After three years on Gleevec, two months ago I dropped down to 300 mg, then two weeks ago 200 now I feel very very bad, cannot put my finger on what is going on.
Has anyone else had this experience?
Gleevec withdrawal
Started by
jmoorhou
, Feb 06 2017 08:52 PM
7 replies to this topic
#1
jmoorhou
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Posted 06 February 2017 - 08:52 PM
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
#2
Red Cross Kirk
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Posted 06 February 2017 - 10:48 PM
Happy belated birthday Janis!
A couple of years ago I went from 400 to 200 and didn't notice any negative changes. Sorry I don't have any helpful advice for you. 
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#3
RayT
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Posted 06 February 2017 - 11:05 PM
Why are you cutting back on Gleevec after only 3 years?
#4
Buzzm1
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Posted 07 February 2017 - 12:23 AM
In early December, 2014, I reduced to Gleevec 300mg and remained on Gleevec 300mg for a little over four months, before reducing to 250mg for three months, and then down to 200, 150, and then 100, each for three months. I experienced, and continue to experience, withdrawal effects, sometimes severe, all during the dosage reduction and subsequent cessation. I would attribute at least some of it to age, some to the total length of time on Gleevec, some to the luck of the draw. You might want to give yourself a little more time at 300mg, perhaps experiencing withdrawal effects a little at a time, before reducing further. Hindsight being close to 20/20, given a do-over, I would have started dosage reduction earlier, as you have done.
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
#5
r06ue1
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Posted 07 February 2017 - 07:12 AM
If I ever hit PCRU, I will be trying dosage reduction, hoping I can at least get down to 200 mg.
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
hannibellemo
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Posted 07 February 2017 - 08:02 AM
Janis,
I see on your last signature line that you are experiencing increased AST/ALT counts. Please tell me what level they have increased to. Thanks.
Pat
Pat
"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>
#7
Red Cross Kirk
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Posted 07 February 2017 - 11:33 AM
If I ever hit PCRU, I will be trying dosage reduction, hoping I can at least get down to 200 mg.
If I remember correctly, once you have two years of good response to treatment your prognosis is very positive. I decided to reduce dosage due to side effects even though I wasn't PCRU. I may never reach undetectable on imatinib, but my PCR is still trending slightly downward since dose reduction, and I'm okay with that.
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#8
jmoorhou
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Posted 07 February 2017 - 12:03 PM
Pat they are up to 46...not that much but I don't like the trend. I'm cutting back because of the DESTINY trial information that said it is ok after three years. Took full dosage last night after feeling really bad yesterday, feel better today.
Thanks for birthday wishes Red Cross Kirk
Thanks for birthday wishes Red Cross Kirk
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
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