Posted 11 January 2016 - 02:12 AM
After a minimum of two years of PCRU, while on TKI treatment, stopping may be contemplated.
NOTE: Dosage reduction before stopping TKI treatment may help moderate withdrawal effects.
the average odds of successfully stopping are basically 50/50 and while there are no absolute guarantees, TKI response, duration of PCRU, length of time on TKI's, and age, do appear to add to your odds of remaining TKI-free Stop Study Compilation
After stopping, if you are going to relapse (relapse is defined as losing MMR), the odds are very high that you will do so within the first four months (more than 80% of relapses occur within the first 4 months), >95% of relapses occur within the first six months).
A percentage of people stopping TKIs lose PCRU, but don't lose MMR.
treated only with imatinib; DMR of at least 2 years duration
76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times, confirming that BCR-ABL reappearance does not mean automatically clinical relapse (loss of MMR).
If you relapse, lose MMR, go back on TKI half-dosage, possibly less, and you will almost certainly regain PCRU within a few months. If it took you a longer than average time to reach PCRU initially, it may again take you a little longer to regain PCRU.
If you don't relapse in four months, the odds of remaining PCRU indefinitely climb rapidly, especially after six months.
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