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Waldenstrom Patients Benefit From Treatments Developed for Myeloma and Lymphoma

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Published on December 18, 2019

Key Takeaways

  • Waldenstrom patients benefit from treatments developed for myeloma and lymphoma.
  • Venetoclax (Venclyxto), ibrutinib (Imbruviica) and rituximab (Rituxan) are three lymphoma treatments used in Waldenstrom.
  • Bortezomib (Velcade) is a myeloma drug that is very effective in Waldenstrom.

“It’s a very exciting time for patients,” says Dr. James Berenson as he explains how Waldenstrom macroglobulinemia patients have more treatment options than ever before. Dr. Berenson, from the Institute for Myeloma & Bone Cancer Research (IMBCR), joined Patient Power at the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition to share research updates announced at the conference. Watch as Dr. Berenson describes how Waldenstrom patients are benefiting from therapies originally developed for myeloma and lymphoma, what progress is being made in clinical trials and why patients should be hopeful about the future.

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Transcript | Waldenstrom Patients Benefit From Treatments Developed for Myeloma and Lymphoma

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.

Esther Schorr:

Hi there.  This is Esther Schorr from ASH 2019 in Orlando with Patient Power, and I'm here with Dr. James Berenson.  And Dr. Berenson, tell us a little bit about what's going on with Waldenstrom's.  I know that this is an area for Patient Power that is relatively new, and there are beginning to be some interesting things happening in terms of treatment, and we'd like to know what's happening.  

Dr. Berenson:

Yeah, Waldenstrom's macroglobulinemia is a fairly uncommon cancer.  It almost makes myeloma look common.  There are only several thousand cases a year.  It's very common in Ashkenazi Jews.  It's common also in families, so there's a very big family risk of this as well.  It is right actually between a lymphoma and a myeloma, boom, in the middle you almost get a macroglobulinemia, and that's great news for patients, because they both can grab the myeloma treatments and the lymphoma treatments, and they can both be quite effective. 

So drugs that aren't widely used in lymphoma, drugs that aren't widely used in myeloma, they can work either alone to treat this disease or combined together.  It's a very exciting time for patients, because they have all these treatments.  You almost never run out of options with these treatments, and patients live very long periods of time. 

The biggest decision in these patients is when to initiate treatment, because many patients can be watched for years and years without initiating therapy.  So some of the drugs that have been used, for example, in lymphoma like venetoclax (Venclexta) and now approved is ibrutinib (Imbruvica), this BTK inhibitor, are really effective in Waldenstrom's, and also Rituxan which is not really (?) antibody to CD20 used in lymphoma, very effective in Waldenstrom's, not really in myeloma.  On the other hand, there are myeloma drugs that we use like, say, bortezomib (Velcade), and that drug is extremely effective in Waldenstrom's as well.  

And there are a series of new drugs that are now being tested in Waldenstrom's, newer versions of this ibrutinib, newer BTK inhibitors which look really good, and as well, the venetoclax is beginning to enter the fray in clinical trials in a fairly significant way in Waldenstrom's.  And then what we call the PI3 kinase inhibitors are also being tested in Waldenstrom's.  So there's a plethora now of new drugs that are moving into the Waldenstrom's space and Waldenstrom's patients have a really long survival now.  I mean it's measured in decades, no longer in years.  They're doing really well. 

Esther Schorr:

That's great.  That's great news for patients.  I think my last question would be with that, sometimes having too many choices can be confusing. So if you were speaking with a patient who's just been diagnosed with Waldenstrom's, what would you suggest their next step be in terms of trying to work with their physician or their specialist in figuring out the right treatment? 

Dr. Berenson:

Well, I think it's imperative really to see a specialist, at least initially, because the average oncologist sees one of these every couple years. And we see lots of them every week, and so we have the experience.  We're not actually smarter, but we just have the experience of seeing more patients…

Esther Schorr:

Right.  

Dr. Berenson:

…understanding the drugs.  And some of them have significant side effects, such as what can occur with ibrutinib with effects on arrhythmias like atrial fibrillation.  You have to learn how to deal with those issues.  But the Waldenstrom's experts are also pretty good about taking phone calls from local docs, and they're really an open community in that regard in helping them treat the patient.  

Esther Schorr:

And are they—normally be specialists affiliated with a lymphoma practice or with a myeloma practice, either one?  

Dr. Berenson:

It can be either because it's right in between.  Yeah, it can be either.  Yes. 

Esther Schorr:

Right.  Because that navigation is sometimes hard for a patient. 

Dr. Berenson:

Yeah.  Yeah, it can be either.  

Esther Schorr:

Okay. 

Dr. Berenson:

Experts in lymphoma or myeloma certainly can be experts in macroglobulinemia or Waldenstrom's.  

Esther Schorr:

Okay.  Well, thank you.  It's very good to hear that there's beginning to be a lot more even for a very rare condition like Waldenstrom's.  So thank you very much, Dr. Berenson.  

Dr. Berenson:

Thank you.  Thank you. 

Esther Schorr:

Esther Schorr from ASH in Orlando.  Remember, knowledge can be the best medicine of all. 

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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