Ask the Expert: Hodgkin Lymphoma

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An audience of Hodgkin lymphoma patients and their care partners joined us online as Hodgkin lymphoma expert Dr. John Burke of Rocky Mountain Cancer Centers answered audience questions. Dr. Burke provides insight into where Hodgkin lymphoma is heading. Community members submitted questions regarding new treatment combinations and where to find resources for newly diagnosed patients. 

This Ask the Expert webinar is sponsored by Seattle Genetics.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Beth Kart Probert:

Hello.  I'm Beth Probert, and I am an MPN patient and Patient Power ambassador, and this is a Patient Power program.  We'd like to thank our sponsor, Seattle Genetics.  As always, our sponsors have no edit control over the content.  

Today we're going to discuss where treating Hodgkin lymphoma is heading and ask questions from our community in this Ask the Expert program.  We'll also answer viewer questions, so if you have a question send questions to questions@patientpower.info.  Please note that we cannot provide specific medical advice over the internet, and it wouldn't be fair to you.  We always recommend that you ask and seek care from your own doctor and that's how you will get the best treatment.  

I'd like to introduce our guest today, Dr. John Burke.  He is the associate chair of the US oncology hematology research program.  Thank you for being with us today, Dr. Burke.  

Dr. Burke:

Thanks for having me.  

Beth Kart Probert:

So, Dr. Burke, we're going to just jump right in.  What is the big news in Hodgkin lymphoma from ASH 2018?  

Dr. Burke:

I would say to me in Hodgkin lymphoma ASH was a wee bit disappointing.  There wasn't anything truly practice-changing.  If I had to pick a sort of one Hodgkin lymphoma trial that caught my attention, it was a trial conducted by the German Group and they—whether or not adding radiation therapy was essential for patients with the most favorable risk of Hodgkin lymphoma, so the early?stage favorable patients where historically the standard practice is to give them two rounds or two cycles of chemo and then radiation.  So they tested whether or not the radiation was necessary.  

So some of the patients got radiation and the others didn't.  And they found that those patients who did not get radiation therapy had similar routes to relapse, and so the conclusion of the investigators was that adding the radiation therapy remains essential, that you can't drop the radiation, although there was a sort of vibrant discussion after the presentation where some in the room took a different view, and they said, well, actually, maybe it's okay if there's a little bit of a higher relapse risk, because you save a lot of patients the toxicities of radiation therapy by not delivering it to so many people who don't need it and that maybe if patients do have a local relapse, you can just give the radiation therapy later or give new therapies later and still achieve the same overall outcome, which is survival. So it was a debated conclusion, and that's the way it goes a lot in Hodgkin lymphoma when it comes to radiation therapy.  

But that was probably for me the most interesting of the studies presented.  There were a number of others, nothing that would dramatically change my practice tomorrow but some interesting stuff came out as well. 

Beth Kart Probert:

Well, that's very interesting, and it sounds like the debate, so to speak, about the radiation, is that something that they're going to continue to take a look at?  

Dr. Burke:

Yeah.  It's an ongoing debate in many areas.  These studies seem to consistently show that when you leave out radiation therapy after chemo there is a slightly higher risk of relapse, but what we care about, which sounds like—everybody, you know, who hasn't been through this debate before would say, of course I want the radiation therapy, but we also know that radiation adds toxicities and may not lead to a better cure rate in all cases.  

And so it's a commonly debated thing where do you accept a little bit of higher risk of relapse understanding that you're going to spare yourself some toxicities if you skip the radiation therapy, and if you're in that unfortunate few that does relapse, then you're going to have to do more, and that might be radiation therapy, it might be more chemo, it might be a stem cell transplant and novel therapies. So that's kind of the tradeoff that I—discussions that I have with my early?stage Hodgkin lymphoma patients on what their personal treatment course so going to be.  

Beth Kart Probert:

Well, and throughout the year we're going to really want to hear an update of where this debate goes.  Very interesting.  

So you mentioned that there wasn't too much, but from that conference and/or in just the Hodgkin lymphoma community what can these patients look forward to as far as treatment in the coming year?  

Dr. Burke:

I'm sorry, treatment in the coming year?  

Beth Kart Probert:

Yeah, maybe new treatments that are in development.  But let me start with kind of in the short term, like maybe within a year or two.  

Dr. Burke:

Yeah.  I think the really hot topics in the field now are the two main new categories of drug and how to incorporate those best into existing treatment algorithms.  So the two categories of drug I'm referring to are, number one, brentuximab vedotin (Adcetris), which is what's called an antibody?drug conjugate that is targeting the Hodgkin lymphoma cancer cells.  And then number two are the so?called checkpoint inhibitors that are stimulating the immune system to better attack and kill Hodgkin lymphoma cells.  

Those are the two categories of drugs that over the last several years have been used sort of late as therapies for patients who've relapsed multiple times and really don't have much in the way of other choices and now are being sort of moved sooner into these treatment algorithms.  So rather than save them for people after they've relapsed the big news earlier this year was that the addition of brentuximab vedotin to chemotherapy regimens improves so?called progression?free survival or keeps the lymphoma in remission for a long period of time when incorporated into a chemotherapy regimen.  So that's one example of a practice?changing finding that's happened in the last year. 

The big question—a lot of big questions are should that regimen be used for patients with early?stage disease.  Right now it's only approved for advanced stage, three and four disease.  Should it be used in elderly patients, and if so how can you best give it to elderly patients who have more trouble tolerating that more complex chemo program.  And so that's really an area of active research right now.  

And then should we be using these checkpoint inhibitors in combination with chemotherapy early, and that's going to be a subject of a large trial that'll take several years.  So moving these highly effective treatments earlier in the course of disease is a big area of research that we're going to be hearing about in the next few years.  

Beth Kart Probert:

And that does sound really exciting, and I don't know if I'm really off base here but it almost sounds like a little bit more personalized medication, like not a one size fits all.  

Dr. Burke:

Is it personalized?  I'm not sure I would say it's personalized in that in personalized medicine for example we might take one Hodgkin lymphoma patient and say, okay, you have gene mutation A so I'm going to give you drug X, and for another Hodgkin lymphoma patient, you have gene mutation B and I'm going to give you drug Y instead.  It's not really individualizing therapy quite so much, but these are really smarter drugs, I would say, than kind of conventional chemotherapy drugs.  So they're just novel mechanisms of action than what we're used to with conventional chemotherapy.  It's really using new strategies to be smarter about how we treat the disease.  

Beth Kart Probert:

And that in itself is exciting.  

Dr. Burke:

Yes.  

Beth Kart Probert:

So kind of shifting gears a little bit, what would you say, what questions should patients be asking their doctors?  

Dr. Burke:

Yes, so if I had a new—if I were a patient with new Hodgkin lymphoma and I were seeing a doctor I would first of all start with the basics, okay?  So what's my diagnosis?  What type of Hodgkin lymphoma do I have?  What's my stage?  What tests do I need to determine that stage?  And then once all that is in order, what is my overall treatment plan, okay, and how does it look from start to finish?  How many cycles of chemo?  Are you going—are we thinking about radiation therapy?  Are we going to make that decision somewhere halfway through whether to add radiation therapy or not?  

These are all key issues and questions that come up.  What side effects should I expect during the treatment?  Can I work through this treatment?  These are all common questions that come up.  And then of course prognosis.  I think some people with Hodgkin lymphoma are really more interested in hearing statistics, and what's my cure rate?  Other people don't want to go there.  They just say, look, give me the treatment and we'll see what happens.  

And at least speaking for myself a lot of docs will sort of wait for patients to lead that discussion because we don't want to provide more information than you want to hear and we don't want to provide less information than you want to hear, so a lot of us will wait for our patients to sort of ask that question. And so I would say that is important for patients to go into the visit being prepared to ask what they want to know about prognosis.   

Beth Kart Probert:

I think that's great advice, and you certainly gave us some wonderful examples.  So we know this is a very overwhelming disease and could be a little frightening.  What resources are available to patients for support?  

Dr. Burke:

Yeah, well, I think starting—I can think of several.  So, first of all, besides your primary physician, your oncologist and the physicians and other types of providers who are treating you, I can think of a couple other resources.  

I mean, in our personal practice we have financial counselors who can help with questions about cost, because that's obviously a big issue for cancer patients. Our practice also employs social workers to help patients with issues like transportation.  Our financial folks help people find grants to help pay for treatments.  Psychiatric issues and psychological issues that come up with not only patients but also their caregivers and loved ones at home, so providing support for really the whole team and not just the patient themselves.  

And then moving beyond the local office I think examples of other places to get support are Patient Power.  I mean Patient Power, this organization here, provides amazing educational resources for patients with many different blood cancers.  And then another one that's near and dear to my heart is The Leukemia & Lymphoma Society.  Really provides tremendous resources for patients.  And just to give a few examples, they have grants to help patients pay for their medications when they cannot afford them.  Leukemia and Lymphoma Society offers online webcasts, educational ones, kind of like what we're doing today, to teach patients about diseases.  

And here in my local market in Denver LLS puts on an annual in?person educational conference where they invite speakers and literally hundreds—it's a Saturday once a year where hundreds of patients go just to get education about their disease and meet others with their disease to—that's a really great aspect of that conference. So I can go on and on about LLS and everything they do for patients, so I probably should stop there, but that's another example of resources that are available.  

And then last I would just add, online, you know, everyone wants to go Google their disease and learn about it, and I'd just advise some precaution there in making sure that you have a resource that is trusted by your physician.  Examples of reliable websites that provide really good patient information about how to treat Hodgkin lymphoma would be American Society of Clinical Oncology, the American Cancer Society.  Both of those resources provide patient education.  And then there's a good website called UpToDate that provides various information about various cancers.   

So there are some websites that are really good, really reliable.  Those are examples that jump to the top of my mind, and I'm sure I'm leaving some out, but just be careful about what you read out there.  

Beth Kart Probert:

I think that's fabulous advice, and you did mention is some wonderful resources.  And I would also like to add that, as you mentioned, Patient Power, we do have a library of resources for the Hodgkin lymphoma community, and we're always here to guide you through that as well. Great.  Thank you.  

Well, we certainly have quite a few questions from the community, and I'd like to start on those.  The first question is asking how long do you think a child that had primary refractory Hodgkin lymphoma would stay in remission.  This is a pro?part question.  Do you think there's a higher chance of relapse once you've done that before and became refractory?   

Let me know if you'd like me to repeat that.   

Dr. Burke:

So let me—I think I'll inadequately tackle the first question.  So just to repeat, my understanding, how long would a child with primary refractory Hodgkin lymphoma remain in remission?  

Beth Kart Probert:

Yes.  

Dr. Burke:

I will say that I don't treat children, so I have zero experience in treating children.  I treat only adults.  Now, naturally, the average age, sort of the peak age for Hodgkin lymphoma is in the late 20s, so I treat a lot of 20?year?olds with Hodgkin lymphoma.  

Primary refractory Hodgkin lymphoma is a tough disease.  You know, primary refractory anything means that when you give chemotherapy it's not working, and that's very unusual.  I'm trying to remember the last case of primary refractory Hodgkin lymphoma that I've seen.  The large majority of patients respond, so an unusual situation.  And I would guess that the prognosis is not great and probably an average survival measured in under a couple years.  

That said, and again I don't know exactly what's available in children, but in adults somebody in their 20s or 30s we would think about some of these novel therapies, and they really can help improve survival.  We are seeing people live longer and longer, particularly with checkpoint inhibitors and brentuximab vedotin.  And really even in patients that I would expect would not live very long with multiply relapsed disease, some of them are going on kind of a long time on checkpoint inhibitor therapy, and it really seems—even if it's not curing patients it's extending their lives.  So that's the best I can do on the first question.  

Help we with the second part of the question again, I can't remember.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on July 24, 2019