Posted 21 October 2017 - 10:36 AM
Lori's okay, we don't have separate topic-related areas to post in, only threads..
Not everyone experiences withdrawal side-effects. I think I read that only 38% of us do. It is my belief that it is better to reduce one's dosage gradually before cessation to possibly minimize withdrawal side-effects, or to at least spread out those withdrawal side-effects over time. It's also less of a shock to the body.
Gradual dose reduction also serves to confirm the depth of one's undetected status; not everyone who is undetected on a full TKI dose, might remain undetected on a lesser dose.
Many, among us, aren't able to tolerate a full dose of a given TKI, and reduce out of necessity ... suffering is overrated ... if issues with TKIs don't resolve themselves within a given period of time, consult with your oncologist about a dosage reduction, or a possible switch to another TKI.
There isn't any hard and fast rule on how gradual reduction should be, or how long one should remain at any reduced level, but after remaining undetected on a full dose for at least a year, two quarterly testing cycles at each level when going to three-quarters, a half, or a quarter, might be a good rule of thumb. Some, who have been on a TKI for over a decade, might find it preferable to extend the time at each level. Some, who have been on a TKI for over a decade, and have attempted cessation, have had to return to their TKI, due to the severity of withdrawal side-effects ... to attempt a course of gradual dosage reduction to lessen the impact of withdrawal side-effects.
Play it by ear. We each have a unique experience with our TKI. What works for someone else may not work for you.
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
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