Hello Everyone, I was diagnosed with CML on 9/15/11 and started taking Tasigna on 10/13. I have started itching so terribly that it brings me to tears. The rash that has appeared on my neck and face is bothersome but I can control the urge to scratch or touch it. The worst is my head/scalp area. I want to rip the hair from my head. Does this go away? I have shoulder length hair. Will a hair cut relieve or alleviate some of the pain and itching?
Side effects from Tasigna
Started by
SamIam1403989261
, Oct 19 2011 09:52 AM
10 replies to this topic
#2
grannyd
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Posted 19 October 2011 - 10:45 AM
Hi Samantha, glad you found this board where everyone is friends!!!!!!! I have been taking tasigna since Feb. 1st. of this year. I do have the rash in my head but not to the point where it bothers me. There have been discissions about the itching & rash on this board & I am sure there will be so many people here to give you help & ideas to elevate the itch & rash!!! Tasigna has been great for me---even the eating & fasting periods are not a problem--although when I first started taking it I thought of food at the worst times. Now I have a schedule & it works great! Hope to hear more from you as you get used to LIVING with CML!!! Hope you some relief soon!!! Prayers, granny d
#3
Taylor
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Posted 19 October 2011 - 11:26 AM
Hi Samantha,
Welcome I've been on Tasigna since February 8th and I never developed a rash, although I have problems with my scalp that includes an occasional itch. Yours will probably go away on its own, but if it's really bad I think you could use some hydrocoristone cream, and even Benadryl should help.
Taylor
#4
Trey
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Posted 19 October 2011 - 11:45 AM
Skin problems are definitely a problem with TKI drugs, and Tasigna seems to be the worst.
Besides the responses you will receive, you can search for "Tasigna itch" and find a number of previous postings such as this one:
http://community.lls.org/message/73833
http://community.lls.org/message/43490
#5
lala
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Posted 19 October 2011 - 01:55 PM
Hi.....I was just talking about this to my friend this morning.....there are 2 of us in one school with cml! she is on Tasigna and after spending millions of dollars on lotions and potions, she said the T-cell shampoo helped her scalp more than the others. She also said it took awhile for things to settle down.......hope this helps! She regrets all her trips to the dermatologist!!!!!!
#6
Guest_billronm_*
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Posted 21 October 2011 - 12:15 AM
Dear Samantha,
I feel so bad that 1st you have cml 2nd you have such a problem with the rash. If you have shoulderlength or long hair getting it cut won't help to my knowledge. I had long hair all my life and after my dx I got it cut short and stopped coloring it. It turned pure white because Gleevac takes the color out of your hair. I just didn't feel like me with short white hair. Dealing with cml is bad enough but I thought by cutting my hair and not coloring it would be less chemicals going into my body. I was miserable. Then after 3 years I thought you dummy you already have cancer so I let my hair grow back last year and I color it light blond and I feel much better it's not about vanity but feeling better about yourself. When you look better you feel better. So just because we have cml doesn't mean we have to look like it. So let your hair grow and put your lipstick on everyday.
Sincerly Billie I'm so glad you found us there is a way to control the itching and rash.We all react to the meds differently so try to be patient one of us has dealt with the same problem. Or call your onc. Benadryl seems to be the best but itching like yours I haven't had to deal with much I use cortisone cream.
#7
CMLMN
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Posted 23 October 2011 - 12:21 AM
are you on 600mg or 800mg Tasigna?
I was initially put on 800mg and my rash was horrible; I switched to 600mg this summer and it is much better now although I still take benedryl at night and claritin in the morning.
Many people reported that rash/itching goes away for them after some period of time like 1 or 2 months; this didn't happen to me .
#8
cbrooks31
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Posted 23 October 2011 - 06:19 PM
Hi samantha,
I have been dealing with cml for almost nine years now, and I have only just found this discussion forum. Thank goodness, it felt like I was the only one in the world with this disease. I -am currently taking 600mg of tasigna (I can't switch to ANYTHING else, so I have to use it), and I have experienced the dry skin, not on my scalp,but the entire bottom half of my face is a scab. It didn't really get this bad until the weather started to cool off a bit (I live in Michigan). I know that Everything interacts with the tasigna, so the docs are quick to say no, but I have dound the only thing that works for me is a steroid cream, and I take benadryl nightly. A haircut will not help, in fact, my hair has started to come out in clumps (the side effects are different for everyone, that DOES NOT mean it will happen to you). All you can do is treat your scalp. I know that the last time I had chemo and all my hair fell out, the shampoo NIOXIN is good to rid your scalp of chemicals and help it grow back, I am considering getting some more at the salon, although it is pricey (around 15$ a bottle, but well worth it for some people). I hope one of these suggestions help. - Christi, 31
#9
Pin
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Posted 24 October 2011 - 06:34 AM
Welcome to the board Christi, wow - it sounds like you have been through a lot! I lost a lot of my eyelashes early in in treatment, but so far not too much hair, which is lucky. I'm on Gleevec though.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#10
Pin
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Posted 24 October 2011 - 06:40 AM
Hi Samantha - welcome 
I'm so sorry that you're experiencing this nasty side effect, there are not too many things worse than being itchy, I really hope it gets better for you soon.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#11
jarrettjw
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Posted 29 December 2011 - 01:05 AM
I agree its so good to have other people to bouce stuff off of. I was on gleevec since i was diagnosed in 2008. I just recently switched to tasigna(two weeks) had some nausea and headaches at first but now its just this scalp itch. it sounds like claritin will help or benadryl. My only worry is drug interaction. Has anyone asked their oncologist about allergy meds. I am sure that answer is yes as I will be talking to mine asap but never hurts to ask. Thanks for any info anyone can provide!
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