Waldenström's Macroglobulinemia

Hello 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.

Since 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.

I 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?

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

Hi @lorkish, Welcome to Connect! Thank you for sharing your experience of finally getting diagnosed with WM. Diagnosing blood disorders can sometimes be challenging but your hematologist pretty much missed the mark! I read in another comment you posted about the high dosage of Eliquis this doctor had prescribed. You sure made the right move with changing hematologists. It sounds like you’re on a better treatment path now and have a doctor you can trust to help you make the right decisions going forward.
With your blood work every three months are there specific markers your doctor is looking for?

I was officially diagnosed with MGUS quite by accident after having bloodwork done to help explain frequency of sinusitus in February 2023. I then had a bone marrow biopsy which was most unpleasant. The hematologist that saw me did not gather all the pathology reports and slides initially to confirm diagnosis of WM. I decided to change to a new hematologist/oncologist who then put it all together, analzed the results and informed me that it is indeed WM. I now have my bloodwork checked every three months and see an expert blood cancer doctor familiar with WM. I am asymptomatic. It is so strange to have a condition that most people (like me initially) have never even heard of. I am so grateful this disease is slow growing and that I may not experience any symtoms for the remainder of my life.

I was diagnosed with Waldenström's while a neurologist at a university teaching hospital who was looking for the cause of my Ocular migraines. in 2001, went on watch and wait until 2006. was getting pneumonia about twice a year, IGM was rising up to upper 900's. was also tired all the time. Received Rituxan infusions X4 late 2008 without benefit.

Went to Dana Farber (Dr Treon) after testing and finding lymph node problems, suggested treatment with Bendamustine and Rituxan X4 (completed 2010) followed by 12 months of bi-monthly Rituxan infusions.

Dramatically lowered IGM to 225 and remained in that are for over 10 years. Now 1350.

Suggestions. Get as much information as you can. IWMF Educational forums great for that, and the chance to meet and interact with other Waldenström's patients. But also find a Doctor with more than a little Waldenstrom's experience. also, there are numerous Waldenström's patient chapters in many locations. Contact the IWMF for one near you.

Lastly, keep a positive attitude. This is an indolent disease. Don't let it control your life,

Art

Hi @artmulh, I look forward to learning more about you. Having attended two of the IWMF educational forums, I assume that you and your partner have been dealing with Waldenstrom's macroglobulinemia (WM) for a while. What would you like to share about your experience? What tip would you offer someone who has been newly diagnosed?

Hi Lori, my Mayo doc seems to be leaning that way from all of the prior UMN Fairview test results, but I'm still waiting on a new set of supplemental test results he wanted to run. My appt was just last Wed. so it may still be awhile.

Paul

My wife and I have attended two. They are very informative with top notch presenters.

Art and Donna Mulholland