CCL n ibrutinib side effects: My dad was... - CLL Support

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CCL n ibrutinib side effects

sweetromeet profile image
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My dad was detected with CLL in December 2019..2 chemos of Rituximab and endoxon .He was doing well..bt he was put in ibrutinib which is working wonders bringing wbc from 500000 to 150000.But had to stop the medicine after 8 days dur to side effects ..capillary burst and internal bleeding in the legs.Initial dose was 3 tablets each 140 mg at a time but the doc is now thinking of starting with 1 tablet n increasing it over time.

Need feedback for the same

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sweetromeet
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MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

I'm not sure what is available where you are. Among non chemo agents, some patients do well on a lowered dose. Some change to acalabrutinib (Calquence) in the hope of having fewer side effects, and some move to Venetoclax. Obinutuzumab (Gazyva) would be another non chemo option. You could ask your father's doctor what is available where he is. I hope your father improves quickly and is able to get back to treatment soon.

sweetromeet profile image
sweetromeet in reply to MsLockYourPosts

Thanks

BeckyLUSA profile image
BeckyLUSA

My specialist reduced my dosage to 140 due to severe GI side effects. It has done wonders; however, we will see what my numbers look like and what my nodes look like when I have my CT scan in April. Hope they find the right thing for your dad.

BeckyL USA

cajunjeff profile image
cajunjeff

I would follow your doctors advice and try a reduced dose. There are risks either way which need to be balanced. The obvious risk of starting Ibrutinib again is having another bleeding event. The risk of abandoning ibrutinib is loss of access to an amazing cancer fighting tool.

You can discuss trying acalabrutinib with your doctor to see if it makes a difference, but I would think all btk inhibitors carry bleeding risks.

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