Just curious if anyone else is having this issue and what they did for relief? I had it when I started Sprycel a year ago, but I have been switched to Tasigna now due to a large pulmonary effusion. I have been on Tasigna two weeks now with unbearable scalp pain. I am going to call my oncologists office tomorrow to see if they have any recommendations to help with the pain. Until then just thought I'd ask for suggestions.
Scalp pain from TKI?
Started by
JMK67
, May 21 2017 07:06 PM
16 replies to this topic
#2
tiredblood
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Posted 21 May 2017 - 09:35 PM
Like most other side effects, I just endured the scalp pain and burning. It finally subsided. Sorry to hear you're experiencing this.
#3
jmoorhou
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Posted 21 May 2017 - 10:58 PM
That happened to me too, I use teatree shampoo and it really helps. I had this unbelievable itchy scalp...terrible but this shampoo really helps!
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#4
cmljax
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Posted 22 May 2017 - 02:29 PM
I had scalp itching the first couple of months on Tasigna due to folliculitis, but it went away on it's own. I did not have scalp pain - that's sounds more serious (itching is almost never serious) and you are right to report it to your oncologist. Hope it resolve for you - good luck
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#5
Cathy
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Posted 23 May 2017 - 08:31 AM
Hi, I feel for you. I was on Tasigna a very short time but the scalp pain, I called it on fire. I could feel every hair follicle. I got Pancreatis so had to go off after just 5 pills. I do not think I could of put up with that scalp pain. One thing that made mine feel better was a cool damp wash cloth on my head. I would have one on my head most of the night after work its seemed to calm it. Otherwise I couldn't hardly tolerate it.
I just wanted to pass along my small tip! Try it.
best of luck!
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#6
JMK67
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Posted 23 May 2017 - 09:25 PM
Thank you for the replies. I saw my oncologist yesterday and he said I should have called him sooner, he thought this was a rare side effect as he has never seen this with Tasigna. He advised me to stop Tasigna immediately and give my body a couple of weeks to recover. Doctor is now changing my medication again, to Gleevec. I was an emotional wreck as this is now the third TKI that I will be taking and concerned about my limited optiions. My doctor advised that at this time we are still ok, since my response to Sprycel was so good with bringing my numbers down so quickly. I appreciate having somewhere to vent as everyone else in this forum understands the terrible side effects that go along with the treatment. My family is supportive, but they just don't understand the pain I'm enduring. I don't look sick so they think everything must be ok. Again thank you for the responses and suggestions, I do appreciate them.
Now if someone can tell me how to add my information in the signature field, I will be happy to share my DX and response to treatment.
Now if someone can tell me how to add my information in the signature field, I will be happy to share my DX and response to treatment.
#7
Buzzm1
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Posted 23 May 2017 - 09:59 PM
Now if someone can tell me how to add my information in the signature field, I will be happy to share my DX and response to treatment.
click on this link Share your CML history
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#8
jmoorhou
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Posted 24 May 2017 - 09:50 PM
Did he figure out what it was...maybe you should see another Onc and not switch. These kinds of things can happen and they go away and don't come back.....usually......
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#9
tiredblood
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Posted 25 May 2017 - 06:50 AM
It has been my experience too that these weird side effects often pass, or at least come and go. I'd give it a couple of weeks to see if the problem resolved. The worst of my scalp pain felt like someone took a hot iron to my scalp. Thankfully, it resolved fairly quickly.
#10
MarCap73
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Posted 30 May 2017 - 09:40 AM
I had scalp itching as well when I first started Sprycel (Nov. 15). As previously posted, tea tree oil shampoo helped. I also saw a dermatologist and was given a topical cortisone steroid to rub into my scalp when it was really bad.
Dx: 11/2015
Sprycel: 100mg
May-17: 0.0095% IS
Aug-17: 0.0048% IS
Nov-17: 0.0066% IS
#11
carrie
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Posted 06 August 2017 - 12:55 PM
9 days on Tasigna. My scalp has been itching and I have been scratching it. When I went to brush my hair this morning it really hurt my scalp. I probably need to scratch less or not as hard. Yes, it does hurt. 10 years on Gleevec and no scalp pain.
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
#12
gerry
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Posted 06 August 2017 - 04:52 PM
Carrie - a number of others have recommended tea tree oil shampoo to help with that side effect.
#13
cmljax
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Posted 07 August 2017 - 07:02 AM
Could likely be folliculitis - I had it pretty bad when I first started on Tasigna, then it went away. Currently I have only 2 - 3 spots at a time - quite bearable. Your dermatologist could also give you an rx called erythromycin topical solution 2% which helps.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#14
carrie
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Posted 08 August 2017 - 07:45 PM
Thanks for the tips.
Diagnosed 2007
On Gleevec for 10 years
Results from 2007-2012 not shown below
International Scale from 2012 until now
Never went to 0
0.166
0.038
1.155
0.789
0.104
0.099
0.701
1.986
1.063
1.799
2.817
1.832
3.449
1.050
1.438
3.376
3.370
3.370
2.580
8.990
4.250
6.176
14.109 Changing to Tasigna 7/7/17
7/28/17 800 mgs Tasigna
10/5/17 600 mgs Tasigna (Lots of bad side effects)
10/16/2017 PCR down to 0.141
1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.
#15
tiredblood
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Posted 12 August 2017 - 06:43 PM
For a while on Tasigna I felt like someone had put a hot iron on my scalp. It didn't last but for several days. Later, when my head got really itchy, I had frontal scalp hair loss. Sorry you're having to experience the SEs.
Oops, seems I posted on this already
Oops, seems I posted on this already
#16
Goldfinger
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Posted 12 August 2017 - 08:19 PM
I never suffered from any pain but I did have some type of severe head lesions. Eventually it went away in a few months. No longer an issue.
#17
rcase13
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Posted 12 August 2017 - 10:00 PM
Yep my hair was on fire for a couple months!
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!
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