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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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crraining | @crraining | 10 hours ago
In reply to @janetdh88 "My husband has been diagnosed with an unusual variant of WM. I am not sure if..." + (show)
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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.

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@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.

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crraining | @crraining | 10 hours ago
In reply to @dunewalker "@crraining I was diagnosed with MF two years ago and have been on 500 mg Hydrea..." + (show)
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@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.

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@dunewalker
I am happy to hear the rituximab has helped your neuropathy. Encouraging! Thanks foe your response.

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crraining | @crraining | 10 hours ago
In reply to @bloodguy "I was diagnosed with WM in 2024 and started Brukinsa. After three months with minimal improvement,..." + (show)
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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.

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@bloodguy
Good to hear! Thank you and good luck.

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janetdh88 | @janetdh88 | 9 hours ago
In reply to @crraining "@janetdh88 Thank you for this valuable information. I have been looking at the IWMF website and..." + (show)
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@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.

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@crraining
They also have local support groups and a support group for caregivers. It took me a while to figure it all out.

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