Hair Loss on Acalabrutinib: Has anyone suffered... - CLL Support

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Hair Loss on Acalabrutinib

Vinweesel2023 profile image
14 Replies

Has anyone suffered significant hair loss while taking this drug? Does the hair loss stop at some point in time. Does the hair regrow? This is the one thing the oncologist said wouldn't happen. I have been taking an iron supplement and 5,000 mcg of biotin, information that I read in other posts. My hair is literally falling out by the hand full.

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Vinweesel2023 profile image
Vinweesel2023
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14 Replies
croakerUK profile image
croakerUK

Not sure of your sex, but as a male who has little hair to lose, I have not lost any more since starting Acalabrutinib 18 months ago.

Artlover1908 profile image
Artlover1908

No I've not had any hair loss, I thought the condition might change but luckily it hasn't. When I started treatment I asked about my hair and the consultant said it wouldn't affect it. Could it be something else, it must be very distressing. Hope you find the cause.

Vinweesel2023 profile image
Vinweesel2023 in reply toArtlover1908

The first words out of the oncologists mouth "you will not lose your hair" and no one will even know you are taking the drug. I beg to differ. After reading the responses to loss of hair it should be listed as a side effect. I have lost all faith in the doctor.

Megrosegod profile image
Megrosegod

I have been taking Alcalabrutinib for 18 months and in that time I have lost a lot of hair. My hair is now quite thin although shiny and otherwise in good condition. You are ahead of me in that I am currently researching the efficacy of Biotin. My understanding is that if your body is not deficient then it will make no difference. How long have you been taking Biotin for?

Other than this side effect I am delighted with how effective Alcalabrutinib has tackled my CLL. In the last 2 years I have had 2 hip replacements, I have my full energy levels back to pre diagnosis and am able to enjoy a full and active life.

I would also be interested in any feedback from those more knowledgeable than I in the “hair matter”

Vinweesel2023 profile image
Vinweesel2023 in reply toMegrosegod

I just started taking Biotin so I can't say how much it has helped. My brush is full every morning. I am taking 5,000 mcg of Biotin.

Vinweesel2023 profile image
Vinweesel2023 in reply toMegrosegod

I also read that if you are not deficient in Biotin it will not help. I just started taking it to see if anything changes. I agree that Acalabrutinib does work and my numbers are great, PET and CT showed no other cancer but the side effects have been brutal. I think I have had every one. I managed the headache and nausea, the muscle cramps and fatigue, the heart issue but the "losing my hair" has been overwhelming. I take 5,000 mcg Biotin.

Megrosegod profile image
Megrosegod in reply toVinweesel2023

I hope your Alcalabrutinib side effects settle down it sounds as if you have had a rough time. It took about 6 months for me to overcome all the headaches and fatigue. Let’s hope Biotin will make a difference to hair growth. Take care

Tucano profile image
Tucano

I have had some hair loss. Not too much but still more than expected. I am also checking if Biotin is helpful in diminishing the loss.

Vinweesel2023 profile image
Vinweesel2023 in reply toTucano

Let me know if you see more results from taking Biotin.

Tucano profile image
Tucano in reply toVinweesel2023

Will get back to you on progress

Daisy396 profile image
Daisy396

I have had some hair loss, not too much but enough to concern me. I have been taking Acalabrutinib for 9 months. The hair loss started approximately 3 months after I started treatment.

Vinweesel2023 profile image
Vinweesel2023 in reply toDaisy396

Are you still losing hair or has it stopped.

Daisy396 profile image
Daisy396 in reply toVinweesel2023

I am still losing hair.

gymbunny1 profile image
gymbunny1

I too have had hair loss on calequence. Biotln helps. You should not take it a few days before your blood work. I will throw your bloodwork off

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