Posted 30 March 2016 - 01:12 PM
In my own case, wanting to reduce my dosage, arguing against the opinion of my oncologist, was an act of desperation to try to regain some quality of life and rid myself of some of the disabling side-effects of Gleevec 400mg. Even then, unsure of the outcome, I waited until six weeks prior to my next PCR, before reducing from 400mg to 300mg, and then stayed on 300mg for another full PCR cycle before further reducing down to 250mg.
Despite currently being down to 100mg I'm still attempting to regain some quality of life, or make that life itself (it has been an argument with my Onc, at every juncture), as I still feel almost completely immobilized, be it from the medication, the CML itself, or likely, my age. My favorite pastime is sleeping. My immediate plans are to reduce down to 50mg as of my next PCR, and then remain on Gleevec 50mg for two PCR cycles; the purpose being to find out if I can hold PCRU on Gleevec 50mg in advance of, if, and when, it turns out that I relapse after discontinuing the TKI as of my October PCR. That, and if I lose PCRU, it would be early 2017 before I begin paying through the nose for my med up through the Medicare donut hole. Lucky me, I haven't had to fill a Gleevec Rx this year, and won't have to, as I have more than enough Gleevec on hand to fulfill my remaining 2016 need.
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