Waldenstrom macroglobulinemia (WM): Deciding treatment options

My husband has been diagnosed with an unusual variant of WM. I am not sure if you are connected to the International Waldenstrom Myeloma Foundation (IWMF), but they provide a wealth of resources to help you get your questions answered. Here is a link to just the patient resources page. https://iwmf.com/get-support/ I follow a facebook group, the Waldenstrom's Macroglobulinemia Support Group and there is also an internet based discussion group if you don't use FB. https://iwmf.com/iwmf-connect-and-online-discussion-forums/ Both groups respond to questions. The IWMF also hosts an annual patient forum which will be held from May 1 -3rd in Columbus Ohio which you can stream at home. https://iwmf.com/iwmf-educational-forum/ I hope this helps connect you to more helpful information.

@crraining
I was diagnosed with MF two years ago and have been on 500 mg Hydrea daily since then. Added WM a year ago and found that 4 infusions of Rituximab helped the neuropathy quite a bit. Now I’m due for more Rituximab and hoping for similar relief.

I was diagnosed with WM in 2024 and started Brukinsa. After three months with minimal improvement, offered choice of continuing or BR chemo regimen for six months. I chose the BR route and have had continuous improvement trend in labs/bone marrow biopsy. Now on Rituximab only infusion every eight weeks as maintenance therapy with continuing improvement trends including IgM.

@janetdh88
Thank you for this valuable information. I have been looking at the IWMF website and find it very helpful. I am glad to know the conference proceedings can be streamed!
My best to you and your husband.

I've noticed that some of you have doctors who are recommending treatment of WM when IgM levels are 1,000 or greater. My VA doctors are wanting to wait until my IgM levels reach 3,000. I have very severe copd and they say that due to the toxicity of the WM treatments, they would rather not treat me now. My most recent level was 1,010. Is there anyone else in this situation who may have some information about this?

I've noticed that some of you have doctors who are recommending treatment of WM when IgM levels are 1,000 or greater. My VA doctors are wanting to wait until my IgM levels reach 3,000. I have very severe copd and they say that due to the toxicity of the WM treatments, they would rather not treat me now. My most recent level was 1,010. Is there anyone else in this situation who may have some information about this?

@mike02041950 I joined https://www.nccn.org as a patient. It contains a lot of information. My Hema/Onco follows the NCCN guidelines.

I've noticed that some of you have doctors who are recommending treatment of WM when IgM levels are 1,000 or greater. My VA doctors are wanting to wait until my IgM levels reach 3,000. I have very severe copd and they say that due to the toxicity of the WM treatments, they would rather not treat me now. My most recent level was 1,010. Is there anyone else in this situation who may have some information about this?

@gstone I joined https://www.nccn.org as a patient. It contains a lot of information. My Hema/Onco follows the NCCN guidelines, and has treated a few WM patients. She is also open to outside consultation, but it will be out of pocket unless it's part of a trial. My take is if I was a Dr, I would be able to view much more detailed NCCN guidelines than I can as a patient. My impression is that my double Wild Type WM and FISH results is rare and may require a treatment different than yours. I would be very interested in how your second opinion works out. Especially what additional testing is required and if they require you to travel to Boston for an examine or lab work. Please keep us informed.