that point, I still had so much more treatment, too, so you don’t feel cancer-free. I had so much more to come at that point.

Bethany W. hospital bed
Bethany W. CT scan
What was the next step?

I had some complications [during] healing. I had this thing called cording in my armpit that showed up after surgery. It was weird. I did not read it in the very long list of side effects. These strings developed. Literally, they look like piano chords and they would go from [the wrist] all the way down through my armpit to my breast. I couldn’t lift my arm and it really hurt.

When I first brought it to the attention of my breast surgeon, she’s like, “You’re going to physical therapy right away. We have to resolve this before radiation.” Because when you’re in radiation for breast cancer, you have to hold [your arms up] for 10 minutes and be really still. She goes, “First of all, the cords? They don’t really know the cause of it.” They don’t know. They could last forever. They could be gone soon. There could be more. It was just very unknown. Of course, I freaked out about that.

I went into physical therapy and just loved my physical therapist. She was wonderful. It was like private yoga therapy for healing after surgery. I have a background in yoga therapy, but healing from a double mastectomy, I felt really nervous to push my body. This was unfamiliar territory to me. I tell everyone now, “If your insurance covers physical therapy, do it. Don’t wait for a complication.” I didn’t understand why everyone wasn’t just recommended to do it. I felt it was awesome.

I started healing really quickly. She would massage the cords. They would pop and break apart. It was creepy.

By the time I did have radiation, I had full use [of my arms] and range of movement. That took me into the summer. My tissue expanders were getting filled with saline every week and I literally watch my boobs grow a half size. That was hilarious. And painful as well as they would stretch.

I chose to do reconstruction. Some people choose to go flat. I still wanted to have breasts in some way. They stretched the pec muscle over on top of the implant or, at this point, the tissue expanders so it was painful. It was really intense.

They had to blow me up to a certain size before radiation and they had to blow me up [to] a bigger size on the radiation side. [In] the summer of 2016, I had a lefty super boob. It was just huge because it would eventually shrink more. The tissue expanders don’t move at all. It was weird, but it was nice to know they were temporary.

I had radiation that summer. That went great. As expected, your skin does peel and blister. It’s a really intense sunburn. Underneath was this baby butt-soft, brand-new skin that totally healed.

[The radiation] did some weird stuff like pulled [the] breast up and my nipple to the left a bit. Some women have their nipples removed with a double [mastectomy]. I was able to keep mine because there wasn’t any cancer near it. I got the set of googly eyes forever, but that’s okay.

Bethany W. expanders
Bethany W. hospital
Maintenance treatment

After radiation, all the big parts of cancer therapy were over. I got on a hormone pill called Tamoxifen, which is to basically block if there were remaining cancer cells floating around, microscopic ones. It would ideally bind the cancer cell’s mouths closed so [they] couldn’t feed on estrogen. That was a daily pill. That actually went great. It was very easy for me.

There I am just kind of released and they’re like, “See you in three months.” I had to wait about a year for that final reconstruction surgery, which is a big deal but it’s also not really cancer treatment. It’s working with a plastic surgeon.

It was a really interesting moment for me because here I am, physically cancer-free. I made it through the biggest parts of treatment and at first, it was exciting. Elating. Then I just got bombarded with so many emotions again: fear of recurrence.

I’m making friends in [the] cancer world and some of them aren’t here anymore. I’m just seeing these other possibilities. Big emotions were coming up.

That was a big lesson. Caregivers or partners have their own cancer journey, too. And to be honest, I think it’s harder at times.

How did cancer affect your marriage?

I was having a really hard time in my marriage. Cancer was connecting us in the beginning and then it started tearing us apart.

We had different views on healing. He was very much into the natural, alternative world and he saw chemo as poison. He thought it would kill me. He doubted everything the doctor said.

He also wouldn’t get help either. I was begging, “Please go to therapy.” It was about a year and a half into the process [when] he finally said yes.

That was a big lesson. Caregivers or partners have their own cancer journey, too. And to be honest, I think it’s harder at times because we’re all dealing with [the] unknown. Cancer is going to do what it does so that’s out of all of our control. But at least with me, I can be empowered in how I treat my cancer, how I choose to live, [and] how I react to things. I can affect that. But he can’t affect that either so it’s like [a] double loss of control. And of course, what’s underneath all of that is fear of losing me. What happened was he emotionally checked out a bit and I felt very unsupported.

Luckily, my mom, with her nursing background, was flying out. She lives in Florida so she was flying out for all the big parts of treatment. She was amazing. My partner was also amazing but he could not show up for me fully with the treatment part so I was just full of so much grief.

Bethany W. with her mom

I was having a really hard time in my marriage. Cancer was connecting us in the beginning and then it started tearing us apart.

Bethany W. dancing

Here I was, cancer-free. And that birthed my whole philosophy of cancer that being cancer-free, true freedom from cancer, it’s a state of mind. It is not a diagnosis. It’s not a physical condition so I had to find cancer-free again in my life. That involved letting these emotions flow, letting the grief come out, and then questioning [the] thoughts [that] cancer will come back [and] the beliefs about my relationship. 

Making life changes after achieving remission

I made huge changes in my life. I use the fear of cancer coming back in a different way where I don’t have to live in this constant fear.

It was really clear to me that I was done living in Texas. I’d actually been done 12 years earlier and just didn’t [leave] for many different reasons. But I was ready to go.

I had started spending summers in Colorado. I’ve always loved Colorado. I started writing. I wrote [at] the beginning of my journey. I shared my whole journey on a blog and on social media. It felt really good to write and that was very healing for me, so was sharing, and that connected me with so many amazing people in the cancer community as well.

Some answers became clear. I want to write a book about this experience. I want to help others. I could have fun in cancer. And so I did that.

My relationship was not working for me anymore. [In] the summer of 2019, I’m done treatment, in remission, feeling good, and I’m making big changes. I packed all of my belongings into my [car], separated from my partner, and drove to Colorado to start a new life to put [myself] first and see what I really want.


Bethany moves to Colorado to start a new life. There, she begins experiencing lower back pain. After being told that she didn’t need a scan, the pain worsened until she finally insisted on one. A lower back MRI revealed lesions all over her bones. She shares her story of finding out she had metastatic stage 4 breast cancer.

Read Bethany’s metastatic stage 4 breast cancer story here »


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Caitlin J., IDC, Stage 2B, ER/PR+



Symptom: Lump found on breast

Treatments: Lumpectomy, AC/T chemotherapy, radiation, hormone therapy (Lupron & Anastrozole)

Joy R., IDC, Stage 2, Triple Negative



Symptom: Lump in breast

Treatments: Chemotherapy, double mastectomy, hysterectomy


Categories
Active Myeloma Cancers Chemotherapy dexamethasone Filgrastim (Neupogen) KRD (Kyprolis, Revlimid, dexamethasone) Kyprolis (carfilzomib) melphalan Multiple Myeloma Neulasta Pomalyst (pomalidomide) Revlimid (lenalidomide) Velcade

Jenny’s Multiple Myeloma Story

Jenny Ahlstrom’s Multiple Myeloma Story

Jenny A. feature profile

After moving to Mexico with her husband and six kids, Jenny Ahlstrom started getting rib pain and felt extreme fatigue, but she chalked it up to exhaustion from the move and adjusting to her new life.

Months later, more symptoms started to appear including blood in her urine. She was then diagnosed with multiple myeloma.

She shares how she searched for the best treatment options, underwent three clinical trials, and launched an organization called HealthTree to help other patients.


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


  • Name: Jenny A.
  • Primary Diagnosis:
    • Multiple Myeloma
  • Initial Symptoms:
    • Fatigue
    • Blood in urine
    • Rib pain
  • Treatment:
    • Velcade
    • Thalidomide
    • Dexamethasone
    • Tandem transplant
  • Relapse Symptoms:
    • None; it was a biochemical relapse so just in the numbers
  • Treatment:
    • CAR T-cell therapy

Having cancer, you’re able to let go of a lot of the unimportant. None of that matters in life. It’s my family, my faith, and who I’m serving [that] give me the most meaning.



A year prior, we had moved from Utah to Mexico. We’re trying to get six kids acclimated… I had symptoms I probably didn’t pay attention to because I was just so busy and overwhelmed getting my kids in order.

Pre-diagnosis

Introduction

I’m a multiple myeloma patient. I was diagnosed in 2010 at the age of 43.

At the time, our family was on vacation. A year prior, we had moved from Utah to Mexico. We’re trying to get six kids acclimated to a new language, a new culture, and just everything new about that whole experience. My husband had been invited to launch the venture capital industry in the country so it was a big push. We sold our house, moved down there, [and] didn’t think we were coming back.

I had symptoms I probably didn’t pay attention to because I was just so busy and overwhelmed getting my kids in order. [I] had rib pain that wouldn’t heal and other things, and just kept getting pneumonia over and over again. Just thought, Well, I’m just tired. But who isn’t trying to do this?

Ended up going back to Utah and to Montana and I thought, Well, I’ve had these symptoms for a long time. I might as well just go get checked. I got a PET scan [of] my kidney area because my kidneys were kind of bugging me. They said, “Your spine and your pelvis are full of holes and you probably have cancer. It’s time to go get seen by an oncologist.”

We had two weeks left before we were supposed to leave to go back to Mexico after the summer and that was a bit of a shock.

Jenny A. with Alicia and Cindy at EHA 2022
What was your life like outside of multiple myeloma?

I grew up in San Jose, the Bay Area. I came to Utah to go to school and I ended up staying. I ended up working for IBM [and] got married. I have six kids.

I have an amazing husband who’s been very involved. He doesn’t work for the foundation, but he’s been very involved in helping create strategies so we’re [in] this great partnership. He comes up with some ideas and I execute them. He said, “You should build a university.” I said, “Okay. Do I have time for that? I don’t know, but we’ll try it.” It became one of our most popular programs. It’s been an amazing partnership to work on this, be creative, and create together what we built.

I love music, I sing, I play the piano, I cook, and I love taking care of my family. Between my family, my husband, and the foundation, I love [to] exercise and try to get some every day, but there’s not much time.

Initial multiple myeloma symptoms

It was fatigue mostly. In [my] last pregnancy, I probably had multiple myeloma three years prior. I think I had gotten it from a virus I got while pregnant.

I talked to somebody from one of the pharma companies a couple of years into my diagnosis. They said, “Oh, parvovirus B19? That has bone involvement. Did you know that?” I said, “What? No, I’ve never heard that before from any myeloma doc or anybody,” so I think that’s probably what caused it. I never really felt the same.

I didn’t gain very much weight at all. I lost weight while I was pregnant with the last one so I knew something was wrong. I was highly anemic. My doctor said, “I’m going to hospitalize you because you’re so anemic during this pregnancy.” I said, “You can’t do that. I have five kids at home. There’s no way.”

That and just rib pain that wouldn’t heal. [I] kept going to the chiropractor. It was a total miracle he didn’t break a bone trying to adjust me.

What made you decide to finally get checked?

We were in Mexico and I had blood in my urine for six weeks. I just kind of ignored it. I said, “I don’t want to go to a clinic and try to explain that in Spanish to a doctor. I’ll just wait ’til we go back home.”

The symptoms went away the day I went in. I almost didn’t go in because I said, “Well, it’s gone.” Good thing I did.

The doctor said, “You have holes in your bones and your pelvis. You need to go see an oncologist.”

Jenny A. San Diego round table

Diagnosis

Reaction to the multiple myeloma diagnosis

I got a call and I was just in the car by myself. The doctor said “I’ve been trying to get a hold of you from this hospital in Montana to tell you you have holes in your bones and your pelvis.” It didn’t register. He said, “You need to go see an oncologist.”

We have already been through a really aggressive cancer experience with my brother-in-law who had AML six years prior. I probably cried, but the feeling I remember having is, “Okay, if I do have this, then we’re going to do things differently.” And we did.

I ended up going to the same facility that he went to when he was first diagnosed, which was a local center, not an academic center. Had a very reputable oncologist see me. The oncologist really wanted to treat me that Friday. He said, “Okay, I’m going to start treating you on Friday. Don’t worry. You’re not going to lose your hair. We’ll think about transplant later.”

Six years before that, my brother-in-law had waited way too long to get [a] transplant and he passed within a year. The AML was very aggressive. He caught it really late. He kind of made the mistake of saying, “Don’t go up to Huntsman because they’ll have you doing tandem transplants.” So, of course, we hit the parking lot and my husband gets on the phone with the doctor at Huntsman who convinces us, “Just come up here.”

The difference in [the] number of patients that the local oncologist was treating, even though he was a wonderful oncologist… He didn’t even do a bone marrow biopsy before he said, “I think you have myeloma.” I said, “You think? You think I have something [and] you want to start treating me on Friday? We might want to get the testing done first.”

If that had been my only experience with cancer, I probably would have just said, “Sure. Okay, I’ll show up on Friday and you’re just going to give me whatever you’re going to give me.” Then I wouldn’t have had any genetic features from my bone marrow biopsy or I just wouldn’t have had the information that I needed.

We have already been through a really aggressive cancer experience with my brother-in-law who had AML six years prior… My brother-in-law had waited way too long to get [a] transplant and he passed within a year.

I’m so happy that he made that comment because I went from a physician who was treating five cases of myeloma to 500 cases at the academic center and that doctor had come from the University of Arkansas Medical Sciences (UAMS). They have this tandem transplant protocol. At the time, the experts were fighting over single versus tandem transplants.

I said, “I’m young. I watched my brother-in-law die. I’m healthy, except for the myeloma so just go ahead.”

I had a high-risk feature so he said, “You have one shot at initial cure and a certain percent of the patients can get cured — functionally cured — right off the bat. But if you wait and go through several lines of therapy, that’s not that much of an option anymore so just try that and see.”

I went from a physician who was treating five cases of myeloma to 500 cases at the academic center.

Breaking the news to my family

My kids were three to 15. My youngest had just turned three. His birthday was while I was getting my port installed. I said, “Okay, someone [needs to] take over that birthday party because it’s not happening with me.”

We had to decide immediately where we were going to live. Do we come back here and I get treatment? Do we bring all the kids back? Am I going to be immunocompromised? Is it going to be a problem having six kids coming home with germs [and] going into two transplants? Yeah, kind of, yes.

We told our kids in the backyard. We were calm about it because we had already been through this. We just made an internal commitment [that] we’re going to do this differently. My husband did not want to be in the same situation where the doctor says, “We’re out of options. What do you want to do?”

What happened with David was very tragic and very emotional. There are eight siblings in Paul’s family and we would spend time around the clock with him. It was just a very traumatic experience so we just thought, Okay, we don’t want to have that happen again so we’re going to do everything we can to make that a different experience.

Of course, the diseases are different. I don’t know [if] we could have done anything else for David at that time because there wasn’t that much out there for AML, but we were committed to doing things differently.

What happened with David was very tragic and very emotional… We don’t want to have that happen again so we’re going to do everything we can to make that a different experience.

We had two weeks to decide what we [were] going to do. I ended up staying at my sister-in-law’s house. We prepared her house for David with [an air] filter and UV lights… a really clean house and room. One of my really good girlfriends was my caregiver.

Paul went home with the kids. In Mexico, it’s very easy to find household help so he got the help that he needed because he was still starting a business. I got the support and the rest that I needed. I could have been around six kids asking about their homework and all that going through two transplants. It all worked out.

It was good that the kids knew where I was. I was gone for six months, but they were okay because they had the attention that they needed and the support. My sister-in-law moved down there and was like [a] sub-mom and took care of them.

It all worked out. They weren’t traumatized thinking,“No, mom’s right behind that door but you can’t go talk to her or give her a hug or whatever because she’s immunocompromised.” So that ended up being a good thing.

Going to a cancer specialist with more experience

We see that all the time in the patients that we serve. Patients may think, “My oncologist is so nice and I like them.” The data shows differently. The data shows that you might live two to five years longer if you see a specialist. The University of North Carolina has data on that and so [does] the Mayo Clinic.

Myeloma is a very nuanced disease and with a lot of progress over the last many years. I think there’s been more progress in myeloma than probably any other cancer. So you look at how fast things are moving, how nuanced it is, and how myeloma is not a single disease. There are different genetic features.

Every patient has kind of a different type of myeloma and different types of myeloma inside the same patient. Somebody treating 25 different cancers, as talented as they are and as hardworking as they are, there’s no way. They’re wonderful people. But am I going to put [myself under their] care? I might go get treated.

Myeloma is a very nuanced disease and with a lot of progress over the last many years.

A lot of patients do this. They’ll go see an academic specialist for some of their care definition and then they’ll take that protocol back and say, “Okay, now I want to get treated closer to home.” And that makes sense.

The data did show that if you are treated at the academic center, you do live longer because you’re getting watched. You’re seeing early signs of relapse and they’re running the right tests. That’s the number one thing I always tell patients. If you could do one thing, find yourself a specialist. That’s job number one.

Treatment

I did a year of Velcade-thalidomide-dex. It was a triple combination. I ended up flying from Mexico to MD Anderson every week or every 10 days. I don’t even know how I did that but that was exhausting.

I was gone another half a year because you [get] Velcade on [days] 1 and 4 and then you get a 10-day break and then day 1 and 4 so I’d have to stay in Houston for four days.

Then I did a clinical trial that had dexamethasone, which was an insane idea now looking back at it that I would have done steroids for another year voluntarily. But I did do that. 

I didn’t do any other maintenance. Maintenance wasn’t a thing in myeloma at the time. I was happy. The idea was [to] let your body recover and your counts come back up. Hit it hard.

In my opinion, with myeloma, you’re going to get therapy regardless of whether you get it hard upfront or you get it over time. You’re still getting it so I might as well get it hard and then have a treatment break.

That’s how we advance research. If we want a cure for these diseases, we have to step up and participate.

Participating in clinical trials

I think I participated in three clinical trials as part of my transplant process to donate samples and tissue. The first time I got a bone marrow biopsy, they said, “Do you want to donate samples?” I wasn’t sedated or anything [so] I got out of there crying and screaming. That was a terrible idea. You got to sedate me next time. That’s not going to work for me.

That’s how we advance research. If we want a cure for these diseases, we have to step up and participate. In cancer, there [is] no placebo. You’re never not going to get treatment. That’s unethical. The doctors would never do that.

They’re looking ahead and saying, “What else can we do to make the treatment better?” They’re looking for creative ways. Maybe another year of dex is not the right answer. But we have so many open clinical trials in myeloma now.

Back when David was diagnosed, six months in, they said he was out of options. He was in the ICU. He had incredibly high blood pressure and his heart was just racing. They said, “He’s ready to die and you’re being mean to keep him alive.”

Paul, my husband, had done some research showing that he had CD33 protein [in] his AML cells. He said, “Could you give him Mylotarg?” Because that was a target. [It] wasn’t approved for his indication and he couldn’t, at that point, join a clinical trial. We got permission to use it for compassionate use and he lived another six months. Within two days, he was out of the ICU, breathing fine, [and] on a stationary bike.

That type of participation in research is necessary if we’re going to advance the field. Now, if we don’t care about a cure or whatever, then we shouldn’t think about it. But lots more kids with cancer join clinical trials because their parents are willing to take them anywhere. As adults, we think, “Is it convenient?” You’ve got a job to think about, family issues, or whatever so it’s a little more challenging sometimes.

You should ask about clinical trials at every stage. There are great myeloma clinical trials for newly diagnosed patients right now, especially if you’re high-risk. We already know what your outcomes are going to be so why not try the extra stuff and try to get a longer remission? Sometimes people think about it as this last resort, but it’s not. If you wait too long, you just don’t qualify. [If] you’re too sick, you can’t join.

Jenny A.

Taking care of your mental health amidst a cancer diagnosis

I handle the anxiety part of it by getting involved. We just had this hypothesis that David’s experience, when he used the Mylotarg, wasn’t shared with anybody at Huntsman [or] any of his peers, and that drug took another 14 years to get approved as an indication for his type of disease. Why? Why is it taking this long? And so we took that idea.

If we can aggregate patient data [and] put it together, if patients were willing to do that, we could come to a lot faster conclusions. In the meantime, I realized I don’t have a relationship with the clinicians and with any of their patients so let me just do things that I see a need for.

I want to find a myeloma specialist. Why can’t I find one online? Why isn’t there some kind of directory that helps me find that? It’s so basic. It doesn’t make sense.

I wanted to understand and read news about myeloma treatment, but it was all scientific and I didn’t understand it. Can we rewrite it and simplify it a little for the patient community [so] they still understand what the progress is and how to describe it?

I just decided, “We’re going to create a foundation. We’re going to fill some of these gaps.” There were very nice existing and supportive foundations in the myeloma space that were very well established, but there were certain things I felt like I needed as a patient that weren’t being done.

I wanted to join a clinical trial and I was panicked. “I’m going to relapse fast. This is not going to be a long remission.” I don’t know why I felt like that, but I just did. I felt this clock ticking all the time, like I’ve got to get moving. We got to do something.

I looked some trials up. I called eight facilities. I got a call back from two. ClinicalTrials.gov is a total mess. This is not easy for patients. Why is it this hard? So we started the podcast series [where we’re] interviewing investigators. It was this nice blend because they wanted to share their research, they wanted to get patients into their trials, and patients wanted to know what was going on.

Focusing on something else other than cancer

I built a website. I didn’t know how to do anything, but I just decided I was going to do it anyway. I have nothing to lose so I might as well. I felt very unqualified. If you listen to the first couple of radio shows, [you’ll notice] I’m super nervous, I’m not smooth at all, and I don’t listen very well to the doctor’s answers. But I’ve done 158 shows now and it’s fun.

I enjoy talking to them and saying, “Why would a patient want to join this trial? What are you trying to accomplish? Who can join? Where’s it open?” And just understand the science behind it because some of the new stuff [that] comes out always has a number associated with it and you don’t even know what it does or is, especially if it’s a new class of drug.

We started adding programs. I started meeting these investigators because I was doing that show once a week. I was meeting a lot of investigators and started attending conferences. Then we started a roundtable series putting together live meetings and met more that way, trying to bring those educational programs to patients.

When you get diagnosed with something, you can do one of three things.

You can say, “I’m a victim. I have myeloma. Poor me.” You can swear at it. You can do all that. It doesn’t help so I’m not sure why people do that, but they can be really angry about it.

You can also be defined by it. “I’m a cancer patient. This is part of my new identity.” I don’t think that has to be the case.

But the third thing is you can look at it as a new opportunity. Paul had a colleague in Mexico and he said, “I was telling him my wife has cancer.” [His colleague] said, “Well, congratulations.” And he said, “Hmm. Tell me about that because that’s not the normal response, you know.”

And [his colleague] said, “My son died in a regular adenoid surgery. We ended up donating his organs. We started a foundation. We’ve done 80 organ donations now. You are going to see the world differently so it’s an opportunity for you. You have an opportunity to serve in ways you couldn’t before.”

After he said that, I understood what he was saying and why. I look back on it and think, “I’ve been able to grow so many skills and talents. I’ve been able to serve so many people. I’ve been able to build a team and do things I never, ever would have done, ever.”

Having myeloma is not fun and it’s still a mental game. I still get nervous when I go get my labs run and all that. But I’ve met the most wonderful people doing this.

I’ve taught my kids. They’ve watched growing up. Some of them work at the foundation or have worked at the foundation so I’ve been able to do this together as a family and it’s been an amazing opportunity for the whole family.

Dealing with “scanxiety”

My friend Cindy says, “Every time you go get your labs run, it’s like this red card or green card. Which card are you going to get? Is your myeloma coming back? Do you need to think about it? Do you need to do something about it?”

I’ve been really blessed because my myeloma has not behaved in a high-risk fashion so I’ve had the luxury of time to work on this. Not all patients have that opportunity. Had I been on treatment constantly, I would not have been able to physically or emotionally do what I’ve been able to do so I feel really blessed.

Relapse

In 2016 or so, my myeloma started coming back. It was coming back really, really slowly. It was weird because I was stressed out for the first five years, thinking it could come back any day. But it just helped to be serving people and not worrying about my own situation or my own condition. I didn’t really hyper-obsess about it because I was busy with my family and busy working at [HealthTree].

When do you start treatment again after relapse?

In myeloma, an official relapse is a monoclonal protein of 0.5. We were watching that number and it was 0.13. I first saw it on an MRD test that I did so it was very sensitive and started seeing some early indication. I had this faint band that wasn’t measurable for a really long time, for almost two years, so you couldn’t even quantify it.

But then the numbers started growing and once it got to 0.5, I started having conversations with multiple experts. “What would you do? How would you do it? What’s your strategy?”

It took a couple of years and then once it hit 1, my doctor said “Now it is time to do something.” I got multiple opinions and I had a lot of knowledge about what my options were so I was able to weigh those in my mind.

How long did it take to reach that point?

Probably five years. It was not a clinical relapse. It was a biochemical relapse so just in my numbers. No new lesions. They kept watching for that, of course. Do we have new lesions? We have renal issues. We have high calcium. We have all those CRAB criteria. And no, it wasn’t that.

What was going through your head?

I had done my homework. I know most of the myeloma doctors who are amazing and fabulous. I ended up having consults with Dr. Orlowski, who was at MD Anderson. He did all my maintenance therapy for me so, of course, I consulted with him. I consulted with Huntsman docs — one was leaving and one was coming so I consulted with both of them. I used our own tools to find a CAR T clinical trial that I could join. I flew to the Hutch and talked to Dr. Green about joining a CAR T trial. I knew what I needed to do so I did it.

I got five different answers — five different experts, five different answers. One said, “You could repeat your transplant because you did so well.” One said, “You could do a triple combination, combinations of different combinations, and that would get you out another five years. Then maybe CAR T is a little more developed or a little more curative because now it’s not. Maybe CAR T is too early.” Some said CAR T’s just fine.

I really had to make my own decision. I love the science behind it and I’ve become kind of a geek about it, but I’m also very faith-based and so I combined those two to make a final decision about what I should do. And I determined that I wanted to do CAR T therapy.

I spent several hours looking through all the trials and totally miraculously, there was one open at Huntsman. I talked to my doctor and said, “This is what I want to do.” He said, “Because you know so much, [the] hardest thing will be decision paralysis because you know all the options.”

When I went to him and said this is what I want to do, he said, “Okay, let’s try to get you into the trial.” And that was not a very easy process so kudos to Dr. Sborov for making that happen for me. He was amazing and it was just totally amazing.

I really had to make my own decision. I love the science behind it… but I’m also very faith-based and so I combined those two to make a final decision.

What helped you decide on a course of treatment?

I wanted to see data around it. What are the outcomes, first of all? Then I want to understand [the] side effects. What are the trade-offs that I’m making? Some of it is dosing and frequency. How often am I going to be in the clinic?

Then I have to put all that together with my personal goals. What can I do? Am I working? Am I not working? Do I have a caregiver? Do I not have a caregiver? Do I mind traveling to a facility if I’m going to join a clinical trial? Can my insurance pay for whatever I want? Is it paid as part of the clinical trial, if I get in? Will I even qualify?

You have to weigh all of that. I spent so much time really understanding the science because I was doing the podcast, writing the articles, and so it took me a long time.

Then right about the time I was relapsing, we decided to create a tool called HealthTree University, which is a whole disease curriculum, because I didn’t want a normal patient to have to do what I did. I just wanted them to be able to binge-watch their way through. We have almost 700 video lessons taught by 150 myeloma experts on any topic because then, you could get through that course fast.

You need to be able to ask relevant, intelligent questions at your appointment. Some people just stick their heads in the sand and don’t want to talk about it, but somebody in the family needs to do that work. You don’t live long if you stick your head in the sand and never ask questions.

My friend Pat, who passed from myeloma, said “It’s not fair that you have to do this. You’re feeling crappy and you have this stress that you’re trying to deal with this.” But you have to. You just have to.

To get really good care, you have to advocate for yourself. You have to find the doctor that’s right for you [and] knows a lot about your disease. Those are just things you have to do.

Different myeloma treatment options

It was a triple combination. I could have done dara-Rev-dex (daratumumab + Revlimid + dexamethasone). I could have done dara-pom-dex (daratumumab + pomalidomide + dexamethasone). I could have done RVd (Revlimid + Velcade  + dexametha­sone). I hadn’t had that because I did VeTd (Velcade + thalidomide + dexametha­sone) [the] first time.

When I first started relapsing, daratumumab wasn’t an option. I hadn’t used it before. I could do all the monoclonal antibodies. I could have chosen a bispecific antibody clinical trial but, at the time, they weren’t as far along as the CAR T trials.

One doctor said, “You could just take Revlimid. I’ve had patients on Revlimid for a long time and they’ve done just fine on it. Your disease seems to be pretty indolent or slow growing so one thing might just do it even though that’s kind of not normal in myeloma treatment to do one therapy.”

I just had a lot of options and all the logic made sense. Each one of those options made logical sense. I just had to go back.

When I did the transplants, I wanted a one-and-done therapy so I was looking more for [a] one-and-done kind of therapy. I felt like I’d done my homework on the different CAR Ts and I was happy with the trial. I felt good about it so I said, “Okay, let’s go for it.”

Joining a CAR T clinical trial

I had to be accepted into the trial so they had to have slots open. There was this very unique window of slots open when I was looking for that option. There was a slot open if I qualified and I had to have an M protein over 1 and I did — it had grown over 1 by that point.

But when we sent the sample off to the provider, they said, “According to our numbers, you’re not even at a 1 yet. You’re just barely under. You’ve got to wait a couple of months to see if your myeloma will continue to grow.” It did so we sent off a sample again.

Then I had to be randomized. There was an arm that was a triple combination and an arm that was the CAR T so it was not guaranteed and that’s fine. You never know which arm you’re going to get into. Sometimes they’re blinded so you don’t even know what treatment you’ve got. But with CAR T, that’s pretty obvious which treatment you’re going to get. It’s all computer-generated so my doctor doesn’t even know until they get word from the sponsor if it was available or not.

I went to collect cells and they said, “This will be the easiest part. We never had problems with this part of collecting the T cells.” Then I had an anaphylactic reaction to the gas and the machine. Somehow I’m like 1% of patients or something who had that.

They jabbed me full of epinephrine, dex, and everything and sent the sample off. Of course, the sample didn’t grow because it had so many steroids in it. We had to recollect and that sample worked fine. That process took from March until November.

It was a good thing I didn’t have fast-growing myeloma. I went through the protocol and there was a preconditioning regimen that I did. It was in the big deal category. It wasn’t like my transplants; that was very, very hard physically. This was not as hard. I tried to stay fit before, during, and after just so I could make sure that I was doing what I wanted to do or still could do.

What made CAR T easier to handle?

I had them put a bike in my room and I rode my bike every day. I worked the whole time. There [were] only a couple of days where I felt fatigued from the preconditioning chemo rather than the CAR T.

How long did you have to be in the hospital?

Fourteen days. The staff was amazing. My husband watched me. There was a period of time I couldn’t drive but I was still being pretty normal.

Was paperwork noteworthy?

Yeah, but big deal. You’re so lucky to be even getting into a clinical trial that is providing early access to therapy.

You’re going to have to do more testing. I’ve had to go in for more testing before and after. It was a very thorough process to get pre-tested. They had to test your lung function and all your other functions [to] make sure you’re okay and can qualify for the trial.

There was a lot of that, but the trade-off is I got early access to a therapy that’s very effective and afterward, I was MRD negative and still am. It’s been a year. I’m able to work full time and I still manage my family. And so it was great therapy.

Reflections post-CAR T

It was completely amazing because I was willing to travel, but then I would have had to be somewhere for about a month away from everything. With all that I’m trying to do, that would have been hard with my family, with the foundation, and everything. It was great that I could do it the way that I could.

I’m glad I did it. I think it was a great option for me. It fits my personal goals of that one-and-done therapy.

We’re just watching it. I make sure I get the right testing when I go in to watch for early indications.

I have a feeling of what I want to do after at the point of relapse. I’m still planning ahead, but I’m happy with what I did. I hope I get five-plus years out of this therapy. You never know. Some of the averages is about 20 to 24 months with this one.

Side effects from CAR T

Robert Kyle from the Mayo Clinic — he’s considered the father of multiple myeloma — says there are no drugs that have no side effects. You’re basically picking: which side effect am I okay with?

I knew the data. I had read the data. I went in very informed and felt this was the right thing for me.

What are your thoughts about a cure for myeloma?

When I was diagnosed, no one would say that word. If you said that word and you were a myeloma specialist, you were kind of mocked. No one’s getting cured [of] this disease. This is going to maybe become a chronic disease.

I think there is a certain subpopulation of patients that could potentially be cured. The UAMS data [showed] that functionally cured was in the 21-23% range.

Bart Barlogie really deserves a lot of credit for pushing that protocol forward to do induction therapy, transplant or two transplants, consolidation therapy, and maintenance. That wasn’t really done before. You just got your transplant and then it was nothing.

To see the progress in myeloma, to see how many companies have jumped into the space, to see the different drug classes and the sheer number of clinical trials that are being run, it’s really, truly amazing what’s happening in myeloma.

I’m super hopeful. I think CAR T or bispecifics will probably be part of that curative step. They need to use it in earlier lines of therapy. Transplant will always be good and effective. But I think it’s getting closer.

What should a patient ask during the initial doctor’s appointment?

Ask how many cases of myeloma that person is seeing to identify if they’re myeloma specialists or not. If they’re not seeing over 50 cases a year, you should look for another doctor at least to consult on your case and when you’re making decisions.

You can always go to your local center and get your local infusion. You don’t want to have to drive three hours to go get an infusion because you’re going to the academic center. Anybody can give you daratumumab, Velcade, or whatever. But if you’re making decisions, your life is worth it. Getting a couple opinions is not a bad thing.

We just actually created a document that outlines those questions and put [it] on the website. We have a whole list. What kind of myeloma do I have? Do I have standard risk? Do I have high risk? What labs should I be watching? What are my treatment options? Why are you deciding on this versus this?

We built some of those in our HealthTree Cure Hub tool. We can pull the records that a patient has and help them through that decision-making process. Rafael Fonseca [and I] had had this hypothesis ever since David was diagnosed. We came back to that in about 2018 and said, “Okay, let’s build this,” so we built HealthTree Cure Hub.

We did a 50-city tour [and] met with 850 myeloma patients to say, “Would you use a tool like this? Would you be willing to share your myeloma story with other people if it were to advance research?” Now that has 11,000 patients who participate in that data portal and they get benefits. They get to see treatment options personalized for them.

As a newly diagnosed patient, I can say, “Okay, I have this kind of myeloma. What are my treatment options?” We pull the myeloma experts to say, “How would you treat this newly diagnosed standard-risk patient or this newly diagnosed high-risk patient or somebody who relapsed after Revlimid maintenance? What do you do next? How do you sequence?”

They get back to us on how they would do it and then we build that logic into that tool so patients can do a printout of this option. This triple combo versus this triple combo, transplant, CAR T, bispecifics, or whatever it is. Then they can have this conversation with their doctor, and ask, “What are you going to do about this?”

In myeloma, you have tons of decision-making. You have a lot of choices. Great problem to have but it requires a little more on you to ask a lot of questions so just ask the questions.

There are no dumb questions. Ask your nurse. Sometimes the facilities don’t have enough time. You get this 15, 20-minute appointment and these doctors are trying to do incredible things in that time because they are asked to do too much, in my opinion.

But that’s why we have patient navigators that can help. You can say, “I need somebody to explain my FISH test results because I don’t get it.” Maybe my nurse didn’t have time for me. We’re trying to fill those gaps to help support clinics and patients.

What has been the biggest impact on you?

I have a lot of gratitude for the experts that are working on this. I have a lot of gratitude for the companies that are trying to develop products that can help you live longer. I have gratitude for my myeloma peers and it’s helped me to get to know others. I have my patient advocate friends who have been doing this for 20-plus years. I just met the nicest people ever in doing this.

It’s been a really rewarding experience. I love helping patients. If somebody calls me and says, “I don’t know what to do,” my favorite part [is] to walk somebody through. “Okay, here’s what you need to ask, and here’s what you need to do. Go do that then come back and talk to me.”

Because I was only one person, we created a coach program because I couldn’t do that all the time. I had to replicate myself.

Leaning on faith

It’s all intertwined [with] my faith. I had to get to the point where I was okay [with] dying. I was okay with whatever was going to happen with me and with God’s will essentially. [It] was not easy to come to that point. It took a lot of years to get to that point.

I think sometimes, you’re doing things out of anger or urgency. Then at some point, you have to just stop doing it out of fear and just say, “Okay. It’s okay whichever way it goes.” But that’s because I have this long, more eternal perspective of my life.

I existed before. I’m here now and I’m thinking I’m going to be fine later so that helps me, too, because it just gives me a different perspective. I don’t panic as much with that knowledge.

How I look at all adversity… First, what do I do? Then what am I supposed to learn?

Dealing with adversity

I think I went through that probably [around 2019]. When you get diagnosed, you first have to say, “What am I going to do?” The first thing you need to consider is what you’re going to do. Then, later on, you can go, “Okay, what am I supposed to learn from this experience?”

That’s how I look at all adversity, whether it’s financial, health, work, or whatever it is. First, what do I do? Then what am I supposed to learn?

Sometimes this adversity [lasts] a long time. It requires a lot of patience and doesn’t resolve quickly. You think, “Why is this dragging on so long? This is terrible adversity. Why do I have to go through this?”

You never want to be told when you’re in the middle of it, “You’re going to learn something great from this.” You may think, “That’s so annoying. Don’t tell me that.” But it’s true. You do look back on it and think, “Wow, I learned a lot from that.” 

The last thing I asked myself [was], “Who can I serve through this experience?” Because that’s really where the joy and the meaning come.

We’ve had coaches who’ve come to us and said, “I was suicidal with my diagnosis and having serious mental health problems. I started coaching patients and it just changed my life. It just completely changed because my focus isn’t internal anymore. It’s external.”

Having cancer, you’re able to let go of a lot of the unimportant. None of that matters in life. It’s my family, my faith, and who I’m serving [that] give me the most meaning.


Jenny A. feature profile
Thank you for sharing your story, Jenny!

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Multiple Myeloma Stories

Clay

Clay D., Relapsed/Refractory Multiple Myeloma



Symptoms: Persistent kidney issues, nausea

Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
...
Melissa

Melissa V., Multiple Myeloma, Stage 3



Symptoms: Frequent infections

Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
...

Elise D., Refractory Multiple Myeloma



Symptoms: Lower back pain, fractured sacrum

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. feature

Ray H., Multiple Myeloma, Stage 3



Symptoms: Hemorrhoids, low red blood cell count

Treatments: Immunotherapy, chemotherapy, stem cell transplant
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Categories
Acute Lymphoblastic Leukemia (ALL) Cancers Chemotherapy cytarabine Cytoxan (cyclophosphamide) dexamethasone Leukemia methotrexate Pegaspargase prednisone Steroids vincristine

Anna’s Ph- B-Cell Acute Lymphoblastic Leukemia Story

Anna’s Ph- B-Cell Acute Lymphoblastic Leukemia Story

Anna T. feature profile

Anna was diagnosed with B-cell acute lymphoblastic leukemia (ALL), Philadelphia chromosome-negative, five months after she moved to the US to marry her husband.

She shares her journey of going from the ER to being airlifted in a matter of hours to a different city for treatment, navigating the US healthcare system, getting a serious infection that resulted in an electrolyte crash, and coming close to a second cancer diagnosis.

  • Name: Anna T.
  • Diagnosis:
    • B-Cell Acute Lymphoblastic Leukemia (ALL)
    • Ph- (Philadelphia chromosome-negative)
  • Symptoms:
    • Heavy period for a few hours
    • Fatigue
    • Fever
    • Sweating
    • Mysterious bruises on legs
  • Treatment:
    • ECOG 10403
Anna T. and husband Joe
Anna T. timeline
Anna T. timeline

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


I was diagnosed five days before Christmas so I spent Christmas and New Year’s Eve in [the] hospital.

Anna T. with family in Hungary

Pre-diagnosis

Introduction

I’m originally from Hungary. I moved to the US [in July 2021] to marry my husband. Five months after moving here, I was diagnosed with leukemia. Since then, it’s [been] a crazy, crazy year.

I’m a communications specialist. I work for a nonprofit in Durango, southwest Colorado. [I’ve worked] in public relations and marketing my whole life. I’m a former university lecturer.

I really like outdoor activities — hiking, biking, mountain biking, running, walking outside, winter sports rafting — everything which is active and outdoors, I am a fan.

Anna T. and husband Joe at Christmas

I was diagnosed five days before Christmas so I spent Christmas and New Year’s Eve in [the] hospital. The first time, it was 37 days inpatient.

I’m taking it day by day. Sometimes I’m just in survival mode [and] sometimes I feel better, but this is how it looks right now.

Initial symptoms

I was always healthy and had a healthy lifestyle. I was very active. I was very aware of what [I was] eating. I tried to sleep a lot. 

I got COVID [in] Halloween [2021] and one and a half [weeks] later [during] a long weekend in Chicago is [when] my symptoms started.

I worked a lot in Chicago. On the third day, I started to feel very fatigued. [While] I was in a museum, I felt that I might have a fever and I had to sit for a little [while]. Just out of the blue, I was very under the weather.

Then I had my period and for a few hours, it was very heavy, which was not normal but I considered, We just [flew] to Chicago from Colorado. We woke up early. We walked a lot so probably that’s why. Then we went back to Durango.

Anna T. group pumpkin truck

That week, I felt feverish every night. I was out of breath after washing my hair [that] I had to sit down. I had night sweats, which was also very new to me.

I went to [the] urgent care finally because I had mysterious bruises all over my legs. I [had] a massage before that and I was thinking, Oh, maybe it was a little strong. All these symptoms for a healthy person, you just feel something is not okay so I went to the urgent care. It was a Sunday afternoon. I spent three hours. They took a full blood panel and told me that someone will call me from the hospital.

[That] same day [at] 9 p.m., the head of the emergency unit in the Durango hospital called me that my blood numbers looked really [bad] and I should be in the hospital. I should pack a bag because I would stay. My husband should come with me and it shouldn’t take longer than an hour.

I obviously freaked out. I didn’t really know what was happening.

Anna T. in mask and hoodie

I rushed into the ER. Ten minutes after my arrival, they told me that 80% [chance] it’s leukemia. I was like, “Okay, but what’s the other 20?” I still was optimistic. “I don’t care about that 80. What’s the 20?” And the doctor just said, “No, it’s leukemia.”

I was airlifted to Denver at 3 a.m.

My white blood cells [were] very, very high. My platelets [were] very, very low. I was anemic and actually, I needed blood products to be able to be admitted because I wasn’t stable at all.

They told me [that] if I didn’t go to urgent care, [in] one [or] two weeks, I may not be here anymore. It’s crazy.

[At] 9 p.m., the head of the emergency unit in the Durango hospital called me… I should pack a bag… My husband should come with me and it shouldn’t take longer than an hour… I was airlifted to Denver at 3 a.m.

Anna T. and husband Joe hugging snowy mountains

Diagnosis

Reaction to the diagnosis

Immediately, I was crying. I told my husband I don’t want to die. I told him if he doesn’t want to do this with me, then he doesn’t have to. And he said I’m stupid and I should stop. I was in shock, honestly.

It was really hard because first of all, I was only in the country for five months. We just got married. Everything was new. The language was new. All these medical terms and everything is just new. It’s not easy even in your own language, but in another, it’s like, “Sorry, what’s that? What’s that? What’s that?” So I was in shock, freaked out, and scared. But you cannot really do anything.

I felt lucky they caught it and they were so prepared. After I was airlifted, I met with my oncologist [for] the first time at 5:30 a.m., half an hour after I arrived [at] the Denver hospital. He’s amazing. I [felt at] ease and relieved that, “Okay, I’m in good hands. I have a good doctor and he will cure me.”

Reacting to a cancer diagnosis: How cancer patients feel in the moment »

Anna T. and husband Joe in beanie and cap kiss

At that point, we didn’t know the exact diagnosis. We just know that it’s leukemia but didn’t know the type. After I got my exact [diagnosis], besides asking, “Why me? Why now? What did I do wrong?” stuff like that, I felt that we have to accept and we have to fight.

I never considered a death sentence. I was like, “Okay, it’s one of the biggest challenges in my life. If you paused everything, my life and our life will be delayed. But I’m going to do this and I will fight.” I think that was key that I accepted it and I tried to be positive.

When I heard leukemia, I also saw that it’s one of the worst blood cancers. They [said] that 10 or 15 years ago, it was kind of the worst and there was no cure. But treatments and research are improving day by day so it’s not the situation now.

Anna T.
Initial appointment with oncologist

They found the oncologist for me in Durango. My doctor goes to Durango to care [for] patients there so they [found] him for me.

When I arrived at the hospital, we did a bone marrow biopsy. Then the next day, I had the exact diagnosis. My doctor said I can have a second opinion if I would like to, but I don’t really have time for that. So [there] wasn’t really an option to choose another doctor or to think about that.

I read really good reviews about him and all of it was true because he’s amazing and I feel very lucky. Colorado Blood Cancer Institute and the Presbyterian/St. Luke’s Medical Center are amazing so I really feel lucky. Everyone says that if you have to be somewhere with blood cancer, then this is the place you want to be.

I was so worried that I didn’t have time to think about that so it wasn’t like for a lot of people. They got the diagnosis and then, “Okay, let’s find a doctor. Let’s find an institute.” It was given but I feel lucky because it’s awesome.

Anna T. in hospital

Treatment

Outlining the treatment plan: ECOG 10403

First, he [drew] the treatment plan. He told me what will happen. He told [me] it’s a three-year-long treatment. I freaked out because I thought [it will be] half a year and I can forget about that. So when he [said] it will be three years, I was like, “Sorry, what?” That was really crazy to hear.

Then he told me I will do [an] induction phase where [the goal] is to get in remission because I had 95 or 98% cancer cells in my bone marrow, which is pretty high.

He told me what kind of chemos I will get, what kind of medications, and all the side effects, which he had to list. I was very scared about staying at the hospital for 30 days. It became 37 days because your numbers have to increase a little before they let you out.

The treatment [included] an induction phase, consolidation, and maintenance. The consolidation phase has three different courses or cycles.

I was very scared about the side effects. I was like, “Oh my God, I have to get in remission.” But besides staying in a hospital, it was one of the easiest parts, I would say.

Anna T. in hospital
Induction phase

It’s a pediatric treatment, which they used first for children [and] young adults also get it. I get five different kinds of chemotherapy via infusion. I got steroids every day, which was probably the worst part considering the side effects because it just makes you totally immunocompromised. It makes you totally fatigued. I lost all of my muscles so I was weak.

I had lumbar punctures and IT (intrathecal) chemos, which means they put chemotherapy into your spinal fluid. I had one bone marrow biopsy [on] the first day and another one on the 28th day. Sometimes, blood transfusions and other blood products [were] needed. I have anti-viral tablets and antibiotics every day.

Consolidation phase

I came home. I had two weeks off — one and a half [to] two weeks off — and then I went back to the hospital for a week for the consolidation part.

Consolidation is separated [into] three different parts and almost every part, I had to go to the clinic for a couple of days or a week to see how [I would] react to the different chemos. I got infusion chemos, oral chemos, lumbar punctures, blood transfusions as needed, and sometimes steroids.

I got [an] infection once during the summer… I couldn’t eat and drink anything for ten days so I lost 15 or 20 pounds in 10 days.

Anna T. seated in chair

After two weeks, I went back to the hospital for a week. I [got] my port inserted, which I still have, and I got everything through that. I got a new type of chemo so they wanted to check how I [reacted].

The second part, which we [also] separated [into] three different parts, lasted until August. I considered this the hardest [part]. I had pretty bad days and weeks.

I got [an] infection once during the summer, which was severe diarrhea and I got dehydrated so I spent eight days in the hospital and I thought, I’m gonna die. I had [an] electrolyte crash and that was very, very scary. I kind of saw myself already in the ICU, in a coma, and I couldn’t eat and drink anything for ten days so I lost 15 or 20 pounds in 10 days. It was one of the craziest [things]. Then I got a little time to get better after the infection.

Is frequent diarrhea a sign of cancer? »

Anna T. reclined
Possibility of a second cancer

We then [had] a panic situation because I had a bone marrow biopsy and my doctor called and told me I developed another type of leukemia. I have 50% blasts in my bone marrow and it seems I developed AML — acute myeloblastic leukemia. I had to go to the hospital again for a month and [I was told I] will need a transplant. [That] was a Thursday and they scheduled the hospital stay for Monday.

I went to the hospital. I had another bone marrow biopsy and we were waiting for the results to start the chemo the next day. The doctor came into my room to tell me that the bone marrow biopsy looks better and [we’ll] put a hold on starting chemo for another day. The next day, they discharged me because they said another result came back and it seems better.

All in all, we waited [for] two [to] four weeks [and] checked how my bone marrow [was] doing on its own. I had lots of blood tests.

I didn’t develop another type of leukemia, which was amazing. When they are in a growing phase, these blasts can seem like cancer and they probably [caught] them [at] the wrong time. But I don’t wish [those] one and a half months [for] anyone because it was crazy.

Find out how cancer patients and survivors cope with scanxiety »

I felt that I’m not strong enough to do this again… I felt so tired mentally and physically.

Anna T. and husband Joe hugging
Reaction to a possible second cancer

My first question was, “I did the last eight months for nothing?” My doctor said, “No, you would be dead if you wouldn’t [have] so it was for something.”

I remember I just cried. My husband [held] one hand and the doctor [held the] other and I was just crying and sobbing. I just couldn’t understand how I got this or how unlucky I [was].

I was also shocked [at] these cancer cells. They said they rotated to this other type, which is not targeted by the chemo I got, because they felt attacked. I was surprised that, “Oh, it’s a thing and it can happen. Wow.” I was totally shocked.

That day, my husband and I were just crying. I just couldn’t believe that it can happen again. I started to think about the transplant. I started to think about another month in the hospital, which I really didn’t want. I was shocked, to be honest, and I felt I’m not strong enough to do this again. Even if somewhere deep inside I knew [I would have to], I cannot give up, it’s not how it works. But I felt so tired mentally and physically [and] I just didn’t know how I [would] be able to do that.

Anna T. and husband Joe in hospital

It was amazing but also so many days and weeks waiting and the uncertainty was also like, “I just want to know something. Even if it’s bad news, I just need to know something.” But [thankfully], it wasn’t so.

We waited when I was discharged. I had weekly blood tests and we saw how my bone marrow was doing on its own. Then I had a repeat bone marrow biopsy months later. It was another two [to] three weeks waiting for those results. I got the preliminary results quite fast, in maybe a week, but we were still waiting for detailed results [to find out] if there is a mutation or stuff like that. But everything seems good.

Anna T. dining out
Maintenance phase

The maintenance phase seems to be the phase when people go back [to] work full-time. They kind of have a normal life. If everything goes well, you don’t have to stay in the hospital. But it takes one and a half [to] two years so it’s not a short thing.

It was one infusion of chemo monthly, oral chemos every day, lumbar punctures, [and] steroids once a month for five days so I wouldn’t say it’s easy. So far, the last three weeks [were] pretty good. I could exercise, I could walk, I could work — I could almost function as a normal person. But my numbers are dropping and my liver numbers are elevating, which is the result of one of the chemos so hopefully, it will stay on this level. Then I can do the next one and a half [to] two years [on] this level.

Anna T. and husband Joe in black hoodies
Side effects from chemotherapy

It could be vomiting, nausea, fatigue. You could have rashes. You could have fevers. My doctor told me, I [could] get any kind [of] infection. I can have that so-called moon face [when] your face gets a little moon-ish. You have a bigger belly but everything will be so skinny so it’s kind of weird. I didn’t have that.

I was thinking about my marriage, too. Oh my God, how will I look? And also hair loss, which was a big thing for me, too, which I think I handled better than I thought. All of these [symptoms,] it’s just so scary.

It wasn’t that bad [because] I didn’t get [an] infection. I didn’t vomit even once. I didn’t have moon face. I didn’t get rashes.

I became fatigued. There were days when even [taking] a shower was a challenge. I had some headaches and nausea from lumbar punctures because the first two, they did it with a bigger needle. Since then, they changed it to a small one and I [didn’t] have any problems. But the first two, [I got] pretty intense headaches and nausea after.

Managing nausea and vomiting from chemotherapy »

I had a good appetite. I do believe that food and drinking water is very important, too, to have [fewer] side effects and to be strong. I felt pretty lucky. I didn’t have mouth sores, which they said might happen. I could eat. I was hungry. Tastes didn’t change that [badly].

I could work almost every day so I felt kind of okay. There was one day, January 1st in the morning, when I passed out — probably blood sugar. It was scary for my husband and the nurses [but] not for me because I [didn’t] know about that. 

I did really [well] in the first month and I achieved remission, which was amazing. I felt pretty good. The nurses, all the doctors, the hospital itself, and the food [was] amazing so I didn’t [feel] bad there, even if it sounds weird.

Learn more about the common and not-so-common side effects of cancer treatment »

Anna T. shaving hair
Hair loss

I had long hair. I asked five different doctors on every visit, “Will I lose it or not?” Then I discussed with my husband that I would just cut it shorter so I wouldn’t wait until it’s falling and have hair on my pillow when I wake up and everywhere. So I asked everyone to be sure that I will lose it. And when they said I will, [so] I cut it short. 

When it started falling [out], that’s when we shaved it. When I looked into the mirror, that was the first time I started crying. My husband shaved it then he showed me the mirror and I started crying but that was it. I started to wear beanies when I was out of the hospital room [or] on the floor working.

Two days later, I looked into the mirror and I was like, “Okay, it’s a sign of the fight,” and I will be not proud of that, but I will just accept that. Since at that point, I was totally fine. 

I thought I will freak out when I cut it but that didn’t happen so it was great.

How to cope with losing your hair during chemotherapy »

Anna T. in bed
Working during treatment

I stopped working for three months, but after, I went back part-time but remote. Now I’m going back full-time, [fully remote]. That’s pretty important because even if I feel okay and my numbers are kind of good, there is no guarantee that I won’t be immunocompromised through this whole journey. And at that point, I cannot be with people so that’s important.

Can I work during chemo or radiation? »

Importance of a strong support system

[My husband], he’s amazing. He’s with me 24/7. He has different types [of] remote jobs so he finishes one then continues [with another] to be able to be with me all the time.

He helped me shower. After I [got] out of the hospital, he made me breakfast. He did my laundry. He was there with me every day. He sometimes stayed nights in the hospital. He came every morning [and] sometimes got my food. He was working from there just to be with me. He was there for every important appointment. He was just amazing.

In the hospital, you have to talk to the doctors and nurses about every symptom, every bathroom visit, every period — sometimes in detail. It was really weird to talk about this kind of stuff in front of my husband. Even if we are best friends, even if our relationship is amazing and we can talk about everything, after five months [of] being married, bathroom visits and period details [are] not the kind of stuff you want to talk about. But I can say we became stronger and it wasn’t even a [big] deal. It was big for me at first but not for him.

Three things to remember when your spouse or partner is diagnosed with cancer »

Even if our relationship is amazing and we can talk about everything, after five months [of] being married, bathroom visits and period details [are] not the kind of stuff you want to talk about.

Anna T. and husband Joe back of pickup truck

He’s just amazing. I don’t know how he does it. I was never in a caregiver role and I think it’s one of the hardest. Patients have to survive. They have all the pain, the treatments, and everything they have to deal with, but caregivers feel helpless seeing their loved ones. They also have to work, do stuff around the house, and handle insurance, which was also a big deal for me. When I [got] to the hospital, my insurance didn’t cover this doctor and this hospital so we had to change it and it wasn’t easy.

Caregivers have to be everything. Their life doesn’t stop. He’s amazing and I feel pretty lucky.

Cancer treatment is not like in the movies. And I think lots of people like, “Oh, yeah, so you vomiting 24/7 and you are just totally down and you cannot do anything.” And I’m not saying it’s not happening or it cannot happen and every person is different, but it’s not always the case.

He had to go through all of it. I’m not saying it was easy because it’s probably harder for him than me, to be honest, to see your loved ones getting through this and you feel helpless and useless.

Caregivers have to be everything. Their life doesn’t stop. He’s amazing and I feel pretty lucky.

Anna T. stepping towards recovery
Understanding medicalese as a non-native English speaker

I feel lucky because my husband was with me all the time. [In] the beginning, when the doctors came in and they [talked], sometimes I had to discuss it with my husband after. “Okay, so am I right? Am I correct? This is what they said, right?”

But I think if they have problems or concerns, then maybe they can record the whole discussion with the doctors if they are okay with that. Then you can just listen back and that can probably help. Recording can be helpful.

Anna T. working out

Plans after cancer treatment

[Some days], I don’t feel that good. [Some days], I’m almost normal-ish. I’m a little more tired than before my diagnosis. Sometimes I need a nap during the day. But I was in the gym three times a week. Sometimes I walk six miles a day. I could do everything around the house. I cannot clean [but] I did my own laundry [and] my own food, which I couldn’t do previously.

I only worked part-time but [I’m going] back full-time. I work remotely so that’s good.

Anna T. park outdoors
Anna T. back of pickup truck

I don’t think I can really plan or really want to, to be honest, because I feel you cannot really. I just realized that anything can happen at any point so I feel, let’s just do everything day by day.

Obviously, I would be really happy if everything would stay like this, that my numbers are kind of okay. I’m not immunocompromised so I’m able to go to a restaurant and have lunch or I can go to a gym when there is more than one person. That would be amazing. But I don’t think I want to plan.

The only good thing [is that] probably from the beginning of next year, I won’t have weekly blood checks, just monthly. If I have to go to the clinic only once a month, that is amazing. That’s a huge difference.

Words of advice

There will be probably three things [that] I would suggest to anyone.

First of all, do not stress about anything. If it’s not health-related, there is always a solution. You can always change. I did the same. I was stressing about the deadline [at] work or having a call with my boss. Just little things. “It’s raining again and I wanted [to] run and I cannot now.” These are not the things. This is nothing so it’s not worth it.

Second, enjoy life as much as possible and surround yourself with people you like. And say no because this will be fine. Be selfish and do things [that are] good for you.

Third, which is probably the most important, [is] to go to yearly checkups. If you feel something is odd, that something doesn’t feel good, just immediately go because it can actually save your life. I think that’s one of the most important things.

I didn’t need to go to the doctor that often so I cannot say that it was a frequent thing. But if I felt something is probably not okay, then I went. Like I said, I was really active and I know my body so I always tried to listen to that. And I think that’s also important: get to know your body and know when it says something.

Anna T. seated

Anna T. feature profile
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Acute Lymphoblastic Leukemia Stories


Evan L., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo infusions, chemo pills, spinal taps, cranial radiation
Casey

Casey H., Acute Lymphoblastic Leukemia (ALL)




1st symptoms:
Lump on throat, extreme fatigue, shortness of breath, bruising easily
Treatment:
Chemo, immunotherapy, radiation, stem cell transplant

Veronica B., Acute Lymphoblastic Leukemia (ALL)




1st symptoms: Mild shortness of breath and palpitations
Treatment: Chemo, targeted therapy, double cord transplant
Christine

Christine M., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Enlarged lymph nodes, pain in abdomen, nausea
Treatment: Chemotherapy, bone marrow transplant

Ciara T., Acute Lymphoblastic Leukemia (ALL)



Cancer details: Treatment without blood tranfusions
1st symptoms: Fatigue, shortness of breath, night sweats, petechiae
Treatment: Chemotherapy

Categories
Chemotherapy Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Patient Stories R-EPOCH

Paige’s Stage 4 Diffuse Large B-Cell Lymphoma Story

Paige’s Stage 4 Diffuse Large B-Cell Lymphoma Story

Paige C.

Paige was diagnosed with stage 4 Diffuse Large B-Cell Lymphoma at 28 years old. After initially dismissing her symptoms, her insistence on getting a CT scan put her on a path she never thought she’d be on.

She shares the importance of self-advocacy, a good support system, having a positive attitude, and how sometimes, you just need to take things a day at a time.

  • Name: Paige C.
  • Diagnosis:
    • Diffuse Large B-Cell Lymphoma
    • Non-Hodgkin’s Lymphoma
  • Staging: 4
  • Symptoms:
    • Weight loss
    • Extreme fatigue
    • Swollen lymph nodes in the neck
  • Treatment:
    • R-EPOCH chemotherapy

This is your journey and however you want to choose to have it, you’re able to do it. At the end of the day, it’s your journey and you’re going to have to figure it out.

Paige C. orange trees
Paige C. timeline

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


Pre-diagnosis

Introduction

I live in California. I like to go to the beach, tan, go out with my friends, [and] try new restaurants. I love a good glass of rosé, espresso martinis, [and] just living the normal 20-year-old lifestyle while trying to balance having cancer and everything.

I’m a very positive person. I’m enthusiastic. I’m social. I try and look at the bright side of things. I think everything happens for a reason. Any challenge you have, just face it one step in front of the other. That’s how you’re going to get through life.

Paige C. dining out
Paige C. in the hospital
Initial symptoms

I was really, really nauseous. I [noticed] I’ve lost a lot of weight. I was like, “Great! This is awesome!” But obviously, it’s not awesome. I didn’t really put two and two together.

I was always tired [that] I stopped working out. I used to work out all the time and I was just too tired to work out. [I] started losing weight and didn’t really think anything of it.

Then I always have chest pain. I’m like, “Okay, just anxiety.”

Every symptom could be your day-to-day: bruising, night sweating (very common if you live in California), losing weight, being tired, [and] having chest pain, which I thought was just anxiety.

Then, all of a sudden, I was unbelievably nauseous for about a month. It would creep up to the point that I even started wearing seasick bracelets. There’s something going on that I had absolutely no clue [about]. I thought it was a stomach ulcer or a bacteria.

I went to the emergency room one day after work and they’re like, “You have to get an ultrasound.” I was like, “I need a CT scan. I don’t think an ultrasound is going to tell me anything.” They were like, “An ultrasound’s fine. You can’t even get a CT scan until you do an ultrasound.”

I end up getting a CT scan and they see a mass in my chest and a little below. The emergency room calls and tells me, “You have cancer until proven otherwise.” Basically, cancer until proven guilty, which is just wild to me that that’s how you tell somebody.

Read about real-life cancer survivors’ experiences and their own reactions »

Paige C. hospital gown

I was unbelievably nauseous for about a month. It would creep up to the point that I even started wearing seasick bracelets. There’s something going on…

Paige C. sisters
Sisters
Deciding to get checked

I was so nauseous to the point that I was not able to work. I would lay in bed. On the weekends, I would normally go out [but] I would come [home] to hang out with my parents and just sleep.

I was in New York and we were visiting my little sister who was doing an internship. I slept for two days, exhausted. I was drinking champagne to try something to make me feel better and nothing would work. I would just power through it but I was so incredibly sick. I even called the doctor, “Can you send me Zofran in New York?”

After that, I was like, “Something is wrong.” I had every symptom of morning sickness and I was like, “Am I pregnant?” But I took pregnancy tests and [the were] all negative.

It was just wild because all that doesn’t add up to cancer, which is just insane to me.

Diagnosis

Reaction to the diagnosis

The lady [from the] emergency room called me and was like, “I’m sorry to be the bearer of bad news, but here’s an oncology number.” I called the number she gave me, bawling my eyes out, and left a message. They called me back in 10 minutes and it was like, “Oh my god. It’s okay. Are you okay?” It was this really nice lady. She is an onboarding person. I was just hysterically crying. I was by myself in my apartment [when I] got the phone call.

I made an appointment. Then I called my parents hysterically crying. It was insane. I did not process it well. I just cried. Then I think I drove home. I don’t really remember. It’s all kind of a blur.

I got home from New York Sunday. Tuesday, I went to the emergency room and then Wednesday, I had a CT scan. Wednesday at 5:30, they called me and told me. Then Thursday, I was in Newport. I had an appointment that Monday with oncology and my parents were going to be there. They’re both very involved [and] supportive, which I’m so grateful for.

Find out what you can do and how you can support a loved one who’s been diagnosed with cancer »

Paige C. day of diagnosis
The day I found out I had cancer
Paige C. hospital admission

On Friday, I was so nauseous [that] I couldn’t get out of bed. I was so, so sick. I called the oncologist, “Can I come in today? I don’t know what to do.” He was like, “If you go to the emergency room, I’ll admit you.”

Never been to a hospital in my life so I call my mom. One of my friends actually drove me, which I’m so grateful for. I had to call my friend and be like, “Hi, I have cancer. Can you drive me to the emergency room?” That’s an interesting phone call that your friend gets. She ended up driving to the emergency room. My mom met me there [with] overnight bags.

I go to the hospital, go to the emergency room, [and] the oncologist met me before I was admitted. She did a biopsy, a CT scan, and [an] echo gram. We did fast-forward the entire process, which, looking back, I’m so grateful for. If I [wasn’t] in the hospital, I probably wouldn’t have gotten treatment until [later].

I was at Hoag and USC Keck. I could not be more grateful for all the doctors. I hate the hospital but I couldn’t imagine it being at another hospital.

No time for a second opinion

The hardest part is trusting the doctors. I didn’t have time to get a second opinion. He was like, “You can get a second opinion, but you have no time.” I had to start treatment. I think I went in Tuesday and I start treatment that Monday so I had no time to process [everything].

It’s just overwhelming. Trusting the process and realizing that non-Hodgkin’s lymphoma is what they call “curable” so just trusting that this is the best treatment.

I’m doing six rounds of chemo. That’s insane. I didn’t really trust the entire process until I got my PET scan and the results turned out really, really good so that’s what made me realize, Okay, the doctor knows what he’s doing. Everyone has told me, “Oh my god, that’s your doctor? You have the best doctor. Wow, that’s amazing.” Just really having to put faith in someone else’s hands. Not having control is really hard.

The hardest part is trusting the doctors. I didn’t have time to get a second opinion.

Paige C. teary
Paige C. chemotherapy begins
Chemotherapy begins

Treatment

R-EPOCH chemotherapy

The treatment’s called R-EPOCH. It’s six rounds and five days in the hospital so it’s 96 hours of chemo. I was so overwhelmed when he told me [about] the treatment. It was a lot.

I get in the hospital and they have to do a COVID test, a MRSA test, all these crazy tests. They have to access my port. My port is really hard to access because I didn’t want it noticeable so that’s kind of a positive part, I guess. Then they start the 96 hours of chemo.

They start it Monday and then Friday, I end up being out at 4:00 or 5:00, whatever time they’re able to start the chemo that Monday. It’s at their mercy. They call me up whenever the hospital has room and tell me [to] pack a bag.

My week one [of] chemo was a nightmare. I don’t remember any of it. I’m an Advil gal and that’s about it. I was pumped with so many drugs — Zofran, Xanax, Ativan — and just the emotional toll of all of it so I do not remember most of my first treatment at all.

It was scary being in a hospital for five days. It’s actually terrifying. I [ended] up getting really good headphones because I’ll wake up in the [middle of the] night and hear screaming. It’s like, “Nurse, get off me” or “Stop putting an IV in me.” I’m terrified of the hospital and I think it’s going to give me PTSD [for] the rest of my life. They try to be really supportive. The nurses are amazing, but it’s not their fault.

The nurses have been nothing but great. They come [into] my room and hang out in there. The night nurses come in and do funny dancing so I have a bunch of videos of me dancing. They just try and do anything to put a smile on your face.

Looking back, after my PET scan, it was a lot bigger than I ever thought it was. I didn’t realize how huge the tumor was and I was just feeling extremely overwhelmed. I just had to keep going forward and put one foot in front of the other.

Paige C. chemotherapy week 1
Paige C. holding hair
Paige C. wigs
Hair loss from chemotherapy

Two weeks after your first treatment, you end up losing your hair. I haven’t lost all of my hair and I decided not to shave my head. I know a lot of people do and more power to them. I just couldn’t do it. But it’s really hard to see clumps of your hair falling out. That is a whole ’nother ball game in itself.

And then being on hormone pills when you already don’t feel like yourself… You’re already emotional. I don’t know how I handled it to this day.

I cried every day. It was miserable. I started journaling a lot, writing down all of my feelings, and everything. I think that has really, really helped me. Just journaling every emotion — the good, the bad, the ugly.

How can you cope with losing your hair during chemotherapy? »

Paige C. group in wigs
Paige C. hair in bun
Paige C. blonde wig in car
Status

It shrunk [by] about 80% and they think right now it’s just dead tissue, which is amazing. My tumor originally was active 10 and now it’s 2.9. They want it active at 2.

I only have one more until my last treatment. The PET scan was looking great so I am excited to be in remission. I’m just stoked about it.

Paige C. power of Paige shirt
Plans after treatment

I’m going to take [a month] for myself. It’s going to be like a Paige month, what I want to do.

I’m going to get a personal trainer, get back into working out, go on walks, try new restaurants, and travel. I’m going to Switzerland for about two weeks.

I am also starting a podcast with one of my girlfriends. It’s called “Our Life Changes.” Life can change. It doesn’t matter if you have cancer, if you’re Navy SEALs, if you got hit by a car, or won the lottery. Life always changes. Things always happen.

I think I’m just going to look at different opportunities. I am in marketing so I will probably go back to looking for a 9-to-5 job. I don’t know what I want to do exactly. I want to do something meaningful.

I’m going to try [to] get back out there and date. It’s going to be a wild ride. I was talking to my therapist and she was like, “Do you want to date that person? You’re a friggin’ rock star. You kicked cancer’s ass. You did amazing. Do they get to spend time with you?” Reverse psychology and not like, “Is he going to text me back?” I want to spend time with him. Are they worthy of my time? Your friends — do they get to hang out with me? Just reverse psychology all of that instead of thinking the way a lot of people think.

Living life as a young adult with cancer

I just had to do what made me feel right and push myself forward. I still wanted to be normal. I still wanted to be able to go out with my friends. I still wanted to be able to work. I still want to be able to have all the energy traveling, which obviously had to get put on [hold].

Your twenties is hard enough. Dealing with dating, friends, life, job, [and] finances, then having cancer on top of it is just insane. I think just really figuring out who I am as a person and what my goals are, what I want in life, and what I want to achieve.

I was single [at] the time. I was dating a bit. Then when I got the news, I put everything on pause and really wanted to focus on myself and who I am, what I expect in a person, what I value, [and] what I want. Right now, the ball’s in my court. What do I see in a person? What do I want? Do I want someone motivated? Do I want someone with ambition? Who do I want to spend my time with?

I don’t know if it’s hit me yet. I believe everything does happen for a reason. I think maybe I’m able to handle it. I have no clue why it happened to me. I’m not looking for someone to be mad at or, “Why is it me and not you over in the corner?” That’s not the person I am. Yeah, it sucks. Do I wish this upon anyone? No, but it is what it is.

Paige C. 29th birthday
Fertility preservation through egg freezing

I want to have kids in the future and when you’re going through chemo, there’s a chance you can’t have kids. I was fortunate enough to be able to freeze my eggs, which I am so grateful for. I couldn’t even imagine not being able to.

But that whole process alone was insane. I was on hormone pills for a month. I had to do treatment first then I had to go back and start the fertility processes and that took a whole entire month. Most people are only on them for about a week. Luckily, I got a bunch of eggs out of it.

Learn about fertility options before and after cancer treatment »

Importance of a good support system

I tried to turn to my family and friends, but I shut everyone out because it was such a dark spot in my life that [I’d] never been in before. I don’t do well on hormones in general and then losing your hair is another thing.

I turned to Instagram and started reaching out to a couple [of] girls who posted about it. I asked for any tips and tricks. There [are] probably 20 different messages I [sent]. I ended up meeting a couple [of] girls through Instagram and now we’re all friends. We’re all going through the same process at the same time.

I did try and do support groups — that wasn’t really my thing. But then if you have lymphoma, there’s a support group I joined and I actually am speaking at it. It’s called Lymphoma Ladies — I’m helping run that one. That’s a really positive group. When you put all the support groups together, I was so overwhelmed and I would just be hysterically crying. “Is this going to happen to me? I don’t know what to do. Oh my gosh.” And that’s not the case.

My family has been a huge, huge support. I could never imagine doing it without my family. They are amazing. They’re at the hospital all the time. My friends have been amazing. They’re always at the hospital. No one leaves. Everyone’s there with me all the time. I can reach out to people if I want.

Letting people in

A support group is literally what you need 100%. You just have to accept the fact they don’t know what you’re going through, but you need to let them in. They’re really just trying to be there and they’re really trying to help. And yes, they’re going to say the wrong thing, but you just have to be okay with that.

I think when I got off all the hormone pills because I was not myself. I was like, “I have to go back for my second treatment. I need support around me. I need friends. I need family. Am I going to be the biggest brat in the world and lose everyone that I’ve built a whole life of making?”

I just really had to look at it from trying to be positive again. You’re going to have rough days. You can have the worst day in the world and you’re at rock bottom then maybe the next day could be the best day in the world. You don’t know what the next day [brings].

Paige C. in hospital gown with orange mask
Paige C. on hospital bed
Having a positive mindset

People have asked me, “Paige, how are you so positive?” You have two ways to look at it. You can look at it by being so angry at the world, so negative — and, believe me, I’m negative, angry, a lot of emotions — but you can also look at it as you have to do the treatment no matter what. You have to do this. You can look at it glass half full and just try and get help. Basically, I can be negative, I can be a total brat, or I can be positive, try and move forward, move on with my life, and learn something from it. And that’s the way I looked at it instead of being angry and shutting the world out.

I’ve always tried to be happy and live in a bubble [and] brush things off. “Oh, no, it’s fine. Whatever. It doesn’t matter.” Don’t touch my bubble, don’t pop my bubble. And then cancer popped my bubble. I was like, “Oh my god. Wait. My bubble’s gone. What do I do?” I just looked at it [as] having to just be happy, positive, and grateful for things.

At the same time, I can still be sad, I can still be upset, I can still be mad, but what’s going to make me get through this treatment? It’s going to be having people around that love you, support you, [and] care about you. Even the nurses are some of my friends now. They’re my age and they’re awesome. I’m just trying to look at the bright side of things.

Social media for support

I’m really active on social media. I might have posted a bit early before but I think I was in such shock. I didn’t really realize what I was up against. I was like, “Oh. It’s cancer. It’s stage 4. It’s fine. No big deal.” I have always posted my life and I was like, “Okay, I’m going to share this. I’m going to make a post [about] being a self-advocate and just trying to reach others.”

The feedback I’ve gotten has been amazing so I just keep posting my whole journey. I know a lot of my friends, family, my parents’ friends, and everyone has been super concerned. The amount of support I’ve had is insane. People want to know, “Is Paige okay? What’s going on? What’s happening?” I think that’s the whole reason why I just keep posting. Once I did my first post, I was like, “Okay, well, I just got to keep posting about this entire journey.”

Words of advice

Your twenties are [when] you’re finding out who you are and what you want to become. And if you get this crazy, scary diagnosis, you don’t have to have all the answers today. Keep chugging along and eventually, the roller coasters and the back flips will stop, everything will be a smooth ride, and you’re going to have different bumps in the road. 

Paige C. outdoors
Paige C. Power of Paige bracelets

You’re not alone in this. Reach out to people who want to help you. I want young people to reach out because I feel bad. I don’t want people to go through this alone because I wish that I didn’t have to go through this alone. I went in so blindsided and that’s not the way you want to go in.

[In] the beginning, you’re going to get a million messages and it’s the most amazing. It’s the best thing [knowing] you have so much support.

Paige C. lights

When they bring you gifts, really appreciate that. They are taking the time to do that. Take them up on [what they’re offering to do]. “Can I bring you dinner?” “Can I drive you somewhere?” “Can I bring groceries?” “Yeah, you can bring me groceries.” “Yeah, I can’t get out of bed today.” “Yeah, I would love to watch a Netflix movie with you on Zoom.” There [are] so many things people want to do. Let them help you.

If you know something’s wrong with your body, you have to say something. I could have been nauseous for months and months and just not have said something. You have to be a self-advocate.

Get your blood work taken. See your doctor once a year. Go to your dentist. Go to all your appointments because you could never know what could happen to you. I see a wellness doctor. I get my blood work taken all the time and I wish it would have shown up in my blood work. I could have had it be stage one cancer and that would have been amazing. I wouldn’t have had to be in the hospital and I would have done treatment sooner. But since I didn’t have any of these signs and thought it was anxiety, that bruising was normal and night sweating, I end up being stage 4.

Listen to your doctors. Try and make friends if you can. Have a support system, accept people, and let people in. This is your journey and however you want to choose to have it, you’re able to do it. At the end of the day, it’s your journey and you’re going to have to figure it out. It is what it is.

Paige C. cake no mo chemo
No’ Mo’ Chemo

Paige C.
Thank you for sharing your story, Paige!

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Diffuse Large B-Cell Lymphoma Stories


Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: No noticeable initial symptoms; persistent, significant back pain
Treatments:Surgery (removal of spinal tumor) chemotherapy (R-CHOP)
Don S. feature profile

Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)
Michael E. feature profile

Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
Lena V. feature profile

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
Cindy M. feature profile

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)

Categories
Medical Experts

Why are My Prescriptions So Expensive? | Alex Oshmyanksy + Dr. Vincent Rajkumar

Why are My Prescriptions So Expensive?

Cost Plus Drugs Founder & Mayo Clinic Doctor Explain

Alex Oshmyanksy feature

Prescription drug prices in the United States are significantly higher than in other nations. In fact, 1,200 prescription drug prices rose faster than the rate of inflation between 2021 and 2022.

In this conversation, Alex Oshmyansky, founder and CEO of the Mark Cuban Cost Plus Drug Company, and Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, talk about the exorbitant costs of medicines, the impact it has on patients and families, and why the current system needs to change.

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



The more you delve into it, you find it’s not simple and that’s why no one is able to fix it… You just don’t even know where to start if you want to pick something.

Dr. Vincent Rajkumar

Introduction

Dr. Vincent Rajkumar, Mayo Clinic: I work at the Mayo Clinic. I’m a hematologist oncologist and my disease specialty is multiple myeloma. I do research, education, and practice as far as myeloma is concerned.

I also have an interest in drug pricing, which started because I run a lot of clinical trials and work with new drugs. I do studies on racial disparities so I’m aware of the impact [of] cost of medicines and health care [on] various communities.

I also edit the Blood Cancer Journal along with my colleague, Dr. Tefferi.

When it comes to drug prices, there’s [an] impact on the patients, who are the people actually affected by the disease, as well as the cost of taking care of the disease. [I] hear not only from patients that I myself treat but also from patients across the country.

I wrote my first paper on [the] cost of prescription drugs in 2012 and it was focused on cancer — the high price of cancer drugs and what we can do about it. It was mainly because I worked on Thalidomide, which was the drug that was banned in the 1950s because it caused teratogenicity.

I’m probably the only physician in the world who actually used Thalidomide to treat leprosy, which was approved for, and subsequently started using it for myeloma. I was in India using Thalidomide for leprosy and it was given to us basically free of cost in huge buckets that you could use to treat patients.

Then I come to the US and I find Thalidomide costs $10,000 a month. This drug should cost $10!

I see the price of Lenalidomide launched at around $4,500 and then going up every year to $5,000, $6,000, $8,000, $10,000… and you’re going, What’s happening? That’s when I said I really need to understand the root cause of these problems.

The more you delve into it, you find it’s not simple and that’s why no one is able to fix it. It starts with monopolistic pricing then the middlemen and the whole infrastructure that you just don’t even know where to start if you want to pick something.

Lenalidomide

Alex Oshmyanksy, Mark Cuban Cost Plus Drug Company: I’m a board-certified diagnostic radiologist. I have a PhD in applied mathematics. When I was a kid, I was going to be a string theorist, so a high-energy particle physicist. I was being fast-tracked into that. With all the wisdom of a teenager, I decided that wasn’t going to be impactful enough in the real world so [I] made a hard shift [in] my last year of college and decided to major in biochemistry instead. [I] graduated at 18 and went on to medical school and completed an MD-PhD program.

While I was at Hopkins, I was working with a pulmonologist on a research project. One day, he came in infuriated because two of his patients died over the same weekend. They both needed a drug called Bosentan, which treats primary pulmonary artery hypertension — hypertension specifically of the big blood vessel that comes out of the heart and goes to the lungs — and they both needed it urgently.

At the time, the medication cost $10,000 for a month’s supply, despite the fact that it was long off-patent [and] was a generic product at that point. They were meant to apply to a patient assistance program set up as a nonprofit by the manufacturer who made the product, got caught in the red tape, and both of them tragically died [on] the same weekend.

Martin Shkreli

I had been angry about these topics for some time and you think that’d be enough to set me off. But what really became the straw that broke the camel’s back was Martin Shkreli, the so-called pharma bro.

In 2015, he was a social media villain-of-the-day type [of] guy. He was a hedge fund manager who took over a pharmaceutical company and increased the price of a drug called Daraprim — generic Pyrimethamine, primarily used by indigent patients or immunocompromised — by over 10,000%, hundreds of dollars a tablet.

I got very mad and some of my friends, who are also doctors, [also] did. We decided very naively, “Let’s set up a nonprofit pharmaceutical company that will make drugs [and] sell them at cost.” While working as a doctor, [I] went out for the better part of three to four years trying to raise funding for the nonprofit and did not succeed. Failed spectacularly — raised $0 beyond what I put in myself.

Eventually, [I] got talked into converting it to a for-profit public benefit corporation — [a] for-profit company but with a registered public mission with the state. [I] sent Mark Cuban a cold email on a whim and surprise, surprise! He reads all his emails. And the rest, as they say, is history.

The path is incredibly complicated. It’s very convoluted and that’s by design.

Alex Oshmyansky

The path from pharma to pharmacy

Stephanie, The Patient Story: There is this path that goes from the pharmaceutical companies — with the research and development of these drugs — to the pharmacies where you and I go to pick up the drugs and the prescriptions. Could you summarize what happens? What is in this path here?

Alex, Cost Plus Drugs: The path is incredibly complicated. It’s very convoluted and that’s by design. There’s a layer of financial engineering that takes place between you and actually purchasing the product.

Pharmacy benefit managers are firms [that] are outsourced to by insurance companies to decide which products are covered by insurance. They manage all the payments. Back in the 1980s, before computers were as widespread, they were initially there to literally process payments. They would get paid to do the paperwork when a prescription insurance claim was submitted.

pharma to pharmacy

What they realized over time was, Since we’re paying for the drugs anyway, we can collectively bargain for the drugs. They turned into negotiators for drug prices, which sounds good.

Eventually, what they realized was, The way we’re getting paid is we take a percentage of the savings. The best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Imagine you wanted to buy a [car] but you hate negotiating at the car lot. It’s miserable. Everybody hates that. Somebody comes up to you and [says], “Hey, I will do the negotiating for you and in exchange, I get 10% or 20%,” or whatever the amount of money they save you. You’re like, “You know what? That’s worth it to me. I hate negotiating.”

The negotiator comes back and says, “Hey, amazing news. I got you a great deal. I got you 90% off of your [car].” “That’s amazing. How did you do that?” “I’m really, really good at negotiating.” Come to find out the sticker price on the [car] was $1,000,000 and you’re paying $100,000 for your [car] plus the fee from the negotiator, which is another $90,000. All of a sudden, you’re paying $200,000 for your [car]. That sounds like a crazy, over-the-top example, but it really happens.

What they (pharmacy benefit managers) realized was… the best way to make the most money was for the drugs to be as high a price as possible to start out with before they started negotiating down.

Alex Oshmyansky

The example drug that I use all the time — because it’s the most extreme edge case — is a product we offer called Imatinib, which is a chemotherapy product. It’s a tyrosine kinase inhibitor for chronic myelogenous leukemia and you need to be on it for many, many years. The list price, the so-called average wholesale price, is $10,000 for a month’s supply.

Now, if you get it through your insurance and you have a high deductible plan, it’ll be “adjudicated” at between $2,000 and $3,200 as the negotiated discount price plus the margin for the PBM. Meanwhile, if you get it from the Mark Cuban Cost Plus Drug Company, it’s $39 for a month’s supply. That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer. It’s the intermediaries in the pharmaceutical supply chain taking a percentage of the rebate. It’s just one of the many, many scams [that] has evolved over the past 30 years to take advantage of the sick and vulnerable and it’s absolutely morally repugnant.

That delta between $3,200 and $39 is being taken by somebody and it’s actually not the pharmaceutical manufacturer.

Alex Oshmyansky

Drug price disparity

Dr. Rajkumar, Mayo Clinic: You don’t see that kind of spread anywhere else with any other product. It’s happening because there are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Unless the patients are aware, you could be vulnerable to high prices, whether it’s insulin, Gleevec, a new cancer medicine, [or] an old medicine. What we find is where the prescription goes, how the prescription is written, [and] what you’re aware of as far as the coupons and rebates you get can really affect how much you pay for that medicine. And it’s not a small dollar amount.

There are many people marking the price up so that what is $400 when it leaves pharma could be marked up to $4,000 by the time it reaches the patient.

Dr. Vincent Rajkumar

Stephanie, The Patient Story: We know about pharma companies and the R&D that happens there. There’s a price set. Can you describe the path?

Alex, Cost Plus Drugs: Basically, the wholesalers do take a markup. On specific products, it can be a very, very high markup. Our initial product, Albendazole, an antiparasitic drug, is available from us for [about] $30 for two pills and a complete course of treatment tends to be two pills. But, as far as we could tell, about $70 a pill from the pharmaceutical wholesalers if you purchase it directly from them.

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles once you purchase from a wholesaler. That sounds like a lot and it is. It’s perhaps a bit too much but at least they serve a function. They send the products around the country.

The best way I can describe it is it’s basically a pile of spaghetti with lines going [in] every direction from all the various different actors — PSAOs (Pharmacy Services Administrative Organizations), GPOs (Group Purchasing Organizations), the insurance companies, the pharmacy benefit managers, patients — about the way money winds up flowing in the pharmaceutical industry.

The way I think about it is this is a feature, not a bug. The system is so artificially complicated that it permits basically theft in the service of it.

There is a lot of inflation that happens at the wholesaler level. As a general rule of thumb, the price of a drug approximately doubles.

Alex Oshmyansky

Understanding drug pricing

Stephanie, The Patient Story: Let’s just give an example for a $10 pill. Let’s say that’s what the pharmaceutical company has set the price on. Can you give an example of “roughly” what that could look like by the time it gets to us?

Alex, Cost Plus Drugs: On average, it’ll be about $20 from the wholesaler. The pharmacy will probably add on let’s say $10 just to keep the numbers round. It’s usually maybe more $6 to $8, but let’s say at the pharmacy, it’s about $30. Then the price manipulation starts to happen and that’ll be the actual price at the end of the day.

There’ll be a number of artificial prices put on it depending on if it’s a brand name drug [or] a generic drug. Let’s say it’s a generic drug for the sake of argument. Generally, a generic drug is priced at a pharmacy benefit manager at about an 85% discount. They will say that the price of the drug is, in this case, $200 so that’ll be the price you see if you try to pay cash at a pharmacy without using a special program of some kind. It’ll be artificially inflated to $200 so they can negotiate it back down to $30 and then charge a little bit more for the service of negotiating.

pharma to PBM to insurance

The manufacturer will have to pay a rebate to the PBM, who in turn takes a cut and forwards part of the rebate to the insurance company that’s paying the ultimate bill. But the insurance company has to pay the whole thing first. [Plus] the wholesaler, somewhere in the mix of all of this, holds the money for six months and makes money off of the interest. It’s a whole morass.

Dr. Rajkumar, Mayo Clinic: Unfortunately, there’s no rhyme or reason for these prices. Patients can go and play around on some websites, like GoodRx.com. [If] you enter the name of a drug and order a 30-day supply, you would find a coupon for [a] 90% discount. If you order [a] 60-day supply or a 90-day supply, you may get a [bigger] discount.

For example, Lenalidomide, which is Revlimid. Medicare spends more money on Lenalidomide than just about every other drug. The drug costs the same whether it’s a 5 mg tablet, 10 mg tablet, 15 mg, or 25. [If] you take two 5 mg tablets, [you’ll] be paying double the amount — $36,000 instead of $18,000. I’m giving an extreme example but [for] many drugs, you have to really look. Taking the drug twice a day just because you want to break it down is not going to be the same price. You pay double.

Stephanie, The Patient Story: How can there be such a disparity going from point A, which is the same, but in a hundred different locations? It’s just all over the map.

Dr. Rajkumar, Mayo Clinic: Yeah, and it’s hard to regulate. There is no transparency. If you try to say let’s not have rebates, then the people in the middle could just convert rebates into fees. This is how much I charge for me to buy the drug from someone and give it to you. They can add five different types of fees in between so that the price of the drug gets marked up.

I think government and regulators have to take a close look at this. The Federal Trade Commission [has] to really look into who’s making profits, how, what is competitive, what is anti-competitive — all of that has to be looked into.

Meanwhile, patients, as well as physicians, can be aware of the system. Be aware that it’s not just simply getting a prescription and getting it filled at the closest pharmacy. Be aware that your copay for insurance might be higher than if you just paid cash for the same drug without going through your insurance company. And that could be substantial.

After I posted my tweet, people were posting, “It cost me $250 with insurance and $10 cash.” Then why have insurance? Unfortunately, even physicians are not aware of all of the disparities. You must be aware of it. Just check. Make sure your physicians check.

I tell my colleagues [to] make sure you ask patients about affordability. Can you afford this medicine? What is your insurance like? How much copay do you have? Just talking to patients and inquiring [about] their situation so that if somebody says, “No, doc, don’t worry. My prescription drugs are fully covered. I have a $10 fixed copay.” Fine, no problem. But if someone says, “I pay 5% of my prescription cost as a coinsurance,” then you better be careful how much that drug is billed, that you’re sending it to the right pharmacy.

Finding the best price for your prescription

Alex, Cost Plus Drugs: As a general rule, the worst prices will be at your big national chain pharmacies. Obviously, I’m biased but generally, for most products, we tend to have the best price or at least close to it.

We are a registered pharmaceutical wholesaler. We buy the products [directly] from the manufacturers at our flat 15% markup on top of it, a $3 dispense fee, and $5 shipping and handling at CostPlusDrugs.com. You can get any of about 1,000 generic products from our site as of today and we’ll be adding on brand-name products in the near future.

Dr. Rajkumar, Mayo Clinic: Many, many people are finding out that just going to Cost Plus Drugs and getting the generic might be much cheaper than paying the coinsurance and that shouldn’t be that way. It just doesn’t make sense.

woman at the pharmacy

Stephanie, The Patient Story: What can people do? What about the people who don’t have their drugs covered yet by Cost Plus? I know you’re working on that. What can they do at home?

Alex, Cost Plus Drugs: There [are] a number of different resources. Always check with the manufacturer’s website. There may be a co-payment assistance card or other cash assistance program. They might not be the most convenient things in the world but, oftentimes, you can get the cash out of pocket. You have to pay down significantly that way.

Discount card programs, like GoodRx or SingleCare, might be an opportunity. They tend to be more generic-focused as opposed to brand-name products. I think those would be the two easiest things if you need a brand-name, on-patent medication.

Generally, the easiest way to know is if it has a really easy name to pronounce, it tends to be a brand-name medicine. Google the name of the medicine, check the manufacturer’s webpage, and see if there’s a program available to help you afford it.

If it’s a generic one, check CostPlusDrugs.com. If we don’t have it, look for a discount card program; maybe there’s a discount available there. You can even ask your pharmacy, “Can I pay cash?” and see. Oftentimes, the discount cards are unnecessary and they’ll just sell you the drug cheaply.

Always check with the manufacturer’s website… Discount card programs might be an opportunity.

Alex Oshmyansky

The road ahead

Stephanie, The Patient Story: That’s amazing advice. Between the brand name and the generic, has it been much harder with one than the other?

Alex, Cost Plus Drugs: The generic companies, it’s been easier to get ahold of those products just because there [are] more of them. There’s more competition and more people looking at ways to get their products across

The brand-name companies [are] not necessarily beholden to the PBMs but it’s a big risk to them to go outside of the PBM structure, which is not great. They’re not thrilled with it because, from their perspective, they do all the R&D, they take all the legal risks, [and] they take all the bad publicity from the public when people complain about high drug costs. They’re like, Why are these companies getting a third of the revenue from our products? It’s insane.

At the same time, the status quo works for them. It’s a bit of a risk going with us but I think in our conversations behind the scenes, they’re willing to take that risk at this point. They’re kind of sick of the status quo as well. We’ll be bringing them on in the near future.

shaking hands

Stephanie, The Patient Story: What is the next big vision of what this landscape will be like for people?

Alex, Cost Plus Drugs: Adding more and more products, brand-name products, on a very tactical level. Beginning to work with insurance companies over the course of the next year — on our terms, of course.

Hoping long-term to change the status quo to something more sustainable based on taking the pharmaceutical marketplace and making it like any other marketplace — where you can see what the prices are and make rational, informed decisions as a patient and as a consumer based on real prices instead of make-believe numbers.

Thankfully, things are changing and they’re changing for the better.

Dr. Vincent Rajkumar

Advice for patients and families

Stephanie, The Patient Story: This was a huge eye-opening conversation. Is there anything else you’d like patients and families to know?

Dr. Rajkumar, Mayo Clinic: I just want patients and families to know, number one, people are taking notice and people are aware. People are becoming aware that this is a problem and have decided we have to change. People like me, Patients for Affordable Drugs, [and] many others are now taking notice that the others in the system are not playing well — pharmacy benefit managers, wholesalers, pharmacies — and we have to advocate for reform in that area.

I am also very happy that people like Mark Cuban have taken it on themselves. When the CEO was talking at Mayo, he said they started with 12 drugs and within a year, they’ve got almost 1,000 drugs at prices that are lower than any pharmacy in the US. Then now, hopefully, they can negotiate with pharmaceutical companies and get insulin and brand-name drugs. We’ll have to wait and see.

I don’t have any inside information, but patients should be aware that, thankfully, things are changing and they’re changing for the better. As long as they are aware that prices can be varied and physicians are aware, then even within the current system, they can find a lot of drugs — including cancer drugs — at affordable pricing.

Hoping long-term to change the status quo to something more sustainable… taking the pharmaceutical marketplace and making it like any other marketplace.

Alex Oshmyansky

Categories
Bladder Cancer Cancers Immunotherapy Patient Stories Surgery

LaSonya’s High-Grade Bladder Cancer Story

LaSonya’s High-Grade Bladder Cancer Story

LaSonya D. feature profile

LaSonya was diagnosed with high-grade bladder cancer. As a nurse practitioner, she used her experience to do her own research so that she knows that she’s getting the best care possible.

She shares the importance of listening to your body and advocating for yourself, seeking the care you want and deserve, and getting all the information you can to make the best decision for yourself.

Thank you to Janssen for its support of our patient story series! The Patient Story retains full editorial control of our content.

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

  • Name: LaSonya D.
  • Diagnosis:
    • High-grade bladder cancer
  • Symptom:
    • Blood in urine
  • Treatment:
    • BCG immunotherapy
    • Cystectomy (bladder removal surgery)

Listen to your body. If you feel like something’s not right, it’s not right.



Pre-diagnosis

Introduction

I am a variety of things. I’m a black woman, but I’m also a mother [and] a wife. I am a professor of nursing. I am a nurse practitioner of both family and women’s health.

When did you start feeling that something wasn’t right?

I’m really in tune with my body. If something is off, I find out what’s going on right away. I don’t waste time trying to figure things out.

I had just recovered from an elective procedure and was getting ready to go back to work. One day, I noticed blood in my urine. It seemed like it was a lot of blood. I saw some blood clots and I was thinking, I know I’m not on my menstrual cycle. What is going on? Maybe it’s something from my surgical procedure. Although it was time for me to go back to work, [my surgery] had been a month prior.

LaSonya D. school of nursing

I called my surgeon and he said, “It doesn’t seem like something related to your surgery, but we’ll go ahead and have you do a urinalysis and see if you have a urinary tract infection.” I did that [and] it came back negative for infection, but positive for blood.

He said, “You need to follow up with your primary doctor.” Fortunately, I used to work for my primary doctor so I know her well. I called her on her cell phone and she said, “Why don’t you go and do a culture? In the meantime, we need to do a CAT scan of your bladder.”

A few days later, I went in for a CAT scan. It came back [showing] I had a mass in my bladder.

Finding that I had a mass in my bladder was devastating news. I was really, really thrown back by it. I was like, ‘Could it be a mistake?’

LaSonya D. HERS
When you found out there was a mass, what was your reaction?

Being a nurse practitioner, I knew what that meant. If one of my patients [had] blood in their urine, I would have done the same exact test that my primary doctor did. It could be a urinary tract infection. It could be kidney stones. Worst-case scenario is bladder cancer.

The way I approach my patients is: Tell me why it’s not bladder cancer, like the worst thing. When somebody has a headache, why isn’t it a brain tumor? I was like, “Why is this not bladder cancer?” I would have done the same thing.

Finding that I had a mass in my bladder was devastating news. How did I get this? No one in my family, on either side, has a history of cancer. How could this be? I don’t even know one black person that has this type of cancer. I was really, really thrown back by it. I was like, “Could it be a mistake? It could be a cyst. It could be this.”

The next step was to see a urologist.

The doctor that I currently work with had a good friend that was the head urologist in [the] healthcare system we both work for. This is in January 2021 so we’re in the midst of COVID — a lot of delays trying to get surgeries and procedures done. She called him up and said, “My nurse practitioner [has] this going on. Could you please see her?” Fortunately, I was able to get an appointment the following week.

I felt so defeated and deflated. I just could not believe that this was happening to me.

Diagnosis

How was it hearing the words come out of his mouth?

I was already prepping myself mentally, but it was still devastating. I was a nervous wreck. I remember having to take off work because my blood pressure [was] through the roof. I felt so defeated and deflated. I just could not believe that this was happening to me. It took me a week or two to get myself together mentally for what was next.

Next, they needed to biopsy, resect it, and see what stage of cancer it was. I started doing a lot of reading. My biggest concern was: Is this muscle invasive? Because if it is, that means that I’m going to have to have my bladder removed, chemo, and all this stuff is going to happen really fast.

My first husband passed away [from] lymphoma. My older two kids are still in [a] deep stage of grief. For them to find out that their mom has cancer was really tough.

Being the glue of the family

My first husband passed away [from] lymphoma. At that time, it was about five years prior. My older two kids are still in [a] deep stage of grief after losing their father at 47 years old. He went downhill in a matter of three years. For them to find out that their mom has cancer was really tough.

My youngest son was away at school. He’s a dancer. He’s at the University of North Carolina School of the Arts High School. We didn’t want to tell him until he came home for summer break. There was no reason to let him know right away other than to get him all upset and worried.

It was rough, thinking about your own morbidity and your potential mortality, especially when you’re thinking about cancer.

LaSonya D. and son

I’m a very, very spiritual person. I’m a Christian and I very much lean on my faith, which is another thing that helped me get through this. But, at the same time, my grandmother used to always say, ‘The Lord helps those who help themselves.’

Seeking help from a therapist

I knew right away that this was going to be very stressful, not just for me but for my family. In order for me to get through this, I was going to need help.

I contacted [a friend from church] and asked if she would take me on as a client and she agreed. Right away, I started meeting with her once a week. Our meetings continued through my first treatment, from February through May. I would meet with her on a regular basis, which was so helpful for me.

A lot of times people think that you have to take on everything yourself. Especially [in] my culture, mental health is very taboo. People take it as a weakness when you need to seek out help mentally. You always hear people say, “Be strong. Suck it up. You can do this. Don’t be weak-minded.” We are human beings. We are not robots and machines. We have feelings. We have difficulty.

Or they’ll say, “Pray about it. Give it to God.” I’m a very, very spiritual person. I’m a Christian and I very much lean on my faith, which is another thing that helped me get through this. But, at the same time, my grandmother used to always say, “The Lord helps those who help themselves.” It’s important for us to help ourselves. Part of that was interacting with a therapist that could help me — someone that I could trust and someone outside of my house, my family, and my life.

It was enough for me to talk to my husband but there were some things that I was going through that I didn’t necessarily want to tell him and burden him with. He had his own burdens of worrying about my mortality or my morbidity. I wanted to be able to freely talk without having to worry about someone else’s feelings about what I was going through and it was very helpful.

I never have been one to put all my trust in another human being so I felt like I needed to do my own research and have my own questions ready so that I know that I’m getting the best care possible.

Figuring out the next steps

The first thing I did was look for a reputable bladder cancer organization. You can find anything on the Internet — some of it is true, some of it is false. You can find people that will sell you snake oil and a bucket of sand. At the same time, you can find medically-sound information.

Because I am a scholar and also a clinician, the first thing I did was pull research articles and guidelines of practice because I wanted to know what to expect. I wanted to know if whoever I was going to see [was] following the correct guidelines to take care of me or not. I never have been one to put all my trust in another human being so I felt like I needed to do my own research and have my own questions ready so that I know that I’m getting the best care possible.

The experience I had with urologists made it even clearer to me that my approach is the best approach for me. Despite the fact that I was a clinician — I actually worked in the same healthcare organization that he worked in — he did not treat me well as a patient. And thankfully, because I’m a clinician, I was able to identify that right away. But when you’re talking about lay people going to seek care, go with your gut.

If you feel like something is not quite right, get a second opinion. You’re entitled to a second opinion. Some insurance will even pay for a third opinion. Do not feel like you’re stuck with that person.

LaSonya D. seated

Go with your gut. If you feel like something is not quite right, get a second opinion.

Appointment with the urologist

The urologist talked to us about the procedure. He scoped my bladder and said matter of factly, “Oh, it’s bladder cancer. It’s definitely bladder cancer. But I think it’s really superficial. It’s probably not a big deal. With COVID, it’s hard to get an OR so we can schedule this out.” I said, “No. If you can’t do it, I can find a surgeon that can do it. I have very good insurance. I have a PPO. I can go anywhere I need to go. I have something growing inside of me that doesn’t belong here and I want it out.” So he was like, “Okay, I’ll go ahead and do it.”

covid test

He had someone come up to give me a COVID test because you had to have a COVID test before you could schedule your surgery. He said I can have my surgery in a week. The lady came up and did my COVID test. I didn’t notice at the time but when I think back, I didn’t see her label my specimen. Long story short, the COVID test came back positive.

How do I have COVID? I’ve been home for four weeks because I had that surgical procedure. My husband’s working from home and we’re the only ones here. We’re very, very careful and cautious. For a whole year, I’ve been working in the field, in the clinic, with patients, some with COVID, but I hadn’t had COVID. I was like, “Something’s wrong with this.”

I called my clinic and had them do another COVID test. That test came back negative. I called them and said, “I had a false positive test. This new test is negative. I do not have COVID.” They said, “Oh, well, he’s going on vacation.”

He was gone on vacation. I kept calling and advocating for myself to get on the schedule so I was able to get on the schedule for the following week. Three weeks after diagnosis, I was able to have my surgery for the resection.

During the time that I was waiting to have my surgery, I had questions for this doctor so I [sent an] inter-office message.

I checked into the hospital [on] the day of my surgery. During that time, you couldn’t have visitors so my husband couldn’t go with me to pre-op. I had to go by myself, which was very nerve-wracking. I was nervous. I didn’t know what’s going to happen.

If you’ve ever been into pre-op, there’s just beds and curtains between them so you’re not in a room by yourself. You’re in this big room. I go in pre-op. They prep me. They start your IV, get your history, [have] you sign your consent, and all those things.

He comes in before surgery and says, “Okay, we’re ready to do your surgery. I can tell you’re a very highly anxious person.” I’m thinking, Should I say what I really want to say? Or should I just not say what I really want to say? This man is getting ready to operate on me. I’m going to be asleep. He’s going to have instruments inside of me so I’m not going to say anything to put myself at any risk. So I said, “Yes, I am.” Whatever it takes for you to feel good about yourself to do what you need to do, that was my thought process. And he goes, “Well, you inter-officed me, but please don’t do that again. Do not inter-office me. If you’re going to email me, email me through the patient portal.”

I’m listening to him and thinking, We are in pre-op. You’re getting ready to resect my tumor to find out if I have cancer, if it’s superficial like you think it is. You don’t know everything. How can you tell me that this is not invasive cancer by looking at it with your eyeballs? I was like, “No, I’m not trusting that you saying superficial is enough and I want it out now.” I’m sitting here thinking, Okay, now you’re going to chastise me in the pre-op area for something that we could talk about at another time. That email [was] sent probably a week or two before so this is not urgent. You’re on vacation the whole week before so there was no reason for us to talk about that right now.

We had the surgery. Everything went well. Then he says, “It’s going to pathology and then we’ll find out what the situation is.” I said, “Okay.”

Feeling like your doctor is talking down to you

He did not see me as a colleague the way he was chastising me, in front of my colleagues, fellow nurses, and other patients. It could have been one of my patients in there with me. We’re all in the same healthcare system. He had no consideration of that. The little respect that I had left for him, I actually lost right in there.

The first thing I thought: I will never, ever in a million years refer any patients to this person. Congratulations. You will be a star in my book and the chapter is probably going to be, “Do Better,” because it was uncalled for.

If you have to drive an hour and a half or two hours to get the care that you deserve, you need to do that. How far would you drive for life?

LaSonya D. CSUCI

Treatment

Getting the care you want

When I got home, I talked with my husband. We decided that once I got a definitive diagnosis, I was going to transfer my care to City of Hope. I wanted to do that because my great aunt [who] had melanoma went to City of Hope and they gave her excellent care. I was like, “We have the insurance so we can do it so let’s just do it.”

From where we live, City of Hope is about an hour and a half [away]. My husband just said, “It doesn’t matter how far it is. I’m going to take you wherever you need to go.” And for me, that’s something I can’t express more powerfully.

If you have to drive an hour and a half or two hours to get the care that you deserve, you need to do that. I tried to get my ex-husband to transfer his care to City of Hope. I tried for almost a year. Finally, when he decided that he was ready, he could not transfer. He was too ill.

City of Hope [doesn’t] have an ER. It’s a cancer hospital but you have to enter as an outpatient. By the time he decided that he wanted to go, he was an inpatient at UCLA. He could not leave the hospital. He was so ill. He was there for a month. He came home for one night and was back at the hospital the next day. Never could get him strong enough so that he could be seen there.

I kept telling him they’re doing a special trial for his type of cancer. He really needs to try to get there. But he never did. I think the first thing that he said was, “It’s so far.” It’s only an hour and a half away. How far would you drive for life? And life more abundantly. How far actually would you go? 

Getting the results from pathology

We went back to the doctor and the doctor says, “I’m so sorry. I thought that this was superficial but you have high-grade bladder cancer. Even though we removed the tumor, these types of cancers have a very, very high likelihood of returning.”

The good news was that it hasn’t gotten to the muscle, but it is in the lamina propria, which is the lining inside of the bladder and the bladder wall. He said that they took an extra sample just to make sure that they were not missing anything. It was deeper than they thought it was, but it looks like there was no muscle in the tissue.

When he told us, my husband and I began to celebrate. We were happy. We were thanking God because we knew that if it was in the muscle, that [meant] chemotherapy, bladder removal — all that was going to happen, that was the next step. But if it was not in the muscle, I can at least try another treatment, which would have been BCG immunotherapy installations into my bladder over a series of time and then maintenance for three years. And if no recurrence of tumor, then I may be cured at that point.

We started celebrating and he said, “No! No! No! This isn’t anything to get excited about. This is serious. It’s high-grade cancer.” I was telling him, “Excuse me. This is something to celebrate because today, I get to keep my bladder. I’m not worried about what’s going to happen in a year, two years, or three years down the line. But this day, I get to keep my bladder and that is a blessing.”

Then he was like, “I really want you to go and have a second opinion with my colleague at USC.” I was thinking, Excuse me. The way you have treated me, there’s no way that I will ever go to anybody associated with you because they will likely be just like you and I’m not doing it. I tell him, “No, thank you. We’re going to City of Hope.” And he said, “Why do you want to go to City of Hope? It’s so far. Is there a particular reason?” I said, “Because that’s where we want to go.”

My husband interjected and said, “I will take her wherever she needs to go. If we have to get on an airplane, we will be doing that.” And I was thinking, Yes, we are those black people, not the ones that you think we are. I’m sitting here going, How dare he? The audacity to try to discourage me from going to a cancer treatment center, [an] internationally-recognized cancer treatment center, because of the distance.

I’m not worried about what’s going to happen in a year, two years, or three years down the line. But this day, I get to keep my bladder and that is a blessing.

He was saying, “We could do the BCG, which is the immunotherapy here, but there is a BCG shortage.” And this is true. There’s a national shortage of BCG because only one company makes it and I knew that. I also knew if you’re in a cancer treatment center, because of the other drugs that the hospital uses, they’re more likely going to make sure that they give them what they need first.

I felt like I was going to get a better chance of getting my BCG and getting it on time if I went there as well. We don’t think about these things as lay people, but this is something that I was able to think about and pre-plan. He probably wasn’t too thrilled [about] that. I just said, “Thank you very much. I appreciate all that you have done. Goodbye.”

LaSonya D. Frances Higgins Community Healthy Clinic
Dealing with preconceived notions in healthcare

He had a picture in his mind of who I was and what my life was like. He already had his own stereotypical thoughts about who I was. Because if he didn’t, he wouldn’t have treated me that way. Not because I was his colleague, but because I was his patient. He wasn’t seeing me as a colleague, even though I was. He was seeing me as a black patient.

I don’t really know. Maybe he treats all his patients that way, but being a black woman and seeing the health disparities that we have in particular compared to other groups, I thought that he felt that he had the right to treat me the way that he did.

Why wouldn’t he say, “Well, you know, City of Hope’s an hour and a half away. Is that going to be a problem for you?” Why not say that? No, he just assumed that we couldn’t do what we needed to do or we wanted to do as far as my care went. My husband should have never had to interject and tell him, “If she needed to get on an airplane to go somewhere to get care, then I’m going to do that for her.” We shouldn’t have even had to have that conversation.

I had an aortic aneurysm. I had heart surgery at 39 years old. My doctor, my cardiologist, he is a man of color. He is Indian. When I first went to him, was diagnosed, and knew that I had to have open heart surgery, the first thing he said [was], “Now I can do this surgery right here. But because of your age, I want to send you to San Francisco. I don’t know if you know this basketball player.” He was telling me about a basketball player who had the same thing, an aneurysm. And he said, “He plays with a vest on. He had his surgery in San Francisco and they did a great job. And I think because of your age, I really want you to go there.”

He never assumed that I wouldn’t be able to go there. He never assumed that we couldn’t afford to go there. He didn’t have any assumptions. He said, “In my personal opinion, you would receive the best care here. And this is where I would like for you to go if you could.” And that’s the approach that the other doctor should have taken. It’s only an hour and a half away. How far would you drive for the best chances? The latest equipment [and] doctors that are doing research actively on your problem. Why wouldn’t you?

He said, “You will never come back here.” I said, “Touché. I’m not coming back here.” He did exactly what we needed him to do — make the initial diagnosis and that was it.

I was looking for a doctor that looked like me because I felt like I could trust a doctor that looked like me.

Transferring care to City of Hope

It was so easy. The first thing I did was pull up their different offices. Come to find out, they have clinics all over. They have offices all over California, not just in Duarte. The closest to us that has urology was in Santa Clarita. From our house, it probably takes us 45 to 50 minutes to get there. If anything needs to be done, like hospitalizations, then you go to the other place. But you can have your regular visits, including the treatment for cancer, right there in that office.

I looked at all the doctors. I was even willing to go to Duarte if I had to. I was looking for a doctor that looked like me because I felt like I could trust a doctor that looked like me. Fortunately, I found one.

When I’m taking care of patients, I look at them holistically. For example, in my clinic, probably 95% of my patients are Latinx. Most of them [are] farmworker families. Majority do not speak any English at all. I speak a little bit of Spanish, but I try to find out everything I can about the culture. I want to learn as much as I can learn about the culture because those are my patients. Those are the people that I’m seeing. When I’m taking care of them, I’m not just taking care of what’s right in front of me. I’m looking at them holistically as people, as a culture, [and] as a community. And that’s what I felt like I needed in my health care.

I need someone who knows the culture so I don’t have to explain every little thing to them and they know how to approach me as a person probably because they have some shared experiences with me. Unfortunately, the doctor I selected was not a urologist. Urogynecologist but not a uro-oncologist, which is what I needed for my problem so I had to pick someone else. And I did and it worked out really well for me.

LaSonya D. in hospital bed
Discussing treatment with the new team

Even if I were to stay where I was, there should have been a second resection. What helped me is their bladder cancer advocacy. There’s an organization (the Bladder Cancer Action Network) that gives patients tons of information. It’s like the American Cancer Society for bladder cancer. I was able to pull articles, look at the actual standards of care, [and] the procedure so I knew what was supposed to happen.

If it comes back negative for muscle invasion the second time, after your bladder recovers [in] about four to six weeks, they start you on immunotherapy, which is installation of the treatment into the bladder. I had to do that for six weeks.

The new doctor did the resection. I really liked her a lot. Liked her personality. She was very positive, which is what we were looking for. The resection turned out really well. Then we were going to start the BCG.

BCG immunotherapy for bladder cancer

My path was a little bit different. They did the first six weeks of BCG. During that time, I had one bladder infection that delayed treatment for a week because I had to take antibiotics then I had to go back and finish. At the end of it, they wait eight weeks and then they scope you.

It’s an infusion directly in your bladder. You have to hold it in your bladder for two hours then you can pee it out. When you start peeing it out, you have to put bleach in the toilet and be careful that nobody else uses the toilet.

The BCG was better than chemo, but it was hectic.

Side effects from BCG immunotherapy

The first day, I would be fine. Second day, I would have joint pain, flu-like symptoms, [and] fatigue. I might have pain with urination [and] bladder spasms. The more treatments I had, the more irritated and the more irritable it became.

The BCG was better than chemo, but it was hectic. With the burning with urination, it didn’t matter what they gave you, it just was not going to do it. It might take the edge off, but that was pretty much it. It’s like making your bladder raw on the inside, too, to make the environment not conducive for the tumor to grow.

Maintenance therapy for bladder cancer

The following month was my first maintenance dose of BCG, which was for three weeks — a lot better than the six weeks. Then eight weeks later, I would be scoped.

On the eighth-week scope, I had no new tumors that they could see, but they saw a bumpy area. She wanted to watch it. At that point, you would be having maintenance BCG immunotherapy every three months for whatever the prescribed time was going to be. It could be two years, three years, [or] five years. Maybe two years and then [on] year three, you do it every six months. It just depends on how well your progress is going.

My bladder is actively trying to kill me. It’s my bladder or me. What’s it going to be? I decided I’d rather it be my bladder to go.

Bladder removal surgery

New development leading to bladder removal surgery

When I had my second scope after the three-week BCG maintenance, that’s when my treatment took a different turn.

When they went in to scope my bladder again, I didn’t have any tumors but that bumpy area had gotten bigger. The doctor said, “I want to take it out.” And I said, “I want you to take it out.” I was so happy that she wanted to do the procedure.

She went in, resectioned it, pulled it, took it out, [and] sent it to pathology. When she was in there, she found another small tumor that wasn’t even detected on the scope so she took that out, too, and sent that to pathology.

That area that was flat and bumpy was the same cancer that I originally had. It just wasn’t growing in the bladder. It was growing down so it had not reached the muscle yet, thank God. It had gotten to that layer, but it hadn’t broken through to the muscle wall. Again, that makes the difference between chemotherapy [and] something else.

She also found another type of bladder cancer: carcinoma in situ. I had already done some research and I knew that most people who have that, it just comes back. It’ll be one now. Next time, it’ll be three. Next time, it’ll be five. All roads eventually lead to bladder removal for most people.

Every time, in all these treatments, you’re rolling the dice that it’s going to get to the muscle. My bladder is actively trying to kill me. It’s my bladder or me. What’s it going to be? I decided I’d rather it be my bladder to go.

LaSonya D. seated with heart-shaped pillow

I’m going to stay here. I’m determined to be here. If I go ahead and do the surgery, I have choices [regarding] the outcome. If you wait too long, it can get into the bladder wall [or] outside of the bladder wall. The wall of the bladder is very thin. It sits right on top of the uterus. Once it gets out, it goes [quickly].

You’re taking chances. And I’ve never been one to really take a lot of chances, especially with my life. I know my kids need me. I know my husband needs me. I have a lot of responsibility and I really want to be here.

At that point, I made the active decision to have my bladder removed. I talked to my doctor and when she gave me the final pathology, I said, “I really think that I want to have my bladder out.” And she goes, “You know, I was going to tell you, you could do inter-bladder chemotherapy because it’s not in the muscle. We can put the chemo in your bladder but [it] may not work. It probably won’t, long-term. If it were me, I would do the same thing.”

At that particular point, that was the reassurance that I needed. But I already made up my mind that I was going to do it.

I’ve never been one to really take a lot of chances, especially with my life. At that point, I made the active decision to have my bladder removed.

LaSonya D. CSUCI Student Nurses Association
Urinary diversion options

What type of diversion am I going to have? Did I want to have a bag? No, I’m 52 years old. Why would I want a bag if I don’t have to?

The next choice was a neobladder, [where] they make the bladder out of [the] colon, put it back to where the old bladder was, and you can urinate like usual. But there [are] some challenges with that. One is my urethra. I didn’t want to keep my urethra because that could have cancer later. Two was that usually, the neobladder works better with men because women tend to have more incontinence and bladder leaking or retention. If I have bladder retention, that means that I’m going to have to cath myself so I can pee. It doesn’t mean it’s going to happen every time, but it happens a lot. And then leaking. We already have enough bladder leaking after you have so many kids. I was thinking, After all this, I don’t want to have to deal with any of that. For me, that was not the best choice.

The next thing was Indiana Pouch. I knew that was an option for me. The problem is [in] a lot of places, the doctors don’t know how to do it.

When you’re advocating for yourself, think about where you’re going to get your care. Because if they don’t know how to do certain procedures, they’re not going to recommend those to you even if they’re the best things for you. That’s left out because when you ask, “Can you do the Indiana Pouch?” They’re like, “We don’t do those here.” You’ve been having all your care there. Then sometimes we say, “Okay, I’m not going to do that one.”

Another reason why I went to City of Hope [was] because I knew that they did everything there and they may be doing some things that I don’t even know about. And if it sounds right, I’m going to be down.

Think about where you’re going to get your care. Because if they don’t know how to do certain procedures, they’re not going to recommend those to you.

I decided to do the Indiana Pouch. Great things about it. I can pee standing up. I have a problem with public bathrooms. And for now, there is no problem with a public restroom. I can go to the porta-potty. I don’t have to touch anything. Unless I have to have a bowel movement, I don’t have to sit down in a public restroom.

There is a risk of infection because you are putting the catheter in, the little stoma. People have different types of stoma. The one that I have is really low, below my bikini line, so I can wear a bikini and you can never even tell. Some people have [it] above the bikini line so that would show but they just put a waterproof dressing on it. Some people have it in their belly button, so they actually cath their belly button. For me, that wasn’t an option because I had another surgery [so] it wasn’t going to be a good choice for me. I didn’t think I wanted that anyway because some people end up with hernia and I don’t want to deal with that either.

I decided I would do the Indiana Pouch, so I just have a little catheter. It can fit in the palm of my hand. [When] I go to the bathroom, I just open it up. It’s all sterile. I can touch it on the outside and feed it in. I stand there, pee, take it out, throw it in the trash, and I’m on my way. It takes less than 10 minutes.

Had I waited, the cancer may have been to a point where that wouldn’t have been an option. It could have gotten bladder-invasive in the wall. These things grow fast. You need to have it out within 90 days.

When I made the decision to have my bladder out, I knew that I had 90 days to have my surgery because that might be a regrowth period and I didn’t want anything to grow back before I had my procedure. My husband and I had a trip to the Dominican Republic. I said, “As long as I can go on my trip, I’ll be ready to have my bladder out when I come back.” And that’s what I did. Five days later, I had my bladder removed.

When you’re having surgery, you never know what’s going to happen. What if something just didn’t go right? I told my husband, “We’re going to go on this trip. We’re going to enjoy and have the time of our lives because what if we don’t get a chance to do this anymore? I want to make sure that we have a good time.” And we did. 

Fortunately, everything turned out well. I had a few little setbacks during my recovery period, but I would not change anything. I’m just so glad that I made this decision, other than having to go to the bathroom on a schedule. Every 4 to 6 hours, I have to empty my bladder.

LaSonya D. HERS Network
Diagram showing a continent urinary diversion CRUK
Cancer Research UK / Wikimedia Commons
Choosing the best urinary diversion option for yourself

I thought about this. I didn’t want the bag so that was not going to be an option for me. I knew that if my other diversion failed, I could always go to the bag. You could always go to the bag later but you can’t go back once you decide you want the bag.

The other thing was if I have retention or bladder leaking, what [a] hassle that’s going to be. This is for the rest of my life. Who’s going to cath me when I can’t see down there? My husband? He won’t be able to see either. Who’s going to do it? But if I have the Indiana Pouch, if someone’s taking care of me, it’s really easy for them to take care of me. Someone else could do it [really] easily. It’s not difficult. They don’t have to go down there and try to find where to cath me.

I thought about a variety of things. I thought about the right now. I thought about the future. I thought about the things that I like to do. My husband and I love to go to concerts, outdoor venues, [and] festivals. Usually, there [are] porta potties involved. Is that going to be conducive to my lifestyle? What about when we travel? We like to travel. We like to go overseas. Is that going to be a problem? All of these things are manageable with my diversion.

It’s not just about living. It’s living your life abundantly and having the best life that you can possibly have.

Impact on intimacy and relationship

This is another reason why support groups are really important.

When they do a surgery of this nature, it’s major. They not only remove your bladder, but they remove your ovaries [and] part of your vagina because your bladder sits right on top of your vagina so there’s part of it that has to be removed. In some cases, they remove most of the vagina, especially if they think there’s a possibility that cancer has gotten through that. They [also] take out your appendix and lots of lymph nodes.

When you’re thinking about being married, young, and not having a vagina, that could be traumatic to your relationship. I never would have thought to ask but somebody in my support group brought it up. I talked to her and she became one of my close friends, too. When she had her bladder removal surgery, they removed all of her vagina except for maybe two inches, which [meant] that she would have to come back later and have a reconstruction of her vagina. I was like, “Oh no, that is what I’m not doing. I don’t have [a] muscle-invasive disease so it’s not out of my bladder. I do not want to have no vagina.”

I talked to my doctor ahead of time and said, “If I wake up and I don’t have a vagina, all hell’s going to break loose so we need to make sure that I wake up with a vagina.” She said, “We’ll do vagina sparing.” I said, “Yes. I want to make sure I have a working vagina.”

LaSonya D. and husband

It was very nice that I was able to consult with the plastic surgeon. Another reason to go to these big cancer centers is [that] all these doctors are there. The plastic surgeon was there and he went through the procedure. I said, “If they get in there and there’s a problem, I expect to wake up and still have a vagina.” He said, “If they get in there and they have to remove everything, then I’ll either take part of your muscle from your thigh or from your abdomen and I will make you a vagina. You’re not going to wake up and not have a vagina no matter what.” I said, “You promise I’m not going to wake up with no vagina?” He said, “No. I will fix it.”

It seems like something small when you have cancer, but it’s not. It’s still quality of life. It’s living your life and living your life abundantly. I want it all. If I have to go through all this, I want to make sure that I’m going to have what I need to be happy and all those things.

One of the things I was able to tell Ebony because she was coming behind me was, “Make sure you talk to them about vaginal sparing [so] you don’t wake up like another friend [who] only [has] a two-inch vagina and nobody told you anything.”

There [have] been a lot of people on the site whose partners left them. They have cancer and their partners leave. Because mentally, they can’t handle it or this situation. They can’t wrap their head around the fact that their sex life is going to be very different.

This is important. This is quality of life. It’s not just about living. It’s living your life abundantly and having the best life that you can possibly have.

Having my own community of support outside of my own friends and family also took the pressure off of them.

LaSonya D. bladder cancer ribbon

Support

Connecting with people through cancer support groups

Around the time that I transferred to City of Hope, I joined a bladder cancer support group on Facebook. I found a couple of groups: one was women and bladder cancer [and] the other one was just bladder cancer itself. Connecting with people — that were going through the same things that I had gone through, that had gone through what I had gone through, so I could ask questions that could offer me support — was invaluable while I was going through my process. I’ve met some lifelong friends since I joined a group.

The first person I met was a woman in New Jersey. She was diagnosed with the same cancer that I have. However, hers was caught at an earlier stage so she did maybe one round of BCG, but she hasn’t had to do anything else. They’re just scoping her.

My son is a dancer and we went to New York for him to do an intensive. I also have another son and son-in-law who live there. We went to visit them and I was able to have lunch with my bladder cancer wife. I got to meet her for the first time. We had lunch together. You think we’ve known each other for years. It’s the best thing ever. I think we both cried. We got diagnosed weeks apart and we have been going through this journey together, supporting each other.

We exchanged numbers after meeting on Facebook and we just started texting each other back and forth. We became really fast friends and we’ve been friends ever since. Sometimes I find myself calling her before I call my husband. That’s why I said she’s my cancer wife. Before the scan, she’d call me. I call her before her scans. We comfort each other. It’s so funny. This black lady and this little Jewish lady and we’re just a year apart in age. We have just bonded and she is truly my sister.

Then, also Ebony. When Ebony came on to the bladder cancer support group, she posted something and there was something in the background of her picture that let me know that she was in the same sorority that I was in. I got so excited, especially because there [were] not very many black people at all in the support group. There’s just not a high percentage of black people that have bladder cancer.

I [sent her a message] and said, “You know, I think you’re in my sorority.” We started talking and then we exchanged numbers. We started texting each other and supporting each other across the country. She was at the beginning of her journey so it was really nice that I was able to talk to her, encourage her, and let her know what the surgery was like when I was going through the process. When I got to meet my friend, that really just solidified our relationship more.

You never know why people come into your life.

Importance of finding & connecting with someone in your cancer community

It’s very important. It keeps you going. It empowers you.

I call my nursing students baby birds and they call me mama bird. Some students have graduated [and] have gone on to have their own careers. One of which I became very close to and she ended up having breast cancer. I was really supportive of her during her breast cancer journey, which was before I had bladder cancer.

You never know why people come into your life. I really believe that our relationship was orchestrated by God so when I got ready to go through my experience, I was going through it with someone who had already been through cancer before.

When she was going through her cancer, we used to talk about [how] I was going to help her write a book. The book was going to be, “You’re Not Helping,” and the things that people say to people that have cancer. “You’re going to beat this,” little things like that. It’s like, “You’re not helping.” There [are] a lot of things that people say and they think that they’re helping, but they’re not helping.

There are things that you can say that would be helpful. That’s why when people pass away, a lot of people say, “I’m sorry for your loss.” And that’s not helpful. What can you say? “I’m praying that God will support you and will send you peace and understanding.” “Is there anything I can do?” There [are] the superficial things that people just naturally say and then there [are] things that people say that have meaning that really go there.

LaSonya D. and student nurse

Some people don’t know what to say. I have a lot of friends [who] I didn’t even hear from when they first found out. I understand that it’s hard for you to wrap your head around my experience and what I’m going through but, at the same time, this is the time that I need you the most. Don’t disappear on me.

Having my own community of support outside of my own friends and family also took the pressure off of them. The things that I felt that they should have been doing to support me, I really didn’t need that because I had my community already that was there to support me and they were there to talk. They didn’t care about me talking about cancer for an hour.

The power of connecting with someone within your own circle

I felt a real sisterhood. I felt a special bond with her (Ebony, pictured left) outside of cancer, which was nice. In my sorority, we have a very small chapter where I live. Off the top of my head, we have lost maybe six sorority sisters over the last 15 years to cancer of various kinds: cervical, breast, liver, [and] pancreatic. It’s just so strange that so many people from one small sorority have all these cancers that take place. It’s really been rough.

One of my sorority sisters was diagnosed with stage 4 cervical cancer and she passed away. I started treatment in January, she passed away in September. [She] and I had been really, really close. I had taken her to the hospital before her initial diagnosis. To be going through that and have someone you love [and] close to pass away from that experience, it’s a lot. That’s why the mental health side is even more important.

Through this journey, I’ve lost a lot of people to cancer. In 18 months, four people close to me have died of cancer. One of breast cancer, one [of] cervical cancer — both my sorority sisters from the same chapter — and two first cousins that died seven months apart. One we buried last month, stage 4 colon cancer. He’s a year younger than me and then his brother died six months before that. Pancreatic cancer, weeks from diagnosis to death. These are my first cousins. We took baths together as babies. That was painful.

My cousin that passed away [from colon cancer], he and I are very close. We were only 13 months apart and we got diagnosed a week apart. We’ve been walking together through this, too. We’re both encouraging each other on a regular basis, talking to each other every week.

You can’t put 100% of your life into your healthcare provider’s hands all the time. Don’t have expectations that somebody else cares about you more than you do.

Words of advice

Listen to your body. If you feel like something’s not right, it’s not right. It doesn’t matter if they say, “Oh, everything’s okay.” You have to remember these things. If you die, they’re going to get another patient. The only people that are going to be affected by my death are the people who love me. And I love myself. If I feel like something is not right, I’m going to get a second opinion. Why? Because I’m entitled to one. And that’s what I’m going to get.

I’m entitled to do research and I’m going to do whatever research I need. Again, going back to, “The Lord helps those who help themselves.” Sometimes we ought to go out and help ourselves. As a provider, I care about all of my patients. I do the best I can do for them. But I am a human being as well and I don’t know everything. You can’t put 100% of your life into your healthcare provider’s hands all the time.

Every situation is different. If something doesn’t feel right to you, something’s probably not right. You’re obligated to find out so that you do feel right about whatever it is. Don’t always listen to what everybody else does. You have to do what’s right for you. Get all the information that you possibly can and then decide what’s best for you. You’re the one that’s going to have to live with your decision.

I couldn’t let anybody else make this decision for me as to what type of diversion I was going to have because it was my life and I’m the one that’s going to have to deal with it. No one else. No one else cares how I pee. They may have an opinion about it, but they’re not the ones cathing. They’re not the ones getting up in the middle of the night. They’re not the ones that have to see if they have an infection or not. They’re not. It’s me. I’m the one.

Put yourself first, whatever it is that you feel. If you feel that something’s wrong, then usually it is wrong. Don’t have expectations that somebody else cares about you more than you do.

LaSonya D. home

Follow-up regimen

Now that the bladder is gone, I don’t have to worry about bladder cancer but I’m going to be monitored for the next five years. Every three to six months, they’ll scope my pouch.

After five years, I’ll be monitored every year for the rest of my life. Scoped and probably CAT scan to make sure that there’s no recurrence there or anywhere else. And that’s a blessing to me.

Do what’s right for you. Get all the information that you possibly can and then decide what’s best for you. You’re the one that’s going to have to live with your decision.


LaSonya D. feature profile
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Medical Experts

Dr. Kim Rhoads | Umoja Health

Kim Rhoads, MD, MS, MPH, Founder of Umoja Health

Kim Rhoads, MD, MS, MPH, is the founder of Umoja Health.

Dr. Rhoads is an associate professor of epidemiology and biostatistics at the UCSF School of Medicine. She is also an associate director at the Cancer Center in the area of community engagement and an affiliate of the Philip R. Lee Institute for Health Policy Studies at UCSF.

With the many hats she wears, the common thread is community engagement as a pathway to take action to get to health equity.

The interview has been edited only for clarity.

Dr. Kim Rhoads feature profile


When it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.


Dr. Kim Rhoads with family pre-pandemic
Dr. Kim Rhoads with her family, pre-pandemic

What drew you to medicine?

Stephanie Chuang, The Patient Story: What initially drew you to medicine and what drew you eventually to the area of cancer?

Kim Rhoads, MD, MS, MPH: Before we had the DEI language, I was in one of these pipeline programs in 1985 and 86. My mom happened to work at the School of Medicine at UC San Diego and she was in administration. They used to call her The Oracle. She was friends with the woman who started, I would argue, one of the first pipeline programs for underrepresented groups in medicine.

At 14, I worked in a lipid metabolism lab at UC San Diego for two summers in a row. I remember telling my mom, “Don’t get excited. I’m not going into medicine.” But the money was really good.

People in the lab took an interest in me and I liked science so it was fun for me to be in a laboratory. I already had a little bit of experience and the folks in my lab encouraged me to think about medical school. I was not thinking about that.

I majored in linguistics. I was not interested in being in the rat race. But as a junior in college and thinking about what a linguist does for a job, I decided to pursue the coursework to go to medical school.

I knew that it was a big commitment and that I needed to be making a conscious choice about going to medical school.

What personal experience really shaped you?

Stephanie, TPS: You were primed from a very young age, being in a lab at 14. You pursue medicine and, at some point, something personal happened that really shaped you.

Dr. Rhoads: I’d taken all the coursework [for medical school], but I decided to take a year off between college and medical school. Because I had worked in a lab, I was referred by my lab PI (principal investigator) to a lab in Washington, DC. I decided to move for a year [to] take some time and figure out, “Is this really what I want to do?” I wanted to take some time to make a decision [and] casually take the entrance exams.

I worked in an HIV lab at the time and my family is from Virginia, so I had a car. I would drive to Virginia on the weekends and spend time with my favorite cousin and my favorite aunt.

During that period, once I decided to apply for medical school, I was talking to them about interactions black people have with the healthcare system. My aunt was expressing that something was missing from her interactions with healthcare. I remember distinctly, she said, “I just want to be able to go to a clinic where when you walk in, people know your name.” But what I realized is she was asking for community. She wanted to feel like she was part of something, not like she was going into a situation where she would be judged for the choices she had made or how she lived her life.

I don’t want to be on a treadmill and then get to the end and find out that this isn’t what I really want.

What I didn’t know at the time was she had breast cancer. Nobody in the family knew. By my second year in medical school, the cancer had become so advanced she was not even offered surgery. She was treated with chemotherapy and died in the hospital. All contrary to having [a] choice, being supported, [and] feeling that warmth people need in a vulnerable time.

Because I’m [a] first-generation college graduate and [the] first doctor in my family, I thought, “Let me make a phone call. Maybe I could translate,” because I know that medicalese is being spoken and that people are probably not understanding what’s going on. When I called the hospital in Virginia, I was given a little bit of information. I asked if there was a specialist involved and was told, “General surgeons take care of breast cancer and we’re not operating anyway because the tumor is too large.” A lot of dismissive interaction.

By the end of the conversation, the person on the other end of the phone said, “Are you a nurse?” Because clearly, I had enough medicalese to get by as a second-year medical student. I said, “No, I’m a medical student,” and they hung up on me. That really stuck with me. This is not how it’s supposed to go, especially in that vulnerable time. That set me on a course of my original pathway in research, understanding the experiences of black women facing breast cancer and [their] relationship with surgeons.

What is that relationship like? Is it kind and caring? Did you feel taken care of and that somebody was looking after you? I remember one of the questions was, “Did your doctor make a U-turn at the foot of the bed?” It got me thinking about the fact that she never got radiation, which she needed based on the description of the tumor. That’s when I started to look into and think about it.

Many years into my surgical residency, comparing the different settings I had trained in — a Kaiser, a private institution, the academic center, the safety net hospital, the Veterans Administration — and seeing all kinds of different care provided for the same problem and making me wonder: Does this have anything to do with the difference in resources that are available? Going back to my aunt and asking the question: Was there radiation available at that hospital? As it turns out, there wasn’t so that’s why she wasn’t offered radiation. That started to form how I think about disparities because my suspicion was that you get the kind of care you get based on the institution that you select. And that brings us back to our question of inequities. Are people able to get what they need based on where they choose to get their care or where they’re forced to get their care based on their circumstances?

What is health equity?

Stephanie, TPS: What does health equity mean, Dr. Rhoads? We hear this now constantly. We hear about DEI in healthcare. What does that actually mean on a human level?

Dr. Rhoads: Health equity refers to everybody getting what they need. I think we started [with] liberation movements with the language of equality. But when it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.

The word is now being overused. It is now being substituted for disparities. When we put the word inequity on top of disparities, what people are trying to refer to is the fact that these are addressable because if something is inequitable, it means it can be shifted towards equity. But by putting it over and covering over disparities, what we are effectively doing is trying to erase a state of being that exists as a result of inequity. It is the final common pathway of inequity. You end up with disparities. As long as we have inequities, we’re going to have disparities. But what we want to stay tuned for is the elimination of disparities by intervening to promote equity.

Stephanie, TPS: At the end of the day, words really matter and sometimes, it’s not really clear how powerful they are.

As long as we have inequities, we’re going to have disparities. What we want to stay tuned for is the elimination of disparities by intervening to promote equity.

What have you learned since then?

Stephanie, TPS: You were very conscious of this from the very beginning, even before you officially started seeing patients and becoming a surgeon. In the many years since then, what have you learned? Has it changed over time or are we still at the same place, depending on where you go for care?

Dr. Rhoads: Are we still there? Yes. The answer is yes. Most people don’t know because we don’t have a Consumer Report on what hospital you want to go to. There is website [for California] – CalHospitalCompare.org. You plug in your zip code, find the nearest hospitals, and look at their quality ratings. There were some efforts to try to promote better outcomes by ranking quality and letting providers know where the high quality is, letting the insurance companies know where is the high-quality care. There were several studies around 2005 [and] 2006 that came out showing that nobody was using those rankings. Referrals were being made based on personal networks.

My suspicion was that you get the kind of care you get based on the institution that you select… People don’t know that where you go determines what you get.

Whenever you talk about personal networks in [the] field of higher education, you know that those networks are going to be segregated. You can imagine how that can play out. Especially with the history in this country, for example, of black doctors only being allowed to train at certain institutions, only being allowed to practice in certain areas and in certain hospitals, [and] not being allowed to join professional societies with white physicians. That then is going to determine where your patients can go to get care.

California hospitals are still segregated by race [and] ethnicity but also by insurance status. That all came from policy, redlining, exclusion, and segregation in all of those layers — education and where you practice. That’s where patients are able to go.

Have things changed over time?

Stephanie, TPS: What you described, people might think, “Oh, that’s from before,” but what you’re saying is it’s very clearly still here.

Dr. Rhoads: It is. My aunt was treated in a safety net hospital and that’s the hospital that has to take you as a patient, regardless of your ability to pay. Your county has designated where those hospitals are. Those hospitals largely serve patients who have no insurance or Medi-Cal (when we’re talking California) [or] Medicaid (when you’re talking nationally).

If you rewind back to [the] ’64, ’65 civil rights era when Medicare and Medicaid legislation [was] being advanced at the federal level, the American Medical Association — which was very exclusive at the time, did not allow participants who were of color — [was] advocating against these policies. I don’t understand why, that doesn’t quite make sense to me. But the National Medical Association, a professional society created by black physicians out of exclusion, [was] heavily advocating for the passage of this legislation, in particular Medicaid, because they knew that those dollars were going to come to the hospitals where they were working and would have the opportunity for their patients to be covered by some kind of public insurance.

Dr. Kim Rhoads with San Francisco Supervisor Shamann Walton
Dr. Rhoads with San Francisco Supervisor Shamann Walton

Now, what you’ve got across the country are hospitals that serve a disproportionate share of patients who have Medicaid or no insurance at all. What you’ll find is those tend to be your safety net hospitals so their revenues are not that high because they’re being paid by an insurer that doesn’t reimburse at a high rate. For example, Medicaid pays somewhere between $0.05 and $0.15 [per] dollar. If your total hospital bill is $10, you may get $1.50 back to the hospital to reinvest in their plants, property, and equipment.

Cancer care is expensive. A radiation machine costs money. A specialized CAT scanner costs money. If your revenues are low, those are not the investments you’re going to be making. That’s how you start to see a segregation of patients of color using high Medicaid hospitals for cancer care and then having to get whatever is available. That may not be the high-end PET scanner, may not be the CAT scanner that can slice the pancreas into thin enough slices that you can see a teeny little tiny tumor. If you need radiation and that hospital doesn’t have some kind of agreement with a place to provide radiation, you’re not getting radiation. That has a direct impact on outcomes.

When we looked back in about 2014 [and] 2015, we used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups. We had what we called white-serving, Hispanic-serving, black-serving, [and] Asian-serving.

The one very notable thing is that white-serving hospitals do not overlap with black-serving hospitals and that they only overlap with Asian-serving hospitals. Hispanic- and black-serving hospitals are completely segregated. There are hospitals in California we can show you that have had zero black patients over a period of 10 years.

It really is segregated in a way that has not been amplified. We were looking at what was called minority-serving, so that was any non-white-serving hospitals. Those do not overlap with white-serving hospitals either. It is a pretty segregated system in California.

Across the country, minority-serving hospitals are black-serving hospitals. In California, minority-serving hospitals are Latino- or Hispanic-serving hospitals. Those are just some ways that we have looked at the data to understand the landscape of segregation that is still persistent in our healthcare system in a very liberal and very diverse state.

We used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups… It really is segregated in a way that has not been amplified.

Why do people go where they go?

Stephanie, TPS: Sometimes, when we talk about these things, about race as a social construct and not just biology, I thought a lot of this is socioeconomic. If you live in a certain area and have limited means, you’re limited in terms of options. The most accessible hospital may be a safety net hospital. But you’re saying this is down racial lines. Can you talk about that? I know there’s another layer there. We talk about socioeconomic, but it’s very clear what you just described.

Dr. Rhoads: Socioeconomic factors — like income, education, [and] employment — track along racial lines as well. It’s hard to pull them apart.

We did publish a series of papers asking the question, “Why do people go where they go?” As you suggested, maybe you just live near the safety net hospital so that’s where you get your care.

We asked racial and ethnic minoritized communities [and] populations in California, “Would you use a National Cancer Institute-designated comprehensive cancer center?” That’s where the best outcomes, all the high-quality services, [and] all the specialists are. Then we also asked, “Would you use a high-volume hospital?” Because practice makes perfect, right? If you’re taking care of a lot of cancer, then your outcomes tend to be better. We’ve shown that that’s true.

We started off by asking, “What is the median travel distance that people will go in California to get colorectal cancer treatment?” We found that the median travel distance was five miles. Now there are all kinds of discussions that can be had about that. Five miles doesn’t seem like a lot. If you have a car, that’s short. If you’re on the bus, it might take longer. If you don’t have the access to either of those things, five miles is impossible.

We used that as a marker then we said, “What proportion of each racial and ethnic group lives within five miles of a National Cancer Institute comprehensive cancer center or a high-volume center?” It turns out that racial and ethnic minorities are the groups that live closest to these centers because they tend to be in non-rural areas in California. They live closer.

Then we said, “Of those who live within five miles, are you using them?” A lower percentage of racial and ethnic minorities who live within five miles of an NCI center or of a high-volume center were using them.

What’s going on here? Is it because some people are actually going where they can get better quality and going to a safety net hospital or high Medicaid hospital? Because that’s where the clustering of racial and ethnic minorities [is]. We asked, “Is this because of insurance?” The answer is no. Insurance did not move the needle. Insurance was not as statistically significant in its correlation. It did not explain this difference.

Then we asked, “Is it travel distance?” We counted everybody in because some people will be further than five miles out and travel distance did make a difference. So that was comforting because it makes sense. It has face validity.

But then we asked, “Is it possible that the neighborhood characteristics determine where you go?” We used education as the socioeconomic factor and it overrode travel distance. It neutralized the effect of travel distance. Travel distance did not matter. What mattered was [the] neighborhood education level. I know when I give this presentation on this series of papers, a lot of people will say, “I knew it.” They just don’t know better. But lots of people know better and still don’t pick the highest quality hospital, including insurers [and] referring providers.

The way I try to explain this is we looked at neighborhood-level education. It’s not the education of the individual; it’s the characteristics of the neighborhood. What we say is you are like your neighborhood. You’re like your neighbors in terms of your health behaviors because that is a marker of socioeconomics: What’s your neighborhood like? In your neighborhood, you’re in range with everybody else because you can afford to live there [and] you chose to live there. What we’re saying is neighborhoods develop patterns of where they get their care and that trumps quality and travel distance.

So that’s where my aunt went. If that’s where my grandma used to go, where my mom went, then that’s where we’re going because that’s our hospital. The problem is that if you peel back another social determinant — which is redlining and say,  “Where are people allowed to live?” — then you become like your neighbors and you establish a relationship with the hospitals that serve that neighborhood. And those tend to be the safety net hospitals for racial and ethnic minorities.

Stephanie, TPS: Wow. You did ask all of the important questions. If not this, then what? While you were talking, I did think, “Oh, it must be the insurance.” And it’s not. The community events build a bridge of true understanding, not just, “You don’t know any better. You should be going here and this is why.” None of that.

What’s embedded in that history is a relationship and what that offers an opportunity to do is to have a different relationship.

Dr. Kim Rhoads with family
Dr. Rhoads with her family

What are the solutions?

Stephanie, TPS: What are the solutions?

Dr. Rhoads: What’s happened is a relationship has been developed, whether that relationship is for better or for worse. You might not be aware that you could get better outcomes somewhere else because that’s always where everybody’s gone. The crazy things that happen there that don’t make sense are perfectly acceptable because that’s the relationship and that’s where you’re talking about history.

What’s embedded in that history is a relationship and what that offers is an opportunity to have a different relationship. But what about now? And what about going forward into the future? That is, I would argue, the foundation of Umoja Health — building a relationship and not building a relationship like it’s a destination. Understanding that relationships evolve over time.

Trust is the equity of relationships. You build it up as you go through good and bad things together. Not just all good things, but the bad things, too. I think [what] we have forgotten in medicine, in healthcare, is our own humanity. We’ve forgotten that we are also simply people. I don’t care if you’re green, purple, brown, [or] whatever. That’s the one thing I have in common with everybody. We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.

We don’t have to tell them all our personal secrets but we shouldn’t be thinking about those relationships as, “I have all the resources and you do not.” There’s that way in which we otherize the patient. It happens in medicine, just in that doctor-patient interaction. The doctor is coming with some information. The patients come in with a lot more information than the doctor could ever have because they’re living in that body every day. But there’s some way in which we exalt the doctor, [as if] the doctor could never be the patient, which is a ridiculous proposition.

Similarly, as institutions, when we partner with [the] community, we otherize them. There’s a lot of paternalism. There [are] things that we want to hide and don’t want to say. Failing to recognize that.

If we came with transparency and said, “These are the hard parts. Let’s work on the hard parts together,” that is going to build trust faster. Then it all looks good and everything we do is great.

We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.

How can we start the relationship on the right foot?

Stephanie, TPS: What are some things people could say to be more transparent and kick off the right conversation to lead to a good relationship?

Dr. Rhoads: First of all, it’s an acknowledgment that this one interaction is not our whole relationship. This is the beginning. I will see you again. In the process, as a human being, I will be making some mistakes. You will be making some mistakes. We will have some miscommunications. But the commitment to the relationship is that we will work through those together. I think that’s what can happen in the doctor-patient interaction.

In the institutional interaction, there also needs to be some humility. We talk about truth and reconciliation. We want to do the reconciliation; we don’t want to do the truth. That’s the hard part. Part of that is getting out of the building and being in community in whatever way you can. You don’t have to be in community as the doctor. Be in community just as an individual human, experiencing life in the same geographic territory as other people but obviously having a different experience. I think that’s what helped Umoja move along.

I also think people buy into Umoja and link into Umoja because even though it’s focused on COVID for the moment, it came out of our relationship with our partners around cancer. They asked us specifically to focus on COVID when the pandemic hit and we said we will do that because we committed ourselves. Year-round — not just when cancer is a problem. Non-transactional — we’re not here just because there’s a study and we need you to get in our study and diversify our study. We’re here because we want to be in partnership. It’s year-round, non-transactional community engagement. 

I don’t think people really thought about the non-transactional part. They think about being nice. It’s not about being nice. It’s about being on a shared mission and sticking around when times get tough.

Dr. Kim Rhoads Umoja

We need to build relationships and that’s where you’re going to get people wanting to be part of the solution.

When you get caught in a problem that gets posted on social media of your institution or a representative of your institution doing something that none of us want to see happen, what needs to be done is a confrontation of that behavior, an admission that that was not only wrong but is not what we are intending to do, and to sit with the community that’s impacted and listen as they express their frustration. Then figure out together how you can take action to avoid it in the future. It doesn’t mean that we’ll be perfect. Again, there’s a disclaimer. We’re going to continue to make mistakes. But what you’re committing to is continuing to work together. That’s the investment that is absent in all this DEI and DEIA conversation — the commitment to humility and transparency is what is always, always missing.

With Umoja, we’re out in the community. I’m wearing an Umoja T-shirt just like the volunteers who are there, just like any other medical provider volunteer who comes out — we all look the same. It gets me back to what my aunt was looking for. She’s looking for her neighbor to be at the clinic, to be the person to welcome her. When [you] take away that self-exaltation, holding ourselves more important than other people because we have special knowledge, you end up with the ability to connect with people. For the person coming into that setting, you also get rid of the feeling like they’re going to be judged for their life choices. If they feel like they’re judged, they’re going to lie about their life choices. They’re not going to be totally forthcoming. They’re not going to feel that they have permission to be fully who they are. And that’s where I think we’ve gone wrong with all of healthcare.

We do not train healthcare providers [to see] people in their full humanity without judgment. We provide rules of what’s good and what’s bad, and then you judge the people who are doing it wrong. Then if you layer racism in there, you have a quicker judgment [of] different people because there is a belief that they are inherently not good or inherently better than other people. Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.

We need to build relationships and that’s where you’re going to get people wanting to be part of the solution, wanting to promote your study, wanting to participate in your study, because that’s not the primary thing you asked. The primary thing you asked them for was a relationship.

Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.

Dr. Kim Rhoads Umoja white tents

How can small steps lead to big changes?

Stephanie, TPS: What you just said is really powerful. This piece about judgment is huge and that’s what you cut through when you started Umoja. You were in the community. You were leading. You were modeling. Something as simple as not wearing a UCSF shirt. It’s a simple decision but it sends a message.

Because of the timing, COVID is where a lot of the attention was paid. Can you give an example of how what seems like small steps and small decisions can actually really change someone’s mind if you really want to get them involved?

Dr. Rhoads: I’ve been doing community engagement work since 1993 and in 2020, I had a number of eye-opening revelations.

We started Umoja as United in Health District 10. It was an offshoot of Unidos en Salud and I always have to give credit to Diane Havlir for the brilliance of bringing COVID testing into the community when people didn’t have access. We were working in Bayview, southeast sector San Francisco — a large African American population, relatively speaking to the rest of the city — and then Sunnydale where we picked up Pacific Islander communities and then Latino population all throughout.

I remember having a conversation with my department chair and saying, “It really strikes me that the tents for the testing efforts were all just white tents. There was no signage anywhere that said Public Health Department or UCSF and I think that’s actually why people were willing to come.” That was my suspicion.

Then to bolster that, a participant I was speaking to — I had no idea she had gotten tested at our site — brought it up and said, “The only reason I answered your survey questions was [that] my neighbor was the person asking the questions.” Throughout setting these pop-ups, we would track the volunteers who are working the site: Do they match the demographic distribution in the neighborhood? Are we capturing the neighborhood people? Are we engaging the neighborhood people? So that was a big deal when she said, “I only answered because it was my neighbor. Otherwise, I wouldn’t answer any of those questions.” The trust was already there. The relationship was already there so that gives us an advantage.

Engaging people in the process changes how people perceive who you are.

Once we became Umoja Health in late 2020, people were coming out to work together who had never worked together before. I didn’t know because there were these community-based organizations [that] would come together under this umbrella. Thank you to the Brotherhood of Elders Network who opened the door.

We would get out into the field and I would have to say to people, “I know you’re really happy to see people, but please don’t hug each other.” It’s still COVID. There was joy inside of the pandemic and that joy was for us, by us, or FUBU work. Community saving the community. Community delivering the services. Community being valued for what they bring to the table, which is a relationship we don’t have.

That relationship translates because what you could see happening in the informational sessions we were doing in between the service events was people really understanding COVID in their own terms, in their own ability, to explain why social distancing mattered, why wearing a mask mattered, what is exponential spread… People just started to get it on their own. And that was huge. I realized these organizations suddenly are working together and have networks that we haven’t even seen.

By participating in delivering the services [and] setting up the site with COVID safety in mind, these people are going to go home to their families, they’re going to be in their social settings with their friends, and they’re going to be talking like this because it’s part of what they’re doing. It’s not because they’re now a doctor. It’s not anything formal. It’s the informal influence, the informal authority that they have within their groups that they could use to start promoting uptake and participation in COVID mitigation.

By the time we finished our first run of Umoja in the fall of 2020, African American people had gone from being the lowest testers in the county to being the highest testers in the county. We didn’t even work the entire county, but we had people in our informational meetings taking that information to their networks. People started really emphasizing and highlighting as credible messengers.

Those are examples of how engaging people in the process changes how people perceive who you are. Now, we get a lot of calls like, “Somebody has cancer. We need a second opinion. How can we get into UCSF?” People who would not have otherwise even considered talking to UCSF. These are people from our Umoja community, COVID-focused, calling us about cancer.

It just goes to show that the relationship is what matters. They perceive that we care because we’re willing to come out, to employ community people, [and] to make spaces for the community to be an active and primary part of the solution. We’re not looking at people as needing transportation and child care or you’re poor and you don’t know anything and we’re ministering to you. No, we’re saying we need what you know because that’s going to help us get the information out and that is what is going to help move us truly toward health equity.

Stephanie, TPS: Everything that you just described is so powerful. Those were really incredible examples. At the core of it, it’s about really building real relationships. People can feel it. They know. They know when you’re approaching them and they feel like, “Are you coming in thinking you’re going to save me?” Let’s go in equally because that’s what we are.

How can we avoid otherization?

Stephanie, TPS: For people who feel, “Well, that’s the other community,” what’s the message about why it’s so important for everybody? We’re not only talking about lifting black Americans or Latino Americans or Asian Americans or Pacific Islanders. What is that message to people who don’t get that part?

Dr. Rhoads: Otherization is really central to how I think about any of the work that we do in any community. You can be a short white man who is not aggressive and be otherized. There are a million ways to be otherized. What I go back to is the way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth. And I guarantee if you spend more time, you’ll find other similarities and other commonalities so you don’t have to separate yourself in that way. I think that’s core to what the problems are in healthcare.

What I would also point out is Umoja Health in Alameda County focuses on the African American community but in San Mateo County, it focuses on the Pacific Islander community and the Latino community. It’s whoever comes to the table. [It] really is people-powered. It is whatever resources. It is the actualization of stone soup. Whatever you can bring to the table, that’s the soup we’re making and that’s the soup that we’re having.

The way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth.

If what you’re bringing to the table is your ability to access resources from other spaces, even better, but it allows an opportunity for everybody to fully be who they are and not have to be other. We’re in this together. Everybody is susceptible to COVID. Everybody can actually come to the table and not be judged, “Well, you’re not bringing anything and so we’re here saving you.” No.

You can volunteer. You can encourage people to come to the site. You can educate people with what you’re learning in the meetings. You can invite people to the meetings. Everybody can contribute something. Until we get a handle on that, on believing that, and on operationalizing that, we’re going to be stuck. 

For now, the paradigm we have is some people are better than others and have more than others and they need to give to or minister to those who have less. It discounts the importance of the other. Baba Arnold Perkins, who used to be the director of the Department of Public Health in Alameda County and who is now the chair of the Community Advisory Board for our cancer center, says, “Everyone is a piece of the puzzle and every piece is important.” And recently when I talked to him, he added to that. He said, “And every piece is equally important.” And that’s what I think we really need to recognize.

Dr. Kim Rhoads group photo with Baba Arnold Perkins
Dr. Rhoads with Baba Arnold Perkins (rightmost)

Think about doing a puzzle. Get a 5,000-piece puzzle. You’re just tooling along. It’s looking really good. A piece falls on the floor and you don’t notice until you’re done. When that piece is missing, it ruins the whole puzzle because it’s missing and it’s only one piece out of 5,000. So every piece is equally important.

Everyone is a piece of the puzzle and every piece is equally important.

Baba Arnold Perkins

How can we deal with the lack of trust?

Stephanie, TPS: Some people say this lack of trust or even distrust specifically when we’re talking about the black community, as the generations go on with younger people, slowly that’ll take care of that. In your experience, you met a range of people in terms of age with the same lack of trust.

Dr. Rhoads: Trust builds at the pace of the relationship. Think about this: If you don’t have a relationship, why would you expect to have any trust? You shouldn’t. Think about your own personal relationships. You just met somebody. You don’t automatically trust them. It takes some time of building up how you work together [and] how you relate to each other.

Over the generations, you might think [that] young people are unaware because this happened so long ago. But actually, the young people are where it’s at because their minds are flexible. They’re open. They’re willing to see disparate treatment, privilege, and access to opportunities. They can see it.

What I have observed is that for the younger people, it makes them uncomfortable. They want things to be different. We did hear the vaccine was developed too quickly. There [are] nanobots in it. Don’t trust the government. We saw that across age groups — no question. But I do think that there’s an opportunity because young people are now interested.

Climate change is another disaster that adults are creating for them. Racial discrimination. Killings of various kinds of people who are at a disadvantage at the hands of police. They’re seeing that for what it really is. I don’t hear from younger generations trying to smooth it over and say it’s just miscommunication. That’s definitely something that happens in generations who maybe don’t want to hold the responsibility for what we have created. The young people didn’t create it so it’s easy to critique it.

It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior. There are reasons to be suspicious, which is why it matters to be in community, outside our walls, because that’s where you can start to break down things that happened in the past because now, something’s happening in real-time.

It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior.

Dr. Kim Rhoads with cancer survivor Norman Tillman
Dr. Rhoads with cancer survivor Norman Tillman

What are the next steps?

Stephanie, TPS: There are so many cancers that disproportionately impact black Americans compared to other groups. I know it’s across health care and life, really. But in cancer specifically, what do you see as the next real feasible steps? Bringing the hospital out into the community, really showing that we care, and trying to build real relationships. Are there additional steps that we can take collectively to help address the inequities and the disparities?

Dr. Rhoads: If you address the inequities, you’re going to get rid of the disparities. I’ve written some papers to look at [the] delivery of care and when you get the right care for the right stage of disease, the differences by race [and] ethnicity go away. We’ve shown it in colon cancer, acute myelogenous leukemia, gastric, and pancreas cancer. We know that if you address the inequities, you’re going to get back to differences. And differences are okay because innately, we are different from each other. We’re not going to live the same number of years. Those differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate. Addressing inequities is going to get us there.

There is a process that is in play. Building the relationship is the beginning of the process. What happens when you’re in relationship with [the] community is the questions start to be centered around the community instead of centered around institutionalists. Because we’ve made the barrier between the institution and the community more porous, we can actually receive input and guidance on what research questions should we be asking.

What are people observing on the ground that we’re unaware of and are assuming a sterile condition under which these disparities are happening? For example, higher rates of cancer in younger people. What do we know about what’s happening on the ground? Often, we don’t know anything. We assume everything’s equal.

The next step is having the community influence the research questions. We’re working with Cancer Grand Challenges, which is an international award to the United Kingdom and the US. The National Cancer Institute and Cancer Research UK combined to fund 11 projects. I’m involved with one of them and the question is about cancer promotion. Are there environmental exposures that cause a mutation you’re already carrying that your body is keeping in check? We are all carrying millions of mutations right now, but we’re not a million cancers. Are there environmental exposures that are selecting a mutation and saying now you’re going to start growing, you’re going to be a tumor? 

I think that kind of research is going to be so importantly informed by advocates and community partners because they’re going to be able to tell you stories about what’s happening in their neighborhoods. When we see cancer clusters, we can start asking very specific questions about cancer promotion in those specific spaces. Again, that’s another example of centering the community in the research question. We can apply our scientific approaches, which are all very cutting-edge, but we’re applying them to questions that are directly relevant to people who are living regular lives outside of our institution. The next step is developing questions that really hit home so that our results are relevant to the people that we think we’re trying to serve and be in partnership with.

If you address the inequities, you’re going to get rid of the disparities… you’re going to get back to differences.

Differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate.