Hi All, I am new to the group. I take Tasigna 600mg/day and a low grade aspirin everyday for the last 2 years. After about 3-4 months my hair started falling out and while that has stopped now thankfully the hair I now have is so dry and brittle it hardly gets wet in the shower. I am so grateful to be healthy and feeling good but I am so miserable about the way I look. My oncologist “acts” like it’s not from the medication or that he has never had anyone complain about this. Has anyone else experienced this and if you have how did you deal?
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All Bad Hair Days
Yes, I have experienced this but have not found a solution yet. My hair, before taking Tasigna, was long, thick and shiny. Now it is thin and dull. I, like you, am grateful to be alive but would sure love to hear suggestions on how to help with the change in hair. Side note, I take 400 mg Tasigna daily since November 2021.
Hopefully someone else will chime in with some suggestions.
Yup I’m in the same boat. My hair is falling out and thinning after 3 months of Tasigna. I look 10 years older and the drug is not really hitting out of the park for me either so it’s all for naught. My doc wants to move me to Scemblix a new drug with new side effects… it’s turning out to be a crummy summer. Glad to hear that your hair is not falling out anymore. Hang in there that’s all we can do.
Tasigna wasn’t working for me either at first but I did 2 back to back platelet pheresis that really helped to lower my counts and then the tasigna started to work. The beginning is the hardest part. Your body (and mind) have so much to deal with, who can blame it for freaking out. You should know that sooo many of my side effects are either gone or much better. Hang in there!
Thanks Greenbet that’s really encouraging and makes me feel hopeful. My insurance company denied the request for the new drug. Who could blame then it’s so new it’s not on my formulary yet and it costs more than a years salary. What dose are you on with Nilotinib? I’m at the max and it’s killing me. I want to drop to a lower dose but will wait. Right now I go 4 days at 800 than a day at 600. Once or twice a month I drop to 400 for a day. I just gotta get on with life and stop obsessing. You think I would be good at that after 11 years… I need a good diversion. Work helps, maybe a vacation is in order. Thanks again.
A vacation ALWAYS helps. I take 600mg and an aspirin everyday. It was 800mg when I was first diagnosed but I have been at this amount for almost 2 years and my doctor has basically told me I will probably never take less. After all this time so many of the other side effects that my body couldn’t handle are either lesser or gone completely. I’m praying that happens with my hair too. This heat definitely isn’t helping how it looks. Watch a funny movie, laughter is the best medicine.
Hello everyone, I was diagnosed in May of 2020 and I have felt so alone. Only finding one other person that would even respond d to me when I had questions. My hair started falling out about a year after taking three different Cml meds. The first two caused blood pressure spikes and a mini stroke. I am currently taking 600mg of Tasigna. My hair is growing back but a completely different texture. It is thicker than before but very dry and brittle. I learning to accept my hair loss, the tiredness, bone aches. The thing that is hard is my cognitive ability. I seem to have times I just zone out my family says it lasts maybe 10-20 minutes and my speech slurs, my motor skills are slow or difficult. I have told my oncologist and seen a neurologist no one knows what it is? Anyone experiencing anything similar?
p.s. I am so grateful for discovering this site