Categories
Hodgkin Hodgkin Lymphoma Hodgkin Lymphoma Oncologist Medical Experts Medical Update Article Oncologist Patient Events

The Latest in Hodgkin Lymphoma: Treatment Options in 2024

The Latest in Hodgkin Lymphoma

What are My Treatment Options in 2024?

Edited by: Katrina Villareal

Where is Hodgkin lymphoma headed in 2024? Two-time Hodgkin’s lymphoma survivor Dr. Sam Siegel discusses with top lymphoma experts, Dr. Natalie Grover of UNC Health and Dr. Stephen Ansell of Mayo Clinic, as they break down what patients and caregivers need to know!

Key topics include the latest treatment options and clinical trials, reducing toxicity from treatments, advances in post-transplant relapse, and the roles of CAR T-cell therapy and bispecific antibodies in the treatment of Hodgkin lymphoma.

Introduction

Current, Standard Treatments

Latest Advancements in Treatment

SWOG S1826 trial

Bispecific Antibodies

CAR T-Cell Therapy

Stem Cell Transplant

Developments in Salvage Therapy



Imerman Angels

This program is brought to you by The Patient Story in partnership with The Leukemia & Lymphoma Society and Imerman Angels.


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

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


Introduction

Stephanie Chuang, The Patient Story

Stephanie Chuang, The Patient Story: My name is Stephanie Chuang, the founder of The Patient Story. I also got a blood cancer diagnosis a few years ago. Mine was non-Hodgkin lymphoma, but we have so many shared experiences in what we’re looking for and that’s what The Patient Story is all about.

We help both patients and care partners navigate a cancer diagnosis. We do this primarily through in-depth conversations with patients, care partners, and top cancer specialists.

We’re so proud to be partnering with The Leukemia & Lymphoma Society and Imerman Angels for this program. 

I also want to give special thanks to Seagen for supporting our educational program. Their support helps programs like this become more available and free for our audience. We want to note that The Patient Story retains full editorial control of this entire program and that this is not meant to be a substitute for medical advice. 

Our patient moderator, Dr. Sam Siegel, will be leading the conversation from this point forward. 

Stephanie Chuang
Samantha S. feature profile
Sam Siegel, MD, Patient Advocate

Dr. Sam Siegel: Thanks, Stephanie! I’m a two-time Hodgkin’s lymphoma survivor, bone marrow transplant survivor, and primary care physician doing survivorship medicine. I’m here to have this wonderful conversation with Dr. Natalie Grover and Dr. Stephen Ansell about Hodgkin lymphoma updates.

Natalie Grover, MD

Sam: Dr. Natalie Grover is a hematologist-oncologist at the UNC School of Medicine. She’s the clinical director of the cellular therapy program, leads several CAR T-cell therapy clinical trials in lymphoma, and strives to improve treatment options and quality of life for lymphoma patients.

Dr. Grover, can you tell us a little bit about yourself, what drew you to lymphoma, and about your approach to patients and how you care for them?

Dr. Natalie Grover: I was drawn to oncology as a maternal medicine resident. Much of it was based on my relationship with patients whom I saw in the inpatient oncology ward. When I saw those patients, I always wanted to go back and find out more about what happened to them and form connections with them.

There were so many discoveries and new treatments available. Even during residency, the treatment landscape was changing so much and that drove me to oncology.

I like how heterogeneous lymphoma is and how it involves a wide patient population of both young and older patients. It’s truly a systemic disease. There are so many different types of lymphoma so my clinic is a very heterogeneous mix of different patients and I enjoy that.

Sam: That makes a lot of sense. Lymphoma is the umbrella, but it’s a lot of different diseases that can affect multiple parts of the body. I could see how that’s interesting.

Dr. Natalie Grover profile
Stephen Ansell, MD, PhD

Sam: Dr. Stephen Ansell is a hematologist-oncologist at the Mayo Clinic who studies and specializes in Hodgkin’s lymphoma. His research has led to the use of immune checkpoint therapy in lymphomas, which is a very exciting development. His goal is to translate his research into new treatment approaches.

Dr. Ansell, can you tell us about your path into lymphoma, what drew you to the field, and your approach to patients?

Dr. Stephen Ansell

Dr. Stephen Ansell: I trained in South Africa. I was very focused on internal medicine, but they needed someone to do some work temporarily in oncology and assigned me. 

When I got there, similar to Dr. Grover, I was excited about the opportunity, the disease, the patients, and how we could make a difference based on the fact that treatments were highly effective and beneficial. Patients benefited substantially even from initial treatments back in the day of more chemotherapy.

What has been exciting for me throughout my career has been to see how we can change treatments by increasing the number of people who benefit and hopefully get cured, and decreasing the side effects and toxicities by being able to find effective therapies that aren’t that hard on patients.

Sam: Your areas of interest and passion are so personally meaningful to me and my lymphoma journey, and I think will resonate with a lot of people.

Even though I had some side effects from the brentuximab at the highest dose that I first started it on, it still felt like a cakewalk compared to my initial drug regimen.

Dr. Sam Siegel

Sam’s Hodgkin Lymphoma Story

Sam: I was diagnosed with stage 2AE Hodgkin’s lymphoma and the reason that 2AE is important is because E means extranodal manifestations. I had some lung involvement and it was confusing whether or not I was a stage 2 with right around the lymph nodes in that lung or stage 4. That was going to impact how many months of chemotherapy I would have.

I started with ABVD chemotherapy. Within two months, the initial cough that I had at the time of diagnosis improved pretty quickly. Towards the end of those two months, I started getting a cough again. My PET scan looked good so the thought was that bleomycin was probably to blame for that cough.

We dropped bleomycin and it felt pretty okay making that decision. I suspected that something else was going on, but because the scan had come back clean, we decided to watch and wait.

Samantha S. ABVD
Samantha S. 39th birthday at Brentuximab infusion

About a month or two after that, I developed symptoms that were eerily reminiscent of my initial diagnosis, such as wheezing in the upper left side of my chest, which I knew wasn’t normal, and a pea-sized lump above my collarbone in a very similar location to where the initial lump was.

I suspected that those were Hodgkin lymphoma symptoms and sought care right away. The PET scan showed that I was most likely having a relapse.

It was a process to get the tissue to confirm the relapse. I had to have three biopsies, with the third one involving a thoracic surgery to get a lymph node right near my heart.

By that time, I felt so beaten up by traditional cytotoxic chemotherapy. New information was coming around about salvage therapy, which is the therapy after a person has relapsed from initial therapy. At that time, I didn’t feel that I could go through another few months of multi-drug traditional cytotoxic chemotherapy.

Data was coming out about brentuximab, an antibody-drug conjugate, and using that as a bridge to autologous bone marrow transplant. My oncologist said, “These trials showed that this could be an effective bridge to transplant. What do you think?” I said yes because I wanted to go for the therapy with the least amount of toxicity.

Even though I had some side effects from the brentuximab at the highest dose that I first started it on, it still felt like a cakewalk compared to my initial drug regimen.

That goes to show how important the science is and the clinical trials that inform oncologists how to adjust therapies, especially therapies that were traditionally pretty toxic in terms of long-term and late-term effects.

Samantha S. BMT prep

There are always ways in which we’re trying to make treatment better… we’re trying to replace radiation therapy by utilizing new agents.

Dr. Stephen Ansell

Standard of Care: First-Line Treatments

Sam: Dr. Ansell, can you tell us about the current standard first-line treatments and their efficacy for Hodgkin lymphoma?

Dr. Ansell: In many respects, we think about it in two buckets: people who have more limited-stage disease (only on one side of the diaphragm, either above or below) or advanced-stage disease (both sides of the diaphragm, in the bone marrow, or other tissues).

With limited-stage disease, we again think of two buckets. These are different symptoms and other tests to determine prognostic factors. If you have favorable prognostic factors, we treat you with very minimal chemotherapy. If you have more symptoms and unfavorable factors, we will treat you with a little bit more treatment. If you have advanced disease, we give you more treatment yet again.

There are always ways in which we’re trying to make treatment better, but the most standard way is if you have very limited disease with good favorable factors, we often will give two rounds of chemotherapy treatment and then consider consolidation radiation treatment.

If you have a more advanced disease, still limited to one side of the diaphragm but with more unfavorable factors, we would give more chemotherapy and more radiation treatment. Then for advanced-stage disease, we would give chemotherapy and no radiation treatment.

However, we’re trying to replace radiation therapy by utilizing new agents. We’ve used PET scans to tell us who might need extra treatment or not. I have to hedge a little bit because a lot of it is individualized and that’s the most important thing.

It’s so important to raise awareness about the importance of being involved in clinical trials and knowing that you don’t have to have failed multiple lines of therapy before you consider them.

Dr. Sam Siegel

Sam: Absolutely. How do you decide? There are different prognostic systems so if somebody is unfavorable in one and favorable in others, how do you factor that in?

Dr. Ansell: Pick one system and utilize the data supported by that system. The German Hodgkin Study Group has done a lot of work in this space. In our practice, we tend to use the prognostic system that they use because that helps us standardize treatment.

What we want to do is always push the envelope. We encourage people to participate in clinical trials that are testing new ways compared to the standard ways to see if we can optimize treatment even further.

Sam: I love that. Thank you for bringing up clinical trials. It’s so important to raise awareness about the importance of being involved in clinical trials and knowing that you don’t have to have failed multiple lines of therapy before you consider them.

Clinical trials can be for everyone and there are so many different types of situations where somebody could need a clinical trial. We’re looking at things to de-escalate therapy or alter treatments based on a patient’s situation.

Dr. Ansell: I would say you’re exactly right. The most impressive and important data that has come out on Hodgkin lymphoma is in the front line based on recent clinical trials. Everyone needs to remember that what we do currently is based on people who have participated in clinical trials that have changed how we practice.

Standardly, we utilize new agents, like PD-1 blocking antibodies or brentuximab vedotin plus chemotherapy, rather than chemotherapy alone because that’s improved the outcome of patients. Especially in advanced-stage patients, that’s now the standard of care.

The two biggest drugs that have transformed the care for Hodgkin lymphoma in the past 5 to 10 years are brentuximab vedotin… and checkpoint inhibitors.

Dr. Natalie Grover

Latest Advancements in Treatments

Sam: Dr. Grover, what are some of the newest and hottest treatments for Hodgkin lymphoma?

Dr. Grover: I think the hottest advances in Hodgkin lymphoma are related to incorporating some of these new treatments into earlier lines of therapy to try to both improve outcomes so increase the chance of cure and reduce long-term toxicities.

The two biggest drugs that have transformed the care for Hodgkin lymphoma in the past 5 to 10 years are brentuximab vedotin, which is an antibody-drug conjugate. It delivers chemotherapy specifically to the cancer cells.

The cancer cells in Hodgkin lymphoma have a marker on them—CD30—that’s pretty much universally seen in all the Reed-Sternberg cells, the cancer cells in Hodgkin lymphoma. Brentuximab specifically targets those.

The other drugs are what people may have heard of called checkpoint inhibitors. These immunotherapies help the immune system fight Hodgkin’s lymphoma.

When they incorporated these drugs—nivolumab, pembrolizumab, and brentuximab—they were successful in relapsed/refractory disease. Now they’re being moved to earlier lines of therapy to try to reduce the amount of chemotherapy that we’re giving patients and hopefully to enhance care in these patients.

By limiting chemotherapy and radiation, can you improve patient outcomes?

Dr. Natalie Grover

Sam: How about some recent clinical trials for reducing toxicity? I heard about AHOD2131.

Dr. Grover: There’s a clinical trial for pediatric and adult patients looking at whether we can incorporate these newer treatments, brentuximab and checkpoint inhibitors, in newly diagnosed Hodgkin lymphoma patients.

Everyone gets two cycles of standard chemotherapy then patients get randomized to either getting these new treatments, brentuximab and nivolumab, or continuing to standard chemotherapy.

The question is: by limiting chemotherapy and radiation, can you improve patient outcomes? One thing they want to look at is cure rates and long-term survival from a Hodgkin’s standpoint, but they’re also collecting data looking at quality of life patient-reported outcomes.

The top priority is curing their lymphoma, but we also want to think about the quality of life for patients moving forward and making sure that they live long lives.

Dr. Natalie Grover

Sam: That’s incredible. When you’re talking about late-term effects or reducing toxicities, what are some of the things that we’re trying to reduce long-term?

Dr. Grover: One of the chemotherapy drugs that we give patients can affect their heart function so some of the things that we think about are the risk of heart disease down the line.

One of the drugs that we’re using a lot less often now can affect lung function so we look at issues with lung function past therapy.

With some of these drugs and using more brentuximab, another thing that we’re thinking about is neuropathy. Patients can have some nerve damage and issues with pain, numbness, and tingling or doing different functions, like texting, typing, or writing.

With young patients, another thing we think about is fertility. Even though many of these patients can have children in the future as a lot of these earlier treatments don’t have as big an effect on fertility, it’s still something we think about, especially if we need to escalate people who have a disease that relapses or need more aggressive therapies.

We also think of secondary cancers. Some chemotherapy and radiation may increase the risk of having other cancers.

The positive is that most of these patients live long enough for us to focus on that and think about these effects. The top priority is curing their lymphoma, but we also want to think about the quality of life for patients moving forward and making sure that they live long lives.

Checkpoint inhibitors help the immune system fight the cancer. Some of these patients may stop responding to checkpoint inhibitors so there’s interest in using other types of treatments in combination.

Dr. Natalie Grover

Sam: What about trials to re-sensitize to PD-1 drugs? What does that mean?

Dr. Grover: Checkpoint inhibitors are effective in Hodgkin lymphoma. Right now, we’re moving them to earlier lines of therapy but these are treatments that can also work well for relapsed and refractory patients.

Hodgkin lymphoma is unique because, compared to other lymphomas, there aren’t that many cancer cells in these patients. When pathologists look at cells, there are a lot of immune cells around the cancer cells so there aren’t that many lymphoma cells. A lot of it is your immune reaction to the lymphoma.

Checkpoint inhibitors help the immune system fight the cancer. Some of these patients may stop responding to checkpoint inhibitors so there’s interest in using other types of treatments in combination. If a patient progresses on pembrolizumab or nivolumab, can you combine them with other treatments and re-sensitize your immune system so they can be sensitive again to these treatments? There’s some research looking into that.

We’ve also seen patients get the reverse. These treatments may reset the patients in some way. Patients may get checkpoint inhibitors and then after that may respond better to other treatments. There have been some studies showing that after checkpoint inhibitors, even if they progress on those drugs, patients potentially respond better to chemotherapy or other treatments.

Sam: We’re still learning how these drugs impact the immune system and how they might make you respond better to traditional chemotherapies, even if you didn’t initially. That’s incredible.

Dr. Grover: The current biggest advances are in advanced-stage Hodgkin lymphoma. More recently, brentuximab was incorporated in addition to chemotherapy. Dr. Ansell was part of that study. That improved overall survival in advanced-stage Hodgkin lymphoma patients compared to standard of care.

We can see the progression from old-style chemotherapy to immune checkpoint plus chemotherapy as the front-line treatment.

Dr. Stephen Ansell

Early vs. Advanced Stage Advancements

Sam: Dr. Ansell, can you tell us about the SWOG S1826 trial and what that showed?

Dr. Ansell: Picking up again on the theme of better therapies getting better outcomes and using some of the new drugs that we’ve touched on, as Dr. Grover said, the management of advanced-stage patients has moved over time.

Back in the day, we gave ABVD chemotherapy and tried to leave out bleomycin, which causes lung toxicity, if patients were doing well based on PET scans.

These new drugs, brentuximab vedotin being the first one, were brought into the combination in place of bleomycin. It’s now brentuximab with AVD. When compared head to head, it showed that brentuximab improved the outcome of patients—not only their likelihood of staying in remission but their overall survival.

It was then compared as the standard to nivolumab, the PD-1-directed therapy, plus AVD chemotherapy in place of bleomycin. That then showed progression-free survival at a one-year follow-up. We don’t have mature data yet, but it seemed better already than the brentuximab-AVD chemotherapy and, as Dr. Grover touched on, less in the way of side effects and better tolerated.

That’s likely to become the new standard for advanced-stage patients. We want to see a little bit more mature data. But certainly, in elderly patients where toxicity is a real challenge, this has become a standard for many. We can see the progression from old-style chemotherapy to immune checkpoint plus chemotherapy as the front-line treatment.

Sam: These are exciting times. It’s wild because, for decades and decades, it seemed like we were doing the same thing for Hodgkin patients. Even if I were diagnosed with the same clinical scenario now compared to when I was first diagnosed in 2021, I would be treated differently.

There is still a subset of people where the disease proves to be very challenging and keeps relapsing… We still see patients who have gone through this standard treatment using these new drugs and then the disease comes back yet again.

Dr. Stephen Ansell

Gaps Clinical Trials are Filling

Sam: Can you tell us about these clinical trials and what gaps they fill?

Dr. Ansell: You heard us talk about two new drugs. They came from the relapsed setting but have moved up to front-line treatments. The gaps are for patients, heaven forbid, who have gone through these new therapies.

There is still a subset of people where the disease proves to be very challenging and keeps relapsing. That group’s getting to be smaller and smaller so that’s the good news. The challenging point is that it’s never good enough until there’s nobody in that group. We still see patients who have gone through this standard treatment using these new drugs and then the disease comes back yet again.

Things that are becoming exciting and that we need to do better on is what to do for those patients. Additional treatments that target these other immune checkpoints aside from PD-1 and other ways to make the immune system wake up and do its job are being tested.

The work that Dr. Grover and her team do is taking your immune cells, sending them to “training camp” to get a little docking site on them so they can detect the cancer in a much better way, and then unleashing them on the cancer. That’s proving exciting.

Finally, what we call bispecific antibodies. Those are also being tested and are some of the exciting opportunities in the future.

One arm of the antibody is directed to CD30, but the other arm grabs onto CD3 in the T cells.

Dr. Stephen Ansell

Bispecific Antibodies

Sam: Can you tell us about bispecific antibodies?

Dr. Ansell: This is an area that’s growing fast in Hodgkin lymphoma. Dr. Grover talked about CD30, which is on the cancer cells. One arm of the antibody is directed to CD30, but the other arm grabs onto CD3 in the T cells.

Bispecific antibodies bring those cells into very close proximity to each other. Like your kids in the back of the car who don’t like to sit next to each other and keep poking each other, this causes those cells to be grumpy with each other. The T cells, your immune cells, will then fight the cancer. That’s really what you want to see.

We talked about immune checkpoints that make T cells do a better job. One of the ways we’re doing that is on one arm, PD-1, which is an established immune checkpoint, but on the other, something like TIM-3, which is another immune checkpoint.

Other ways in which T cells are being switched off are now protected so it’s making those cells even more efficient. Those are two of the main ways bispecific antibodies are being tested right now.

With CAR T-cell therapy, we have seen some nice responses in patients whose disease has progressed after many different therapies, but there’s still work to do to improve these therapies.

Dr. Natalie Grover

CAR T-cell Therapy

Sam: Dr. Grover, how about CAR T-cell therapy and post-transplant relapses? Can you tell us about that and where CAR T-cell therapy might play a role?

Dr. Grover: As Dr. Ansell briefly mentioned, CAR T-cell therapy involves taking a patient’s T cells, sending them off, and re-engineering them so they can specifically target the CD30 protein on the cancer cell.

We have a CAR T-cell therapy trial at UNC and at the Baylor College of Medicine. There are two academic trials where we’re studying these CAR T cells in patients with Hodgkin lymphoma. There are also a few international trials. I know there’s a group in Spain and China.

Unfortunately, there isn’t a company-sponsored trial. They’re exciting treatments, but they’re not as easily accessible. Patients do need to travel for these for these treatments.

The big thing is long waiting lists, but we are hoping to get more patients treated more quickly because it still shows that there is an unmet need. Some patients have not responded, progressed after brentuximab, progressed after checkpoint inhibitors, progressed after transplant, and need additional options for treatment.

With CAR T-cell therapy, we have seen some nice responses in patients whose disease has progressed after many different therapies, but there’s still work to do to improve these therapies.

Right now, we have some patients who have been in remission for many years—five-plus years after getting CAR T cells. Many patients get the CAR T cells and have a great response, but their disease relapses afterward. We’re trying to figure out why that’s happening and how we can improve the CAR T cells and improve outcomes for patients.

Patients who relapse can have more aggressive disease as opposed to some other more aggressive types of lymphoma, but with Hodgkin, patients who have relapsed oftentimes can live a long time even with the disease.

Dr. Natalie Grover

Dr. Ansell: There’s one other option that takes both bispecifics and cellular therapies and combines those strategies. That’s taking the natural killer cells from cord blood and using a bispecific antibody that targets CD30 and a protein called CD16 on the NK cell. It sticks this bispecific antibody to the NK cell.

They pre-treat the NK cells before they give them to the patient and then infuse them. You activate the cells outside the body, add the bispecific antibody so that it’s already stuck to the NK cells, and infuse them. Those also have been effective therapies.

Dr. Grover’s right. We’re still learning about how many treatments you need to get. They’re getting high response rates, but the durability is still in question. But I think that’s another exciting strategy of taking cellular therapies and bispecifics and using them together.

Dr. Grover: I think that’s the LuminICE trial, which will be open at several different sites across the country.

Sam: That’s great. That’s an important point. It’s part of the issue of Hodgkin lymphoma compared to non-Hodgkin’s. It’s not nearly as common in terms of the number of people that will qualify for these trials so that may be why there are less commonly offered.

Dr. Grover: Hodgkin lymphoma has higher cure rates and is less common. A lot of times, patients who relapse can have more aggressive disease as opposed to some other more aggressive types of lymphoma, but with Hodgkin, patients who have relapsed oftentimes can live a long time even with the disease.

I’ve seen patients in my trials who have relapsed and have not even been in remission but have been living for many, many years with relapsed disease. A lot of times, these patients may not be as sick, which is a good thing, so they’re able to travel and participate in these trials. Many of these patients may be alive and doing well even though they’re going through treatment or have some disease left.

An allogeneic transplant is still a curative option and something that we would always consider.

Dr. Stephen Ansell

Transplant

Sam: Where is all this in relation to allogeneic transplants for people who are relapsing after transplant? Allogeneic, meaning the donor is somebody else, as opposed to autologous, which is more common in Hodgkin.

Dr. Ansell: To be honest, an allogeneic transplant is still a curative option and something that we would always consider. It’s a little bit high-risk because of the potential for longer-term toxicities.

With a lot of these novel treatments, many of which have been very successful in the past, people delayed allogeneic transplants a little bit. There are some challenges now as patients are having their disease come back after standard treatment so there is a subset of patients for whom that needs to be considered. That’s a very individualized discussion between patients and their doctors to weigh the risks versus the benefits.

One of the key questions to ask is what treatment somebody got as their first line because that impacts what you would do in the second line.

Dr. Stephen Ansell

Developments in Salvage Therapy

Sam: Dr. Ansell, what are some of the developments in salvage therapy, which is given when somebody has their initial relapse?

Dr. Ansell: It’s moving pretty fast right now. Novel drugs are being used in the front line so one of the key questions to ask is what treatment somebody got as their first line because that impacts what you would do in the second line.

However, based on where most patients are right now, not very many have had an immune checkpoint treatment, which is the nivolumab and pembrolizumab that Dr. Grover spoke about. Not too many people have had that as their front-line treatment and using those in combination with standard chemotherapies, like ICE chemotherapy or GVD chemotherapy. In the majority of particularly younger patients, going to more intensive treatment and a stem cell transplant using your own cells is very much the standard management.

Some interesting recent data compared where that was used to standard chemotherapy or the use of brentuximab and chemotherapy then a transplant and then looked at outcomes. The patients with the best outcome got a PD-1 antibody before they got their transplant.

Dr. Grover touched on this, which is an important point. The PD-1 blocking antibody team seems to change the immune system a bit and make patients more sensitive to some of the chemotherapies after the fact so that’s why it seems like it makes a difference. We tend to favor chemotherapy with immune checkpoint therapy as a treatment approach before going to transplant.

We want to see people cured. Heaven forbid that it comes back the first time, but if it does, all the gloves are off. Now we’re going at it as hard as we possibly can.

Dr. Stephen Ansell

Sam: That’s interesting because I know in other cancers, people will save therapies or not want to expose them because the body will learn them. What you’re saying is that the same principle may not apply in Hodgkin. These therapies may sensitize to other therapies or make people respond better so you don’t necessarily need to leave them until later when you’ve burned through other options.

Dr. Ansell: Correct. We want to see people cured. Heaven forbid that it comes back the first time, but if it does, all the gloves are off. Now we’re going at it as hard as we possibly can and we want to utilize all the effective tools that we have so that we can truly beat it into the ground. That’s what I would recommend. Different from other cancers where you might want to string things along in a palliative approach. With Hodgkin, you want to go after it with curative intent.

Sam: It’s wild to think how quickly things evolve and how important it is for patients to seek out providers or treatment at cancer centers who have some connection with the trials and know the latest updates.

How can we advise patients to seek out that kind of care? How can they ask for that from their oncologist if they’re getting treatment in the community?

Dr. Ansell: Be an informed patient. Ask questions and be a strong advocate for yourself. There are excellent resources, like The Leukemia & Lymphoma Society, which have good information related to many of these topics. Being informed about the best way to be managed is useful.

When your doctor sees you and goes through things, asking questions relative to the information that you have helps you feel reassured that you’re on the right track. Most of us are quite okay with patients getting second opinions from other colleagues.

Second opinions help people reinforce the messages you’re already giving. People will be more comfortable doing what needs to be done if they’re hearing the same thing from more than one person. All of that pertains to a good outcome. If you ask questions, make sure you get your questions answered.

Sam: Thanks for empowering patients because it’s so hard to make these decisions even when you have a lot of resources and education. It could be such an emotional time, in addition to not feeling well, and it’s helpful to hear that you expect people to want other opinions and be informed.

Dr. Ansell: To be honest, a lot of patients come in and get so much information that it’s pretty challenging to retain them. I always tell people to bring friends or family. Have other sets of ears that can help reinforce some of the messages so that when your brain is locked down and you can’t think straight, they hear things that you might have missed.

The treatments are getting better all the time so there’s a lot of hope. I’m hoping that in the not-very-distant future, every patient with Hodgkin lymphoma can be cured with front-line treatment.

Dr. Stephen Ansell

Final Messages

Sam: Dr. Grover, can you give us some final points or takeaway messages?

Dr. Grover: I’m excited about improving earlier therapies and moving these newer therapies to the front line both to hopefully enhance cure to prevent patients from relapsing again and reduce long-term toxicities and improve quality of life.

There’s still an unmet need for patients who are refractory to PD-1 inhibitors, brentuximab, and chemotherapy. I’m hoping that over the next few years, we will have more clinical trials and more developments for that patient population.

For patients, ask questions of your provider. Don’t be shy about getting a second opinion. I’m never offended if a patient goes for a second opinion.

Sam: How about you, Dr. Ansell?

Dr. Ansell: If you’re a patient with Hodgkin lymphoma, there are unique and novel treatments that are making a big difference to patient outcomes. The treatments are getting better all the time so there’s a lot of hope. I’m hoping that in the not-very-distant future, every patient with Hodgkin lymphoma can be cured with front-line treatment.

Sam: Thank you so much for that. I remember initially being scared about death and dying. I think that’s what a lot of people think about when they hear the word cancer. Once it began to move away from that and began to become living with cancer or living life after a cancer diagnosis, I thought, I’d like to jog, paint, play guitar, hold my kids, and be able to think as well as possible.

These trials to improve quality of life while simultaneously improving outcomes are so meaningful personally. I know it means a lot to our patient population that you took the time to have this conversation with us. Thank you so much.

Dr. Ansell: My pleasure.

Dr. Grover: Thanks so much for having us.

Stephanie: Thank you so much, Sam, for being our incredible patient advocate and moderator. Also, thank you to Dr. Grover and Dr. Ansell, for the work and research you do to help move the landscape of treatment options in Hodgkin lymphoma. 

We hope that you walk away with a better understanding of the latest treatments and clinical trials in Hodgkin lymphoma. They may or may not be right for you, but our goal is to make sure you feel empowered to make a decision for yourself.

Thank you and we hope to see you again at a future program at The Patient Story.


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

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


More Medical Expert Interviews

Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks With Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks Dr. Lecia Sequist discusses using AI to detect lung...
Dr. Mark Lewis, Dr. Kerry Rogers, Dr. Ruben Mesa

Trends in Cancer Research 2022

Learn from three of the top cancer specialists about cancer treatment trends, including precision medicine...
Jack Aiello and Dr. Alfred Garfall feature profile

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma Hematologist Alfred Garfall, MD, MS...
ASH 2023 multiple myeloma

The Latest in Multiple Myeloma: Understanding Promising Treatment Options

The Latest in Multiple Myeloma: Understanding Promising Treatment Options Patient advocates Cindy Chmielewski and Jack Aiello...

The Latest in Multiple Myeloma with Caitlin Costello, MD

Dr. Costello discusses the latest in multiple myeloma treatment from ASH 2022, including the MAIA...
The Latest in Multiple Myeloma Treatments - Clinical Trials

The Latest in Multiple Myeloma Treatments

The Latest in Multiple Myeloma Treatments: What Clinical Trials are Available to Me? Patient advocate Cindy...
The Latest in Lung Cancer Treatments - Clinical Trials

The Latest in Lung Cancer Treatments

The Latest in Lung Cancer Treatments: Is a Clinical Trial Right for Me? Leading experts Estelamari...
Hodgkin Lymphoma ASH 2023 feature profile

The Latest in Hodgkin Lymphoma: Treatment Options in 2024

The Latest in Hodgkin Lymphoma: Treatment Options in 2024 Dr. Matthew Matasar, chief of blood disorders...
Dr. Matthew Matasar

The Latest in Hodgkin Lymphoma

Matthew Matasar, MD, MS Dr. Matthew Matasar, chief of blood disorders at the Rutgers Cancer Institute...

The Latest in Genetic Testing in 2023

Abigail and Sue sat down with The Patient Story to discuss FORCE, the genetic component...
Lesley Glen and Dr. Roberson sat down with The Patient Story to discuss patient research.

The Latest in Breast Cancer Patient Research

Lesley and Dr. Roberson sat down with The Patient Story to discuss patient research and...
Dr. Alok Tewari

Testicular Cancer: What Patients Need to Know

Testicular Cancer: What Patients Need to Know Medical oncologist Alok Tewari, MD, PhD, who specializes in...
SABCS 2022 Highlights feature profile

SABCS 2022 Highlights

SABCS 2022 Highlights Top breast cancer doctors Dr. Paolo Tarantino with Dana-Farber Cancer Institute and Dr...
Dr. Ajai Chari and Dr. Sandy Wong

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022 Multiple myeloma specialists Dr. Ajai Chari with Mount Sinai...
Dr. Kamran Mirza

Pathologists: The Unseen Doctors of Your Medical Team

Pathologists: The Unseen Doctors of Your Medical Team Hematopathologist Kamran Mirza, MD, PhD, explains more about...
Hodgkin Lymphoma Side Effects and Holistic Approach

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care Dr. Andy Evens from Rutgers Cancer...
Dr. Caitlin Costello Dr. Sagar Lonial

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022 Dr. Caitlin Costello and Dr. Sagar Lonial discuss...
Dr. Serge Verstovsek and Dr. Naveen Pemmaraju

Myelofibrosis Highlights from ASH 2022

Myelofibrosis Highlights from ASH 2022 Dr. Serge Verstovsek and Dr. Naveen Pemmaraju discuss cutting-edge treatments and...
Dr. Muhamed Baljević and Dr. Josh Richter

Multiple Myeloma in 2023

Multiple Myeloma in 2023 Long-time myeloma patient and advocate, Jack Aiello, leads the conversation with Dr...
Dr. Chadi Nabhan

Monsanto Roundup Trials Update

Chadi Nabhan, MD, MBA Dr. Chadi Nabhan shares how he got involved in the Monsanto trials...
Dr. Michael Hall

Lynch Syndrome: What Patients Need to Know

Lynch Syndrome: What Patients Need to Know Medical oncologist Michael Hall, MD, MS, discusses Lynch syndrome...

Lola Fayanju, MD, MA

Dr. Fayanju, MD, MA Role: Chief, Division of Breast Surgery Focus: Breast Cancer Provider:...
Let's Talk CLL LIVE

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE – Transcript

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE Patients, care partners, and a panel...
Dr. Nicole Lamanna, Dr. Spencer Bachow, and Lisa P.

How to Work With a CLL Specialist

How to Build a Strong CLL Team Nicole Lamanna, MD, from Columbia University Medical Center, Spencer...

How Long Can You Live with Chronic Lymphocytic Leukemia

How Long Can You Live with Chronic Lymphocytic Leukemia? Dr. Adam Kittai and Dr. Joanna...
Jack Aiello and Dr. Shaji Kumar

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022 Patient advocate Jack Aiello and hematologist Dr. Shaji...
Abigail Johnston feature profile

Health Insurance and Cancer Treatment

Health Insurance and Cancer Treatment Abigail Johnston, a metastatic breast cancer patient and lawyer, talks about...
Dr. Fumiko Chino feature profile

Financial Toxicity of Cancer Treatment

Financial Toxicity of Cancer Treatment Dr. Fumiko Chino opens up about her late husband’s diagnosis and...
Robyn, Dr. Josh Brody, and Dr. Tycel Phillips

DLBCL: The Latest in Treatment and Research

DLBCL: The Latest in Treatment and Research Discover the latest DLBCL treatments from two top lymphoma...
Dr. Josh Brody and Dr. Lorenzo Falchi

DLBCL in 2023

DLBCL in 2023 The Patient Story founder and DLBCL advocate Stephanie Chuang leads the conversation with...
Dr. Toufic Kachaamy is a gastroenterologist trained in advanced endoscopy, including endoscopic ultrasound, he helps care for patients fighting pancreatic, stomach, esophageal, colon, liver or bile duct cancer at our Phoenix hospital. As Chief of Medicine at City of Hope Phoenix, Dr. Kachaamy has clinical leadership responsibilities for several medical departments and supportive care services.

Colorectal Cancer in Young Adults

Toufic Kachaamy,MD Role: Chief of Medicine and Director of Gastroenterology Focus: endoscopic oncologyProvider: City of Hope...
Andrew Schorr and Dr. Nitin Jain

CLL Highlights from ASH 2022

CLL Highlights from ASH 2022 Patient advocate Andrew Schorr and hematologist Dr. Nitin Jain discuss the...
Valarie Traynham and Dr. Shakira Grant

Black Myeloma Patients: Access & Disparities

Research on Black Myeloma Patients, Access & Disparities Patient advocate Valarie Traynham and Dr. Shakira Grant...

Categories
Hodgkin Patient Events

The Latest in Hodgkin Lymphoma Treatments

The Latest in Hodgkin Lymphoma Treatments

How to Talk to My Doctor About Options

Edited by:
Katrina Villareal

The Hodgkin lymphoma treatment options live discussion took place in August 2023, hosted by The Leukemia & Lymphoma Society, Imerman Angels, and The Patient Story.

Sharing from real-life experience, the panelists were Stephanie Chuang, founder of The Patient Story and non-Hodgkin lymphoma survivor, Dr. Matthew Matasar, Hodgkin lymphoma specialist at Rutgers Cancer Institute, Dr. Samantha Siegel, both a doctor and Hodgkin lymphoma patient, and Chelsey Gomez, Hodgkin lymphoma patient advocate and artist behind Ohyouresotough.

The discussion covered an overview of Hodgkin lymphoma, standard, and emerging first-line treatments, options for relapsed/refractory patients including immunotherapy and stem cell transplants, managing side effects, the importance of doctor-patient relationships and shared decision-making, and key takeaways about community support and focusing on the quality of life during and after cancer treatment.



The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Stephanie Chuang, The Patient Story: Hi, everyone! I’m very excited to have everyone to join us. We’re hosted by The Leukemia & Lymphoma Society, Imerman Angels, and The Patient Story. We have an incredible group of panelists tonight.

I’m a non-Hodgkin lymphoma survivor, founder of The Patient Story, and first and foremost, a patient advocate. The Patient Story was born out of my own experience with cancer. At the time, as a patient, I was looking for humanized answers for what my life with cancer would look like.

Fast forward to today, The Patient Story has hundreds of in-depth conversations and stories with cancer patients, care partners, and top medical experts in video and across our platforms. You can find us on ThePatientStory.com, YouTube, and social media channels. The goal for us is to help navigate people after getting that diagnosis.

We’re proud to partner with The Leukemia & Lymphoma Society or the LLS, which is the world’s largest nonprofit health organization dedicated to funding blood cancer research. They also provide a lot of education and services and that includes their information specialists who are just one call away to help with your questions. They also have financial scholarships and we’ll talk about that at the very end as well.

Last but not least is Imerman Angels, a wonderful peer-to-peer support group program. I used Imerman while I was a cancer patient and they will connect cancer patients and caregivers with mentor angels. They will use things like age, gender, where you live, and experiences to try and make that match.

We also want to give a special thanks to Seagen for supporting our educational program and allowing us to really do the work that we want to do in true patient education, connection, and space and provide it for free; that’s really important to us.

We want to stress that The Patient Story, The Leukemia & Lymphoma Society, and Imerman Angels all retain full editorial control of the entire program. A reminder that this is not meant to be medical advice or a substitute for medical advice. It is educational and we’re hoping that you’re able to take away great information tonight back to your own doctors and healthcare team.

Introduction

Stephanie: First up, Dr. Matthew Matasar, someone we’ve been able to work with before. He’s the chief of the Division of Blood Disorders at Rutgers Cancer Institute. He’s been a medical oncologist specializing in lymphoma for more than 25 years and leads clinical trials to try and find new and better ways to treat diseases like Hodgkin lymphoma.

Dr. Matasar, what drew you to lymphoma? What inspires you to do the research that you do and dedicate yourself to patient care?

Dr. Matthew Matasar: First of all, thanks for having me. I’m really thrilled to have this opportunity. What we’re doing together really matters and makes a big difference so thanks for making this happen.

I started out as a philosophy major back when I was in college, wanted to go into medical ethics, and then got sucked into oncology.

I saw oncology in general and lymphoma, especially as a place where I could make a difference, where being a really good doctor or being a crummy doctor makes a difference. I wanted to be the kind of doctor who listens to his patients, works with them as individuals, and understands that when they’re coming to me, they’re having the worst day of their life. I want to try to make it a little bit better using my brain and my heart as best I can.

If I do my job well, it’ll be better than if I don’t. These things matter and what I do matters. I feel this pride in knowing that what I’m doing is making a difference for people in my clinic, individual by individual, and by trying to develop newer, more effective, and less toxic treatments.

Maybe I could leave a little bit broader mark on the world. Trying to make a difference. What we’re doing here is trying to make a difference.

Stephanie: Yes, and you’ve been doing that and we really appreciate that you go above and beyond to help patients and their families.

Next up, from one doctor to another, Dr. Samantha Siegel, both a doctor and a patient, which is a really interesting perspective. Sam, I’m really, really grateful to have you here and lucky to get to know you. Thank you for all that you do.

We will get into your Hodgkin lymphoma story shortly but, first, we’d love to hear more about you outside of the cancer diagnosis because as we know, we are so much more than that.

Dr. Sam Siegel: Thanks for having me. I’m so excited to be here and to connect with you and all of the patients, caregivers, and community members.

I am one-half of a sandwich. I’m married to another doctor named Sam, but we got married before med school. Sam squared, Samwich, he Sam she Sam — a lot of iterations of that that are fun and interesting.

I’m a proud mom of three kids. They’re my best teachers in this world. They’re so incredible. Parenting them through cancer and through medicine has been very interesting. It’s always exciting. Our house is never boring.

I love jogging, painting, and playing guitar. I’ve recently become an enthusiast of ecstatic dance. It’s like a nightclub but during the day. No booze and kids are allowed. It’s just freestyle dancing.

I used to dance growing up and I’ve gotten back into it lately as a way to connect with myself and my body. I found it really helpful in healing from chemo and chemo treatment. I love dancing, music, moving through music, cooking, and food.

I’m hoping to unify how other people enjoy aspects of being alive and how we can talk to our doctors about how to tailor our cancer treatment to what matters most to us. That’s really important to me because if I couldn’t jog, play my guitar, paint, or work with my hands anymore, that would be pretty devastating to me.

All of that matters when it comes to talking with my doctor. I’m excited to be here as a doctor, as a patient, as a person, as a human being, first and foremost so thank you.

Stephanie: Thank you, Sam. I couldn’t have put it better myself. It’s not just about extending life, it’s the quality of life and even after treatment.

We will talk about the long-term side effects because we all want to live and get back to living the way that we know how and maybe better.

Up next, another awesome rock star. You may know her as the genius behind Ohyouresotough, which is amazing artwork. Chelsea Gomez, thank you for being here tonight. As a patient advocate, you’ve grown such a community yourself. Can you also tell us more about you outside of the diagnosis?

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Chelsey Gomez: Hi, everyone! I’m so happy to be here.

I’m from Florida. I just turned 33 and have a daughter.

I’m a professional artist. I own my own cancer awareness brand named Ohyouresotough. If you ever see anything of mine, you’ll see that I like to cope with hard things with humor. It’s really important to see the lighter side because a lot of the cancer world is not so fun.

I love all things art. I use clay, I paint, and I do digital art. When I’m not doing art, I’m running after my daughter to do whatever she wants to do, like play Barbies. I’m really excited to be here. Thank you for giving me the opportunity to share my story, too.

Stephanie: We appreciate it. Without voices like yours and Sam’s, we wouldn’t have the platform that we have today. Both of your stories are on The Patient Story so thank you for being here and for sharing your voice to help other people.

What is Hodgkin lymphoma?

Stephanie: Let’s get down to business. We’re going to try to avoid medical terminology as best as possible. Dr. Matasar, what is Hodgkin lymphoma?

Dr. Matasar: Working through things without terminology is theoretically what we’re supposed to be doing all day any day. When we’re talking to patients, families, and caregivers, we try to help people make sense of their illness.

What is lymphoma? Lymphomas are types of cancer. They’re cancers of cells called lymphocytes or immune cells. Lymphomas collectively are cancers that come from and are of the immune system.

That’s not to say somebody who has a lymphoma has a bad immune system — far from it. In fact, most people diagnosed with Hodgkin lymphoma have perfectly fine immune systems. They’re not constantly sick with infections.

For whatever reason, some cells mutate or change in a way that makes them live too long and start making copies of themselves. Then those copies live too long and they copy and the copies copy.

Compounding that, your body sees these cells that are copying that don’t belong there and views them as foreign or not right. In a similar way to an oyster that has a little grain of sand in it, it starts making a pearl around it. The body reacts to these cells and causes inflammation and scarring to try to wall off these weird cells causing even more swelling typically in lymph nodes, although that swelling can happen outside of lymph nodes in other parts of the body as well. It’s that swelling that usually leads to people being diagnosed with this type of specific cancer.

Sam’s Hodgkin lymphoma diagnosis

Stephanie: Sam and Chelsey, you had symptoms and red flags that helped you figure out something’s not right. Sam, what was your experience?

Sam: I wasn’t feeling right. In hindsight, it’s interesting to go back and piece things together, but I felt this vague sense of tiredness. I didn’t have enough gas in my tank. I was still running 10 miles on the weekends, but coughing a lot.

I didn’t have the steam for my usual level of physical exercise. I was coughing a lot, particularly at night. There were a lot of California wildfires at that time so I thought it was the air.

And, of course, I’m tired. Every parent during the pandemic is tired, especially with our kids doing homeschooling. It’s a whole different world. Then being a doctor at that time was very hard.

But then I got a rock-hard lump that appeared above my collarbone. It was painless and rapidly growing. As a doctor, I knew that I had cancer.

I got a scan and mine said something about possibly metastatic lung cancer or breast cancer. They weren’t sure so I needed to get a tissue biopsy. A little bit of time transpired between noticing the symptoms and getting the tissue biopsied.

Once that came back as Hodgkin’s lymphoma, I knew what the path ahead would be like. Around the time I was diagnosed in 2021, there was this big change that started happening with immunotherapy. It was the standard of what had been happening for a really long time, which is ABVD or a combination of four drugs.

I got on the eve of my 30th birthday. Then I started ABVD.

There was a question about my staging, whether I was stage 2AE or stage 4 because there was some lung infiltration. Long story short, that meant that I was going to get six months of ABVD. 

After a month or two, the coughing went away and I started feeling better. My cough came back at about month 2 to 3. We thought it was the bleomycin. I’m a runner and that’s very, very bad. We ended up dropping the bleomycin and I continued on AVD alone for the remaining four months.

Coincidentally, there had been a trial around that time to say that that’s okay, the de-intensification of therapy. Dropping the bleomycin became a standard thing, if people got a scan after a couple of months that showed that the body was responding.

My PET scan after two months looked really good. My cancer was responding and I was having that cough. We dropped the bleo and then I did four more months of AVD and boy, was it hard. It was really, really hard.

I had a lot of side effects. I struggled a lot and I struggled with that feeling. I hear people say about Hodgkin’s that this is the good one. It certainly didn’t feel that way. It felt really hard.

Stephanie: I hate when I hear whenever people say you got the good one.

Chelsey’s Hodgkin’s lymphoma diagnosis

Stephanie: Chelsey, how about you? What were the first symptoms for you or the red flags?

Chelsey: I was first diagnosed with Hodgkin’s in 2018 when I was 28. I was working a lot of hours so I was very tired, but I didn’t think much of it.

I had weight loss. I was trying, but it never worked before and then I suddenly started losing weight. I had shortness of breath and, at one point, I almost crashed my car because I had a vertigo episode. I ended up going to the doctor and they told me it was just stress.

The only reason I got diagnosed with Hodgkin’s was I eventually had a lump come up on the left side of the base of my neck. I went to urgent care. They told me that I just needed antibiotics, but there was something in their eyes that told me that wasn’t all I needed.

Eventually, my family forced me to go to the ER and we got a full biopsy done. I was in the hospital for the first time. Long story short, I had stage 2 Hodgkin’s and I also had ABVD. About halfway through, we had to drop below because I had toxicity.

I was re-diagnosed with Hodgkin’s in 2019 as well.

Dr. Matasar: First, hearing Chelsey, how you knew better, listened to your body, didn’t take no for an answer, and saw something that made more sense to you. The importance of that just can’t be overstated.

I meet so many patients who say, “Well, they told me not to worry,” or “My doctor told me to come back in six months and I was getting worse and worse, but I was told not to worry. I was told it was something else.” Congratulations on knowing better and I hope that people take heed and learn from the example that you set.

Chelsey: Especially when you’re young. It’s hard sometimes to speak up. But even if you’re young, you know your body.

Dr. Matasar: Maybe even especially if you’re young. We all know that old doctors sometimes don’t have the best reputation for listening to young people, trusting them, or taking them as seriously as they ought to be taken. Doubly so because of your youth at the time.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Changes in the treatment of Hodgkin lymphoma

Stephanie: Dr. Matasar, the treatment landscape in Hodgkin lymphoma has been changing quickly. Can you share about the evolution that’s been going on?

Dr. Matasar: Back in the ’80s, ’90s, and 2000s, clinical trials to try to make Hodgkin lymphoma better were all about intensification. How can I ratchet the treatment up to make it even stronger, even more toxic, but even stronger against lymphoma?

We were climbing that mountain of pushing to see just how much chemo we could cram into someone’s gullet in pursuit of a cure. All we had was chemo so what you want to do is more.

We’ve come over the other side of the mountain now and we’re in a very different place. As a discipline and lymphoma experts in the field, we’ve moved away from intensification.

We’re into de-intensification, personalization, and leveraging treatments other than chemotherapy as we try to help both maximize the chances of cure and minimize the short- and long-term risks of our treatment.

We’ve gone away from uniformly using ABVD, which remains a very good treatment and a very commonly used treatment.

More often, we’re now using other adjunctive treatments like brentuximab vedotin or ADCETRIS in lieu of bleomycin, which both Chelsey and Sam talked about potentially injuring their lungs, leading to cough or shortness of breath.

We’re finding ways to cure more people and, at the same time, cause less harm along the way and that’s really where the future of Hodgkin’s lymphoma is going to take us. We try to make even more progress on this mission towards more effective and less toxic treatments.

Stephanie: I love that that’s the trend and that we can continue going down that path. 

First-line treatment for Hodgkin lymphoma

Stephanie: We’ll talk about some of these newer promising treatments and new directions, but can you tell us a little bit more about the standard first-line treatment for Hodgkin lymphoma?

Dr. Matasar: As oncologists, when we meet a Hodgkin’s patient for the first time and we work through their treatment choices, we think through those choices together with our patients and their families.

We split people into different categories as we understand the risk of their disease and the options that are presented because of that.

One first way to try to put people into categories to help them think through their choices together is based on stage. We talk about early-stage Hodgkin lymphoma and advanced-stage Hodgkin lymphoma.

People will often ask, “What’s my numerical stage? Is it stage 1, stage 2, stage 3, stage 4?” We heard from Sam that sometimes, it’s not even clear to us as oncologists exactly what the stage is. Is it a stage 2E or is it a stage 4?

The staging exercise, which sometimes feels very black and white, can have shades of gray. We do our best to try to put people into risk categories informed by their stage and then think through the treatments that we know are best for that stage of illness.

Early-stage Hodgkin lymphoma treatment

Dr. Matasar: For the vast majority of people with early-stage Hodgkin lymphoma, the standard of care remains to be ABVD. It’s been around longer than I’ve been a doctor. It’s an oldie but a goodie and it still will cure the vast majority of patients.

Sometimes we think about radiation therapy as part of that treatment and sometimes not. However, ABVD for early-stage Hodgkin lymphoma remains the standard of care.

Advanced-stage Hodgkin lymphoma treatment

Dr. Matasar: For most patients with advanced-stage Hodgkin lymphoma, we’ve moved away from ABVD. This is based on really powerful clinical research comparing ABVD to a program where the bleomycin was swapped out in lieu of this newer immunotherapy called brentuximab vedotin, which is a type of drug called an antibody-drug conjugate.

An antibody is a protein that binds onto the surface of a cell and stapled to that is a toxin so this conglomerate attaches onto the Hodgkin cell, the Hodgkin cell absorbs it, and then the toxin is released inside the cell — like a Trojan horse sneaking into the city and releasing the soldiers inside.

This newer program where bleomycin was swapped out for brentuximab — so BV-AVD instead of ABVD — not only got more people into remission and kept them in remission longer, but actually led to a higher cure rate, people living longer, and everything good that we as doctors want for our patients.

Because of this important research, we really now use brentuximab plus AVD as our traditional standard of care treatment for patients with advanced-stage Hodgkin lymphoma in pursuit of a cure.

Role of radiation in Hodgkin lymphoma treatment

Stephanie: You mentioned radiation therapy as well and that has been its own sort of beast, if you will. There are a lot of considerations about long-term side effects and where the mass is located. What role do you think radiation therapy has been playing? What are your thoughts about whether it should still be used and in what situation?

Dr. Matasar: It’s a great question and you’re right, it is sort of its own beast. Back in the ’80s and early ’90s, almost everybody with early-stage Hodgkin lymphoma got radiation treatment as part of their care.

We knew then and now that using radiation therapy would cure a few more patients than not, but that slight improvement in cure rate never translated to people living longer.

It’s a trade-off. You may do a little bit better with Hodgkin lymphoma in some situations but you’re paying a steep price oftentimes in terms of long-term effects, late effects, and risks of health problems later in life.

That includes radiation therapy putting patients at a higher risk for other cancers later in their life, particularly younger women who need radiation therapy to the chest. If that radiation touches the chest wall and breast tissue, particularly for women under the age of 35 or especially under 30, it really does heighten the risk of breast cancer later in life.

Your heart also doesn’t like radiation therapy much more than the rest of you. We know that radiation therapy to the heart can lead to a higher risk of heart disease later in life.

There are all these consequences of the decisions that we make together in our pursuit of a cure. Because we know so well about these late effects of radiation therapy, increasingly, we try to be ultra choosy with whom we use radiation therapy.

We really restrict its use for what we think we really need to get a cure. For most patients, we can cure them just fine without using radiation therapy and putting people at risk for health problems later in life because of that treatment.

Use radiation therapy if you need to; it’s a great treatment. It can be life-saving when you need it but don’t use it willy-nilly.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Side effects of Hodgkin lymphoma treatment

Chelsey’s side effects of bleomycin

Stephanie: Chelsey, you experienced the toxicity and side effects of bleomycin. Can you talk to us about what that reaction was and what you did about it?

Chelsey: I had my fifth chemo right before New Year. I had chemo four other times, but I went home and spiked a really high fever all of a sudden. As a cancer patient, if it’s 100.4°F, you have to go. Mine was 102 and my husband said, “We’re getting in the car.” I was very lethargic and just not feeling well.

We ended up in the ER and they told me I was septic. Of course, my mom heard that as well. She was watching my daughter and she’s freaking out because it’s not good when you’re septic. They put me in the ICU and I was in the ICU for at least two days.

The symptoms dissipated after a few hours. I was feeling better, not 100%, but they started giving me antibiotics around the clock.

I had a feeling that it had something to do with bleomycin. I’ve researched what can happen with bleomycin because I have asthma and that was something I had to consider going into the treatments.

Everything I was seeing was adding up to it being toxicity, but there was nobody at that hospital who really treated cancer patients. They came in and out, but they weren’t there all the time.

It took about four days for my oncologist to actually come and see me. At that time, I pretty much diagnosed myself with bleomycin toxicity. I also stopped accepting the antibiotics because it wasn’t an infection. It was a reaction to this drug and it was confirmed later on.

I also had a pulmonary function test and I had a 30-point drop or something. I’m happy to report that I have regained a lot of my pulmonary function now many years out. For a lot of people, I know that’s something scary when you do go through this.

This was a local hospital and they had never seen this before. The doctor was saying, “You need to advocate for yourself, especially when you’re in a situation where you know your cancer probably better than the people that are there. It’s not your regular care team.” I had to speak up for myself and it was hard, but I did it.

Stephanie: I really appreciate that you spelled that out. Dr. Matasar talked about it earlier, too, and I know Sam’s a huge proponent of that as well.

You said it was hard and I think we’ve all experienced that as patients where you want to advocate for yourself. You hear it from other people. It can be a little bit difficult to speak up. Do you have any other tips for people who are on the fence about it, who aren’t sure if they’re supposed to speak up?

Chelsey: I wasn’t a great advocate for myself when I first got sick. The oncologist I ended up with was the one who was just walking by when I was in the ER initially and I thought it was fate. It wasn’t. Immediately upon meeting him in his office, he told me it was the good cancer.

I was like a unicorn of the Hodgkin’s. Nothing went how it was supposed to go. It wasn’t good at all. Sometimes I was quiet about it. I didn’t know what to do because I always look things up and he would call me Dr. Google but not in a nice way. I was scared to bring up a lot of things.

If you’re young and you’re scared or sometimes it’s when you’re female and you have a male doctor, it can be intimidating. Bring your family with you or somebody else you trust and have them speak up for you if you are scared to do it. I know a lot of people do that and it’s helpful.

When you’re inside that room, your mind goes fuzzy and you don’t even know what’s going on half the time. It can be the difference between having a good result or ending up pretty much needing a transplant like I did. I truly believe that if I had been a better advocate, I might have not needed one.

Stephanie: Thank you for going into all that. I can completely attest to blanking out in the doctor’s office and not hearing the same thing that my family heard. I appreciate that tip about bringing people in if you can.

Sam’s side effects

Stephanie: In terms of side effects, you worked with your doctor to manage them. Can you share anything that was helpful there? 

Sam: I had a lot of side effects. I had a lot of nausea and vomiting, yet I gained a ton of weight during AVD from all the steroids and I was developing a lot of problems from that. My glucose and liver enzymes were increasing. I had inflammation in various organs.

In hindsight, I think that was also making my neuropathy really bad because once my glucose got better and I lost weight, my pain and my nerves got better, too, despite the fact that I was getting more medicine that theoretically should have been impacting the nerves.

All your systems can be impacted. Taking care of the whole body is really important. I talked to my doctor about diet, lifestyle, and supportive therapy. What are some complementary therapies that I could try while getting my traditional medicines?

I also took a lot of medicine at the time. I needed pain medicine. I needed nausea medicine. I needed all the tools in the toolbox to cope with living day-to-day because it was just really hard.

The medicines caused a lot of mood and neuropsychiatric side effects. I had problems thinking. At some points, I had problems driving or following a list of simple items and that was really tough for me. That was a really far fall in terms of functioning, going from being a doctor to having trouble shopping a grocery list of five items so that was pretty devastating.

When I found out that I could do brentuximab as therapy leading up to the transplant, that gave me a huge quality of life back. As those other drugs cleared out and my body healed, I could think again and started feeling myself in here again. I’m not gone, I’m still there, and that mattered so much to me. It was a huge gift.

Stephanie: I really appreciate you bringing that to life because sometimes, we feel lost in that fog and how important it is to get any semblance of that quality of life back of ourselves. Your story shares that so powerfully.

Immunotherapy for Hodgkin lymphoma

Stephanie: We’re going to shift to combination therapy for the front line. Patient Matthew S. asks, “How successful have immunotherapy trials been in regard to Hodgkin lymphoma?” Dr. Matasar, can you explain the idea behind combination drug approaches and for whom would this benefit?

Dr. Matasar: We’ve talked about the progress that we’ve made with swapping brentuximab vedotin for bleomycin.

Matthew’s question about immunotherapy is a really valuable one. This idea of immunotherapy has really been a revolution in a lot of different forms of cancer, but nowhere has it been more impactful than in Hodgkin lymphoma.

When we talk about immunotherapy in Hodgkin lymphoma, what we’re generally speaking about is a class of medicines called checkpoint inhibitors.

One of the ways that these Hodgkin’s cells survive in our body is they are able to effectively shield themselves from our normal healthy immune system cells. They put up these barricades and ways of shielding themselves or hiding or preventing our immune system from doing the trash.

There are two checkpoint inhibitors that are approved for Hodgkin lymphoma, which are very similar medicines truthfully: one called nivolumab and one called pembrolizumab — we’ll call them nivo and pembro for short. These medicines are able to strip those shields off of the Hodgkin lymphoma cells and allow your immune system to see what it was otherwise blind to.

The treatment itself does nothing to the cancer cells. It does not kill a single cell all by itself. What it does is re-enable your own body’s immune system to do the work. It’s a game-changer.

When we use these medicines by themselves and use them as a treatment for a patient who’s been failed by many different prior chemotherapies, they’re able to put people into remission more than half the time.

They’re actually able to cure some patients. Despite chemotherapy having failed again and again and again, this medicine is able to eradicate the lymphoma. It goes away and never comes back. That’s amazingly powerful to be able to say and it’s an amazingly powerful treatment modality for patients with Hodgkin lymphoma.

The more we learn about how good these medicines work, the more we want to use them for more patients to try to help cure more people. It went from being a last-ditch effort after everything else has failed to be part of the treatment when it comes back. Using it in that situation was able to help more patients.

We’re now seeing the initial results of our first trials of using it as part of the first treatment. Instead of ABVD or brentuximab plus AVD, we’re combining nivo or pembro with chemotherapy like AVD and we’re starting to see very promising early results.

BV-AVD vs. ABVD as first-line treatment

Stephanie: How much is brentuximab and AVD being used? Is it standard of care or does it just vary depending on the hospital system or the healthcare provider versus going to ABVD first-line?

Dr. Matasar: It’s a little bit hard. Everybody’s situation is a little bit different. There are standards of care, which means that all things being equal, it’s sort of a one-size-fits-all approach.

Medicine is never that clean or that easy. There are times when ABVD would be a standard for early-stage disease, but we have to use brentuximab instead of bleo. There are people with advanced-stage disease who even if BV-AVD would be the standard, I still want to use ABVD for this individual patient.

This happens because doctors listen to our patients and we take into account their personal priorities, preferences, and individual risk profile. All of these medicines have their own pros and cons and their own risks and rewards.

A treatment program is best when it’s personalized and done in the context of a doctor and a patient having meaningful and valuable conversations about what matters to that person. Is it just a cure regardless of side effects? Is it being able to play the guitar and run? What is it about the treatment that we need to take into account as we map a path toward cure?

Stephanie: Any idea of when we could see the FDA approval of checkpoint inhibitors in the front line?

Dr. Matasar: Certainly not anytime soon. The first results that we had were read out at major conferences. This is still very early data.

When it comes to Hodgkin lymphoma, doctors were very conservative. We don’t want to mess this up. We know that the stakes are high and that many people will be cured with traditional treatments. We don’t want to change gears until we’re really confident that we’re not hurting people in the process.

The initial safety readout of this combination using the checkpoint inhibitors in the first treatment looked better than any of us expected. There are a lot fewer immune-related side effects than we’re accustomed to seeing when using these immunotherapies. They do have their own immune-related side effects.

We want to see the data mature, as we say. We want to see how people do over time and make sure that there are no dangerous signals about increased late effects or late side effects happening as we gain more experience with this treatment approach.

Long story short, we don’t want to change anytime immediately soon. We’re probably looking a couple of years down the road.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Treatment for relapsed/refractory Hodgkin lymphoma

Stephanie: Dr. Matasar, how have the standard of care treatments for relapsed/refractory Hodgkin lymphoma patients been changing?

Dr. Matasar: Historically, when chemo failed, we would use other chemotherapy programs that use different chemotherapy medicines than the first cocktail. The most commonly used in America historically was a program called ICE: ifosfamide, carboplatin, etoposide. Different than ABVD because they’re different medicines, but still chemo.

We’ve moved away from ICE being the only standard of care and we’re using more of those other medicines — brentuximab, the checkpoint inhibitors. You can use one of them all by itself or in combination.

It’s informed, of course, by what we did the first time. If patients get brentuximab as part of their first treatment, we’re not going to rush into doing it a second time and want to do something a little different. Maybe we would use checkpoint inhibitors alone or combined with some milder chemotherapy programs.

This is the art of medicine. Trying to pick amongst a number of very effective choices and determining how to leverage those medicines and combine them to achieve our patient’s goals. Always with this view of maximizing the good and minimizing the bad.

Sam’s Hodgkin lymphoma relapse

Stephanie: Sam, you relapsed a month after finishing your first-line treatment. I can’t even imagine what a gut punch it was to go through all that and then find out that news. What was that conversation like about where you were going to go next?

Dr. Siegel: Gut punch is a really great way to put it because it was. I finished six months of ABVD, which then went down to AVD. Despite a scan saying that I had no evidence of disease, I felt pretty awful.

At that point, I wasn’t sure. Am I just feeling awful because this is just what a body feels like after you’ve had six months of this poison? Something in my gut was telling me that something wasn’t right yet, but my scan was clean so I just focused on recovery for a little bit.

Within a month, I started having symptoms that were eerily reminiscent of my initial symptoms — a wheeze only in the left upper part of my chest and a little pea-sized lump. That time around, I thought, Okay, I think I’m pretty clear what’s happening here.

I got a scan, which led to some biopsies and a diagnosis of a relapse. I’m already researching on Google the next treatment regimen that I’m going to have to go through. The whole while, I’m preparing myself that I’m going to have to go through ICE. 

I’m thinking for sure I’m going to have to go through something called ICE, DHAP, or one of these other regimens that have been used longer term for relapsed/refractory Hodgkin’s or salvage therapy.

When the relapse was confirmed, my doctor said, “There’s this drug now, a targeted therapy called brentuximab. Instead of doing ICE, would you be open to trying that alone for a couple of months and then repeating a PET scan to see where we’re at?”

There was a pretty decent chance that if the brentuximab didn’t get me into remission before the transplant, I would have to get ICE, a multi-drug, more traditional chemo. I was willing to take that chance because I felt so beaten up by having to get all those months of traditional cytotoxic chemotherapy and all the side effects.

The decision made sense to me at that time whereas maybe other people may have been, “No, I want to hit it hard and do that right away.” For me, I was going to take the least amount of poison possible to get me into remission before transplant.

It worked. I got a strong remission before my transplant. I went on to get the bone marrow transplant then I took brentuximab. I did almost a year of post-transplant consolidation treatment.

Because those studies and the data were just coming through, my doctor said, “You know, this is kind of becoming a thing now based on the research and this seems like it might really fit you based on how bad you’re feeling,” so that was perfect for me. I was so grateful.

Stephanie: The timing matters, right? It just happened.

Stem cell transplant

Dr. Matasar: The first thing to say is that there are two types of transplants. What we’re talking about so far is a treatment called autologous, or from yourself, stem cell transplant.

To call it a transplant is actually wrong. There’s no transplantation going on; it’s just a word that we use. This treatment that you’re hearing from Chelsey and Sam is basically just a trick. It’s a way of letting us give a round of super strong treatment.

With regular strength treatment like ABVD or ICE, we give those treatments and then let people recover. Sometimes if the chemo is stronger, you might need to boost the recovery.

Here, we’re talking about a single course of treatment, usually six days, that is so strong that if I gave it to my patient, gave them a hug, and said, “I’ll see you later,” I wouldn’t see you later. It’s too strong.

We need a very powerful antidote for such a powerful treatment. The antidote that we use is actually a person’s own stem cells, these special Adam and Eve progenitor cells that live in our bodies and let us heal.

We filter the blood ahead of time with a process like a mini dialysis where we filter out a few of those special stem cells. We put them in the freezer, give people six days of chemotherapy, thaw out those cells, and give them back as an antidote.

The course of the six days of treatment and the stem cell re-infusion as a little mini transfusion, that’s the antidote. That is we are calling a transplant.

That’s different than an allogeneic or donor stem cell transplant where there really is transplantation going on. Your immune system is being put to sleep and a new immune system from a sibling or a stranger is put into your body to give you a new immune system. We then task that new immune system with attacking your cancer. For us, that’s a very different ball of yarn.

Chelsey’s Hodgkin lymphoma relapse

Stephanie: Patient Caitlin M. asks, “For relapsed/refractory patients, are there other options aside from chemo to get into remission before a stem cell transplant?”

Chelsey, you went through immunotherapy, but unlike Caitlin, you didn’t respond. After three cycles, your PET scan showed disease progression. I can’t imagine what that was like.

It would be great to understand more about your experience in terms of the conversation you were having with your doctor ahead of the transplant. Are there questions you wish you’d ask your doctor?

Chelsey: I relapsed in the latter part of 2019. I switched to the Mayo Clinic for my care. I had been researching through the relapsed/refractory Hodgkin’s groups on Facebook. I saw nivolumab, brentuximab, and all of those things, and they were a lot less harsh.

I asked about it when I went there and it was a newer thing at that time. My oncologist said, “Yeah, we can give it a try. It’s had really good results.”

Sam mentioned that the side effects of ICE and the side effects of brentuximab are a night-and-day difference. I don’t think anybody wouldn’t want to try the less harsh one leading up to the transplant.

I had three of those treatments, had a scan, and my cancer progressed. My oncologist was honestly shocked as well that it didn’t respond whatsoever and that made me actually ineligible for maintenance, like what Sam had.

We switched to ICE. ICE was the first chemo where I had to be inpatient for three days every time. It was intense.

When your hair falls out on ABVD, for the most part, it’s slowly coming out. With ICE, it was clumps of hair coming out. I was very sick. It was very, very harsh chemo.

Chemotherapy & immunotherapy pre-transplant

Stephanie: Dr. Matasar, for relapsed/refractory patients, can you explain this combination of chemo and immunotherapy in the context of a transplant, hopefully, what this might lead to?

Dr. Matasar: Up until now, the goal for patients who have their disease come back despite good first treatment is to get their disease into remission and then into a round of high-dose therapy or autologous transplant in an attempt to maximize the chances of cure.

Can we cure people reliably and consistently without a transplant by leveraging these immunotherapies either alone or in combination with chemotherapy? This remains a clinical trial-type question; this is not a DIY thing.

My hope for the future is to use these treatments, particularly immunotherapies, to really limit our need to take people through the rigors of high-dose chemotherapy, cure more people, and cause fewer problems.

Determining the sequence of treatment

Stephanie: If the ABVD didn’t work, there’s a relapsed/refractory situation. Maybe there’s some radiation that’s been involved. You have studies about brentuximab, nivolumab, or pembrolizumab alone or in combination. How are doctors having that conversation about the right thing to do next? What is the most promising next course of option?

Dr. Matasar: This is the art standing next to the science. There is some artistry to what we try to do to figure out the right lid for each pot and how to help a patient navigate the course of their illness.

There is no one-size-fits-all anymore. It used to be ICE; that’s all we did. It worked well and it was awful. Now we have a range of choices.

You have to sit with a patient and think through it. How much disease is there that I’m trying to shrink away? How quickly is it growing? How do you feel? How sick is it making you? How quickly do we need to get you better? What was your first treatment? How well did it work? How badly did it not work?

Take all of these factors, try to cram it into your doctorly brain, and try to give some reasonable recommendations. Sometimes you’re going to be as gentle as brentuximab all by itself. Sometimes you’ll want to give more chemo. Sometimes you want to give checkpoint inhibitors alone or with BV. Sometimes you want to do checkpoint inhibitors plus chemo. These are all reasonable courses.

Ideally, what you’re doing as a doctor is working with your patient as a person, as an individual, and charting a course that makes sense for them, for their illness, and for their life.

Stephanie: It’s a really thoughtful response. Are some of the considerations the treatments you had before, how successful they were, what’s already been done… What about things like age or comorbidities or those kinds of factors?

Dr. Matasar: We try not to be ageist, but, truthfully, taking care of a 30-year-old is different than taking care of a 90-year-old and to not recognize that would be silly.

That being said, it’s always a matter of individualization — understanding an individual person’s goals, their preferences, what risks they’re willing to take, what matters to them, and then trying to figure out the best treatment for that person, given everything you know about them, about their value system, and about their goals of care.

Stephanie: Wonderful. I wish every doctor thought like you.

Long-term post-treatment side effects

Stephanie: We’ve talked a little bit about long-term or late-term side effects. Patient Ariadne J. asks, “What is known about long-term post-treatment side effects?”

Sam: I love this question because now I can plug survivorship, which is basically my newfound life passion as a patient-doctor. Cancer survivorship, even though a lot of people don’t necessarily identify with the word survivor, is an important thing to keep your finger on the pulse.

Survivorship applies to this area of medicine that’s changing and evolving. It’s anybody living after a cancer diagnosis and that could be during treatment if you’re on long-term treatment and that could be after your treatment is over.

There are a lot of ways that the cancer experience, even if the treatment goes perfectly, makes you question your life when you’re in your 30s and have your fertility changed. There are all these things that get impacted once you hear that big C word.

Survivorship is an evolving area in medicine that is trying to address all of that. For me, there was a lot. There was identity. There was this existential crisis. Death and dying and making sense of all of that.

The steroids and the other medicine that I had to take impacted my thinking and my emotions. I’m usually a pretty balanced, even person so that was a very hard roller coaster.

There’s some cardiac stuff for some people. Doxorubicin, which is part of the initial treatment, is something that we really need to be thinking about. We’re giving people this medicine that’s toxic to the heart in their 20s, 30s, and 40s. We need to talk about intensive lifestyle interventions like a healthy diet and cardiovascular exercise.

An overall program that focuses on wellness is hugely important in managing long-term side effects and integrative medicine. I’m doing an integrative medicine fellowship. I’m trying to unify everything that I learned in medical school with everything I needed as a patient to get better from cancer and cancer treatment and hoping to offer that to other people.

Those are practitioners that you could consider going to or looking up. Make sure that you communicate everything you’re trying and doing with all of the people who are in charge of your care, including yourself. You’re an important part of that conversation. Cancer survivorship is important for managing long-term side effects.

Stephanie: Chelsey, what were the long-term side effects for you? You talked about going into menopause, for instance.

Chelsey: The main thing I struggle with that is the most apparent in my everyday life is the cognitive side effects of all the different treatments. I honestly think it was from the extreme stress that I was under for so long.

I was on this job in an insurance company and I had to balance things with legal documents. I know that if I were to go back to that job, I would not be able to do it now and that’s taken me a long time to see that that’s okay. I’m still me and I just have to work with things differently.

I have fatigue a lot of times and joint pain. I often joke that inside, I’m 80 years old but on the outside, I’m in my 30s so it feels like that.

As Sam mentioned, there’s a lot of identity crisis that you have as a cancer patient. Who am I now? What happened to the old me? What can I do?

I really want to encourage people to seek community. Even just hearing from Sam, I’m sure some people will say, “Oh, other people feel like that?” That’s definitely what inspired me to start making art and connecting with others. It can truly make a difference in your long-term mental health in survivorship.

Stephanie: Thank you so much, Chelsey. You capture a lot of that in your artwork.

Stephanie: Dr. Matasar, with the newer therapies that are either just approved or in the pipeline, are we addressing some of these long-term/late-term side effects that hopefully people can avoid even years later after treatment ends?

Dr. Matasar: We are. A lot of the drive to develop these newer treatments has been informed by our understanding of late effects, cancer survivorship, and the risks that survivors of Hodgkin lymphoma treated with more traditional treatments go on to face.

We still need to follow with these newer treatments to watch for the possibility of late effects. We don’t believe that they’re going to cause as many or as severe, but part of the work of survivorship is learning from our survivors and walking that path with them as we see how their lives unfold over the years and decades to come.

The number one thing that I would encourage survivors to do is to work with your care teams on developing a survivorship care plan. It can be a paper document or a digital document. It should be something that lives with you that says what your diagnosis was, what your treatments were, and what our understanding is of what you can be doing to safeguard your health in the years to come.

That’s informed by understanding the possible long-term consequences of the treatments that you received, how doctors think you’re best served by taking care of yourself, and what doctors can do to prevent or reduce the risk of those problems as you go on to live your lives.

Stephanie: Wonderful. That’s a great tip. It’s great that the trend of more focus on survivorship after treatment is going to do wonders for so many people.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Shared treatment decision-making

Stephanie: We all want to be more empowered in our care to be able to ask doctors the questions, to feel that we can, and to ask ones that will be impactful.

Dr. Matasar, you talked about how the right treatment for each patient depends on different things like age, health, transplant eligibility, and goals of therapy. How can a patient find out the best treatment options for them and in what order? From a doctor’s perspective, what should that conversation be to elicit the best response for patients and their family members?

Dr. Matasar: I was really disheartened, Chelsey, to hear your story of your doctor disparagingly calling you Dr. Google. Nobody should have to deal with this stuff anymore. We’ve got to be better than that.

Everybody should be empowered to come into a conversation with a doctor as an equal partner in this process. I tell my patients, “This is about you. It’s not about me. I’ve got no ego in this. This is your mountain that you’re climbing. I’m not climbing the mountain. I’m the Sherpa. I’m dragging your bags alongside you. But this is your climb and I’m here to help.”

As patients or as caregivers, if you aren’t feeling valued and heard, then you may not have found the right fit for you in terms of your care team. Everybody should always feel free to be getting a second opinion. I Not enough people take advantage of this sometimes. They don’t want to insult their doctor. I don’t want to be that guy or that gal and I don’t want to be a pain in the ass. Be a pain in the ass.

I like nothing more than when my patients are pains in the ass and they come in with lots of questions. It means they’re doing their homework and they’re really invested. They want to learn and take advantage of whatever I’ve got up in my brain. I love nothing more and any doctor should love nothing more than a patient who’s all in on partnering with me on making this thing work.

Be vocal. Do your research if you want to. You don’t have to. You shouldn’t have to. But if you want to and if it’s something that you value, then that should be celebrated by your care team and never put down.

Chelsey: Have open discussions with your oncologist. If you do find other studies or other treatments, they should be open to answering your questions about it and not being dismissive, even if it’s not an option for you. They should be able to explain to you why or why not.

If you’re a young person about to have a transplant, even if you’re not but if you’re in childbearing age, please ask about fertility. I’m now in menopause at 33 years old.

It was explained to me and I understood. We didn’t really have time to waste to get me to transplant. That’s a conversation you should bring up not only when you’re going into a transplant but also when you first get diagnosed with cancer.

Stephanie: Thank you, Chelsey, those are very important questions. I was lucky to have first-line treatment and be okay, but I asked that question before my intensive chemotherapy. It’s great whenever we’re reminded: advocate for yourself depending on what you want your life to look like.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Finding a Hodgkin lymphoma specialist

Stephanie: Dr. Matasar, it’s clear that for relapsed/refractory patients, and if people are experiencing multiple relapses, it’s hard to find one answer from one doctor. They seek different opinions or get different responses. It’s a very personal discussion to be had.

Is there a right time to find a Hodgkin lymphoma specialist? When should that happen? How can you have that conversation?

Dr. Matasar: It’s tough because it’s very personal. My general philosophy is that people deserve to have expertise in their corner. I also recognize that people want to receive care close to home and they should be able to receive good care close to home.

In an ideal world, everybody would have an oncologist who lives close to them and everybody would have access to an expert to support the decision-making and to support the care journey. Sometimes that would be the same person.

If you lived near an expert, perfect. If you don’t have an expert in your neck of the woods and you want it, then you should have the opportunity to seek out that expert as a consultant and as a backup.

That doctor would work collaboratively with your local oncologist as a team to make sure that they’re doing everything to the best of their ability. You have the expert on standby in case things go sideways. In my mind, that’s the ideal.

If patients aren’t comfortable with what they’re hearing, even from me as an expert, go see somebody else. Hear from another set of lips. Get a fresh perspective. Maybe there will be a better fit in terms of that critical doctor-patient relationship.

Any doctor who doesn’t want you to get a second opinion doesn’t deserve to be your first opinion. Find the care that feels right to you. Trust your gut. The importance of the doctor-patient relationship is too great. It’s too critical in a relationship to settle for anything less than the best.

Stephanie: It’s so resonant and it’s powerful to hear from someone like you, Dr. Matasar. If the doctor doesn’t support you getting a second opinion, they’re not worthy of being your first opinion. I really love that.

The Latest in Hodgkin Lymphoma Treatments - How to Talk to My Doctor About Options

Final takeaways

Stephanie: If there’s anything else you want to add, what would you really want people to take away from this discussion?

Dr. Matasar: I’m just bringing it back to The Patient Story. What you’re doing, what we’re doing together is where modern medicine should be. We should be building community. We should be sharing experiences and stories and supporting one another.

Every patient’s journey is unique and yet we don’t walk these paths alone. If you can find ways to build community and be supported by various communities, it makes the journey a little bit less painful.

Chelsey: He said it really well. When I went to my second doctor, I felt comfort and care that I hadn’t gotten before. Make sure that you are having a good relationship with your doctor.

A sense of community is very important because a lot of society puts a little bit of an expectation on our shoulders to always be brave, positive, and strong warriors, and not everyone feels that way.

I just want you to know that’s okay. It’s okay to authentically be yourself and talk about the hard parts of cancer, not just the smiling, ringing the bells, and all of that. There’s a lot more to cancer than that. It’s okay for you to feel the way that you feel, however that is.

Sam: Having lots of questions doesn’t make you anxious so it’s okay to have lots of questions and concerns and to look things up. It’s okay to reject that label because you’re just appropriately concerned about your life and the quality of your life.

Some doctors may be more attuned to knowing to ask about what’s really important to you in your life. Some people may be really busy that they forget that. As patients, it’s up to us to tell our doctors what’s really important to us and things that we like doing.

Share with your doctor what’s really important to you. Not only will it help them to know you as a human being, but it will help inform treatment decisions.

There were times during my treatment and I’ve heard from other patients where it felt like to want anything more than not dying was greedy. We’re beyond that now in medicine.

We are in the era of personalization, community, and individualized care within the guidelines of all the new things that are being discovered. It’s not greedy to want to keep exercising to some degree or keep doing your art or whatever defines the quality of life for you.

Tell your doctor what’s important to you. Reject the anxiety label. Let’s shift the focus from mortality to vitality in cancer. It’s so much more than just not dying. It’s the living part.

Stephanie: You both have exemplified that so much. I’m really grateful to have had you, Chelsey, and Dr. Matasar doing your work in research and helping patients and families holistically. Thank you for the work that all three of you are doing as advocates.


More Medical Expert Interviews

Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks With Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks Dr. Lecia Sequist discusses using AI to detect lung...
Dr. Mark Lewis, Dr. Kerry Rogers, Dr. Ruben Mesa

Trends in Cancer Research 2022

Learn from three of the top cancer specialists about cancer treatment trends, including precision medicine...
Jack Aiello and Dr. Alfred Garfall feature profile

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma Hematologist Alfred Garfall, MD, MS...
ASH 2023 multiple myeloma

The Latest in Multiple Myeloma: Understanding Promising Treatment Options

The Latest in Multiple Myeloma: Understanding Promising Treatment Options Patient advocates Cindy Chmielewski and Jack Aiello...

The Latest in Multiple Myeloma with Caitlin Costello, MD

Dr. Costello discusses the latest in multiple myeloma treatment from ASH 2022, including the MAIA...
The Latest in Multiple Myeloma Treatments - Clinical Trials

The Latest in Multiple Myeloma Treatments

The Latest in Multiple Myeloma Treatments: What Clinical Trials are Available to Me? Patient advocate Cindy...
The Latest in Lung Cancer Treatments - Clinical Trials

The Latest in Lung Cancer Treatments

The Latest in Lung Cancer Treatments: Is a Clinical Trial Right for Me? Leading experts Estelamari...
Hodgkin Lymphoma ASH 2023 feature profile

The Latest in Hodgkin Lymphoma: Treatment Options in 2024

The Latest in Hodgkin Lymphoma: Treatment Options in 2024 Dr. Matthew Matasar, chief of blood disorders...
Dr. Matthew Matasar

The Latest in Hodgkin Lymphoma

Matthew Matasar, MD, MS Dr. Matthew Matasar, chief of blood disorders at the Rutgers Cancer Institute...

The Latest in Genetic Testing in 2023

Abigail and Sue sat down with The Patient Story to discuss FORCE, the genetic component...
Lesley Glen and Dr. Roberson sat down with The Patient Story to discuss patient research.

The Latest in Breast Cancer Patient Research

Lesley and Dr. Roberson sat down with The Patient Story to discuss patient research and...
Dr. Alok Tewari

Testicular Cancer: What Patients Need to Know

Testicular Cancer: What Patients Need to Know Medical oncologist Alok Tewari, MD, PhD, who specializes in...
SABCS 2022 Highlights feature profile

SABCS 2022 Highlights

SABCS 2022 Highlights Top breast cancer doctors Dr. Paolo Tarantino with Dana-Farber Cancer Institute and Dr...
Dr. Ajai Chari and Dr. Sandy Wong

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022 Multiple myeloma specialists Dr. Ajai Chari with Mount Sinai...
Dr. Kamran Mirza

Pathologists: The Unseen Doctors of Your Medical Team

Pathologists: The Unseen Doctors of Your Medical Team Hematopathologist Kamran Mirza, MD, PhD, explains more about...
Hodgkin Lymphoma Side Effects and Holistic Approach

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care Dr. Andy Evens from Rutgers Cancer...
Dr. Caitlin Costello Dr. Sagar Lonial

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022 Dr. Caitlin Costello and Dr. Sagar Lonial discuss...
Dr. Serge Verstovsek and Dr. Naveen Pemmaraju

Myelofibrosis Highlights from ASH 2022

Myelofibrosis Highlights from ASH 2022 Dr. Serge Verstovsek and Dr. Naveen Pemmaraju discuss cutting-edge treatments and...
Dr. Muhamed Baljević and Dr. Josh Richter

Multiple Myeloma in 2023

Multiple Myeloma in 2023 Long-time myeloma patient and advocate, Jack Aiello, leads the conversation with Dr...
Dr. Chadi Nabhan

Monsanto Roundup Trials Update

Chadi Nabhan, MD, MBA Dr. Chadi Nabhan shares how he got involved in the Monsanto trials...
Dr. Michael Hall

Lynch Syndrome: What Patients Need to Know

Lynch Syndrome: What Patients Need to Know Medical oncologist Michael Hall, MD, MS, discusses Lynch syndrome...

Lola Fayanju, MD, MA

Dr. Fayanju, MD, MA Role: Chief, Division of Breast Surgery Focus: Breast Cancer Provider:...
Let's Talk CLL LIVE

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE – Transcript

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE Patients, care partners, and a panel...
Dr. Nicole Lamanna, Dr. Spencer Bachow, and Lisa P.

How to Work With a CLL Specialist

How to Build a Strong CLL Team Nicole Lamanna, MD, from Columbia University Medical Center, Spencer...

How Long Can You Live with Chronic Lymphocytic Leukemia

How Long Can You Live with Chronic Lymphocytic Leukemia? Dr. Adam Kittai and Dr. Joanna...
Jack Aiello and Dr. Shaji Kumar

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022 Patient advocate Jack Aiello and hematologist Dr. Shaji...
Abigail Johnston feature profile

Health Insurance and Cancer Treatment

Health Insurance and Cancer Treatment Abigail Johnston, a metastatic breast cancer patient and lawyer, talks about...
Dr. Fumiko Chino feature profile

Financial Toxicity of Cancer Treatment

Financial Toxicity of Cancer Treatment Dr. Fumiko Chino opens up about her late husband’s diagnosis and...
Robyn, Dr. Josh Brody, and Dr. Tycel Phillips

DLBCL: The Latest in Treatment and Research

DLBCL: The Latest in Treatment and Research Discover the latest DLBCL treatments from two top lymphoma...
Dr. Josh Brody and Dr. Lorenzo Falchi

DLBCL in 2023

DLBCL in 2023 The Patient Story founder and DLBCL advocate Stephanie Chuang leads the conversation with...
Dr. Toufic Kachaamy is a gastroenterologist trained in advanced endoscopy, including endoscopic ultrasound, he helps care for patients fighting pancreatic, stomach, esophageal, colon, liver or bile duct cancer at our Phoenix hospital. As Chief of Medicine at City of Hope Phoenix, Dr. Kachaamy has clinical leadership responsibilities for several medical departments and supportive care services.

Colorectal Cancer in Young Adults

Toufic Kachaamy,MD Role: Chief of Medicine and Director of Gastroenterology Focus: endoscopic oncologyProvider: City of Hope...
Andrew Schorr and Dr. Nitin Jain

CLL Highlights from ASH 2022

CLL Highlights from ASH 2022 Patient advocate Andrew Schorr and hematologist Dr. Nitin Jain discuss the...
Valarie Traynham and Dr. Shakira Grant

Black Myeloma Patients: Access & Disparities

Research on Black Myeloma Patients, Access & Disparities Patient advocate Valarie Traynham and Dr. Shakira Grant...


Categories
Hodgkin Hodgkin Lymphoma Hodgkin Lymphoma Oncologist Medical Experts Medical Update Article Oncologist Patient Events

The Latest in Hodgkin Lymphoma

The Latest in Hodgkin Lymphoma with Matthew Matasar, MD

Dr. Matthew Matasar

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

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

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

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

Dr. Samantha Martin



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


Samantha S. happy no more chemo

Introduction

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

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

Samantha S. walk outside

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

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

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

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

Samantha S. thoracic surgery post-op

Samantha S. getting strong post-BMT

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

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

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

Tell us about your journey into medicine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How do chemotherapy and immunotherapy work?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What does staging mean in cancer?

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

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

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

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

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

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

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

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

Where do PET scans fit in the treatment plan?

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

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

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

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

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

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

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

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

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

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

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

Where does radiation fit in all this?

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

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

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

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

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

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

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

Survivorship & patient care

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

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

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

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

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

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

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

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

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

Advances in the treatment of the relapsed/refractory Hodgkin

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

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

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

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

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

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

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

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

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

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

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

Any words of advice to patients and caregivers?

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

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

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

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

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

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

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

Dr. Matasar: Sounds like a wonderful oncologist.

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

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


More Medical Expert Interviews

Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks With Dr. Lecia Sequist

Using AI to Detect Lung Cancer Risks Dr. Lecia Sequist discusses using AI to detect lung...
Dr. Mark Lewis, Dr. Kerry Rogers, Dr. Ruben Mesa

Trends in Cancer Research 2022

Learn from three of the top cancer specialists about cancer treatment trends, including precision medicine...
Jack Aiello and Dr. Alfred Garfall feature profile

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma

The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma Hematologist Alfred Garfall, MD, MS...
ASH 2023 multiple myeloma

The Latest in Multiple Myeloma: Understanding Promising Treatment Options

The Latest in Multiple Myeloma: Understanding Promising Treatment Options Patient advocates Cindy Chmielewski and Jack Aiello...

The Latest in Multiple Myeloma with Caitlin Costello, MD

Dr. Costello discusses the latest in multiple myeloma treatment from ASH 2022, including the MAIA...
The Latest in Multiple Myeloma Treatments - Clinical Trials

The Latest in Multiple Myeloma Treatments

The Latest in Multiple Myeloma Treatments: What Clinical Trials are Available to Me? Patient advocate Cindy...
The Latest in Lung Cancer Treatments - Clinical Trials

The Latest in Lung Cancer Treatments

The Latest in Lung Cancer Treatments: Is a Clinical Trial Right for Me? Leading experts Estelamari...
Hodgkin Lymphoma ASH 2023 feature profile

The Latest in Hodgkin Lymphoma: Treatment Options in 2024

The Latest in Hodgkin Lymphoma: Treatment Options in 2024 Dr. Matthew Matasar, chief of blood disorders...
Dr. Matthew Matasar

The Latest in Hodgkin Lymphoma

Matthew Matasar, MD, MS Dr. Matthew Matasar, chief of blood disorders at the Rutgers Cancer Institute...

The Latest in Genetic Testing in 2023

Abigail and Sue sat down with The Patient Story to discuss FORCE, the genetic component...
Lesley Glen and Dr. Roberson sat down with The Patient Story to discuss patient research.

The Latest in Breast Cancer Patient Research

Lesley and Dr. Roberson sat down with The Patient Story to discuss patient research and...
Dr. Alok Tewari

Testicular Cancer: What Patients Need to Know

Testicular Cancer: What Patients Need to Know Medical oncologist Alok Tewari, MD, PhD, who specializes in...
SABCS 2022 Highlights feature profile

SABCS 2022 Highlights

SABCS 2022 Highlights Top breast cancer doctors Dr. Paolo Tarantino with Dana-Farber Cancer Institute and Dr...
Dr. Ajai Chari and Dr. Sandy Wong

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022

Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022 Multiple myeloma specialists Dr. Ajai Chari with Mount Sinai...
Dr. Kamran Mirza

Pathologists: The Unseen Doctors of Your Medical Team

Pathologists: The Unseen Doctors of Your Medical Team Hematopathologist Kamran Mirza, MD, PhD, explains more about...
Hodgkin Lymphoma Side Effects and Holistic Approach

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care

Optimizing Quality of Life: Reducing Toxicity in Hodgkin Lymphoma Care Dr. Andy Evens from Rutgers Cancer...
Dr. Caitlin Costello Dr. Sagar Lonial

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022 Dr. Caitlin Costello and Dr. Sagar Lonial discuss...
Dr. Serge Verstovsek and Dr. Naveen Pemmaraju

Myelofibrosis Highlights from ASH 2022

Myelofibrosis Highlights from ASH 2022 Dr. Serge Verstovsek and Dr. Naveen Pemmaraju discuss cutting-edge treatments and...
Dr. Muhamed Baljević and Dr. Josh Richter

Multiple Myeloma in 2023

Multiple Myeloma in 2023 Long-time myeloma patient and advocate, Jack Aiello, leads the conversation with Dr...
Dr. Chadi Nabhan

Monsanto Roundup Trials Update

Chadi Nabhan, MD, MBA Dr. Chadi Nabhan shares how he got involved in the Monsanto trials...
Dr. Michael Hall

Lynch Syndrome: What Patients Need to Know

Lynch Syndrome: What Patients Need to Know Medical oncologist Michael Hall, MD, MS, discusses Lynch syndrome...

Lola Fayanju, MD, MA

Dr. Fayanju, MD, MA Role: Chief, Division of Breast Surgery Focus: Breast Cancer Provider:...
Let's Talk CLL LIVE

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE – Transcript

Let’s Talk CLL: Patients & Doctors Discuss the Latest LIVE Patients, care partners, and a panel...
Dr. Nicole Lamanna, Dr. Spencer Bachow, and Lisa P.

How to Work With a CLL Specialist

How to Build a Strong CLL Team Nicole Lamanna, MD, from Columbia University Medical Center, Spencer...

How Long Can You Live with Chronic Lymphocytic Leukemia

How Long Can You Live with Chronic Lymphocytic Leukemia? Dr. Adam Kittai and Dr. Joanna...
Jack Aiello and Dr. Shaji Kumar

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022

High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022 Patient advocate Jack Aiello and hematologist Dr. Shaji...
Abigail Johnston feature profile

Health Insurance and Cancer Treatment

Health Insurance and Cancer Treatment Abigail Johnston, a metastatic breast cancer patient and lawyer, talks about...
Dr. Fumiko Chino feature profile

Financial Toxicity of Cancer Treatment

Financial Toxicity of Cancer Treatment Dr. Fumiko Chino opens up about her late husband’s diagnosis and...
Robyn, Dr. Josh Brody, and Dr. Tycel Phillips

DLBCL: The Latest in Treatment and Research

DLBCL: The Latest in Treatment and Research Discover the latest DLBCL treatments from two top lymphoma...
Dr. Josh Brody and Dr. Lorenzo Falchi

DLBCL in 2023

DLBCL in 2023 The Patient Story founder and DLBCL advocate Stephanie Chuang leads the conversation with...
Dr. Toufic Kachaamy is a gastroenterologist trained in advanced endoscopy, including endoscopic ultrasound, he helps care for patients fighting pancreatic, stomach, esophageal, colon, liver or bile duct cancer at our Phoenix hospital. As Chief of Medicine at City of Hope Phoenix, Dr. Kachaamy has clinical leadership responsibilities for several medical departments and supportive care services.

Colorectal Cancer in Young Adults

Toufic Kachaamy,MD Role: Chief of Medicine and Director of Gastroenterology Focus: endoscopic oncologyProvider: City of Hope...
Andrew Schorr and Dr. Nitin Jain

CLL Highlights from ASH 2022

CLL Highlights from ASH 2022 Patient advocate Andrew Schorr and hematologist Dr. Nitin Jain discuss the...
Valarie Traynham and Dr. Shakira Grant

Black Myeloma Patients: Access & Disparities

Research on Black Myeloma Patients, Access & Disparities Patient advocate Valarie Traynham and Dr. Shakira Grant...