Marginal zone lymphoma & chronic lymphocytic leukemia, anyone?

Hi @lynnstefanik89,

Welcome to the community! (and sorry you need to be here)

I started my Mayo journey a little over 1 year ago. It took about 5 months for the docs to determine that I had CLL, SMZL, and WM (Waldenstroms) - I see Dr. Parikh@Mayo. I had really extensive testing & spent my time learning all (ok, "a lot more" than I knew before) about CLL. It's a DEEP but no scary hole to go down – an OK way to occupy your time... but, at least for me, I kept from becoming obsessed about it and carried on with life as normal.

By May, I was classified as being in stage 4 despite having almost zero symptoms (I've since learned about many folks that have really serious symptoms that have yet to be prescribed drugs). I was prescribed a BTKi inhibitor (Zanubrutinib... one of a class of drugs that all [not coincidentally] end in "nib"). FOR ME, being on Z was quite simple: 2 pills in the am & 2 pills in the pm. No effects. Most all of my bloodwork is back to normal. Alas, each of us are different & you will need to work with your doc to find what works for you.

On the blindly bright side for those of us with these conditions, there has been so much progress on the drug side of things in the past several yrs, with even more promising drugs on the near horizon.

Feel free to reach out if you would like to discuss further!

Hello!
Thank you so much for reaching out. You are the first person ive talked to that has a composite lymphoma diagnosis also. We are still pinpointing which MZL I have and the exact stage. I see the Doctor again on Monday where we will sort out all the test results so far and see where we go from there. I'm so glad to hear your blood-work is normal and the treatment you're on has been without bad side effects. I appreciate you sharing! Thank you!

I was diagnosed with MZL in 2016 as a result of blood tests that showed an elevated protein and a CT scan revealing a slightly enlarged spleen. Subsequent testing and a bone marrow biopsy confirmed the diagnosis. The result was watchful waiting. There were no changes till 2024 when my hemoglobin dropped to dangerous levels. I was then diagnosed with Waldenstrom Macroglobulinemia. Treatments were Bendamustine (chemo) twice a month on back to back days for six months and Rituximab (immunotherapy) once a month for six months. Everything went well till I contracted PCP pneumonia in the middle of my monthly treatments. Six months after completing treatments I am about 80% back to normal. WBC and RBC levels are still low but hemoglobin is back in normal range.

Hi @oashir, I’d like to officially welcome you to Connect, though I see by your profile that you’ve been a member since July. I’m so glad you popped into the discussion and shared your experience with MZL. Everyone has such a unique story with their blood cancers.
It sounds like you did really well with the treatments until you developed PCP pneumonia. That had to be a frightening and discouraging experience. Did it take quite a while to recover from the pneumonia? Mid month, between cycles is when we’re usually at our most vulnerable with neutrophil levels low. I’m sorry to hear that you’re not quite back to normal with all the blood work. Hopefully that will even itself out over time.
Are you off all treatments now?