Posted 06 September 2016 - 09:37 AM
I still continue to have irritating bouts of breathlessness, I'm supposed to leave on vacation today and instead I'm going to call my onc and see about getting in for an X-ray for piece of mind. When I get back, I'm going to talk to him about rotating 25 mg every other day with 50mg. I have a 3 month build up of Sprycel and I don't want to have to change if it isn't necessary.
I also have the worry of PAH. I thought that it was considered a rare side effect, but I've since read that at least one study shows it to affect 5% of those on Sprycel; that doesn't seem insignificant to me.
Pat, glad you are putting your health first. Testing the waters by beginning the 50/25 rotation six weeks, or so, before the next PCR helps to gain confidence/lower the anxiety. Lowering your dose can only help lessen the side-effects which are more pronounced as we age.
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.
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