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A Doctor’s Advice for Waldenstrom Macroglobulinemia Patients

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Published on October 19, 2020

What Should Patients Know About Waldenstrom Macroglobulinemia?

What do healthcare professionals want patients to know about Waldenstrom macroglobulinemia? Dr. James Berenson, medical & scientific director of the Institute for Myeloma and Bone Cancer Research is here to share! He will cover topics including:

  • the history of Waldenstrom macroglobulinemia,
  • how it is detected,
  • what occurs when it does (and does not) need treatment,
  • advice for patients, and
  • the prognosis of this rare disease.

Dr. Berenson will also touch on the common misconceptions of a Waldenstrom macroglobulinemia diagnosis.

Transcript | A Doctor’s Advice for Waldenstrom Macroglobulinemia Patients

Dr. Berenson: The good news about macroglobulinemia patients is their type of cancer sits between a lymphoma and a myeloma. And there's really great drugs for both diseases and many new ones just within the last few years. So, the choices are plentiful for these patients that are both effective and actually well tolerated. 

So, the name Waldenstrom's stems from Jan Waldenstrom who I actually met in Sweden about 25 years ago, a very tall ectomorphic Swed. And he discovered a few patients, several who had this thickened blood from too much IgM protein. So, we did a lot of research on these gammopathies. And one of the things he uncovered was macroglobulinemia. Macro for big, globulin for this type of protein. So macroglobulinemia and named after him, a Waldenstrom’s.

What is Waldenstrom Macroglobulinemia?

Waldenstrom macroglobulinemia is an uncommon form of cancer of the bone marrow and sometimes lymph nodes. This cancer involves a type of white cell between a plasma cell and a lymphocyte.

Patients with macroglobulinemia have a wide variety of presentations and impact on life. Many patients, it's simply a laboratory phenomenon and requires no intervention at all. And they're simply are watched to make sure nothing untoward is happening in terms of their blood counts, their kidneys, how they're feeling, may affect their nerves and other major organs.

What is the Waldenstrom Macroglobulinemia Treatment?

There are patients that require treatment, however, and the impact can be from simply low blood counts, anemia, making them weak or can be more major affecting organs, their vision, their heart from too much protein impacting their ability for their heart to function their nervous system to function. Sometimes their liver and spleen may be large. And occasionally the disease may transform to an uglier form of lymphoma, that's more difficult to treat.

What Should Waldenstrom Patients Know?

In my own experience in my clinic, the vast majority of macroglobulinemia patients do extremely well and they live a normal life span only limited by other diseases, like of their heart, their lung, diabetes, really not macroglobulinemia.

So, the biggest misconception with this disease is that “Oh, my God, I have to get treated.” Now, a lot of times with this disease, unlike about any other cancer, perhaps with the exception of chronic lymphocytic leukemia, the exception of smoldering myeloma patients in this group of diseases, these patients could be "waited and watched."

Don't just do something, sit there in many cases is a better philosophy for this disease. It's probably the most over-treated form of cancer that I know about. So be careful. Get a second opinion from an expert. Remember, this is such a rare disease, there's only a few of us that see more than 10 or 20 patients that are new a year with it.

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