Hair

[Workers]

Hi I’ve read on here about people’s hair going curly which mine has but it is also falling out by the handful , has anyone else had this happen

[Newdawn Administrator]

Do you mean on Ibrutinib?

Mine has probably got very slightly finer but no sign of curls!

Sorry to hear you’ve had hair loss. Something to mention to your doctor.

Just checked your profile and I see you’re on I&V like me. Hope it’s working well apart from the hair loss which I appreciate can be very upsetting.

Newdawn

[Workers in reply to Newdawn]

Sure is working 80%affected down to 0.02%so pleased ,hope you are doing well too 😊

[Alpal11]

Yes mine is thinning quite a lot! I wrote a similar post the other day and am also on I&V. I am not allowed to take biotin but am trying to eat lots of biotin rich foods as well as using a fancy hair loss shampoo. No change yet though. It’s mainly around my temples. No extra curls though.

[Workers in reply to Alpal11]

I’ve now been on I and V for 7 months it firstly went curly now falling out albeit not in clumps ,my oncologist also says it wouldn’t make hair fall but (i am a hairdresser) I can assure him it has it comes out a lot and is very lifeless just like I have seen over the years in my trade from steroids .I know this is better than full chemo where one goes completely bald but still frustrating .☹️

[Alpal11 in reply to Workers]

That’s very similar to mine. I really started noticing it coming out more at about 8/9 months of the treatment. I’m hoping it won’t carry on at this rate as it’s starting to look pretty lifeless too. Lots of up-do’s!

[barihite in reply to Workers]

I too had hair loss on Venetoclax. Found an essential oil combination called Hair Envy by Vitality Extracts. The first time I used it was the last time I lost hair. My hairdresser said I had lots of new growth coming in, so I'm very pleased. But yes, my hair still looks dry and lifeless.

[Ginajetta]

Not getting curly but falling out! It might be imbruvica or CLL???

[dr007]

Mine got curly, kind of crazy hair. Not noticeably thinner, but then am also taking finasteride, which has a side affect of helping to prevent hair loss.

[Workers in reply to dr007]

Was the finasteride on prescription? Or did you purchase yourself ?

[dr007 in reply to Workers]

Prescription. It’s a medication for enlarged prostate. It’s also used in some cases for male hair loss. It decreases a certain type of testosterone

[Workers in reply to dr007]

Ooh don’t think I’ll be getting that !!!

[virdieblue]

My Oncologist says Ibrutiib does not make your hair fall out. I disagree. I'm taking Biotin and using an oil that has biotin and collagen to tame the frizz.

Virginia

[BeckyLUSA]

On Ibrutinib and Venetoclax. Mine thinned out quite a bit, and I did see lots of hair come out in the shower, but I never got bald spots. It did get (and has stayed) curly. I hate it! But it is better than no hair at all.

BeckyL USA

[Catnap7]

Yes Curly and thinning out for me

[bhayes84]

Yes, thinning.

[lexie]

IIs a minoxidil topical product disallowed on I & V? Also I thought biotin can interfer with blood test results and needs to be held off for a week before blood tests.

[CoBubby]

Mine has definitely changed. I did lose quite a bit, and after a while that stopped. The texture has changed. Luckily I had a lot of hair to start, so what I lost didn't leave me with thin hair. I find that I didn't get the curls, but more frizz. I can use a hairdryer to smooth it out, some. I'm only on Ibrutinib, and can take biotin. The way my nails are, I doubt it's working.

[country76]

I did lose some hair in the beginning however I take Biotin and my hair and eyelashes are getting thicker, and nails are very healthy.