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#1 CmlT


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Posted 18 August 2016 - 12:22 PM

I've been off this board for a long time and can no longer login using my old id. so created a new one.  I have a rash question.  I've had weird rash on my right hand that comes and goes.  I haven't associated it with Tasigna.  However, I've been off the medication for a while and just went back 2 weeks ago.  Almost immediately the rash appeared.   I didn't have this rash at all while off Tasigna.  The rash looks very similar to what Trey describes in http://community.lls...-rash-question/but my rash goes away in about 3 weeks.  The rash appears in a circular mound in several spots on my hand; this time I also got one spot just below my neck.  In doing research I'm thinking it could be psoriasis and I see article abstracts that talk about development of psoriasis with different tki's; however, I don't see circular pattern in psoriasis pictures.  Every time I schedule dermatology appointment, the rash goes away by the appt time and I cancel.  Trey, was your rash diagnosed?  Anyone else with similar rash? In general my skin is very dry and reddened when I'm on Tasigna and I take benadryl/claritin which seem to help somewhat.  

Diagnosed in August'2007.  

Started on Gleevec 400mg, increased to 600mg, then switched to Tasigna in 2010. 

#2 Frogiegirl


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Posted 18 August 2016 - 10:42 PM

I get a faint rash on my face and scalp that isn't very noticeable unless I'm at a certain angle in the light....also on tasigna. Using cervave facial lotion, seems to be helping. Can I ask how long and why you were off tki?

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.

#3 rcase13


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Posted 19 August 2016 - 07:35 AM

I Have Psoriasis in addition to CML. I have had Psoriasis since my early twenties. When I started Tasigna it suddenly spread to my eyes and ears and has stayed since. I struggle with it everyday. Nothing the doctor has given me really works for very long. I refuse to try the more hard core oral drugs. I figure one hard core drug is more than enough.

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!

#4 Trey


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Posted 19 August 2016 - 10:07 AM

TKIs are known to affect the skin, and can certainly cause rashes, increase the effects of sun on the skin, cause itching, and so on.  I had several different types of skin issues, often red bumps, white thickening of skin, and depigmentation spots which all seemed to be related to Gleevec.  The dermatologist cannot draw a clear connection but has said there is likely a relationship. 

#5 r06ue1


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Posted 19 August 2016 - 11:51 AM

Red bumps have been my most common side effect from taking Gleevec so far.

08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%



Taking Imatinib 400 mg

#6 Buzzm1


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Posted 19 August 2016 - 01:23 PM

Red bumps have been my most common side effect from taking Gleevec so far.

Look forward to the time in the near future when you can begin reducing your Gleevec dosage to lessen the chance of side-effects.

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


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.  


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#7 gerry


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Posted 19 August 2016 - 06:02 PM

I had small lumps on the lower cheek area on my face, you couldn't see it easily, but you could feel them. They cleared up straight away when I came off the Gleevec.

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