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Waldenström's Macroglobulinemia
Hi, my dad has recently been diagnosed with WM. First things first; he told me 90% of his bone marrow was infected with the cancer. How severe would that be compared to other patients? He also falls into the high risk category. Has anybody here with WM fall into the high risk category as well?
Much thanks to all!
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The levels of IgG at 326, IgA at 30 are low while IgM is high at 1550. I have MYD88 gene mutation. I have 1.2g/dL IgM-kappa paraprotein. I believe this is associated with higher risk of disease progression. So I am being monitored. I also had whole body scan which did not result in any tumors anywhere. This scan will be repeated annually now. Thanks to Mayo clinic cancer center I am now confident I will get proper care. Thank you
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5 ReactionsI have WM with only IgM of 850 now 550 but have Anti-mag > 70000 for two years now and have had 16 treatments with Rituximab. My neuropathy is still progressing - even in my face. So, my doctor would like to start me on Zanubrutinib. Does anyone have experience with this chemotherapy?
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2 ReactionsSince everyone responds differently, I highly recommend joining the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) - either join on line or call. Then click on the LIFELINE for one-on-one support for PN and also Zanubrutinib. If you need assistance, do not hesitate to contact me. We are very rare and all experience treatments differently.
Also, the IWMF has a list of WM specialists worldwide and can assist you with a second opinion by one of the doctors on the list. Personally, my local hem/onc coordinates my WM treatment with my specialist, who happens to be at Mayo.
We are all here to support you with WM.
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2 ReactionsHello everyone. I was diagnosed with WM in February of 2023 at the VA Medical Center in Topeka, KS. The VA began monitoring my IgM proteins in 2018 and were calling it MGUS when my M protein was at 300. I didn't have symptoms at the time, and they told me not to worry since there was very little chance that the MGUS would advance to cancer, so I didn't think much about it. That is, until I began to experience tiredness, lethargy, weight loss and breathing problems. When my IgM level reached 600, they performed a bone marrow biopsy and body scan. The body scan didn't reveal any positive findings, and the blood work was OK. I also have severe emphysema and the VA docs attributed my symptoms to the emphysema and did not treat the WM.
They have continued to monitor my Igm proteins over the last year and the count has climbed to 800. It seems that my M proteins are increasing at an accelerated rate. The VA doc is unconcerned. He seems to think I have "smoldering" Waldentrom's and the fatigue, weakness, breathing problems and weight loss are due to the emphysema. He said the emphysema will probably get me before the M proteins reaches the 3,000 level where he would want to prescribe a treatment.
Does anyone else here have WM AND emphysema. Is the VA doc correct? I think the VA does not want to risk treatment given my lung disease. If anyone has any advice, it would be greatly appreciated.