Geebee has had two rounds of FCR earlier in diagnosis, then Ibrutinib for nearly 4 years and then Venetaclex for two years which was stopped in March this year. There was residual CLL in the blood, and now five months later the CLL is getting out of hand again. Possible Mylodysplastc Syndrome, as markers in blood & bone marrow, could be happening. Waiting on lymph gland biopsy result: from neck & supraclaviculer(?) areas. PET SCAN shows whole internal lymph involvement. Since match testing takes 4-6 weeks 4 of my siblings are testing now. What treatment will be used to ‘sort out’ the CLL first? Hoping GeeBee doesn’t need a bone marrow/stem cell transplant. Any one been through this? I do have some info on types & deletions if needed. Many thanks, Veebee
what’s the next step?: Geebee has had two rounds... - CLL Support
what’s the next step?
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Veebeegeebee
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edit: the 3rd FCR withVinchristine was stopped as it didn’t work
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AussieNeilPartnerAdministrator
Veebee,
I'm sorry to hear of Geebee's news. If you add more background in your profile ( healthunlocked.com/profile/... and lock your post as explained in this post and the illustrated reply, I expect you'll get more replies.
healthunlocked.com/cllsuppo...
You might also get some suggestions on possible clinical trials or whom to see for a second opinion if you share what state you live in.
Neil
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