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Treatment Options for Waldenstrom Are Evolving

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Published on December 20, 2019

“It sounds like a message of hope for this quite rare disease,” says Patient Power Co-Founder Esther Schorr, speaking with Dr. Steven T. Rosen from City of Hope about the evolution of treatment options for Waldenstrom macroglobulinemia. Dr. Rosen, from City of Hope’s Comprehensive Cancer Center, joined Patient Power at the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition to share research updates announced at the conference, as well as what successes he is seeing with his patients. Dr. Rosen also touches on the importance of consulting a Waldenstrom specialist for help navigating this ever-evolving landscape of treatment options.

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Transcript | Treatment Options for Waldenstrom Are Evolving

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, and I'm pleased to be here with Dr. Steven Rosen from the City of Hope, and he is the director of the Comprehensive Cancer Center there.  

Dr. Rosen:

It's good to see you, Esther. 

Esther Schorr:

It's good to see you too, sir.  So I know we could talk about a million things, but today we're going to talk about Waldenstrom's.  So really what—what we'd like to know and I know some of our community members who are dealing with a diagnosis of Waldenstrom's really want to know, what's going on here at ASH.  What are some things that you think would be a good takeaway for them? 

Dr. Rosen:

Sure.  Well, the majority of patients with Waldenstrom's present with symptoms either related to hyperviscosity.  It could be when they brush their teeth there's some bleeding, on rare occasions, headaches or visual problems, or they present with symptoms of an indolent lymphoma, lymph nodes at times, cytopenias because of marrow infiltration or splenomegaly.  There are some paraneoplastic manifestations patients can get. 

Esther Schorr:

And what is that? 

Dr. Rosen:

It means related to the cancer itself, something produced by the cancer.  In this instance the immunoglobulin molecule, the IgM molecule which can cause problems in addition to hyperviscosity, such as neuropathy, and occasionally go into immune phenomena. 

Fortunately, the therapy for Waldenstrom's has evolved dramatically.  They have great successes.  In the acute situation if someone has severe hyperviscosity we do plasmapheresis.  It's very uncommon, but that's what we would do. 

But when therapy is indicated there are a number of options, not one necessarily better than the other.  In randomized trials we find that there are a number of reasonable considerations.  I often will use an anti‑CD20 antibody, rituximab (Rituxan) or obinutuzumab (Gazyva), both have activity.  The proteasome inhibitors have significant activity in this setting.  Neuropathy can be a problem, so I prefer either subcutaneous bortezomib (Velcade) or intravenous carfilzomib (Kyproliis).  In addition, dexamethasone (Decadron) used in a sparing manner can be very effective adjunct to those treatments.  

Esther Schorr:

So how do you—is it very personalized how one is treated because there's so many options for treating it? 

Dr. Rosen:

Outside of a clinical trial for me that's the critical issue.  We also discovered that almost all patients with Waldenstrom's express a mutated form of a specific gene called MYD88, and that makes them sensitive to inhibition of the Bruton's tyrosine kinase pathway.  Medications like ibrutinib (Imbruvica) or acalabrutinib (Calquence) are very effective in this disease.  I tend to use them in conjunction with anti‑CD20 antibody therapy

At this meeting there was some discussion about the use of rituximab-bendamustine (Rituxan-Treanda) which is effective.  That's a chemotherapeutic.  I almost never use it.  In this particular study they showed that there wasn't a great advantage to maintenance Rituxan.  Although there was not significant benefit, there was a trend. 

In addition in this meeting there was a presentation about an oral proteasome inhibitor combined with Rituxan and steroids that's very effective, and that's not a surprise.  The fortunate aspect is that we're able to reduce remissions in the vast majority of patients.  A small percentage transform into a more aggressive lymphoma that requires alternative therapies, but I've been ecstatic about the results I've witnessed in the last few years in the therapy of my patients. 

Esther Schorr:

That's great.  So obviously you see a lot of—you see Waldenstrom's patients, but it's a rare condition. 

Dr. Rosen:

It is. 

Esther Schorr:

So if somebody is diagnosed with that not living near a center of excellence, what should they do? 

Dr. Rosen:

They can contact The Leukemia & Lymphoma Society.  They can provide advice and also connect them with experts, as can ASH.  And the ASH can connect their physicians with experts.  There's also the Waldenstrom's Foundation that's in Illinois that can provide information.  Or you can contact any of your nearby cancer centers, and we have quite a bit of information and the ability to make referrals. 

Esther Schorr:

Sounds good.  Sounds like a message of hope for this quite rare disease.  

Dr. Rosen:

They could also just email me at srosen@coh.org. 

Esther Schorr:

Okay.  Repeat that.  What was that? 

Dr. Rosen:

Srosen@coh.org.  Or if it's urgent they can leave a text or call me at 626‑534‑2256.  

Esther Schorr:

You are a gem, Dr. Rosen. 

 

Dr. Rosen:

Thank you. 

Esther Schorr:

Thank you so much. 

Dr. Rosen:

It's nice to see you again. 

Esther Schorr:

Thank you.  And this is Esther Schorr at ASH.  And 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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