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Watch and Wait for Waldenstrom Macroglobulinemia

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Published on July 15, 2020

Waldenstrom macroglobulinemia is a rare cancer of the white blood cells. Because of the availability of medications to treat Waldenstrom, it is sometimes over-treated. When is "watch and wait" the best option for this chronic disease? The good news for Waldenstrom patients is that they have lots of treatment choices as Waldenstrom can respond to both lymphoma and myeloma drugs.
 
Even with so many treatment options, often it is best to not treat Waldenstrom immediately. Dr. James Berenson, MD, Founder, President, and Medical and Scientific Director, Institute for Myeloma and Bone Cancer Research, discusses with Patient Power co-founder Andrew Schorr, that Waldenstrom is now a chronic disease that is often over-treated and that there can be side effects to over-treating. He also discusses why it's important to involve a Waldenstrom specialist in your care.

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Transcript | Watch and Wait for Waldenstrom Macroglobulinemia

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.

Andrew Schorr:

Hello and welcome to Patient Power. I'm Andrew Schorr. One of the areas we cover on Patient Power is Waldenstrom's, and with us is Dr. James Berenson from Los Angeles in West Hollywood, California who treats myeloma and also Waldenstrom’s. Thanks for being with us, Dr. Berenson. Any update you'd care to give patients about Waldenstrom's now?

Dr. Berenson:

Well, I must say Waldenstrom's, as I quote the guy who ran my kid's school and he would talk about education as a smorgasbord of opportunities, and the good news with Waldenstrom's patients, they can respond to all the lymphoma drugs, and they can respond to all the myeloma drugs. So they have huge numbers of possible therapies today. It's so much different then it was a couple of decades ago, and it's a very chronic disease now. My lawyer came to me in ‘91, having been told he would live, but two to three years, and I didn't have a lawyer at the time. And I said, you're hired. And 29 years later, he's my lawyer and he's doing just fine. The problem with Waldenstrom's is it's often over-treated and these patients often get into trouble with side effects from the treatment or it can develop leukemia or pre leukemia from the treatments themselves.

So one has to be careful, and this is a disease that I tend to be much more watch and wait than any other plasma cell dysplasia say, than myeloma, amyloid. We can watch you. We don't need to treat you. And when treatment is done, it's highly effective and for a long period of time and now we have lots of drugs. Pills that can work. Drugs like ibrutinib (Imbruvica) or drugs like venetoclax (Venclexta), or the combination, antibodies we've used effectively as well, rituximab (Rituxan), daratumumab (Darzalex), and then of course, chemotherapy agents and or bortezomib (Velcade), proteasome inhibitors, a lot of different drugs these days can be used for Waldenstrom's quite effectively.

Andrew Schorr:

Okay. I think the key for patients is see a specialist who's familiar with Waldenstrom's, and you said don't over-treat.

Dr. Berenson:

Yeah. I mean, these people get cooked with it, cook booked into a lot of drugs I don't ever need. I would say most of my patients, I don't even treat it at all. It just wave and talk politics with them. It's a minority that need therapy. And I think that another thing has to be careful on what's the goal of therapy here? Because you're not going to cure them. And so I think keeping their disease at bay is good and you don't necessarily need to change therapy because their numbers have not gotten down to zero on say their M protein or their IGM hasn't gotten to normal. It's okay. They're going to be fine.

Andrew Schorr:

Okay. Well that's good news. Very positive. Dr. James Berenson, thank you so much for being with us and giving us your philosophy and the update on Waldenstrom's.

Dr. Berenson:

Thank you, Andrew.

Andrew Schorr:

All right, Andrew Schorr here. Remember, knowledge can be the best medicine of all and when dealing with Waldenstrom's, see a specialist.

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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