Posted 08 November 2016 - 09:53 PM
You don't need to argue your case if you feel you are justified in your decision - just do it.
I stayed on 400mg G for 5 years, after which I reduced my dosage to 200mg, without my onc's knowledge or approval. I felt very comfortable making the change based on the informed input of people on this board and elsewhere. After remaining PCRU, I informed them of the change after one year. Beginning in year 7 and up to now, I alternate taking 200mg on even numbered days, and 100mg on odd numbered days.
Every once in a while I fancy cessation, but I stay active and manage to limit problems to cramps.
ROM1212, how long have been PCRU? Good to see you continuing to reduce your dosage. For the benefit of others, please consider posting your history in your Signature. You are correct; reducing dosage, when justified, is a personal decision.
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
