I shifted from Imbruvica to Venetoclax because Imbruvica was showing signs it was failing and my ALC was rising. Also, I had an Afib event and had cardioversion to get back in rhythm. Even before I reached full dose of Venetoclax my white count and ALC were falling fast. After a three weeks at 300mg my ALC has dropped to 1 and I am not sure it has stopped. My Hg is 12.5 and platelets 125. I am continuing to take left over Imbruvica at 280mg. Wondering whether I need to reduce Venetoclax or reduce/stop Imbruvica? Would that allow Hg and platelets to recover?
Thanks, Dennis, 72
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Dennis - Please make that decision with your doctor. It's certainly something no one here should give advice about! Your doctor needs to know exactly what you are taking to make decisions about adjusting meds or doses. I'm glad that you are getting a good response with the Venetoclax.
Absolutely agree with MsLock there Dennis. I can’t get a sense of whether you’re using up the Ibrutinib without your doctor knowing.
My ALC was approaching normal on Ibrutinib when I started Venetoclax and had dropped to normal before I hit therapeutic dosage so I understand the concern. However managing correct dosage can be vital with the efficacy of these meds so please speak to your specialist about your concerns.
Have you or are you scheduled for a BMB to check whether you’ve reached MRD status?
Dennis, I agree your question is one for your doctor. With the limited information you provided, it would be hard to even venture an educated guess.
That said, your concern with the venetoclax and low dose ibrutinib combo appears to be, from your post, a decrease in your hemoglobin and platelets. I just wanted to make the observation that in the world of us who have Cll, your hemoglobin and platelet numbers look fine.
Our hemoglobin levels tend to drop as we age anyway, so 12.5 is not bad and unless you are running marathons, I doubt it’s even noticeable to you it’s dropped. Platelets of 125 are just out of low normal range and plenty high enough to keep you from serious bleeding problems.
The conversation I would want to have with my doc if I were you is at some point if he will consider taking you off both drugs. That’s the plan in some trials combining ibrutinib and venetoclax where many are getting deep mrd undetectable remissions.
It looks like the combo is working well for you. I might consider discussing dropping ibrutinib if your afib returns. I personally would not alter the drugs I am taking if they are working very well just because of the hemoglobin and platelet levels you are at, which numbers to me as a lay person don’t seem that bad at all.
Hg and platelets have not changed much over the past few months. My inquiry is/was not in expectation that anyone would advise me as a medical professional in what I need to do but to share any closely related events. I appreciate this group and all I have learned as a participant. I will run down the right answer within the medical community and I will be able to state “my” case whenever anyone has this similar query in the future. And of course what I do will only apply to me but I hope I can help educate others. I was checking whether others may have had a situation like mine and what their doctor advised them to do.
Let us know what advice you receive Dennis because if I or others find themselves in this situation, it will be interesting what the medical response is (although I appreciate each situation may be different).
I’m on a trial and I’m also concerned as to what the response will be if my levels start to reduce beyond desirable level. My platelet and neutrophil count has dropped but interestingly, my Hb has increased.
I’m not sure how long you’ve been on treatment which is why I asked about a BMB because at some point they’ll need to be an assessment of treatment success. This usually would drive the decision as to dosage/continuance.
Dennis, I can only add to what I wrote above. From a lay perspective, I wouldn't think your hemoglobin and platelet numbers would be in a range where your doctor would alter your meds. Ibrutinib has been helping my hemoglobin and platelets improve. I am in the same general range you are in and my doc is very happy with the improvement, as am I.
A bout of AIHA dropped my hemoglobin to 7 and that is quite a miserable feeling. Its back up around 13, but I learned as it came back that I can function pretty well with anything over 10. I think they start worrying about platelets when they drop below 100, but even at 100 and somewhat below there are enough platelets to do the job, so 125 and stable is fine.
As I wrote above, I would in your shoes be excited about the possibility of getting off I and V, not because of a hemoglobin or platelet concern, but because you could be or eventually be in a remission where you do not need either drug.
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Anyone out there with a very high ALC and not needing treatment.
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ALC is still going up
