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Marginal zone lymphoma & chronic lymphocytic leukemia, anyone?

Posted by lynnstefanik89 @lynnstefanik89, Dec 17, 2024

Recently diagnosed with MZL and CLL. I don't know which of the MZL types I have. Visiting Mayo in two weeks for second opinion. Already had bone marrow biopsy, and CT showing enlarged spleen, enlarged liver, and fast growing nodules on my thyroid. Current doc says we're at the watch and wait stage. Seems like a lot of stuff going on. Anyone have anything similar and would share your experiences?

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lynnstefanik89 | @lynnstefanik89 | 3 days ago
In reply to @mrgreentea "Hi @lynnstefanik89, Welcome to the community! (and sorry you need to be here) I started my..." + (show)
@mrgreentea

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!

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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!

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