Member
Posted 10 May 2014 - 08:55 PM
My hair has become curly, wavy. I'm 67. Gleevec? Menopause? Just wondering because it's the weirdest thing.
I am celebrating 4 years PCRU. I have adapted to being on Gleevec with some times of whining to myself. My complaints are really minor, considering.Puffy eyes but curly hair as a payoff? It works for me, ha, ha.
Carol
Advanced Member
Posted 10 May 2014 - 10:48 PM
Definitely Gleevec. It interferes with the hair follicles (probably c-Kit inhibition). The hair can be curlier, have more or less color, be more or less dense, etc. Tasigna tends to thin the hair, but Gleevec can have some pretty wild effects on the hair.
Member
Posted 11 May 2014 - 02:35 PM
Thanks for the answer. Thought I was a little nuts. I'm not talking about a little curl. It is vastly different from how my hair has been my whole life.
Thanks again!
Advanced Member
Posted 12 May 2014 - 12:25 PM
Trey, I was wondering...You say thin hair on Tasigna do you know if that ever changes? or will it always be that way because its a side affect? I am struggling deeply with this side affect. I have been on a reduced dose for 3 weeks now hoping that would help, but sadly no change. I feel like it may be time to cut it "boy short" originally my doctor wanted to switch me to sprycel, but tasigna is working so well except for this almost bald issue....uuuhhhgggg. was probably a bad time to stop taking my welbutrin, its hitting me so much harder then I ever imagined! any advice is extremely appreciated
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
Advanced Member
Posted 12 May 2014 - 06:11 PM
HI: I have been on Gleevec for 13 years, and at first I got a real tight curl on the right side of my head. I have always had perfectly straight hair. Now it seems to have gotten more wavy on that side, but the left side is straight. I have to play with it sometimes when I am blow drying it so I can style it right. I still get the puffy eyes everyday, and that annoys me. I just have to look at how far I've come, and live with it.
Glad you are doing good on the Gleevec. I still deal with some side effects after all this time, but I would not want to switch drugs.
Susan
Advanced Member
Posted 12 May 2014 - 06:40 PM
FG,
Hard to predict. Sometimes the side effects lessen or go away, other times not. The hair thing is often a stubborn one which can take a long time before the body adjusts.
New Member
Posted 12 May 2014 - 06:46 PM
Hi frogiegirl,
Not sure if I'm much help but it took 5 months after coming off Gleevec, before the fluid retention side effect disappeared for me. I had thought all side effects would disappear straight away, so perhaps with time your hair issue will improve.
Member
Posted 13 May 2014 - 11:10 AM
Thanks for the input. Yes, I have tight waves on the top and waves all over and some curls. Wild! So it might revert? This journey has been interesting, I must say! I also now have some weird skin thing called granuloma annarulae which causes me to have spots. I get steroid injections sometimes but still have spots. Not supposed to be related to Gleevec, but who knows. I may have misspelled it.
Still very grateful to be ok!
I haven't read the board for awhile. It sounds like patients are starting on other things besides Gleevec these days, but there are side effects, just different? I can cope with the GI symptoms pretty well, now. Still have some muscle cramps in one foot, and eye swelling. I had some pretty severe facial swelling and throat swelling episodes that were related to my BP med, Lisinopril. Since I m off that, no more swelling. I'm a happy camper these days. Glad for Gleevec.
It is interesting to read what others who are new to CML are writing. I remember feeling like I had no compass for a while, but it's better now.
Thanks for the feedback.
Guest__*
Posted 13 May 2014 - 11:22 AM
Hi, I have been on Gleevec since March 6, 2014, and I did not like the periorbital edema, I bought THE INCLINED MATTRESS TOPPER from Hammacher Schlemmer. The mattress topper starts level with the foot of the bed and inclines subtly, raising sleeper's upper body to reduce acid reflux and allow gravity to gently drain sinus passages. It's very comfortable, I love it. I do not have so much periorbital edema, but my face looks a little swollen.
ACG
New Member
Posted 14 May 2014 - 10:44 AM
Hey Frogiegirl,
I'm have been on tasigna now for two years and my hair, which is naturally fine, is the best its ever been so says my stylist. It's full and thick and grows like a weed. So, there is hope. Don't give up and shave it off yet. Have you tried taking some hair growth vitamins and such from pravana? And nioxin is another great line to check out. Ask your stylist. Hang in there! TracyD
Advanced Member
Posted 15 May 2014 - 08:48 AM
Thanks so much for all your replies.....sorry for hijacking this post with my question?? TD1961 Did you shed or thin at all in the beginning or for you was it just an increase in thickness ? Mine literally ejects itself from the root. always a little ball on the end(sorry if that's TMI). I am struggling with exchanging one side affect for another if I were to switch TKI's? in all truthfulness this is probably a small price to pay to the TKI Gods to be able to live Its just a hard one for me personally. This diagnosis is a hard one because it keeps you on the edge of appearing "normal", Yet dealing with all the side affects and not quite being normal. Thanks for your advice
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
New Member
Posted 15 May 2014 - 11:26 AM
Frogiegirl, There was a gradual thinning in the beginning which for me, was back in September of 2004. I've been at this 10 years now. I was on 800 mg / d of gleevec! So, talk about side effects! Big time! Cramps, sharts, gerd, rash, fatigue, etc., you name it, I had it. Don't give up! It's like the weather, stick around long enough and it will change to something else. Maybe something better, maybe something worse! Good luck! TracyD
New Member
Posted 16 May 2014 - 10:18 PM
I definitely noticed some changed to my hair while on Gleevec. During the 18 months I took it, my hair was incredibly dry and frizzy, without the slightest bit of shine to it. I even tried using high-end women's shampoos at one point, just to see if it had any effect. It didn't, other than making me smell like tropical fruit. Not long after stopping the drug, it returned to normal.
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