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CLL Support Association
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Neutropenia with Ibrutinib

Husband becoming neutropenic after 2 years on Ibrutinib. Maybe he will be forced to quit treatment if he can’t take it anymore because of that. Is there any other options?

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I went through a version of this on ibrutinib. My doctor - a CLL specialist - said the usual protocol is a short stoppage of ibrutinib, after which patient can go back on at full dose and neutrophils will not drop again. In other words, that particular reaction to ibrutinib is often a one-time thing, not a permanent thing. My neutrophils are currently 1.5 (higher than they have been at other times on ibrutinib). And I am currently taking 2 pills a day (280 mg). I had been taking just 1 pill daily (140 mg) for a long time.

EDIT: I have at times had normal neutrophils on ibrutinib - i.e., higher than 2.0. But I have also had much lower.

kim

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Thank you for sharing your experience. I understand that his dr will probably reduce his dose to one pill, because after a two week break and few Neupogen shots, he try to take two pills but neutrophils drop again to 0,3... So he stop again taking it for one week. Did you had progression of your disease with only one pill?

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I had no disease progression on only one pill a day. But rencently my bone marrow has been compromised from other things (chemo-radiation for a different cancer). And my CLL specialist thought it would be good for me to go up to 2 pills a day just to be sure the CLL is fully controlled. I was on 1 pill a day for 6 months, and CLL was fully managed during that time. No disease progression.

kim

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What are the signs of bone marrow failure or compromised?

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For me it is the return of cytopenias - anemia (hemoglobin), neutropenia (neutrophils), thrombocytopenia (platelets).

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Hope that you will be ok with that soon. Thank you so much.

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Is there a specific treatment for your cytopenia? Or you just taking Ibrutinib?

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Just taking the ibrutinib since that controls the CLL, which then allows my bone marrow to produce all the blood cells in the right quantities. I am not cytopenic right now, as far as I know. Need to see next month's blood results to know for sure. But I think I am back in the normal zone on everything. Ibrutinib works surprisingly quickly for me. Not everyone responds that quickly, but I seem to.

kim :)

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After just 5 days without Ibrutinib and Neupogen, he have huge sweats, big fatigue ans his nodes popped everywhere... hope that he will be allowed to take treatment again tomorrow... 🤞

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that's exactly what happens to me after 5 days with no ibrutinib. hope he can resume soon.

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Hope that it’s not RS... 🙏

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One consideration is that CLL can itself contribute to neutropenia. I had neutropenia since diagnosis. No ibrutinib. Maybe ask if there is a way to find out if it is the treatments fault?

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