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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dcuste | @dcuste | Apr 1 6:05am

In reply to @crraining "@dcuste I am also the rare double wild type. What treatment has been recommended to you?..." + (show)

@crraining After 3 years now, I am still asymptomatic despite IgM going as high as 2200. Last test, was down to 1700, but I am now boarderline anemic. My plan is to get a second opinion from an IWMF recommended Dr with double wild-type experience when the time comes. I may start shopping around soon, just to have somebody lined up.
Please let me know what you end up doing. You are the first double WT I've heard from.

barbarian1 | @barbarian1 | May 10 11:43am

In reply to @dcuste "My WM double wild type was diagnosed after a BMB 6 months ago that showed 20%..." + (show)

@dcuste find hema/oncologist specialist in WM

barbarian1 | @barbarian1 | May 10 11:45am

In reply to @dunewalker "@crraining I was diagnosed with MF two years ago and have been on 500 mg Hydrea..." + (show)

@dunewalker what r side effects of Rituximab?

dunewalker | @dunewalker | May 11 8:24am

I had four infusions, one per week, with little side effects other than being a bit tired, possibly from the Benadryl more than the Rituximab.
I had an infusion in the morning and went to a movie in the afternoon, no problem.
Due for another round starting next week, hoping it helps the neuropathy, too.
I hope yours goes as well.

vicmar | @vicmar | May 12 7:34am

If the R means Rituximab, I completed the treatment in November 25. My doctor advised me to go this route, for a better outcome. It worked! My follow-ups show great improvements; I am in remission. I feel great! I am a woman, 71.

chicago2025 | @chicago2025 | May 12 7:41am

In reply to @dcuste "@crraining After 3 years now, I am still asymptomatic despite IgM going as high as 2200...." + (show)

@dcuste If applicable (iron tests done) consider IV iron infusion. Could give you a couple more years w/out treatment.
WM, but not wild-type.

Lori, Volunteer Mentor | @loribmt | May 12 9:02am

In reply to @chicago2025 "@dcuste If applicable (iron tests done) consider IV iron infusion. Could give you a couple more..." + (show)

Hi @chicago2025 Welcome to Mayo Connect. Thanks for jumping into the conversation of possible treatment options for patients with WM. With your knowledge of the usage of iron infusions with Waldenstrom macroglobulinemia, is this something you've experienced first hand?

chicago2025 | @chicago2025 | May 12 9:38am

Yes! Tried high dose oral w/ very minimal results. Suggested by Dana Farber, one of my doctors. I normally don’t comment but thought it might be helpful. Glad to know you’re checking…

Lori, Volunteer Mentor | @loribmt | May 12 10:13am

In reply to @chicago2025 "Yes! Tried high dose oral w/ very minimal results. Suggested by Dana Farber, one of my..." + (show)

@chicago2025 😅 Not to sound creepy, but I'm always lurking in the background. I'd love to encourage you to pop into more conversations. We can all learn so much from each other's experiences.
After you have your iron infusions, do you have any issues with fatigue?

chicago2025 | @chicago2025 | May 12 3:51pm

No issues with fatigue, but I did not have any before, even when HgB started to go down. Keeping as active as possible is probably really important.

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