Hair loss

[581959]

Hi everyone

Has anyone lost hair with ventaclax

[BeckyLUSA]

Losing a fair amount of hair, but no bald spots yet. Since I am on Ibrutinib and Venetoclax, don’t know for sure which one is the culprit!

BeckyL USA

[jtaeross in reply to BeckyLUSA]

Yes. My hair was great with ibrutinib and now balding with venetoclax

[Leewood in reply to jtaeross]

I have same problem v stressful

[Leewood in reply to jtaeross]

This is awful I won't have chemo but it seems other drugs just as bad

[MICHPR in reply to Leewood]

Hi, I am just wondering how your hair is now and if you are still on Venetoclax? I have been having lots of hair loss as well. Thanks❤️

[Mcpill]

I was on Imbruvicat for 2 + years, and have now been on Venclexta for 6 months. No hair loss, but I now have wavy hair.

[lankisterguy Volunteer]

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[Scribe67]

I have AML and have been on Venclexta with Vidaza for 4 months and recently have had significant hair loss that I never had on Vidaza taken alone for two years.

[Downriver555 in reply to Scribe67]

How is your hair now? How much ended up falling out and for how long?

[Downriver555]

I also am on veneteclax and significant amount of hair falling out after 6 months treatment.

[581959]

Thank you for post, my hair is to my shoulders and has thinned out a lot !

[texigal]

I have been wondering about my hair thinning in spots!. I’m on venetoclax. Interesting to hear of others’ similar experience

[81ue]

I had fall out from fludarabine which failed. Hair came back thicker and grew back wavy while on imbruvica 17 months, now I'm on venetoclax 6 months and all is going well, I'll watch the hair now to see if anything changes.

[81ue in reply to 81ue]

Since this thread is back up top, my update is that I went on Venetoclax Apr. 2019 and rituxan ( after initial usual treatment I had additional every other month rituxan boosters thru Apr. 2021). I'm only on V right now at 200mg per day reduced dose for the majority of the entire two years V time. My hair is thick and long (no haircuts due to covid out there) and oddly it's been curly, where previously my entire life I had straight hair. I don't have enough growth to know yet if the rituxan was the cause of the curls or if it is the V.

[t2aa]

This is interesting! I noticed more hair in the shower and on my brush than usual, but I did not connect it to the Venetoclax I have been on for 3 months. Since this post, I realized that I have hair coming out every time I touch my head and I am constantly picking strands off my cloths and finding it all over the floor!

I have long curly hair, so it it doesn’t look like it is thinning, however, it is definitely falling out at a higher rate than normal.

It will be interesting to see if this pattern continues or gets worse. If it does, it will be soon noticeable to others as well!

The good news is that this treatment is doing great in terms of kicking CLL in the teeth and it is time limited to another 9 months. So any hair loss is such a small thing compared to feeling so much better!

[Leewood in reply to t2aa]

Everyone notice how thin my hair is looks like it has to b cut off to save tears as it all goes

[Smac29]

Hi,

I know this is old post but I have been noticing my hair coming out during my showers and have seen more on my hair brush lately. I think I may have noticed it about 3 weeks ago while on Obinutuzumab. I started Venetoclax 2 weeks ago and it is continuing. Nothing drastic just wanting to know if anyone else has had any hair loss?

Thank you!

Sheryl

[sllincolorado in reply to Smac29]

I am on venetoclax as part of Ultra V trial. Hair is definitely thinning. I am going to start a new thread to ask people if it eventually stopped falling out. Also going to contact the pharm company since I do not think it is listed as a side effect. Also having some skin issues which may or may not be related. Going to dermatologist tomorrow.

[DRM18 in reply to sllincolorado]

What skin issues, if you don’t mind me asking?

[sllincolorado in reply to DRM18]

At first it was peeling skin on my eyelids, near my mouth and on my ear lobes (!). No pain, no soreness, no inflammation, no bumps. Most of that stopped after a few weeks except near my mouth. I also noticed on dryish flat spot on my hand. Have had it about a month. Slightly red and slightly raised but not much else. PA thought it could be pre-cancerous so I made an appointment with dermatologist. Actually when I fist noticed it it looked like a small burn. Then a few days ago I noticed another one on my leg and one on my arm.

[country76 in reply to sllincolorado]

My hair broke off with Ibrutinib. Grew back thicker and curlier on Alacabrutinib. Could have been compounded by hypothyroidism and hyperthyroidism when they were adjusting my meds. I am hoping to change to the V next year after Covid under control and vaccines. I would hate to lose my hair again, it is healthy right now however I think the curl is growing out. Although I shouldn't complain my Cll is under control.

[Leewood in reply to sllincolorado]

Get answers we deserve

[Nat53 in reply to sllincolorado]

How is your hair thinning? Did it stop?

[sllincolorado in reply to Nat53]

Not sure who this was addressed to but yes my hair thinning stopped and it is all growing back. Still in venetoclax and clinical trial drugs.

[pawgla in reply to sllincolorado]

How long did it take to stop thinning?

[pawgla in reply to sllincolorado]

Has your hair stopped thinning? I contacted the Venclexta maker and they said hair thinning was a surprise to them.

[sllincolorado in reply to pawgla]

Yes, my hair stopped thinning and it has grown back. This was over many months. I am still taking venetoclax.

When you started venetoclax we’re you also given any infusions like obinutuzimab/gazyva?

[pawgla in reply to sllincolorado]

I have AML, so I had/have Venclexta and Azacitidine. I have been taking both since February but the hair thinning didn't start until late April. It got progressively worse this summer. How many months were you thinning before it stopped?

[sllincolorado in reply to pawgla]

My best recollection is 4 -5 months of hair loss (not huge bald patches, it thinned all over, the house was strewn with my long hair), then it gradually diminished and eventually started growing back in. Even though for me the timing made it seem like the cause was the venetoclax it could have been a delayed reaction to infusions I had months earlier or maybe a combo of the meds.

Looks like Azacitidine is known to cause hair loss so maybe that is the issue???

From Macmillan UK site:

Your hair may get thinner. But you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary, and your hair will usually grow back after treatment finishes. Your nurse can talk to you about ways to cope with hair loss.

It sounds like this should be a temporary situation for you too. While it was thinning I brushed it less frequently and minimized shampooing. I only pulled it back when I was cooking to keep it out of the food but otherwise tried to leave it alone as much as possible.

[pawgla in reply to pawgla]

Reporting that my hair thinning has really slowed down after about eight months. Still taking Venclexta and Azacitidine. One thing I do want to mention is that my doctor suggested taking Turmeric with Curcumin since it is a known cancer fighting supplement. Literally within a week of starting it is when my hair stopped falling out. Because of this I also started using Turmeric shampoo. Not sure if this helped or just a coincidence.

[MICHPR in reply to pawgla]

Which turmeric supplement did you take?

[Leewood in reply to Smac29]

Losing loads of hair on venteclax wondering if I'm going to go bald ?

[Nat53 in reply to Leewood]

Still falling out?

[Leewood]

I am on ventaclax and my hair loss is v stressful I'm not on any other drug so it's definitely venetaclax why is it not on side affect sheet

[Smac29 in reply to Leewood]

Hi Leewood,

I’ve been on Venetoclax for over 6 months. My hair loss has definitely slowed down. I mostly notice it in the shower. How long have you been on V?

[Leewood in reply to Smac29]

Glad to hear it's slowed down been on venetaclax 2mths

[Smac29 in reply to Leewood]

Hopefully it will stop soon!

[t2aa in reply to Leewood]

I lost hair on Venetoclax also. The physician assistant told me she hears this complaint a lot, while the doc brushed it off and said he had not heard that and it wasn’t on the side effects list. I am now 6 months after stopping Venetoclax and just now feel like it is getting better. One thing that happens with CLL and Venetoclax is that your iron is likely down. My was WAY Down. It is better now as I take iron every day now. My dermatologist thinks that the low iron is the real reason for the hair loss .

[Leewood]

Yes devastated hair is a mess

[DanBro1]

My hair began "thinning" after 3 months on Venclexta. Hope it will return when I complete my regimen March 1st 2022..........