Acalabrutinib and hair loss

[Gampo]

I started on Acalabrutinib 3 weeks ago and one week in my hair started shedding. My Oncologist tells me this is not a recognised side effect, so I’m wondering if anyone else has experienced hair loss on this drug?

[Eucalyptus22]

Hi Gampo, I think you will find a few of us on here (mainly female!) complaining about the Acalabrutinib effect on our hair. Do a search and you will find some coversations.

My experience is that Acalabrutinib causes hair shedding and thinning and makes it coarse in texture. Not good for those of us who value what our 'crowning glory' looks like. However, all is not lost. My own experience is that the shedding finally stops and with careful management you can get your hair back to something like it was before treatment although to be fair it will never be quite as before. After spending a fortune on trying different hair products with some more successful than others this is what I now use.

1. Use Philip Kinglsley scalp tonic and I added rosemary essential oil to it. Use liberally. His intensive treatment is also good in my opinion.

2. When I finally got to the hairdresser she purchased for me the DiLINO reparative low shampoo, hair treatment and post wash hair oil set. She also sprayed my hair with Matrix Miracle Creator before styling. I was so delighted with the result I almost cried! I now use this every week. Wasn't very expensive either unlike Aveda range.

Generally shampoos that are sulphate free are much better for your hair.

3. The Aveda thickening range is good and I use the Aveda Invati advanced before styling. I did try the Aveda botanical range but it didn't improve the coarse hair.

4. I drink a cup of chicken bone broth every day for the collagen. Sometime I make my own, other times I buy cartoons from Take Stock.

5. I sprinkle a bit of organic seaweed on my food daily. Prior to the seaweed my scalp was always sore and you could see my scalp at the crown.

6. I put 1/4 tsp of Camu Camu powder in my breakfast each day. It has very high content of Vit C . My skin and nails were very dry but both have improved but not sure if its the bone broth or camu powder that has improved it.

The result of all this is that I now have masses of hair. Its still angel fine but its condition is much improved and I no longer feel self conscious about it.

Some people take biotin put I'm just a bit nervous of taking any supplements with Acalabrutinib.

I hope my experience and my learning helps you.

Kate

[Gampo in reply to Eucalyptus22]

Hi Kate, Thank you SO much, that's both reassuring and very helpful

[Sushibruno in reply to Eucalyptus22]

Where do u get the camu camu? I just bought collagen and bone broth. I'll let u know the results in a couple of weeks. I shampoo my hair with and condition with "acure" no harsh ingredients. Plus I don't wash it everyday. Do u color your hair? I want to color mine but I have to find something with minimal ingredients.

[Eucalyptus22 in reply to Sushibruno]

I do colour it as I can't face going grey. Its suits some people but not me. I only do the roots now and I go for the palest colour I can get. The Cancer Research UK website put hair dye on their list of possible causes of CLL and as I have been colouring it since my late 30s their comment has alarmed me. I'd like to see some evidence for that.

I get camu camu powder from a UK supplier but I'm sure you can get it from a good health supplier in the US.

Let me know how you get on with your hair. Us 'girls' have to stick together on some things!!

[RosettaClapp in reply to Eucalyptus22]

I have only ever coloured my hair once .and that ws after diagnosis .so i dont think there is a direct correlation!

[mrsjsmith in reply to Eucalyptus22]

Kate,

Very comprehensive list. Would you mind posting a picture of the Di Lino products you are using please because I have just looked online and it’s a huge range, with an equally wide price range, and I am easily confused. Sadly in the last few weeks my hair looks awful, as though I never brush it. I have been working my way through some existing products but nothing seems to be working.

I believe we shouldn’t be increasing our vitamin C with supplements, I forget what the effects are. Hard to say what effect biotin has but I stop a week before bloods.

Thanks

Colette

[Eucalyptus22 in reply to mrsjsmith]

Hi Colette. The kit is the 3 items on left. You can also use a regular styling product before blow drying with these products. Let us know how you get on.

Di Lino kit £28.90 approx. Miracle Creator £10.00 Amazon

[mrsjsmith in reply to Eucalyptus22]

Brilliant thank you so much, and yes I will do.

Colette x

[Jaxon101 in reply to Eucalyptus22]

so sad that we have to spend a fortune trying to keep our hair, with no response from Calquence.

[Vinweesel2023 in reply to Eucalyptus22]

How long did it take before you stopped losing your hair. I feel sick every time I brush my hair. What was once long enough to reach my waist, thick and shiny is not dull, dry and falling out by the hand full. I did call the oncologist but like everything else she just fluffs it off. I asked about taking biotin and should I be concerned and according to her it is on the safe to take list. I started taking 5000 mcg one month ago.

[Eucalyptus22 in reply to Vinweesel2023]

I would say it was a good 12-18 months before it stopped falling out. I take 10000mcg biotin now too and I'm now adding Philip Kingsley density scalp drops. (Xmas present) so I'm constantly attending to the volume and condition. Hair has definitely improved but it's a job to keep it like that. My hairdresser has been helpful about layering treatment conditioners on it between visits.

Good luck with it.

Kate

[Vinweesel2023 in reply to Eucalyptus22]

Did you lose all of your hair?

[Eucalyptus22 in reply to Vinweesel2023]

No. It went very thin though both in amount and texture. My hairdresser says its finer and coarser than before but there is a lot more hair now than ever.

[Sushibruno]

I can relate, my hair was already thin before starting this med a month ago. I noticed even more thinning dryness and frizz👴.

[Gampo in reply to Sushibruno]

It's so reassuring to know I'm not alone, though it would be better for the rest of you if I was the only one with this problem;-/ My hair has always been thin and I had a period 15 years ago when it shed like crazy (grief and stress related). Since then I've only used natural products - or as natural as I can find - which currently involves Rahua conditioner and Rahua Control Cream which keeps my hair really soft - hopefully it will stay that way but sounds like it might not. Sounds like I need to rethink my precious highlights too - I'd rather have hair than highlights I guess!

[lankisterguy Volunteer]

Hi Gampo,

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I'm male and always had a thick head of hair, treatment with Zydelig/Idelalisib and Rituxan 10 years ago did not affect my hair. Venetoclax treatment for 6 years turned my hair snow white and then I started Calquence / Acalabrutinib this year (I'm now 75) and my hair is very thin.

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My doctor mentioned that he rarely hears that hair thinning complaint from males but has several female patients that have complained of the effect. Since that is not a medical condition that fits on the AE (Adverse Events) scale and is not classed as alopecia, webmd.com/skin-problems-and...

it is not tracked by the doctors.

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There is one published paper for hair and nail problems on Ibrutinib

see: pubmed.ncbi.nlm.nih.gov/269...

SNIP: Textural hair changes were reported in 17 patients (26%), at a median of 9 (95% CI, 6-12) months of ibrutinib treatment.

-

Len

[Jaxon101 in reply to lankisterguy]

hi Len, I have had the same issue, even Chemo did not affect my hair…but Calquence, yes indeed. It’s hard enough to have “all the other side effects” ie.,thinning skin, bruising, spots EVERYWHERE, and skin cancers, but my comb is full, and my hair shaft is super fine, ridiculously fine. SH#t!

[Vinweesel2023 in reply to Jaxon101]

Did your hair ever grow back.

[Vinweesel2023 in reply to lankisterguy]

The doctors need to start tracking this side effect. According to the oncologist that I see it was the first thing she said wouldn't happen. She plans on leaving me on Calquence/Acalabrutinib permanently.

[lotn9]

I am on this, I noticed my hair started falling, I even contacted the company who make the drug, (I can never spell it), they told me they had never heard of this, they thanked me for letting them know, but have not come up with anything that will improve the hair loss and thinning. Hope everyone gets better and their hair is restored to its former beauty.

[kimiD]

Thank you for this question and the product recommendations. My hair is SO dry on acalabrutinib. I was given ibrutinib as a frontline treatment which caused curls that I hadn't experienced before and they continue on acalabrutinib. The dryness is just since treatment but the thinning has been a problem for years. To know I may have brought the CLL on myself due to hair coloring is a depressing thought.

[theclarksark]

I had massive hair loss and my hair went suddenly limp within a month of starting Acalabrutinib. I was so worried I talked my physician into switching me to Zanubrutinib. I've had more side effects with Z than I did with A, but my hair seems to be finally growing back after 10 months. Several other people also reported improved hair volume and texture on Z. I'm also taking biotin and bone broth capsules. Acalabrutinib did a great job of beating back my CLL within four months and the Zanubrutinib has kept it under control. Good luck on your journey and let us know if you discover a miracle cure for hair loss.

[Gampo in reply to theclarksark]

Thanks to everyone for sharing their experiences. I've just been advised that I'm deficient in B2 and that could be affecting the hair loss, so I'm going to add that to the Biotin I'm already taking. The last time I suffered hair loss was due to extreme stress both mentally and emotionally, my practitioner reckons the hair loss this time could be due more to the stress my body is under from starting treatment than the treatment itself as I've got a history of hair loss under stress. However, the feedback from all of you does point to the treatment being at least part of the issue. If I find something helps I'll definitely share it.

[Jaxon101]

Hair loss! Yes indeed! Of course it’s not listed as a side affect, who’d take it! We have been scammed. Drug is a godsend, but oh the dry, thinning skin, the “spots”everywhere! Skin cancers, 3 in 2 years. I have talked to the doctor and he halved my dose. (FYI), I did this months ago. When you are 70 and complain of hair loss,the doctor suddenly becomes “hard of hearing”…in other words, they don’t care. You are on your own to figure it out.

[Vinweesel2023 in reply to Jaxon101]

What did you do about your hair. I am 71 and I hear you when they become hard of hearing. The oncologist I have I do not believe has listened to anything I have said since taking this drug last March.

[Givemestrength23]

How did you get on with your hair thinning has it got back to normal yet. On what did you finally do. I’m on ibrutinib and Ventoclax cycle 6, nine more cycles to go. My hair looks a mess

[Vinweesel2023]

It was the one thing the oncologist said wouldn't happen and yes mine is falling out by the hand full. I am worried as they tell me I will be on Acalabrutinib for the rest of my life. I started taking Biotin 5000 mcg a day to see if this would help.

[Gampo]

Hi, I’ve been on Acalabrutinib for 13 months now. The hair loss was continual, worse this autumn, but in the last month has eased up. I’m not sure if this will last or not. I ended up chopping a lot of it off in an effort to make it look acceptable and that seems to have helped overall. I’m also using scalp treatments (one from Fushi and the other from Rahua) so my scalp is in good condition and I’ve contend with Vitamin B2 and Biotin. Most of the side effects from the pills have eased but the hair loss, joint stiffness, and bloating (not too bad) have continued - the last symptom seems related to toxicity build up from the treatment as I’d never been on any medication before except the v occasional antibiotic, so I’m doing body brushing and continuing with exercise. I’m just grateful that the pills have worked to bring my CLL under control and I’ve much more energy and vitality than this time least year. Nothing is perfect and it’s certainly not nice when the side effects come in such a visible form as hair loss but overall Acalabrutnib has really improved things for me and I’m very grateful.