Hair turned white during O&V treatment?

[TennCLL]

I've been on O&V treatment since last March. (2024) I finished up the O infusions in August last year and have been on oral V since March 2024. I've had to hold on the V dosage twice for a total of 4 weeks to adjust the dosage since my counts were getting too low. My dosage has been reduced to 200mg/day. I've noticed since this past winter my body, facial and the little bit of hair on my head that I have has been gradually turning brown/grey to white. Has anyone else had this happen to them? Also wondering since I will soon be finished with my oral V treatments, will my hair go back to its original dark brown/greyish color? I just turned 68 last month and know that age could be a factor but this came on rather quickly. Thoughts?

[SofiaDeo Administrator]

Much of my hair & eyebrows got white taking venetoclax, I got some of the color back after stopping the med. My hair also thinned a great deal. It's still growing, though not as fast. Of course, I'm also older. I am sure that factors in somewhere.

We also tend to absorb nutrients less as we age, and there are some studies indicating at least some people benefit from an increased protein intake (if not contraindicated). So maybe assess your vitamin/mineral/ protein intake, and possibly bump it up 10% or so in increments, to see if it helps.

Let your docs know/get an OK first, in case there is some reason they *don't* want you to increase something.

[lankisterguy Administrator Volunteer]

Hi TennCLL,

I had the same experience in 2016 when I started Venetoclax, my hair went from dark grey salt & peper to silvery white in <6 months (I was 68 years old at that point). One guy I know from the CLL Society had the same experience, but numerous others did not.

I found some mentions that some of the animals tested with Venetoclax exhibited a fur change to white around the injection site, and others turned completely white.

Len

[AussieNeil Partner Administrator]

Hair loss isn't that common or as marked with chemoimmunotherapy treatments (such as BR, FCR) for CLL as it is for other cancer treatments. Some of our members still report temporary hair loss with the newer, targeted therapies, but I think it is less common. Many on ibrutinib report changes in their hair curliness, with it usual significantly increasing. That doesn't seem to happen with the later generation 'brutinibs', or is way less common.

Not long after I began treatment with acalabrutinib, obinutuzumab and venetoclax, I noticed some of my body hair turning grey, along with an increase in the greying and thinning of my head hair. Naturally I attributed it to the treatment drugs. Then I was surprised that during treatment the amount of grey didn't increase. Checking earlier photographs, I found that my body hair had been going grey prior to starting treatment. My body hair recommenced greying recently, over 5 years after starting treatment.

Prior to treatment my haemoglobin had dropped to around 100, dropping further to just under 80 early in treatment. About halfway through treatment, my red blood cell count fully recovered but my haemoglobin only partially improved. When I raised my partial haemoglobin recovery with my CLL specialist, he recommended an iron infusion, suggesting that CLL related inflammation might be responsible for poor iron absorption. That iron infusion restored my haemoglobin to the best it had been in 15 years, a few years prior to my diagnosis. Low iron levels have been linked with going grey much earlier in life than when we typically have treatment for CLL, so I wonder whether going grey during targeted therapy treatments is more a reflection of our general health, rather than directly attributable to treatment. Low iron can, however cause hair thinning and I wonder whether that might be more of a factor in hair loss with targeted treatment treatments.

You may be aware of the use of cooling caps during chemotherapy to manage hair loss. They work by slowing the metabolism in hair follicles, restricting the impact of the chemotherapy on hair growth cancer.org/cancer/managing-... I don't think that they would be useful for targeted immunotherapy CLL infusion treatments (rituximab, obinutuzumab, ofatumumab) , because these have a half life of several weeks rather than hours.

Neil

[DriedSeaweed]

There might be something to this. In the past year since I stopped venetoclax I have noticed quite a lot of white/grey hair mixed in. I’m 38 so it seems a little early. But, maybe it is natural…