I think I am now having hair loss from Tasigna, after a couple of months on it. I'm fine with the loss I'm experiencing as long as it doesn't get worse, but am curious if people who experience hair loss (especially women with naturally thicker hair), did you experience actual patches or just an overall noticeable thinning of your hair? When on Sprycel, at first, I had hair loss in the form of overall thinning for a good six months and then my body adjusted and my hair went back to normal. I'm hoping that's what's going on with Tasigna. My hair is a lot finer, though, and I actually like that! I have naturally courser hair and like it being a little silkier. 
Tasigna Hair Loss or Hair Thinning?
Started by
MCPO
, Jan 07 2015 10:28 AM
9 replies to this topic
#1
MCPO
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Posted 07 January 2015 - 10:28 AM
#2
JPD
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Posted 07 January 2015 - 03:33 PM
Thats a pretty frequent side effect. It actually a type of rash, so says my onc, but havent heard of any treatment for it. I havent heard of anyone losing patches of hair just thinning. Mine has mostly manifested on my legs and stomach, but doesnt seem to be getting worse. Been on Tasigna since 11/2013
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#3
MCPO
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Posted 07 January 2015 - 05:41 PM
My scalp burns/hurts, so a rash doesn't sound so far off. It hurts more if my hair is parted the opposite way than normal and my scalp is being pulled. Interesting....I don't think I had scalp pain when I had hair loss on sprycel, but I do remember having a dry scalp with Sprycel which accompanied the hair thinning. This time, no dryness that I can see...but mild burning, not possibly related to sun exposure, as I have been staying inside to keep warm!
#4
rcase13
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Posted 07 January 2015 - 06:09 PM
Yep been on Tasigna for three months. Hair/scalp has been on fire since I started!
That just means it's working!! I was already losing my hair so can't say if the increased thinning is due to Tasigna or poor genetics...
That just means it's working!! I was already losing my hair so can't say if the increased thinning is due to Tasigna or poor genetics...
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#5
JPD
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Posted 07 January 2015 - 07:13 PM
And as Ive said here before, my unfortunate genetics led my hair to start falling out at the tender young age of 20, and my head is shaved now... but Ive noticed no burning of the scalp. These drugs are miraculous, but they sure suck sometimes.
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#6
Damerault
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Posted 07 January 2015 - 08:50 PM
I am on 300 mg of Tasigna daily. I also experienced an itchy, burning scalp and hair thinning. The itchiness did not last too long and the thinning is improving. Hang in there, there is hope.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#7
Billie Murawski
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Posted 07 January 2015 - 10:41 PM
Hi mc,
I had thick hair post dx. It has really thinned out, I take 1000mg of b12 a day and I do think it helps. Billie
#8
Billie Murawski
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Posted 07 January 2015 - 10:45 PM
My scalp burns/hurts, so a rash doesn't sound so far off. It hurts more if my hair is parted the opposite way than normal and my scalp is being pulled. Interesting....I don't think I had scalp pain when I had hair loss on sprycel, but I do remember having a dry scalp with Sprycel which accompanied the hair thinning. This time, no dryness that I can see...but mild burning, not possibly related to sun exposure, as I have been staying inside to keep warm!
I have to ask why is your scalp being pulled? Billie
#9
Frogiegirl
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Posted 08 January 2015 - 08:23 AM
Yep, had to cut off 28" of my hair when I first was diagnosed 
I decided I was losing to much and watching the strands fall out was too hard on me emotionally. ( I was known at work as "the tall skinny girl with the really long hair") Now I do not even want to know how they refer to me LOL! Its still thinning after 13 months on tasigna. I am however using rogain 5%for the last two and a half months, haven't noticed anything yet.....fingers crossed. I'm going to stick it out because I have been told it can take up to a year to see any kind of results. for now when I feel insecure(I work in the public) I wear my little cute chemo caps in various colors. I do miss my hair, but I wouldn't trade it for the time I feel like I've been given to spend with my two little's 
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.
#10
MCPO
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Posted 08 January 2015 - 09:03 AM
Billie, I have had the same side part for my entire life, but when I am due to have my roots highlighted or am just having an awful hair day, sometimes I switch the part. But, my hair is so used to parting a certain way, just changing the part side, pulls on my scalp a tiny bit. Not sure if that makes sense. Sometimes, putting it in a pony tail or top bun, takes the weight off my scalp when it's especially hurting.
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