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Has anyone had hives with Gleevec?

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#21 simone4


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Posted 17 August 2015 - 10:03 AM

Pat, I'm still suffering with hives.  I am taking atarax bid which is helping with the

itching.  I see onc. on Wed and I have been off Gleevec for two weeks.  He

will slowly increase the dosage back to 300mg.  My last PCR was .004 so I am

ok I guess.

My suggestion to you is to take a Benadryl and if it abates the itching, you know

it is an allergic reaction.  I know we started these drugs around the same time

6 years ago and now this!  Every morning I wake up and think of Dorothy Parker

"What fresh hell is this?"

The dermatogist has been useless and more useless each time I enter her office.

I am going to see my Allergist on Thurs.  I haven't seen him in years, but he is

a good diagnostician and maybe he can figure this out.

Me....Me.. Sorry, I hope you will try an antihistamine and the best lotion is

called Sarna.  It relieves better than even the Rx creams.  It is otc.

I hope we both find some resolution to our skin issues.

Take care.


#22 hannibellemo


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Posted 17 August 2015 - 04:13 PM



.004 is great! Mayo doesn't even quantify if one is > 0.01, which I was at my last PCR this month.


Thanks for the heads up, I'll give Sarna a try. I'm pretty sure this is Sprycel because it is more of a burning sensation which is what I had when I first started Sprycel. Hopefully, this is on some kind of dumb rotation schedule and will pass like it did 6 years ago!





"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#23 gerry


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Posted 17 August 2015 - 06:47 PM

I went to a dermatologist in the first few months of being on Gleevec, all he did was give me a lecture on staying out of the sun, not worth the money I spent.


Keeping my fingers crossed for you that the allergist can come up with something.

#24 simone4


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Posted 17 August 2015 - 10:30 PM

Thanks Gerry, I hope so too.

#25 simone4


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Posted 19 August 2015 - 12:07 PM

Well, I went to onc. this morning and although the hives have been

better in the last 48 hours, they are still coming and going. He has reduced

my dosage to 200mg.  See what happens when I go back on it.

(My eosinophils were 1.01.  He told me that was from the hives, etc.

but I worry about that much inflammation in my blood.)

Comments are welcome about that issue.


If I do have allergic reaction on 200mg., he will have to change

me to Sprycel. It is the rope or the razor at this point.


Thanks for listening.


#26 Buzzm1


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Posted 19 August 2015 - 12:37 PM

Simone, I sympathize with your plight ... can't even imagine going through something like that ... you said you had been off Gleevec for a week and the hives were still coming and going. Seems the Gleevec would be out of your system.   Is there any chance that the hives could be caused from something other than Gleevec?  Are you seeing your allergist tomorrow?



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.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#27 simone4


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Posted 19 August 2015 - 01:35 PM

Buzz, yes I see my allergist tomorrow.  I've

been off Gleevec for two weeks.

Been taking Atarax during that time as well and that has helped the

iching but not so much the hives.

Thanks for your concern.


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