Future Management of Waldenstrom Macroglobulinemia
Steven P. Treon, MD, PhD: One of the important aspects of treating a patient with Waldenström macroglobulinemia is involving other individual physicians who may bring additional expertise to the treatment of a Waldenström macroglobulinemia. We know that peripheral neuropathy can occur in about 25% of all Waldenström macroglobulinemia patients. We also know that sometimes the Waldenström macroglobulinemia cells can get into the brain and spinal cord and cause a syndrome called the Bing Neel syndrome. And this is the type of patient who one would want to have a neurologist onboard to be able to do all the important testing that’s required.
I think it’s important for patients with Waldenström macroglobulinemia to note two very important things. One, survival is changing, all for the better. When I first got involved in macroglobulinemia many, many years ago, people used to talk about overall survival of about 3 to 5 years. That’s out the window now. Our most recent survival curves now show that survival may be as high as 18 to 20 years plus. And I want to emphasize the word plus, because that’s how much things are changing. We have new drugs — you know now many new drugs available to us that I think are going to change the future even further. So it’s important for patients to keep that in mind.
Now, that’s not to say that every patient is benefiting the same, which is why we still have a very important mission ahead of us. I think it’s also important for the newly diagnosed patient to understand that we also have one other advantage, and that is that we actually understand the genomics of this disease better than they do for many other diseases that patients have with hematological cancers. We know what the key mutation drivers are, and this is really enabling us now to innovate new drugs at a pace that was never seen before. So the future is really bright. We’re seeing only the beginning of new drugs that actually are emerging that are truly targeted in nature for this disease. And for me really it couldn’t be a more exciting time to be involved in Waldenström macroglobulinemia.