Waldenstrom macroglobulinemia (WM): Deciding treatment options

Good morning! I have appreciated reading all of your experiences and opinions. I was diagnosed with WM in July but I am pretty certain the I had it for some time before I had the routine blood test that raised the alarm. The bond marrow biopsy that followed confirmed the diagnosis. I have read that some of you began treatment shortly after diagnosis. I am interested in knowing what symptoms you had that made your doctor and you decide that treatment was needed. Has treatment helped those symptoms to disappear? Thanks for any answers I receive!

Good morning! I have appreciated reading all of your experiences and opinions. I was diagnosed with WM in July but I am pretty certain the I had it for some time before I had the routine blood test that raised the alarm. The bond marrow biopsy that followed confirmed the diagnosis. I have read that some of you began treatment shortly after diagnosis. I am interested in knowing what symptoms you had that made your doctor and you decide that treatment was needed. Has treatment helped those symptoms to disappear? Thanks for any answers I receive!

Hi @ewash55, I went to an annual physical in Dec23 and had a high WBC count(50k+). My doc suggested I schedule an appt with a local cancer group to check it out. Over the course of the next FIVE months they ran additional tests, including a CT scan, and a bone marrow biopsy.
The only symptom I had noticed was a slight fatigue. The tests showed I had some slightly increased lymph nodes, a slightly enlarged spleen, and a higher WBC count in my BMB.
Test results showed I had Del17p deleted, TP53 mutated, MYD88 mutated only in the marrow, etc.. It was all of these factors that made it challenging for the docs to decide what I actually had (CLL+Waldenstroms).
My CLL doc said that this combination put me at RAI stage 4, so I should start treatment... which was Z. I've been on it for 18 months, and so far it's been very good for me.
Masking more probably would have kept me from getting 3 sinus infections this year, and ending up in a EU ER for 3 nights with pneumonia (what an experience, OK and not so great!). So, like many, my immune system is shot & now I am on monthly IGIV (tbd if it helps). BUT, other than that, all's good.

Btw, I really like the attached summary of current CLL drugs and what they target (you can find the source ehre: cllglobal dot org for cll-global-year-review-oct-2024.pdf -- see slide 2).

@ewash55
Good morning! I was diagnosed in June with Cryoglobulinemia Type 1; then following a bone marrow biopsy, Lymphoplasmacytic Lymphoma. It falls under WM types.
My oncologist recommended chemotherapy. I didn’t disagree. It was actually a relief to get a diagnosis and a plan! My feet were numb, first got idiopathic neuropathy diagnosis. But I had two toes on each foot that turned blue, purple and then black. Scary stuff. My fingertips were now numb.
Anyway, I was 70 and besides periodic bouts with asthma, in very good health. The dr was optimistic that I could go into remission, maybe for 5 or more years. My last treatment was two weeks ago. The outcome is good; the numbers continue to go down. No numbness in my hands. Toes tingle often, but no pain, dealing fine with cold (Wisconsin), some continued mild numbness in balls of my feet.
Anyway, that’s my story. Now looking forward to regaining my energy and recentering the world of restaurants and travel!

Good morning @ewash55, I was initially diagnosed with MGUS with IgM levels above 500. This was discovered during a routine blood test. I had and still have low lung capacity, but always assumed that was from earlier lung damage. Three months ago, a BMB confirmed WM Wild Type (no MYD88 and CXC4 mutations). My labs show anemia, but not too bad yet. I'm holding off on any treatment (Watch and Wait) for the time being.

@vicmar Thank you for your response with all of that information! I return to the doctor today and hope to leave the appointment with a plan. I am also 70 and have neuropathy. My IgM level is nearly 3000 but the symptoms I have are worsening so I believe that Watch and Wait is over for me. I was diagnosed in July.

@ewash55

@vicmar
Good luck to you! My IgM numbers were in the 2500 range before treatment. My lab before my last treatment was 342! My Dr said it would continue to come down in the next months, but not to be worried if it doesn’t reach normal range. My next follow up labs are mid January.