Author: Katrina Villareal

DLBCL in 2023

What Patients & Caregivers Need to Know Now

The Patient Story founder and DLBCL advocate Stephanie Chuang leads this conversation with Dr. Josh Brody, who leads the Lymphoma Immunotherapy Program at Mount Sinai’s Tisch Cancer Institute, and Dr. Lorenzo Falchi, an oncologist at Memorial Sloan Kettering Cancer Center with special research focus on immunotherapies for B-cell non-Hodgkin lymphoma.

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

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

Table of Contents

Introduction
Immunotherapy for DLBCL
CAR T-cell therapy in earlier lines of treatment for DLBCL
Bispecific antibodies in the treatment of DLBCL
Bispecifics in clinical trials
Cytokine release syndrome (CRS)
Deciding whether to give bispecific antibodies or CAR T-cell therapy
Bispecifics given as single agents and in earlier lines of treatment
Epcoritamab for transplant-eligible patients who didn’t do well post-transplant
Importance of patient-reported outcomes
Breakthrough therapies for DLBCL offer hope
DLBCL Patient Stories

Introduction

Stephanie Chuang, The Patient Story: I was diagnosed with cancer when I was 31 years old and, like many people, I was completely overwhelmed [and] freaked out. I thought, Am I going to die? I think that’s a pretty common thing to think when you’ve been diagnosed with cancer. I was really thankful to learn that there was a standard of care treatment in chemotherapy that seemed to have a pretty good impact on cancer and DLBCL.

I underwent dose-adjusted R-EPOCH — a little bit different from the usual R-CHOP. I remember my doctor telling me, “Look, Stephanie, if you can hit two years after treatment is done and the cancer is gone, you’re still in remission. That’s a really good sign.”

It’s great news that I was able to get through treatment and get into remission. But that wait was really hard. Lots of anxiety and scanxiety as it’s known. I was able to hit two years and, in fact, most recently I celebrated my five years. But so many people cannot say that.

That’s where the problem is. There’s a really great need for more options in treatment. If that first treatment fails, when cancer comes back or if it never responded, [relapsed/refractory cancer] and that’s what we’re talking about.

What are the treatments out there? What are the options? What should you know to ask your doctor in terms of the research that’s going on out there?

There’s good news. There [are] a lot of different things happening in clinical trials, whether it’s new drugs or new combinations, new tactics, and a lot of immunotherapy using your own immune system to fight cancer.

I’m really excited to bring together two top DLBCL specialists and, hopefully, shed some light for you, especially during what is a very difficult time.

Dr. Josh Brody leads the Lymphoma Immunotherapy Program at Mount Sinai’s Tisch Cancer Institute.

Dr. Lorenzo Falchi is an oncologist at Memorial Sloan Kettering Cancer Center with special research focus on immunotherapies for B-cell non-Hodgkin lymphoma.

There’s a lot of new information and updates coming out of the biggest meeting of top blood cancer doctors and researchers called ASH or [the] American Society of Hematology, which just took place.

Dr. Brody, a lot of people wonder — I certainly did when I was diagnosed — why me? What did I do to get this? This is something you hear a lot from your patients as well.

There’s nothing you did. You got this for the same reason that people get hit by lightning. Nothing that they did.
Dr. Brody

Dr. Josh Brody: In the very beginning, when patients get diagnosed, a lot of questions [are] coming out of a place of fear, [which is] very natural and understandable. How did I get this? What did I do? As though someone wants to blame themselves for this. I guess it’s natural.

Our first thing is to go and say, “There’s nothing you did. You got this for the same reason that people get hit by lightning. Nothing that they did. You got this, primarily for most patients, because of one cause and one cause only: bad luck. That’s why you got this.”

Then we say, “In context, it could have been worse luck because there are worse things you could even have.”

Of course, the questions are, “What can I eat to make this get better? What vitamins can I take?” The answer is you should eat [healthily] and be healthy. Being healthy is not just about eating; it’s about physical activity and exercise.

We have a ton of data that physical activity and living healthy improves outcomes for cancers, for lymphomas. But we don’t micromanage and have a specific, “Oh, you need these blueberries, this green tea, this antioxidant.” Healthy eating [and] healthy living is critical, but the details [are] probably not critical.

Being healthy is not just about eating; it’s about physical activity and exercise. We have a ton of data that physical activity and living healthy improves outcomes for cancers, for lymphomas.
Dr. Brody

Immunotherapy for DLBCL

Stephanie, TPS: What can be critical is how much we know, as patients and caregivers or care partners, to make sure that we’re getting the best care.

The standard of care has been R-CHOP as a first-line [treatment] for people in aggressive chemotherapy. But if that doesn’t work for the patient, then there’s that gap. What can we go to?

There’s been this big focus on immunotherapy and we’ve heard about CAR T-cell therapy and that’s been approved in DLBCL. What was really exciting at [ASH 2022] is bispecific antibodies and that’s really had a lot of progress in research, too.

Dr. Brody: We were already lucky in lymphoma to have more progress than before. [In the] last couple of years, I would say the rate of progress has only increased.

If there’s a unifying theme of things that are being invented in labs by companies [and] in academia, it’s immunotherapy [or] using our patients’ immune systems to kill their own cancer.

People thought this was a bunch of hocus pocus 15 [or] 10 years ago. We’re going to use your immune system to fight this problem. But now, it is a real, measurable, making-people-live-instead-of-die thing.

The progress in DLBCL immunotherapy has been unprecedented, especially [in] the last couple of years. The most obvious examples are CAR T-cells. When I describe this science-fiction-like immunotherapy to my patients, they say, “But that’s not a real thing.” I say, “No, it’s real,” and then we describe it. It’s quite remarkable.

[There is] even this somewhat-simpler type of immunotherapy that I think will actually have [a] greater impact overall than CAR T-cells, which is this class of medicines called bispecific antibodies. [It’s] another immunotherapy that gets your immune cells to kill cancer cells.

The progress in DLBCL immunotherapy has been unprecedented.
Dr. Brody

CAR T-cell therapy in earlier lines of treatment for DLBCL

Stephanie, TPS: To be clear, the idea of using your own immune cells to kill cancer is an idea that’s been around but in the last few years is when we’re really seeing the impact of this.

Before we dive into this big buzz of bipecifics, let’s talk about CAR T. As some people may or may not know, there have been three CAR Ts that have been approved in DLBCL, but they’ve been approved for third-line of treatment. Again, the first treatment didn’t work, [the] second treatment didn’t work, [and] now we’re going to the third one.

Dr. Brody, as you mentioned, CAR T has been able to put many patients into deep, complete remission, which is what we’re looking for. But the last year has shown that CAR T can be promising even earlier on. Is that right?

Dr. Brody: Some big trials [are] showing remarkable benefit [with] CAR T-cells as second-line therapy — not as the first therapy, but as second-line therapy. They had to show that they were better than the standard in that place.

That standard for second-line was aggressive chemo and autologous stem cell transplant, which is just very aggressive chemo. It was focused on the highest-risk people, [those] with DLBCL who relapsed within the first 12 months. That meant a lot of people relapsed in month 3 [and] month 6. Some of them didn’t even relapse at all; they got no response at all from the front-line R-CHOP chemotherapy.

On these highest-risk patients, the benefit of CAR T-cells compared to the old standard was remarkable. Many more of them [are] staying in remission for months now. Now, at [ASH 2022], we have a year-and-a-half follow-up. One of those trials [shows] many more patients staying in remission.

[With] the old numbers with CAR T-cells, we thought maybe we were curing 35-40% of patients just with CAR T-cells. We’ll see if those numbers reproduce or might even be better now [by] using them in the second-line setting. That is for the highest-risk group of DLBCL patients that we’re talking about.

Bispecific antibodies are a real breakthrough class of medications for lymphoma and many hematologic malignancies… I like to refer to bispecific as the third big milestone in immunotherapy for lymphoma.
Dr. Falchi

Bispecific antibodies in the treatment of DLBCL

Stephanie, TPS: That’s really great. Let’s go into bispecific antibodies or bispecifics. Dr. Falchi, what is going on with them? Why are people so excited by them and how do they work?

Dr. Lorenzo Falchi: Bispecific antibodies are a real breakthrough class of medications for lymphoma and many hematologic malignancies, that is blood cancers. What makes them a breakthrough is they’re novel technology that really translated into very impressive clinical results and a real benefit for patients.

I like to refer to bispecifics as the third big milestone in immunotherapy for lymphoma. The first [is] monospecific antibodies, like rituximab that most people are familiar with in the field. The second [is] CAR T-cell therapy. I think the third would be bispecific antibodies.

Dr. Brody: Bispecific [antibodies are] actually very similar to CAR T. CAR T sounds so fancy. It’s hard to believe. We take some immune cells out of your blood. It takes a few hours, not too big of a deal. We put a new gene in them. The gene is called a CAR gene.

You put that CAR into the T-cells. Now they call them CAR T-cells. We take the blood out, mail this someplace — it used to be Santa Monica, now there [are] a few places — and then they mail it back to you. Then you reinfuse those CAR T-cells into the patient.

Bispecific antibodies [use a] very similar idea, just maybe a little simpler even. We don’t actually have to take T-cells out to make them recognize lymphoma. We put in a bispecific antibody.

Many folks have heard of rituximab. The regular antibody binds to one protein on one cell. [A] bispecific antibody binds to two cells. It binds to your lymphoma cell, binds to your T-cell, [and] brings them together. One of my colleagues said, “This is like the ‘Lady and the Tramp’ with the spaghetti in between them.”

At the very end of the spaghetti, in this case, it’s the kiss of death, because the T-cell kills the cancer cell. That “Lady and the Tramp” image is a pretty good one. I have to credit Dr. Matthew Lunning for the “Lady and the Tramp” metaphor. [With] that kiss of death, these T-cells are highly activated and able to kill. That immune cell kills that cancer cell quite effectively.

In folks where standard therapies didn’t work, where CAR T-cells weren’t working, it seems like more than a third of patients with these bispecific antibodies are getting complete remissions. Again, that’s the highest-risk group of patients. In the worst-case scenario, it seems like more than a third of them are getting complete remissions.

Even when the best things weren’t working, bispecifics, [and] epcoritamab in that case, [was] still highly effective.
Dr. Brody

Bispecifics in clinical trials

Stephanie, TPS: Let’s break down what we should be looking for in terms of bispecifics. As we know, these drugs are being developed in clinical trials. There are different phases where they’re bringing them to patients and seeing how patients do on them, studying dosages, and not just how effective they are in terms of how much more people can live without the disease but how well. What are the side effects? Which ones currently in clinical trials are expected to get approvals sooner?

Dr. Falchi: I think it emerged quite clearly that the two main actors in the world of bispecifics for patients with diffuse large B-cell lymphoma are epcoritamab and glofitamab. These drugs are both highly potent. Very, very powerful. In fact, before using them in patients, it was shown in experiments that their potency is exactly the same.

Dr. Brody: Because they have so many patients now, they really got to parse out the patients with high risk, super high risk, and all the different risk factors.

As we said, CAR T is very promising but a year or two ago, if CAR T failed, the options were not great. About a third of the patients in both the epcoritamab and glofitamab trials already had CAR T. CAR T didn’t work because it’s not a guarantee. It’s great, but it’s not a guarantee.

Epcoritamab or glofitamab — at [ASH 2022], we’re talking more about epcoritamab in that parsing of the data — [were] still giving complete remissions in more than a third of patients. Even when the best things weren’t working, bispecifics, [and] epcoritamab in that case, [was] still highly effective.

Glofitamab so far has some advantage in that all the recipes for them have been written as time-limited. You get 12 cycles and you’re done. Nine months of therapy and then you get a break.

Epcoritamab studies have been written so far to be continuous therapy, as long as it’s helping you and not hurting you. Whether we need to keep giving it for a long time, we don’t really know. At least, it’s a difference so far.

The other big obvious difference is that [with] epcoritamab, the way we [give it] is different. It is a subcutaneous injection, so it’s a quick little shot and you’re done. You’d almost think you could just get it at home, but we haven’t worked on that yet. Glofitamab is an IV infusion still.

Rates and severity of CRS for bispecific antibodies appear to be, at least at this stage, quite substantially different compared to what we see with CAR T-cell.
Dr. Falchi

Cytokine release syndrome (CRS)

Stephanie, TPS: We don’t have any FDA-approved bispecifics in the DLBCL space yet. The hope is that maybe there will be approvals sometime in 2023. This is information based on these research studies.

A very important topic is side effects and quality of life. We can extend life by X number of months or someone’s in remission for this amount of time. But we also truly want to understand: are we going to be able to live well while on this treatment or even once we get off of the treatment? Can you set the stage for what kind of side effects we’ve seen so far in the studies with bispecifics?

Dr. Brody: We talked about all the promises. We do not want to oversell this. There are also side effects of these medicines. The most significant or maybe concerning side effect of all of these bispecifics, really all these immunotherapies, is the risk that we push your immune system too hard and you get a reaction as though you had an infection, but there is no infection. It’s just that we pushed your immune system to react.

One version of that is a side effect [is what] we call CRS: cytokine release syndrome. CRS can be significant. [It can] make you get a high fever [and] make you get low blood pressure. If you get a [really] bad version of this, you have to be in the hospital for observation and sometimes for treatment of that.

With CAR T-cells, those high-grade CRS events were pretty common. They’ve gotten better as we’ve gotten more experience using them. With bispecifics, the numbers are better but that risk is still there.

For both bispecifics, epcoritamab [and] glofitamab, the standard today is that people have to get hospitalized for at least one day just to observe them after they get the first higher dose of that infusion.

Dr. Falchi: Both administrations are given usually without side effects. The main side effect that ensues a little bit later is something called CRS or cytokine release syndrome. For those who have experienced CAR T-cell, this is a very well-known adverse event.

It’s an inflammatory reaction where people can have fever [and] chills, their blood pressure could decrease a little bit, [and] there can be some confusion. It can be scary because it comes up quite suddenly and it may become quite apparent quite early. Very rarely, it requires hospitalization and may need care.

For the most part, we were very pleased to see, in both the epcoritamab study and the glofitamab study, that the percentage of patients who have a severe cytokine release syndrome is much less than 5%. The majority of patients will have some fever [and] chills, and generally, these will resolve within a day or two.

These rates and severity of CRS for bispecific antibodies appear to be, at least at this stage, quite substantially different compared to what we see with CAR T-cell, particularly Axi-cel, which is one of the most utilized products for diffuse large B-cell lymphoma.

In the CAR T-cell studies, we’re looking at [a] double-digit percent of higher grade CRS. For that reason, most patients, particularly those who are a little bit more advanced age, need to be hospitalized for several days after receiving CAR T-cell.

For bispecific antibodies, we’re looking at a 24- to 48-hour hospitalization. We’re confident that in the future, as we gain more experience, there is a possibility that these drugs — [which are] off-the-shelf products so [they are] immediately accessible — can be given on a fully outpatient basis without having [to be] admitted to the hospital.

Although none of these [bispecifics] are currently approved by the FDA, it is hoped that one or more of them will be approved in the near future because of such promising results.
Dr. Falchi

Deciding whether to give bispecific antibodies or CAR T-cell therapy

Stephanie, TPS: To be clear, we’re not saying that with bispecifics being so promising if they are approved, they’ll erase the need for CAR T-cell therapy. But what we’re talking about is there are details that are coming out in this research that will help doctors, patients, and care partners determine the best treatment path for each individual.

Some of those factors include what is available [and] what is quicker to get because sometimes, time is going to be a big factor. What are the side effects? How long would someone need to be monitored in the hospital or the clinic for side effects that are more severe, like CRS, the way you’ve both described?

Is there anything else that you would consider in making the treatment decision about whether someone should go on a bispecific or CAR T?

Dr. Falchi: On a logistical basis, CAR T-cell therapy is quite an involved therapy. It needs to be administered by specialized centers.

In the US, there [are] many such centers, but they’re not everywhere so it’s important to know where these centers are [and] who can administer those therapies. Doctors have to be certified. Centers have to be certified. It is not a therapy that everyone can give.

They require hospitalization for the majority of patients. Some patients can receive CAR T-cell therapy on an outpatient basis but for now, I would say, that’s a minority of patients. The majority will require hospitalization and monitoring. Even after discharge, oftentimes patients will be required for a period of time to stay in the area where [the] CAR T-cell therapy was administered.

In the post-CAR T-cell therapy period, there’s periodic monitoring where the doctors will want to look at blood counts, other blood work, or scans multiple times in the months ensuing CAR-T cell therapy.

As far as bispecific antibodies are concerned, these are drugs that are administered either subcutaneously or intravenously for the most part, on an outpatient basis. And this is important because although none of these drugs are currently approved by the FDA, it is hoped that one or more of them will be approved in the near future because of such promising results.

Therefore, it’s important for us as academic clinicians and for our colleagues to become very familiar with this product. I think, really, the point to make about these drugs is that they can be safely administered as outpatient therapy. Their main side effect, which is cytokine release syndrome or CRS, is something that is to be expected in a certain percentage of patients and we all will need to become familiar with it and how to manage it promptly.

Management of CRS from bispecific antibodies has not been as “complicated” as it has been for CAR T-cell therapy in the sense that drugs like acetaminophen, drugs like steroids including prednisone or dexamethasone, which are drugs that we very commonly use and most patients are familiar with, are the mainstay of therapy for most cases of CRS related to bispecific antibodies.

Only rarely will patients treated with bispecific antibodies need [a] higher level of care that includes hospitalization and other drugs that are used to calm down a more severe CRS.

With these easier-to-use bispecifics, the next step is how we can combine them with some standard therapies.
Dr. Brody

Bispecifics given as single agents and in earlier lines of treatment

Stephanie, TPS: Bispecifics right now [are] being studied both as single agents, meaning just the bispecifics alone, but also in combination with other treatments that are already being used. We’ll have to see how those turn out.

As we’re also talking about different bispecifics, we know that they’re being tested for later lines — third, fourth, fifth — and then typically what happens is the research tries to move them earlier.

Dr. Brody: The real future of that is not just how good they are alone because we never really cured any cancers alone. We don’t cure some DLBCL patients with C; we cure them with R-CHOP. Combinations are the basis of oncology.

With these easier-to-use bispecifics, the next step is how we can combine them with some standard therapies. That’s already being done. We have some data about that at the ASH [2022] annual meeting and those response rates are extremely high. That is the future.

For now, it’s third-line patients where everything else has failed, but they are very quickly moving up into the second line. We have some data about the second line.

We’ve already started studies bringing them into the first line in combination with standard therapy. It’s a rate of progress. We’re very lucky.

The luckiest thing would be to have no cancer at all, but if you had to have something, [it’s] better to have something where the progress is being made this quickly.

Dr. Falchi: As single agents, I think what we’ve seen is that now, with longer follow-up for these studies, some of those individuals who had a very good response early on tend to maintain that response. There is a suggestion that some of these patients may become long-term disease-free. In other words, being alive and well without evidence of disease at a relatively long follow-up time.

We’re all very cautious toward the word cure, but we certainly believe that there is a potential for these people not to have a recurrence.

[The goal of] adding epcoritamab to that second-line platinum chemotherapy [was] just trying to get complete remission rates up high enough that the transplant would work better.
Dr. Brody

Epcoritamab for transplant-eligible patients who didn’t do well post-transplant

Stephanie, TPS: Thank you, Dr. Falchi. One example is a study that was presented on patients who are eligible for transplant but didn’t do well after the transplant so they’re studying epcoritamab or epco for these patients. What was the main takeaway there?

Dr. Brody: There’s one abstract about epcoritamab plus this aggressive platinum-based chemotherapy. R-DHAOx or R-DHAC are aggressive, platinum-based chemotherapies that are usually a plan B.

Plan A [is] something like R-CHOP and if it doesn’t work, plan B for younger, healthier patients would be to get platinum chemotherapy [like] R-DHAC, R-DHAOx, [or] other similar ones. R-ICE is another similar one there. They’re all just platinum chemotherapies. If it works well, then [they] go on to autologous stem cell transplant.

Stem cell transplant sounds a little elegant because stem cells are involved, but it mostly involves tough chemotherapy. Folks are hospitalized for a while and out of work for a while.

[The goal of] adding epcoritamab to that second-line platinum chemotherapy [was] just trying to get complete remission rates up high enough that the transplant would work better.

In that trial, although patients intended to go on to stem cell transplant, some patients that got complete remission with just epcoritamab plus platinum chemo never did go on to the transplant and are still in remission at beyond a year now.

We cannot yet say if those patients are cured. They may be. A little more follow-up would hopefully confirm that. Epcoritamab is clearly making that chemotherapy work much, much better.

Dr. Falchi: We participated in that study and the early results on a relatively small number of patients appear very promising.

For those patients who are able to complete the program, their chance of response was 100% and the majority of them were complete response, meaning that lymphoma really disappeared. Obviously, we don’t know what’s going to happen in the long term, but there’s certainly a very, very good start.

Importance of patient-reported outcomes

Stephanie, TPS: That sounds so promising. One thing we’d like to highlight is that research relies so heavily on data, on the numbers, and that’s for a very good reason. Putting the numbers and percentages into context is really important.

Some of the research presented at the conference is called PRO or patient-reported outcomes. Very simply, it’s something I hope there’s a lot more of because it gives that context.

There was one report for epcoritamab on quality of life where 61% of interviewed patients reported [a] positive impact on their daily activities after being on the bispecific. Around 40% reported a positive impact on physical, emotional, and/or social functioning and 80% of patients reported being “very satisfied or satisfied with treatment.”

Now, again, [we] want to stress [that] this was a limited sample size. It was in this clinical trial of more than 100 patients. But I do want to ask you, Dr. Brody, why is this information so important to study?

Dr. Brody: Patient-reported outcomes are critical because the other version of that kind of data is so unfulfilling. It is just these kinds of graphs of adverse effect frequencies but that does not tell the story.

If someone had grade-3 toxicity for 20 minutes or for two years, it adds up as the same on the graph. It’s just they had a grade-3 toxicity.

A human experience is that 20 minutes [is] not so bad. Two years? I would rather have a grade-3 toxicity of many types for a day than have a grade-1 toxicity for a year. Grade-1 toxicity for a year, you maybe can’t go to work or can’t work well.

That’s why patient-reported outcomes [are important] especially, I think, for these immunotherapies, especially for bispecifics.

This main side effect for bispecifics, the most common one, is cytokine release syndrome. It can be bad. It can be serious. You can end up in the ICU from it.

The nice thing about it is people either have it or they don’t. Maybe 20% of people have a bad version of that immune overactivation and [for] those that do, [it] mostly lasts for about a day or two. Then they pretty much don’t ever have it again. That is a grade-3 toxicity, but for most people, it is two days, God-willing, out of their life.

The way we normally report these in meetings, abstracts, and publications falls short because the patient’s perspective is that a two-day side effect is not the same as a two-year side effect. It’s totally neglected in the way we present the data. That’s why the patient-reported outcomes are critical and why the numbers, I think, are very promising for these types of immunotherapies.

These are breakthrough therapies that offer hope to a substantial proportion of individuals, of people that would otherwise have very little outlook suffering from a recurrent lymphoma that can be unforgiving.
Dr. Falchi

Breakthrough therapies for DLBCL offer hope

Stephanie, TPS: Asking patients for their perspectives is so important and, again, something I hope will trend in that upward direction.

What is the general takeaway for DLBCL patients and for their loved ones as we go deeper into 2023?

Dr. Falchi: My general takeaway about bispecific is one of great excitement. It is my line of research because I truly believe that these are breakthrough therapies that offer hope to a substantial proportion of individuals, of people that would otherwise have very little outlook suffering from a recurrent lymphoma that can be unforgiving.

Opening avenues of hope for patients with diffuse large B-cell lymphoma that recurs after one or more lines of therapy, which is very, very challenging to deal with, is something that I think we’re all excited about. I’m personally just looking forward every day to what’s coming next and how many more people we can cure hopefully more and more each day.

Stephanie, TPS: Thank you so much, Dr. Falchi and Dr. Brody. So excited by the things that were discussed. We couldn’t cover everything that’s happening. We’ll definitely be putting on more conversations for people who are wondering more comprehensively what’s available out there.

The numbers are promising, but how soon are we going to see this at our hospital or at our clinic? Will it be accessible? What are the side effects? Will I be able to live life while I’m on this treatment?

With everything that’s happening right now, it is so important to be up to speed on the latest that’s happening so that you can ask those questions of your doctor and make sure that you or your loved one is getting the best care possible. Remember, you are not alone.

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

DLBCL Patient Stories

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Lainie’s Multiple Cancer Story

Post author By Katrina Villareal
Post date January 9, 2023
No Comments on Lainie’s Multiple Cancer Story

Lainie’s Multiple Cancer Story

After feeling a lump in her breast, Lainie never thought she would be diagnosed with stage 2 breast cancer at 24, especially after beating cancer when she was 18 months old.

By the time Lainie was 26, she had been diagnosed with four cancers and then a fifth one only a few years later.

She shares how she’s been diagnosed with adrenal carcinoma, breast cancer, melanoma, thyroid cancer, and sarcoma. She discusses the different treatments and surgeries she’s undergone and how being an advocate for her health has saved her life.

She opens up about how she lives with Li-Fraumeni syndrome, a rare disorder that makes her more susceptible to growing cancer, her experience of hair loss right before her wedding, and how her support system has been crucial to her cancer journey.

Name: Lainie J.
Diagnoses:
- Adrenal carcinoma
- Breast cancer (Stage 2, HER2+)
- Melanoma
- Thyroid cancer
- Sarcoma
Initial Symptom:
- Lump in breast
Treatment:
- Chemotherapy: for breast cancer (2008 & 2012), for sarcoma (2015)
- Radioactive iodine: for thyroid cancer (2010)
- Surgeries: adrenalectomy (1985 & 2021), double mastectomy (2008), thyroidectomy (2010), total hysterotomy (2010), manubriectomy (2013) sarcoma surgery (2015), multiple surgeries for recurrence
Maintenance Treatment:
- Tykerb
- Herceptin (every 21 days)
Follow-up Protocol:
- Whole body MRI and visits at MD Anderson (every 3 months)
- Visit doc (every 9 weeks)

That’s something that I live with every day now. I have this gene and my body’s susceptible to developing cancer.

Table of Contents

Introduction
Pre-diagnosis
Diagnosis
Treatment
Importance of a great support system
- Did your parents being cancer survivors impact you in any way?
Being your own advocate
Importance of documentation
Words of advice
How far we’ve come with cancer research and treatments

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

Introduction

My husband and I live in South Florida [and] moved back from New York. I am 38 years old. We’ll be celebrating our 20th dating anniversary [in 2023]. We’ve been married [for] 10 years so he’s been with me throughout my cancer journey.

We have two wonderful little Boston terriers. I love shopping. I love going to the beach. I love being outdoors, doing fun things, and spending time with family and friends.

My first cancer diagnosis was when I was 18 months old… I had adrenal carcinoma.

Pre-diagnosis

Can you describe some of your first symptoms?

My first cancer diagnosis was when I was 18 months old so obviously, I don’t remember many of those. I had adrenal carcinoma.

Growing up, I knew that I was a cancer survivor and that cancer was a part of my life at some point but was too young to remember. It led me to being a nurse.

I turned into a hypochondriac [by] becoming a nurse because when you’re in school and you’re learning about all these things, you constantly think something’s wrong with you.

I was late [to] the nursing school game. I switched my career path. I started in fashion and then I’m like, “No, I want to go for what I have always dreamed to be, [which] is a nurse.”

I was doing a self-breast exam [in] July 2008 and I felt the lump. I went to my OB-GYN and he felt a lump, too, and he gave me a prescription for an ultrasound. I neglected to do it because I’m like, “I’m 24. I’ve already had cancer once. There’s no way I can get cancer again, right?” That was just my mentality so I neglected to do it.

Six months went by and it was December. My parents were like, “You need to go get the rest of your scans because you’re turning 25 and you’re going to be off of our health insurance,” so I got all my tests done. I went to my OB-GYN again and I’m like, “You know, I think the lump got bigger.” So he ordered a mammogram. I didn’t have any symptoms. It was mostly just a lump that I had felt for my initial breast cancer diagnosis.

‘I’m 24. I’ve already had cancer once. There’s no way I can get cancer again, right?’

Did you go get the mammogram or the ultrasound?

Yeah. It was the end of the year. I went to go get a mammogram. I went to this guy in South Florida who read mammograms right away. We went there and he read my mammogram.

I’ll never forget him telling my mom and [me]. He read it to us right there. He’s like, “It doesn’t look good.” And we were like, “What do you mean?” Here I am, just about to start nursing school, three and a half [to] four weeks away, and he’s like, “I want to do a biopsy.”

He ended up doing a biopsy and I was diagnosed with stage 2 breast cancer at 24 years old. It was two weeks before my 25th birthday. It was pretty crazy, pretty shocking. I never thought that I’d become [a] patient, let alone not be a nurse.

I didn’t go to nursing school because I had to have surgery. I did a double mastectomy and then I went through 12 weeks of chemotherapy.

I was diagnosed with stage 2 breast cancer at 24 years old… two weeks before my 25th birthday.

Were there any other symptoms other than the lump?

No other symptoms. I was perfectly healthy.

I’ve had multiple cancers. I’m very fortunate — fortunate, unfortunate — [that] I don’t have any symptoms. I feel great. I always say that the craziest thing about cancer is sometimes, you don’t have symptoms, but that’s a good thing, right? Because then you catch it early and that’s so important to me. Spreading awareness and creating the importance of early detection because that’s truly what’s saving my life.

Diagnosis

When you felt that lump, did you ever think this could be cancer? How did you process that diagnosis when you heard those words?

I always felt like my intuition told me that something wasn’t right but then I was also going into nursing school so I’m just like, “Maybe I’m just overthinking these things.”

As a person, I was always extreme. Everything was always just me making things up in my head that it’s worse than it really was. I never thought it was going to be anything. I thought it was just going to be maybe a cyst or something.

When I was diagnosed, I literally was shocked. I couldn’t believe it. When you get a diagnosis, you’re like, “Oh my god, I’m going to die.” Literally, that was the first thing that I said to myself. “I’m too young. I don’t want to die.”

I think the scariest part for me was having to get additional scans after that because you worry. You’re like, “Where is it?” I just always feel like [with] cancer, sometimes you don’t have any symptoms. My bloodwork was never abnormal so I didn’t really have any symptoms.

In that moment, it was a pure state of shock. I processed it. Then I think what really helped me was I spoke to a volunteer through the American Cancer Society Reach To Recovery program. She was like 60 years old, I want to say. I didn’t know her. It was just a phone call and it was about 48 hours after I came home from my double mastectomy. I was like, “Wait. If she’s 60 and I’m 24 and she survived breast cancer, I can do this, right?” That’s why I think it’s so important what you guys are doing because it’s really just giving another lens.

We need to take away that stigma of thinking of cancer as a death sentence and think of it with a positive attitude. That’s so important. I know it’s easier to say than done, but I always tell people I cried for one day and that was it. I said, “You know what? I’m going to do this.”

Unfortunately, there [are] so many younger people being diagnosed, especially with breast cancer. At that time, I was like on a lone island. There [were] not a lot of people who had breast cancer. It was 2008 — not a lot of people my age. I did meet a few young people. I was so grateful that I had an amazing, supportive family and I had an incredible husband who stood by my side the entire time.

Getting tested for Li-Fraumeni syndrome

When I was diagnosed with breast cancer at 24, I was tested for the BRCA gene. I did not have it so in my oncologist’s mind, “You don’t have BRCA. I think it’s just kind of like maybe a hormonal thing that you got breast cancer.”

When I got melanoma, I started to really question. I’m like, “Again, something’s not right. I’m 25 years old. I’ve had three cancers. This is crazy.”

My mom and I were listening to Doctor Radio on SiriusXM and they were talking about adrenal cancer and this genetic predisposition called Li-Fraumeni syndrome. They were basically saying that if you’ve had adrenal cancer, there’s a 90% chance that you could have Li-Fraumeni syndrome. We’re just like, “This is crazy.” At the time, again, genetics were not widely talked about. It was really just BRCA.

I asked my doctor if I can get tested for this gene. He’s like, “Yeah. I doubt you have it. That’s a textbook thing.” So I was like, “Okay, fine.” He told me I was negative. And you trust your doctors. Again, you have to trust your gut. You always trust your doctors, right? But also make sure you get that physical piece of paper. I didn’t do that.

Age 26 comes along and I get my one-year follow-up for my breast cancer. They did the whole body PET scan. The next day, the doctor calls and he’s like, “There’s a really big mass in your neck and it spread to your chest.” It ended up being thyroid cancer.

I had to go to an endocrinologist and I’m just like, “What? I’m 26 years old and already I’m at four cancers. And I’m told I don’t have Li-Fraumeni syndrome.” That was in the back of my head.

At that time, my endocrinologist, my surgeon they sent me to MD Anderson. That’s when you know you have amazing doctors. They’re like, “We’re not touching you anymore. We’re done touching you here in Florida. You need to go to a cancer-specialized hospital because something is just not right.”

The first question they asked me when I got there was, “Have you been tested for Li-Fraumeni syndrome?” And I’m just like, “Yeah! I’m negative.” I did end up having it and I was never correctly tested.

I don’t hold grudges. Maybe he didn’t know. He just thought it was textbook. Maybe he did the wrong test. Whatever it was. People are always like, “You should go back to that doctor. That’s terrible.” I’m like, “No. It’s fine.” I’m just moving on and now I know I have this genetic predisposition.

Lainie J. outside MD Anderson Cancer Center

For me, it’s so important because it really changed my protocol in my testing. I was getting PET scans all the time. PET scans and CT scans [are] not good for somebody with Li-Fraumeni syndrome because of the radiation.

My parents, thank God, don’t have it. Neither do my brothers. They don’t have Li-Fraumeni syndrome. Nobody in my family has it. But my parents are both cancer survivors, but they don’t have the gene. We are also Ashkenazi Jewish, so a lot of times, that could be a triggering factor.

Being diagnosed with 5 different cancers

I was getting those tests because that was the standard protocol. When I started getting the PET scans, things changed. I always say it’s just so crazy.

I feel so lucky that we’ve come a very long way [from] when I was diagnosed in 2008 until now. Sometimes it’s very hard for people to see that. But I’ve been living it. I see people, like myself, who were diagnosed in 2008 and things were different. Everything was different.

I always tell people, as weird as it sounds, it’s a good day and age to have cancer. There [are] so many options out there. People are living with this disease and thriving.

I’m on maintenance chemotherapy for the rest of my life and it’s literally keeping me alive. I tell people, “You take blood pressure medicine every day. I take chemotherapy and it’s amazing.”

There was a mole on my back… and it ended up being a melanoma… Here I am. I’m 25, now with three cancers and I’m just like, ‘What is going on?’

Treatment

What was your treatment?

I’ll just backtrack a little bit. When I was diagnosed, I was treated, I like to say, as the typical breast cancer patient. I went in. My doctor knew I had adrenal cancer as a baby. But again, that time, seeing a 24-year-old was kind of rare. I [had] a standard treatment. My breast cancer was HER2-positive so I had the HER2 receptor gene. I think I did TCH. My memory is completely fogged because I’ve done chemo a lot. It was like a TCH combination — Taxotere, Carboplatin, and Herceptin. Then that was it.

I did a double mastectomy initially, then I did expanders, and then I had the expanders transferred out for regular implants. I lost my hair, of course. My treatment stopped in July of 2009.

Then there was a mole on my back and my mom’s friend was like, “Oh no, I know she has a lot going on, but I just want to let you know, she needs to get that mole looked at.” I got it taken off and it ended up being a melanoma, which was crazy. Here I am. I’m 25 now with three cancers and I’m just like, “What is going on?”

I think the important thing is, and this is something I really kind of learned along the way, a lot of times people go to a breast oncologist who specializes in breast oncology and that’s amazing, right? If you just have breast cancer. But something I learned is, a lot of times, when you have one cancer, you could get two cancers. It’s something I never knew.

I never look back but something that I would have done a little different is gone to a general oncologist given my history [of] adrenal cancer. Sometimes that’s not spoken about a lot is that if you’ve had multiple cancers, maybe it’s better to be with a general oncologist.

In that moment, my oncologist was like, “Well, I only do breast cancer.” So then I was kind of like, “Oh my god, I’m stuck here.” I don’t know what to do. This is my third cancer. Something’s not right.

Did the treatments overlap?

I have a little bit of breaks in between. I did the chemotherapy first for breast cancer and then I don’t think I was on anything. I was always on Herceptin though till a certain amount of time after my treatment.

Then [for] the thyroid cancer, I had what’s called RAI — radioactive iodine. I was in the hospital for three days. That never overlapped with the breast cancer because I wasn’t on anything.

Then there was a point where I think I was on oral chemo. I did have some intermittent metastatic reoccurrence. Those were treated with oral chemo and then I did radioactive iodine.

I can’t remember if they overlapped but I think if they did, they stopped and then started.

In 2011, I was re-diagnosed with breast cancer and I think it was one or two lymph nodes. They did stop my Herceptin and the Tykerb that I was on initially and another drug called Xeloda. I was off of it for eight months and this lymph node showed positive.

I was at MD Anderson at the time so I saw breast oncologist there and they’re like, “We want to take an aggressive approach with these two lymph nodes because it’s concerning that your cancer came back and you were on a chemotherapy and then you stopped it. So something’s not right.”

I was eight weeks away from getting married. I was so bummed.

We were together seven years before we got engaged. My running joke with my husband was, “You cannot propose to me until my hair is long.” Then it turned out, I had to lose my hair four weeks before my wedding. But it’s okay. Everything happens for a reason.

They did aggressive chemotherapy. In 2012, I had radiation, which was a little risky because of Li-Fraumeni syndrome. But, thank God, I have not had a reoccurrence of breast cancer since 2012. The radiation really helped, but it led to also another cancer.

It’s crazy but they knew it could cause another cancer so the doctors aggressively watched me. Every three months, I would get whole body MRIs and ultrasounds. In 2015, they caught three tiny spots of sarcoma in my chest wall through an ultrasound.

Again, back to early detection. I’m on top of my health. They caught it. I ended up having to do a different type [of] chemo again, super aggressive, in 2015. But in between all of those, I’ve always been on Herceptin. That’s a drug I’ve been on and still on it to this day. Since 2012, I’ve been on it consistently, every 21 days. [I’ve also been on] a pill called Tykerb, though I did stop when I had my sarcoma because it contradicted [with] some of the meds. But they always added Herceptin to any type of chemotherapy I was going through.

Learning that your cancer treatment caused another cancer

As crazy as it sounds, I feel like it was like a watch and wait. I think that that’s something that I live with every day now. I have this gene and my body’s susceptible to developing cancer. That’s literally what it is.

I tell people I live my life in three-month increments. I go to Houston every three months, get whole body MRIs and ultrasounds, and see my doctors there. I tell myself if there’s something there, it’s only three months old. It really helps me process everything. I’m very fortunate.

I always put a disclaimer. Everybody is different. Everybody’s cancer journey is different so never compare yourself to someone else. Somebody might be [reading] this and say, “Oh, I have Li-Fraumeni syndrome. That means I need to get my whole body MRIs every three months.”

I think every single person is their own patient. That’s why I love going to MD Anderson because they treat me like I’m not like the patient who was in there before or the patient after.

Of course, I get scanxiety. I’m human. I live with that. In the moment, if there is something there, I freak out like any human would. Then I just tell myself, “It’s only three months old.” So that’s really where I’m at with everything.

Did I know that I was going to probably get another cancer from radiation? Yeah. Is there still a chance that I could get another cancer from that radiation? Absolutely. It’s just the life I live. I’ve chosen to just take it and turn it into my purpose and not dwell on it. It’s out of my control.

What were some of the side effects from treatments?

Nausea was the worst. I think that that was terrible. I did a lot of lemon ice cubes. I made my own ice cubes with lemon drops in them.

Every treatment was different. Neulasta was terrible for me. A lot of people don’t have that.

Dairy was something I loved eating. It was so weird. Each chemotherapy, I had different cravings. I always say it was like being pregnant. I had all these crazy, weird cravings. I was craving feta cheese at one point.

How did you deal with the side effects?

Just exercising, like walking, making sure you’re moving [and] hydrating.

Mind over matter. Staying positive. You can have your days. It’s okay.

And just living in the moment and making the best of a crappy situation. Lemons into lemonade, as cliché as that sounds. Surround yourself with positivity. That’s really what helped me get through everything.

What was going through hair loss like for you?

Losing my hair the first time was the hardest thing for me. I want to say I was vain, but my hair was my favorite part about myself. That was my thing. I had a wig and it grew back.

I told my husband he can’t propose to me until my hair is long and then I had to lose my hair. I actually had my wedding photographer document my head being shaved right before my wedding, which was so amazing. I was known as the Cancer Fighting Bride.

Losing my hair was probably the hardest time. It was not the bride I envisioned [myself] to be. I didn’t look like myself. I was on steroids for chemotherapy and I just didn’t feel like myself.

I look back at the pictures and I’m like, “Oh, God, I didn’t look like who I was.” But my husband’s like, “You’re here. And that’s all that matters.” I think that that’s something to always remember. Never lose sight of what is going on, especially for people who are brides. It shifted life into perspective.

Your wedding isn’t about the flowers, what everybody’s wearing, and all that drama that goes along with it. It’s about the people surrounding you in that room and the person you’re marrying. It’s all about love and family. And that was really captured at our wedding and through our incredible photographer.

When I had to lose my hair the third time, I’m just like, “Okay, whatever.” At this point, it is what it is. I’m just like, “You know what? This time, I don’t want to shave it. I want to see what it’s like for it to come out. Let’s experiment this.” Then I ended up shaving it.

Each time was different and it sucks, but your hair grows back. That’s something to always remember. There [are] cold caps nowadays that people do and so many great things now that you don’t have to necessarily lose your hair, but also amazing wigs.

You’ve got to find the positive in everything. Not having to do your hair every day and just slapping on a wig was the best thing ever. During my wedding, my hairdresser did my hair and it stood on a stand [while] I was able to just roam around and get my makeup done. It was like killing two birds with one stone.

What is your current maintenance treatment?

I take oral chemo every day and then I get Herceptin every 21 days. Thankfully, the only side effect I get is some headaches. But other than that, it’s very easy.

I have such an amazing support system. It takes a village. I couldn’t do this on my own.

Importance of a great support system

I’m so grateful. I just feel like my whole family, everybody… My husband is a saint. He sometimes has to remind me, “You got to stay on top of your health.” I mean, I’m always on top of my health but he reminds me [about] certain things. He’s so incredible, too, because not everybody is that lucky.

I have such an amazing support system. It takes a village. I couldn’t do this on my own.

Did your parents being cancer survivors impact you in any way?

Totally. All I can say is God bless our caregivers. I’m a hypochondriac and I’m neurotic so I was crazy. It’s funny being on the reverse end because I was never in that seat.

My parents, thank God, are both doing great. My dad had prostate cancer and thank God my parents are really diligent about their health, too, just given what I’ve gone through, which I’m also so fortunate about.

My mom had a rare blood cancer called myelofibrosis. She ended up having a bone marrow transplant and she, thank God, is doing amazing. She had an anonymous donor who she fortunately got to virtually meet a few years ago. [The] donor was a 12 out of 12 match. That process she went through was eye-opening and scary.

I can see where I get my strength from — my parents. I work at the American Cancer Society. I tell people this is our purpose in life. We are a family who rallies together to really just make a difference.

I’m so grateful I have my parents as my examples. They would probably say that I’m their example but I think we all feed off of each other’s energy. We’re just very lucky that we’ve had great outcomes.

I have a lot of cancer in my family, too, so it’s crazy. My mom’s parents, unfortunately, passed away from cancer, but my dad’s parents lived till 94 and 96. It’s a good situation to be in, right? I have cancer and longevity.

Being your own advocate

It’s so important to trust your instincts. Doctors are amazing. It’s okay to have another opinion. I think that’s so important if that’s something that’s very important to you.

You need to feel comfortable with your physician. That’s so important. Making sure if something is not right, you know your body best. You live in the skin you’re in. You know your body the best and if a physician is not willing to act on it, move on.

If somebody calls me and they’re newly diagnosed, don’t get too many opinions. You can drive yourself crazy with opinions. Narrow down to [whom] you feel the most comfortable with. You could get so many opinions then by the time you find somebody that you really like, it’s too late. That’s really what it boils down to. Listen to what your heart is telling you, really.

Importance of documentation

It’s very important to get everything. I always ask for my blood work. We live in a virtual world these days. Have everything in hand, make a file folder, and keep everything, as annoying as it sounds. Or just get the paper, scan it, and throw it away. Visibly see them.

Even if you look at it and it’s in your MyChart, once they give you your results, always take them and look at them so you understand what’s going on and make sure that that’s exactly what you see and what they see. Doctors are very busy people. We’re all humans. We all make mistakes. That’s definitely a lesson I learned. I always get my paperwork.

I’m old school. I take all my paperwork with me. I think really just following through. I always revisit all my tests.

Every time I get a scan, I ask for it and put it in a file folder. Then I really make sure I have everything together. Review it.

A lot of times, I get rid of them just because everything is in like a MyChart but I like to review everything. It’s just one of those things. I review everything in detail. I have no adrenals and my scans sometimes say that my adrenal is present and I question.

It’s okay to ask questions. It’s so important. Always ask questions. If there’s something you’re a little confused about, ask. The worst thing they’re going to say is, “You’re fine. Don’t worry about it,” or it raises a concern.

I had an incident a few months back when I was in Houston and I had blood work. My BUN was elevated and the doctors weren’t concerned. It was elevated two points, nothing crazy. But I asked. It didn’t look right and it was higher than before.

Never be afraid to ask a question. Like I said, we’re all human and things can get overlooked. Most of the time they’re nothing but it just shows you’re doing your due diligence.

Words of advice

If you feel something that’s not right or something wasn’t there that you were born with or something looks abnormal, even if you’ve never been diagnosed with cancer, go to your primary care physician or go to your oncologist. If something’s not right, again, you know your body best so you need to speak up and say something. It’s so important.

Having a positive attitude

I think my purpose is to help others and that has really helped me through my journey. When somebody is diagnosed with cancer, I’m always the first person they turn to, which is totally cool with me. I’m there to help people. I’ve turned my diagnosis into my purpose.

As much as people think it might define who I am, I let it empower who I am. It’s really helped me get through things.

At the end of the day, life could be so much worse, as crazy as it sounds. I’m so grateful that I’ve been able to shift everything and shift my mind.

It’s not always easy. Cancer is not sunshine and rainbows and I know that. But I think, for me, I just really hope that my story helps others and not let people be scared of cancer. Because a lot of times, people delay getting screened or delay getting something because they’re scared they’re going to get cancer.

It’s so important not to delay any of your screenings and stay on top of your routine screenings year after year. Early detection is really a testament to why I’m here today. It saved my life.

How do you deal with scanxiety?

It’s really just the three-month thing. That really just helps me. I just stay positive. It’s that saying, “It is what it is,” and that’s really what it is.

Just knowing that I’m able to have those scans every three months and knowing that if there is something there, it’s not that old. That’s just really kind of what gets me through it.

How far we’ve come with cancer research and treatments

It’s a good day and age to have cancer. Treatments have come such a long way. From when I was diagnosed in 2008 till now, everything has changed immensely, which is so incredible.

There’s people taking pills right now for cancer, not having to lose their hair, and not having as many side effects. I think that that’s just so incredible.

If that can be any hope and push for those to get screened, I think that that’s so important because there’s so much out there. The most important thing is to catch it early and not ignore any type of symptoms. Even if you don’t have symptoms, if you just feel something, don’t ignore it.

It’s so important not to delay any of your screenings and stay on top of your routine screenings year after year. Early detection is really a testament to why I’m here today. It saved my life.

Thank you for sharing your story, Lainie!

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The Latest in Hodgkin Lymphoma

Post author By Katrina Villareal
Post date January 2, 2023
No Comments on The Latest in Hodgkin Lymphoma

The Latest in Hodgkin Lymphoma with Matthew Matasar, MD

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!

Table of Contents

Introduction
Tell us about your journey into medicine
What’s new at ASH 2022 on Hodgkin’s lymphoma?
How do chemotherapy and immunotherapy work?
What does staging mean in cancer?
Where do PET scans fit in the treatment plan?
Where does radiation fit in all this?
Survivorship & patient care
Advances in the treatment of the relapsed/refractory Hodgkin
Any words of advice to patients and caregivers?

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

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.

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.

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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Tags ASH 2022, hodgkin event

Medical Experts Medical Update Article Myeloma

Multiple Myeloma in 2023

What Patients & Caregivers Need to Know Now

There are so many developments happening in multiple myeloma! While this is wonderful, it is getting harder to keep track of all the potential updates and changes for those living with and caring for a loved one with myeloma.

The Leukemia & Lymphoma Society (LLS) and The Patient Story bring you this program out of the biggest blood cancer/disease conference every year where top doctors and researchers discuss the most important updates (American Society of Hematology, or ASH) which took place December 2022.

Long-time myeloma patient and advocate Jack Aiello leads this conversation with Dr. Joshua Richter, Multiple Myeloma Director for Blavatnik Family Chelsea Medical Center at Mount Sinai, and Dr. Muhamed Baljević, Plasma Cell Disorders Research Director for Vanderbilt-Ingram Cancer Center.

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

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

Table of Contents

Introduction
Cutting back on the use of dexamethasone
What are bispecific antibodies?
How soon will patients be able to start on bispecifics?
When will bispecifics be available in Community Cancer Centers?
What is cytokine release syndrome?
Will bispecifics be given in the outpatient setting?
Thoughts about patients needing hospitalization with bispecifics
Limited duration treatment with bispecifics for relapsed/refractory myeloma patients
Who would qualify for bispecifics?
What is the overall takeaway from CAR T-cell therapy?
How do you choose CAR T or bispecifics and in what order?
Updates on CELMoDs
What role do ‘novel therapies’ play?
Understanding what dose is best for selinexor
How do we include more diverse populations in clinical trials?
Conclusion
Follow-up questions

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.

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.

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

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. 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.

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.

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.

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. 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?

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.

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. 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.

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.

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.

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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Bethany’s Stage 4 Metastatic Breast Cancer Story

Post author By Katrina Villareal
Post date December 22, 2022
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Bethany’s Stage 4 Metastatic Breast Cancer Story

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.

Table of Contents

Starting a new life in Colorado
Relapse
Treatment
Follow-up protocol
The importance of self-advocacy
Living with stage 4 cancer
Words of advice

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 who 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.

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.

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.

I finally got 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 were 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.

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.

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

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.

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.

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

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 »

Thank you for sharing your story, Bethany!

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Maggie C., Triple-Negative Breast Cancer, Stage 4 (Metastatic), PD-L1+

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Treatments: Chemotherapy, clinical trial (antibody-drug conjugate and immunotherapy)

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Symptoms: Hardening under the armpit, lump & dimpling in the left breast

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Sherri O., Metastatic Breast Cancer, HER2+ & Colon Cancer, Stage 3
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Treatments: Surgery, chemotherapy, immunotherapy, radiation

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Bethany’s Stage 2 ER+ Breast Cancer Story

Post author By Katrina Villareal
Post date December 22, 2022
1 Comment on Bethany’s Stage 2 ER+ Breast Cancer Story

Bethany’s Stage 2 ER+ Breast Cancer Story

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?

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.

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.

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

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.

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.

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.”

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.

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.

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.

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?”

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.

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.

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.”

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.

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.

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.

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

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 »

Thank you for sharing your story, Bethany!

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Jenny’s Multiple Myeloma Story

Post author By Katrina Villareal
Post date December 15, 2022
No Comments on Jenny’s Multiple Myeloma Story

Jenny Ahlstrom’s Multiple Myeloma Story

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.

Table of Contents

Pre-diagnosis
Diagnosis
Treatment
- Participating in clinical trials
Taking care of your mental health amidst a cancer diagnosis
Relapse
What helped you decide on a course of treatment?
- Different myeloma treatment options
Joining a CAR T clinical trial
What are your thoughts about a cure for myeloma?
What should a patient ask during the initial doctor’s appointment?
What has been the biggest impact on you?

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.”

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.

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.

Thank you for sharing your story, Jenny!

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Multiple Myeloma Stories

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Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
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Melissa V., Multiple Myeloma, Stage 3

Symptoms: Frequent infections

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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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Treatments: Chemotherapy (bortezomib & velcade), daratumumab/Darzalex, lenalidomide, revlimid, & stem cell transplant
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Treatments: Immunotherapy, chemotherapy, stem cell transplant
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Tags Multiple Myeloma Clinical Trials

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

Post author By Katrina Villareal
Post date November 26, 2022
No Comments on Anna’s Ph- B-Cell Acute Lymphoblastic Leukemia Story

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

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

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.

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.

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.

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.

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.

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 hugging snowy mountains

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.

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.

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.

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.

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? »

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.

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.

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.

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.

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 »

Anna T. and husband Joe in black hoodies

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 »

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 »

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.

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.

Anna T. and husband Joe back of pickup truck

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

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.

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.

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.

Thank you for sharing your story, Anna!

Inspired by Anna's story?

Share your story, too!

Acute Lymphoblastic Leukemia Stories

Evan L., Acute Lymphoblastic Leukemia (ALL)

Symptoms: Extreme fatigue, easily bruised
Treatments: Chemotherapy, spinal taps, cranial radiation

Casey H., Acute Lymphoblastic Leukemia (ALL)

Symptoms: Lump on the throat, extreme fatigue, shortness of breath, bruising easily

Treatments: Chemotherapy, immunotherapy, radiation, stem cell transplant

Veronica B., Acute Lymphoblastic Leukemia (ALL)

Symptoms: Mild shortness of breath, palpitations
Treatments: Chemotherapy, targeted therapy, double cord transplant

Christine M., Acute Lymphoblastic Leukemia (ALL)

Symptoms: Enlarged lymph nodes, pain in abdomen, nausea

Treatments: Chemotherapy, bone marrow transplant

Ciara T., Acute Lymphoblastic Leukemia (ALL)

Symptoms: Fatigue, shortness of breath, night sweats, petechiae

Treatments: Chemotherapy, monoclonal antibody

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

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

Post author By Katrina Villareal
Post date November 23, 2022
No Comments on Paige’s Stage 4 Diffuse Large B-Cell Lymphoma Story

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

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.

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

Table of Contents

Pre-diagnosis
Diagnosis
Treatment
Living life as a young adult with cancer
- Fertility preservation through egg freezing
Importance of a good support system
Words of advice

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.

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 »

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…

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

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. 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.

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? »

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.

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.

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

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.

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.

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

Thank you for sharing your story, Paige!

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Medical Experts

Why are My Prescriptions So Expensive? | Alex Oshmyanksy + Dr. Vincent Rajkumar

Post author By Katrina Villareal
Post date November 16, 2022
No Comments on 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

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.

Table of Contents

Introduction
The path from pharma to pharmacy
Drug price disparity
Understanding drug pricing
Finding the best price for your prescription
The road ahead
Advice for patients and families

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.

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.

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.

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.

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.

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.

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

DLBCL in 2023

What Patients & Caregivers Need to Know Now

Introduction

Immunotherapy for DLBCL

CAR T-cell therapy in earlier lines of treatment for DLBCL

Bispecific antibodies in the treatment of DLBCL

Bispecifics in clinical trials

Cytokine release syndrome (CRS)

Deciding whether to give bispecific antibodies or CAR T-cell therapy

Bispecifics given as single agents and in earlier lines of treatment

Epcoritamab for transplant-eligible patients who didn’t do well post-transplant

Importance of patient-reported outcomes

Breakthrough therapies for DLBCL offer hope

DLBCL Patient Stories

Lainie’s Multiple Cancer Story

Introduction

Pre-diagnosis

Can you describe some of your first symptoms?

Did you go get the mammogram or the ultrasound?

Were there any other symptoms other than the lump?

Diagnosis

When you felt that lump, did you ever think this could be cancer? How did you process that diagnosis when you heard those words?

Getting tested for Li-Fraumeni syndrome

Being diagnosed with 5 different cancers

Treatment

What was your treatment?

Did the treatments overlap?

Learning that your cancer treatment caused another cancer

What were some of the side effects from treatments?

How did you deal with the side effects?

What was going through hair loss like for you?

What is your current maintenance treatment?

Importance of a great support system

Did your parents being cancer survivors impact you in any way?

Being your own advocate

Importance of documentation

Words of advice

Having a positive attitude

How do you deal with scanxiety?

How far we’ve come with cancer research and treatments

Inspired by Lainie's story?

More Invasive Ductal Carcinoma Stories

The Latest in Hodgkin Lymphoma with Matthew Matasar, MD

Introduction

Tell us about your journey into medicine

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

How do chemotherapy and immunotherapy work?

What does staging mean in cancer?

Where do PET scans fit in the treatment plan?

Where does radiation fit in all this?

Survivorship & patient care

Advances in the treatment of the relapsed/refractory Hodgkin

Any words of advice to patients and caregivers?

More Medical Expert Interviews

Multiple Myeloma in 2023

What Patients & Caregivers Need to Know Now

Introduction

Cutting back on the use of dexamethasone

What are bispecific antibodies?

How soon will patients be able to start on bispecifics?

When will bispecifics be available in Community Cancer Centers?

What is cytokine release syndrome?

Will bispecifics be given in the outpatient setting?

Thoughts about patients needing hospitalization with bispecifics

Limited duration treatment with bispecifics for relapsed/refractory myeloma patients

Who would qualify for bispecifics?

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

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

Updates on CELMoDs

What role do ‘novel therapies’ play?

Understanding what dose is best for selinexor

How do we include more diverse populations in clinical trials?

Conclusion

Follow-up questions

General

Treatment response

Side effects

Transplant

CAR T

Bispecifics