Waldenstrom macroglobulinemia (WM): Deciding treatment options

Posted by weissmntc @weissmntc, Dec 16, 2023

I was diagnosed this week with WM. No symptoms except persistent anemia and periodic breathlessness. I had a bone marrow biopsy which confirmed IgM, free kappa chain levels etc. Treatment likely to begin in January. Offered 2 treatment choices (chemo for 6 months (benda-R) or zanutrinib orally “forever”). Looking for anyone’s firsthand experience in how you made the decision of which treatment to go for.

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gstone | @gstone | Dec 10, 2025

In reply to @dcuste "Good morning @ewash55, I was initially diagnosed with MGUS with IgM levels above 500. This was..." + (show)

@dcuste I was diagnosed with WM back in April after a fall. IgM of 6000 and bone marrow biopsy confirmed it with the mutations. 6sessions of chemo and infusion therapy have reduced the number to 1643; where it has stopped responding so therapy. Any ideas?Seeking second opinion at Dana Farber in Boston!

vicmar | @vicmar | Dec 11, 2025

In reply to @ewash55 "@vicmar Thank you! Your story helped to confirm what I felt was the answer to the..." + (show)

@ewash55
It does feel good to have a plan, right? Getting a port is a good idea. As treatment progressed, it became more difficult for the nurses to find a good vein, even with using the ultrasound vein. The treatment caused the veins to harden, so there were less good veins to use. You will be all set. If your treatment involves supportive nausea drugs, I have advice; take your pills even if nausea hasn’t started. Stay “ahead” of it. Also write down what you took. Chemo brain is real during treatment and early recovery! You’ve got this!💪

dcuste | @dcuste | Dec 11, 2025

In reply to @gstone "@dcuste I was diagnosed with WM back in April after a fall. IgM of 6000 and..." + (show)

@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.

gstone | @gstone | Dec 11, 2025

Our children grew up on cape cod so we are moving back as soon as our house sells in nc. It is cold but we have friends and family here! Currently we are renting a house on cc and have an appointment on 11.24 at Dana Farber in Boston. Blood work will come after a consultation with a wm specialist. I will update asap!

carrnv42 | @carrnv42 | Dec 11, 2025

In reply to @vicmar "@vicmar Good luck to you! My IgM numbers were in the 2500 range before treatment. My..." + (show)

@vicmar My IgM numbers have come down from 2600 in July t0 900 in Nov. I am on Brutinska. My I ask what medication are you on?

vicmar | @vicmar | Dec 12, 2025

In reply to @carrnv42 "@vicmar My IgM numbers have come down from 2600 in July t0 900 in Nov. I..." + (show)

@carrnv42 My results are following chemo; just finished 6 treatments on November 25th. Chemo regimen was Benidustin and Retuximad. (Not sure about spelling) My Dr is hoping for a lengthy remission. He has seen remissions of 4-6 years using this protocol. He would not do chemo a second time, but a pill. Maybe the one you take! Do you have any side effects? I hope it continues bringing your numbers down!

carrnv42 | @carrnv42 | Dec 12, 2025

In reply to @vicmar "@carrnv42 My results are following chemo; just finished 6 treatments on November 25th. Chemo regimen was..." + (show)

@vicmar I have had no side effects to date. Will see Dr. again next for more blood work. We will see if it still improves. Good luck to you.

vicmar | @vicmar | Dec 13, 2025

In reply to @carrnv42 "@vicmar My IgM numbers have come down from 2600 in July t0 900 in Nov. I..." + (show)

@carrnv42 I’m not any meds currently, but just finished chemo November 25. Chemo knocked down my numbers!

carrnv42 | @carrnv42 | Dec 13, 2025

Thank you for your response.

kayleerose | @kayleerose | Jan 11 11:19am

In reply to @charlotte44 "I do not have this, but I have looked into it a lot. I have so..." + (show)

@charlotte44 hello, I was diagnosed with WM in April of 2025 and hav found that the WIMF has a lot of information on WM. My symptoms are only weakness and bone pain so I'm not in any treatment yet. I'm hoping that my treatment won't start for years from now so it's still wait and watch. What has helped you with weakness?

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