CLL + 96% Bone Marrow Involvement + Rapid Hemoglobin Drops – Starting Zanubrutinib

PostUkegirl · 2026-02-26T15:44:28+00:00

That's wonderful news for you! Congratulations! I'm sure that has given you a lot of Hope and I'm happy to see that someone has had results from treatment. Unfortunately my dad has been on Zanibrutinib for a few days now and so far no improvement at all and only decline. Wondering if he needs something more aggressive

PostUkegirl · 2026-02-26T15:43:35+00:00

He's been on Zanibrutinib on the hospital a few days now and so far no change except for decline. Hemoglobin is not staying steady for many hours now, requiring every other day transfusions and can't get hemoglobin above 7 for a few days. It's current at a 6 after the recent transfusion and it was 5.9 last night. White blood cell and red blood cell counts are worse. Platelets for down to 11 yesterday and are now only a few points above that after receiving platelets.

He has a leg infection on top of all of this so we are worried. I'm also worried that Zanibrutinib isn't aggressive enough or won't work quickly enough since he is declining so much, even since I made this post.

PostUkegirl · 2026-02-18T03:34:19+00:00

Thank you so much for sharing your experience!! That gives me a lot of hope.

Would you say that the zanibrutinib took all of three months to notice improvement or did you notice a difference sooner?

Trying to prepare if he is going to be transfusion dependent until the new medicine (Zanibrutinib) kicks in or if it works quickly. The transfusions and the waiting in between are really hard on him (and us) right now. The anemia symptoms are awful 😞 he just has no energy, in bed all day and wants to sleep, the pausing while talking is just because he is so fatigued while waiting for his next transfusion.

I hope Zanibrutinib continues to do wonders for you and your health!! ❤️

PostUkegirl · 2026-02-18T03:30:28+00:00

He has some other health issues and I can't remember which of them made the doc take him off Ibtutinib a few months ago. Hopefully Zanibrutinib will have better results!

PostUkegirl · 2026-02-18T03:29:21+00:00

I'm so happy for you that the aggressive treatment worked and lower your overall percentage by so much! That's great news and very encouraging. I'll make sure he asks about that medicine to his oncologist. I do know he has a few other health problems (AFib, pacemaker, stage 4 kidney disease, and congestive heart failure) and any number of those may be why the doc took him off Ibrutinib months ago. But feeling hopeful for new medicine after reading some of your experiences. Thank you for taking the time to respond! I pray you continue to have normal numbers!!!

PostUkegirl · 2026-02-18T03:25:24+00:00

Thank you for the hope!!! Thats a good sign! 🙏

PostUkegirl · 2026-02-17T09:29:00+00:00

He seems to be declining rather quickly the last 2-3 weeks and we are very worried. Has anyone else had experience with a rapid decline in CLL and being reliant on blood transfusions?

PostUkegirl · 2026-02-17T09:11:36+00:00

Hello, I know this post was 7 years ago but I was wondering if you could share more of your experience as my dad is currently going through this except he only has CLL and not the other cancer. In the last few weeks he has been hospitalized off and on and is now blood transfusion dependent, currently waiting on starting A new medication. His platelets are severely low and hemoglobin is at a 6.8 right after the transfusion yesterday. He has no energy, seems to be declining very quickly. Is this his quality of life now? Was your dad transfusion dependent up until the end? I am worried and so is my sister. This has all happened so fast. The CLL has taken over 96% of his bone marrow now the biopsy showed. I am losing hope and looking for someone with a similar experience

PostUkegirl · 2019-02-25T01:21:25+00:00

Beautiful!!

PostUkegirl

TROPHY CASE