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When Should a Patient Seek Treatment for Waldenstrom Macroglobulinemia?

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Published on October 5, 2020

What Symptoms Indicate it is Time to Seek Treatment for Waldenstrom Macroglobulinemia?

Approximately 30% of Waldenstrom macroglobulinemia patients are advised to "watch and wait" at time of diagnosis. When should a patient seek treatment?

Dr. Steven Treon, Director from the Bing Center for Waldenstrom Macroglobulinemia, Dana-Farber Cancer Institute joins Patient Power co-founder Andrew Schorr to explain the signs and symptoms that indicate it is time for a patient and doctor to discuss treatment. To learn more, watch the discussion.

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Transcript | When Should a Patient Seek Treatment for Waldenstrom Macroglobulinemia?

Andrew Schorr:
Hello and welcome to Patient Power. I'm Andrew Schorr. Joining me from the Dana-Farber Cancer Institute in Boston is a world-renowned Waldenstrom's expert, Dr. Steven Treon. Dr. Treon, many people with Waldenstrom's wonder are they in that watch and wait situation? How do they know when they're coming out of watch and wait? So maybe you could describe that for us.

Criteria to End Watch and Wait and Seek Treatment

Dr. Treon:
Back in 2002, when we had the second international workshop on Waldenstrom's, one of the important consensus panels dealt with this question. It was important because the way patients were being cared for with Waldenstrom's varied. You could have patients who are asymptomatic, who are going on and getting chemotherapy, and then even a transplant. And you have symptomatic patients who were being watched and waited. And so as a result, the consensus panel ended up formulating very specific criteria for when a patient should be considered for treatment. And it's important for patients also to know that a fairly large number of patients at time of diagnosis don't need treatment. In our clinic, it's about 30%. So it is really important to be able to separate out when treatment is necessary or when watch and wait would be appropriate.

Waldenstrom Symptoms that Indicate it is time to Start Treatment

Some of the classical criteria are if the patient has a hemoglobin of less than 10 or their platelet count is less than 150,000, those would be indications. If the patient was having bleeding associated with a low platelet count, that would be an indication. If somebody is having peripheral neuropathy due to the IgM or the amyloid protein, and the neuropathy is significant or it's progressing, fair game to treat. If you have somebody who has symptomatic hyperviscosity, very important to treat. But this gets you, at least, into some understanding of the criteria. And these have been published in the NCCN guidelines that clinicians and patients can actually refer to. But there is really a large number of patients who don't need treatment.

Hyperviscosity-related Symptoms

The one thing I just want to also add is the IgM level. This is not part of the formal criteria, but the higher the IgM level, the higher the risk for a particular patient for getting hyperviscosity-related problems. And we don't want patients to say, "Well I have an IgM of 10,000 and I don't have any symptoms, therefore I don't want to be treated." Well, our data shows us that if your IgM is above 6,000, you're at high risk of getting a hyperviscosity crisis. So to kind of minimize that risk, we do want patients to respond to some questions around nosebleeds, headaches, blurry vision. We also want them to get a good retinal eye exam because when your IgM is high and your viscosity is high, you're going to see retinal eye changes. So this all becomes part of the very intense investigation that a Waldenstrom's expert would want in order to be able to determine if a patient is asymptomatic or symptomatic.

Andrew Schorr:
Thank you so much, Dr. Steven Treon. I'm Andrew Schorr. On behalf of Patient Power and the IWMF, remember, knowledge can be the best medicine of all.


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