A long term cll patient

[NANACAROL]

I know some of my issues and problems are nothing compared to some of you. I am losing my hair. On iIb I also have heavy bruising. I have other issues but I am blessed I am still here to complain after double pneumonia sepsis and lung cancer shingles...

[Blue-Ice]

Hi NANCAROL, I was diagnosed in 2013 and took my first treatment(FCR) and they now want me to switch to Ibrutinib. How has Ibrutinib worked for you and have you had any side effects. I so can you tell me what you've had. thanks Blue-Ice

[NANACAROL in reply to Blue-Ice]

I was diagnosed in 1996. I also had chemo. The ibrutinib works extremely well. The side effects I have is bruising mostly on my arms, the joint pain mostly in feet, losing my hair slowly. I hope this helps you .

[Yarwis]

Hi NANACAROL, I too am a long term CLL patient. I was diagnosed 1994 when I was 36. It's great still to be here and enjoying life, isn't it?

I had an STC and am now on Zanubrutinib on a trial - with the associated bruising 😏. It's early days for me but looking forward to the future.

Great to hear from you with your wonderful attitude despite your many trials!

I read an article on here a few days ago about hair loss and Ibrutinib. Might be worth searching for it as some people seemed to have found things that worked for them.

Keep fighting xxx

[NANACAROL in reply to Yarwis]

Dear Yareli’s thank you for the kind thoughts. I will look up hair loss. I get ivig infusions about every 6 weeks. My ohh is always low so to keep from getting sick I get a fill up. Lol I was young also when I was diagnosed but we are here.! God is good.

[lankisterguy Volunteer]

Hi NANACAROL,

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There have been 87 previous discussions about hair loss, most of them related to Ibrutinib, and apparently this may be a side effect that the medical teams did not record.

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See this list of search results: healthunlocked.com/cllsuppo...

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Those include these:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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And on each of those pages you can look for the box labeled "Related Posts" to find other posts like these:

Related Posts

*Ibrutinib and hair loss

*CLLHair loss Ibrutinib

*Ibrutinib Hair - Wavy & Fritzy

*Frizzy Hair and Ibrutinib

*Biotin/hair/Ibrutinib

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Len

[country76]

I am on Ibrutinib since March of this year. I have been taking biotin and have gotten amazing results, my hair and eyelashes are getting thicker.

I have had heavy bruising lately and wondering if there is anything I could take for it. I have to wear long sleeves.

I also had double pneumonia from Legionnaires disease and there is a very small spot on my lung, maybe a residual from Legionnaire time will tell. This was just prior to my starting treatment.

I am so grateful for Ibrutinib and am noticing every week I am starting to feel really good.

[NANACAROL]

Thank you will look as I am sure all will.