I start Ibrutinib n Venetoclax on the Flair Tr... - CLL Support

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I start Ibrutinib n Venetoclax on the Flair Trial tomorrow... after over two years w&w ... will I lose my hair ??

9 Replies

Hair Loss

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9 Replies
MartiP2009 profile image
MartiP2009

I only did Ibrutinib and will start venetoclax next week. I didn’t loose much hair at all, but the quality was terrible until I stopped coloring it. Nails also got very fragile. Good luck I’m sure you’ll do great!

in reply toMartiP2009

Aw thanks I will keep an eye on my nails ... it’s a scarey prospect starting something new I just wanna be able to keep working x

Oleboyredw-uk profile image
Oleboyredw-uk

It is not normal to lose hair with Ibrutinib and Venetoclax to my knowledge. I have had both together like you are. From memory having watched the discussions on her for six years I cant recall anyone ever mentioning it and it certainly was not listed as a side effect in the documentation I was provided with.

best rob

in reply toOleboyredw-uk

Oh sorry for asking what is obviously a stupid question....

KatieBlue profile image
KatieBlue in reply to

No such thing as a stupid question. We all have a lot on our minds and sometimes things escape us, obvious or not. The journey can be overwhelming and info may not always be clear cut. Even when we ask questions, there may be a disagreement among the answers.

Ask your questions and please don’t feel bad or sorry or stupid if you get a quick reply that makes the answer seem obvious. I’m new to the forum as well, so I have not read through the past years of info to know what others may readily know. I presume part of the forum is community and support for those of us who end up here. Sometimes that is the more important part of the process of asking the question than the answer.

Best to you ...

Oleboyredw-uk profile image
Oleboyredw-uk in reply to

No questions are stupid. If you are unsure of anything it is definitely right to ask for clarification. We are all here to share what knowledge we have.

BeckyLUSA profile image
BeckyLUSA

When I started Ibrutinib, I noticed some hair loss, more of a thinning of hair, but not a full on hair loss like experienced by those on true chemo therapy. As mentioned by others on the site previously, the hair texture is more often the issue. Mine went to coarse and unmanageable. Also, nails have been a worse issue. If your doctor approves, start taking Biotin. But remember, it takes several months to see a difference once your start the Biotin. It has helped somewhat with my nails, but not completely. They are still fragile and have to keep them cut extremely short. I did not notice any changes when the Venetoclax was added. By the end of my first year on Ibrutinib, my hair was pretty much back to its normal texture, but not my nails.

BeckyL USA

Lola69 profile image
Lola69

Hi! No u won’t lose hair but may change the texture. also nails may split. Soak them in olive oil 5 min a day. amazing results.

I282much profile image
I282much

Not at all....and you will feel better and better relatively quickly!

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