Hair loss while taking Acalabrutinib

[Vinweesel2023]

My hair is coming out in handfuls as I mentioned in a recent post. What used to be long to my waist, thick and shiny is now dry, dull and very brittle. This started two months ago. As I have been told I will be on this drug for the rest of my life will my hair ever grow back or should I just cut it all off?

[SofiaDeo]

Hair changes and thinning have been documented with ibrutinib, and so it may turn out that acalabrutinib does the same. Extra nutrition may help a bit, especially since as we age our hair may be affected from less nutrient absorption compared to our younger selves.

Mine has thinned drastically with treatments, I wear it at armpit length now instead of near my waist.

[Vinweesel2023 in reply to SofiaDeo]

I have never had issues with thin hair and have always had it long. I did not start losing my until two months ago. If I am on the acalabrutinib permanently will my hair ever grow back is what I need to know. I called the cancer clinic today but they did not get back to me.

I feel sick every time I see the amount of hair in my brush.

[SofiaDeo in reply to Vinweesel2023]

These drugs are so new, no one has an answer to that question yet with certainty. CLL is a rare cancer, the new targeted agents like acalabrutinib don't have thousands of patients with decades of experience taking them yet. Remember cancer drugs have an accelerated approval process compared to other diseases, so it will take some more time to have 100% confidence in side effect profiles.

FWIW, dermatologic side effects like folliculitis (I am guessing this is contributing to our hair thinning/loss) have been reported to *decrease* after one has been on the med a while. The first year is what is being reported as the highest incidence of the various side effects.

pubmed.ncbi.nlm.nih.gov/326...

I seem to recall a few people here commenting on B vitamin supplementation helping with their nail problems. Perhaps try some extra nutrition components specifically for hair? You may be able to at least slow down a high rate of hair loss, until your body adjusts to the med. It must be very upsetting to have this side effect, sorry to hear about it.

[kitchengardener2]

When this discussion came up before, I was interested because my hair is much drier but also wavy where it has always been really straight. I haven't noticeably lost hair but I now have much less other body hair. Into my third year of Acalabrutinib.

[CLLCalifornia-USA]

I’ve always had long thick hair. Easier to wear it long than having to mess with short hair. When I was going to start chemotherapy, I was warned I would lose my hair, so I cut it to chin length and donated it to Locks of Love. Well, I didn’t lose my hair. Five years later I had Bendamustine and Rituxin and endured thinning. I started Biotin and have continued taking it. I have been on Ibrutinib for 8 years. It has made my hair curly in places that were straight. It also halted the graying process which doesn’t matter because I color my hair. My hair has always been something I took pride in so initially it was hard. I’m fortunate that it looks great again. These drugs work differently for everyone, but they are giving us back our lives. Good luck. I know it’s difficult. 🙏 Sally

[lindalou5 in reply to CLLCalifornia-USA]

It was nice for me to read your reply about the no hair loss with chemo. I may be starting my treatment soon and as dumb as it sounds, I dread losing my hair. Been on IB and then acal. for about 5 years now and my hair went from naturally wavy and some gray, to curly, thick, and only a strand here and there of gray. I did use biotin at first for about a year for my nails, but haven't used anything else since then.

[CLLCalifornia-USA in reply to lindalou5]

Isn’t it crazy how differently these drugs work for people? All my life I’ve gotten compliments on my hair. I never realized how fortunate I was. Oh the things we take for granted.😉 What will your next treatment consist of, or do you know? Wishing you well. Sally🙏

[lindalou5 in reply to CLLCalifornia-USA]

I will have more info after tomorrow's virtual visit with a specialist. May have to start chemo for DLBCL-lymphoma. I would have to go off my acal. before starting the chemo. So at this point, I do not know. doc did say that after the treatment for the lymphoma that I would be starting on Venetoclax for the CLL. I hate starting new stuff when one never knows what side effects one might go through.

[CLLCalifornia-USA in reply to lindalou5]

I just did a quick check of your profile and you are dealing with breast cancer also? You’re a strong woman. Keep me updated on your progress. 🙏Sally

[lindalou5 in reply to CLLCalifornia-USA]

Three cancers in one..fun! I have been lucky so far that they say I have no spread of the breast cancer and very little chance of reoccurance in other organs. Still dealing with lymphodema after surgery and going through therapy for that.

[CLLCalifornia-USA in reply to lindalou5]

Good luck. I’m hoping tomorrow’s appointment will be positive. 🙏Sally

[thompsonellen2]

I started taking 10,000 mcg Biotin pills and I have my nice hair back. Unfortunately, I developed a resistance to acalabrutinib and had to move onto other therapies which don't impact my hair, but honestly, I wish I had been able to stay longer on the first line treatment.

[Vinweesel2023 in reply to thompsonellen2]

Looking into biotin but after researching it notes say that unless you have a biotin deficiency they say it doesn't work. I called the cancer clinic 3 days ago to ask how taking it affects the drugs but they haven't gotten back to me as of yet. My naturopath has it at her clinic for me to pick it up. At this point I am willing to try anything.