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Waldenstrom Diagnosis: Consulting a Specialist for Help

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Published on December 23, 2019

Key Takeaways

  • Waldenstrom macroglobulinemia is rare. Approximately 1,500 patients are diagnosed in the U.S. each year.
  • Ibrutinib (Imbruvica) was the first FDA-approved therapy for Waldenstrom.
  • For rare cancers like Waldenstrom, patients may benefit from consulting a doctor who specializes in the disease.

“We expect our patients to seek out the right care for themselves,” says Dr. Sikander Ailawadhi as he explains that doctors who are treating patients with rare diseases like Waldenstrom not only welcome their patients to ask questions and seek expert advice, they encourage it. Dr. Ailawadhi, from the Mayo Clinic in Florida, joined Patient Power at the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition to discuss Waldenstrom macroglobulinemia. Watch as Dr. Ailawadhi explains why it’s critical for those diagnosed with this rare disease to consult a Waldenstrom expert and what resources are available to help patients find one.

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Transcript | Waldenstrom Diagnosis: Consulting a Specialist for Help

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.  This is Esther Schorr at ASH 2019 in Orlando, and I'm here with Dr. Ailawadhi from the Mayo Clinic in Florida.  We're going to talk for just a couple minutes about Waldenstrom.  

Dr. Ailawadhi:

Yes.  

Esther Schorr:

Tell us what we need to know about what's happening in the field of treating this disease.  

Dr. Ailawadhi:

Excellent.  Thanks a lot for bringing up that question.  Waldenstrom, or the full term being a mouthful of Waldenstrom's macroglobulinemia, it's a rare disorder with just about 14‑ or 1,500 patients diagnosed in the U.S. every year.  So unfortunately in the past not a lot of development of drugs was done in the field of Waldenstrom because it was almost like if patients or the treatments were available for lymphomas, they kind of trickle down into Waldenstrom. Or if there were treatments for myeloma, sometimes they made their way into the Waldenstrom world, but recently things have picked up and have started moving about. 

We only have one drug that is FDA-approved for the treatment of Waldenstrom, but at ASH this year there's talk and also discussion about more clinical trials that are being done, and patients that are being allowed to get enrolled on other clinical trials so that the field as a whole can move forward. 

I think rather than focusing on any specific data of importance or interest what my thought would be, it is very important for the patients to not feel left out when they have this diagnosis, because very frequently when patients come to us—and we are one of the larger centers for Waldenstrom treatment in the country, the Mayo Clinic—very frequently the patient says, well, I was told I had this diagnosis.  It was Waldenstrom or WM or something, and my doctor said that in their life they have treated one more patient, or that they have two patients but the others never required treatment.  How can I be comfortable that I'm on the right path? 

I think that is such an important question.  What my thought would be, first of all, like I said, the patients should not feel alone.  Knowledge is power.  If they were to go online, there are several resources for Waldenstrom patients, one of them being for example the International Waldenstrom Macroglobulinemia Foundation, the IWMF.  The IWMF has designated Waldenstrom experts in the whole of the country, and if patients were to call the IWMF, the IWMF will tell them who would be their designated slash trusted Waldenstrom expert in the area where that patient is.  

I think making that connection is extremely important.  The treatment options are there.  There are clinical trials.  We have I think as of today probably four different clinical trials going on for Waldenstrom.  But the patients will only be able to get benefit from all of that if they get to those options. 

Esther Schorr:

So if they bring—if a patient brings up the idea of a consultation or referring to a center like yours, that's okay?

Dr. Ailawadhi:

That's absolutely okay, bringing up with your own doctor.  But let's say, and it's not uncommon for the patients to feel a little anxious or scared.  Well, if I ask my doctor for an opinion, another opinion, what are they going to think?  Are they going to get offended by it?  They could just pick up the phone and call the IWMF, and they would connect you to the local doctor—or the local expert or do a research online yourself.  The website gives all these details. 

And I should also add while this is a fear or concern I can say being a physician and coming from this community most of us are very comfortable if a patient seeks out an opinion.  We live in an age of information overload almost.  We expect our patients to seek out the right care for themselves.  And in fact I can tell you those physicians who are not very familiar with Waldenstrom are frequently happy to sort of get that sort of consult set up, because it helps them learn, it helps them take better care of the patient, and a lot of times these academic center and community partnerships work very well.  So I think it's very reasonable to ask for that connection. 

Esther Schorr:

Right.  Good.  And that kind of encouragement for our patients and care partners who are listening is very, very important to encourage them to do that.  

Dr. Ailawadhi:

Absolutely. 

Esther Schorr:

Doctor, thank you so, so much for all of your insights today. 

Dr. Ailawadhi:

Thanks for having me.  

Esther Schorr:

Oh, our pleasure.  And from ASH 2019, it's Esther Schorr.  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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