← Return to Waldenstrom macroglobulinemia (WM): Deciding treatment options

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Profile picture for mrgreentea @mrgreentea

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).

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Replies to "Hi @ewash55, I went to an annual physical in Dec23 and had a high WBC count(50k+)...."

@mrgreentea 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. My IgM level is nearly 3000 but the symptoms I have are worsening so I believe that Watch and Wait is over for me.