Hair loss on Venetoclax : Hair thinning on... - CLL Support

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Hair loss on Venetoclax

MICHPR profile image
12 Replies

Hair thinning on Venetoclax- have been on it for over 12 mths-still an issue coming out in clumps after washing and brushing it. Anyone else experienced similar problem?

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MICHPR
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12 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi MICHPR,

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I was on Venetoclax for 6 years and during that time my hair turned white and got very fine texture and thin coverage. (I still have hair over my entire head, but it is very thin at the rear crown). I stopped Venetoclax one month ago and would love for the color and coverage to improve, but I doubt it will.

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I recall seeing that test animals had some fur color changes to white, so the white hair was consistent.

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You can see several past postings on this subject if you look for the box on this page labeled: Related Posts

*Hair loss with Venetoclax. healthunlocked.com/cllsuppo....

*Hair Loss with Venclexta/Venetoclax? healthunlocked.com/cllsuppo...

*Venetoclax? Ultra V? Hair Loss and Loss of Taste healthunlocked.com/cllsuppo...

*Venetoclax causing hair shedding healthunlocked.com/cllsuppo...

*Venetoclax and weight loss early healthunlocked.com/cllsuppo...

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Len

MICHPR profile image
MICHPR in reply to lankisterguy

Thank you Len I will check out the links you have given. You never know with the hair- they say it takes 6 mths to see an improvement with hair cells to regenerate significantly 🤞

Edhair97 profile image
Edhair97

Yes!!I posted about this a few weeks ago. Like you, mine comes out after washing and combing out.

I cut off my hair, added Nutrafol & Viviscal( hair supplements). I also added an iron supplement ((Mega Food Blood Builder- it’s a vegan iron supplement ) a few times per week.

Also, try really hard to get adequate protein in daily.

All ok with with my Dr.

Shedding seems to be a bit better, but still happening.

I think the O infusion aggravates the shedding. Thankfully, I’m on O 1x/ month now

Hair loss is so aggravating and messy too.

Hopefully, yours will resolve.

Sallie

MICHPR profile image
MICHPR in reply to Edhair97

Thank you for your helpful tips Sallie. I will have a go with the supplements you tried and keep.my fingers crossed. I have just started adding pea protein powder and spirulina as I eat a vegan diet. Tho Valter Longo recommends low protein for cancer but I think vegan protein is safe. All the best to you❤

Edhair97 profile image
Edhair97 in reply to MICHPR

Do you follow Dr. Longo??Do you follow the Longevity Diet?

I did Prolon a couple of times.( when it was on sale).

I see now that Prolon has a 1 day reset kit.

Is Dr. Longo referring to solid tumor cancers when he suggests low protein or blood cancers?

I know adequate protein ( not excessive) is important for older adults like me.

Sallie

MICHPR profile image
MICHPR in reply to Edhair97

I do follow Valter Longo- bought his book a few yrs ago. I have been tempted to try Prolon but have not as yet. I think from what he says that low protein also applies to blood cancers. Appreciate all of your help Sallie. Let me know if you do.the follow up Prolon. I going to start doing Cronometer daily to track my protein levels. Kind regards. Michelle

SofiaDeo profile image
SofiaDeo in reply to MICHPR

I would think a complete protein like quinoa would be better since it has all the essential amino acids; pea protein doesn't. You would need to add a nut like Brazil or sesame to a meal containing mostly pea protein to make up the deficiency and be able to make body proteins. Frances Moore Lappés' book "Diet for a Small Planet" has the protein complement charts plus some recipes. I also use her "Recipes for a Small Planet". Nutrition charts for single plant items can be very misleading because of this, one can't just count plant protein grams the way one can for eggs and meat.

hsph.harvard.edu/nutritions...

MICHPR profile image
MICHPR in reply to SofiaDeo

Thank you for your help Sofia. I do have quinoa but not regularly. A good idea as it is a complete protein.. Maybe a combined protein powder would also work? I will check out the book. I know it came out many years ago and she said you need to combine foods to get a complete protein. I have not actually read the book myself tho.

julieS3 profile image
julieS3

I’m on ibrutinib but had the “O” infusion. After the infusion was done my hair stopped thinning. It did take about 6 months to totally stop and get start getting thicker again. The doctor did tell me the “O” will cause hair thinning. During the thinning time I did change my hair washing to every other day and used pure aloe rubbed into scalp. Keeping scalp stimulated will help by simply massaging during the day. That seemed to slow it down.

MICHPR profile image
MICHPR in reply to julieS3

That is very interesting. I dread to touch my hair and put off washing it due to the hair loss. Very stressful and a mystery as to why it affects some and not others🤔Maybe I should be brave to try massaging the scalp.

soapstone profile image
soapstone

I was on V for 2 years and had no hair problem - I have been off now for 3 years and labs are very good

MICHPR profile image
MICHPR in reply to soapstone

I wonder why it causes hair loss in some and not others? I called the company and they said it shouldn't be causing it either. Thanks for your reply. Great you are doing well 😊

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