Posted 19 March 2016 - 11:43 AM
I would also like to encourage people to post their timeline, current status and other information in their signature line. It really helps when posting replies. It's difficult to keep where in their CML journey everyone is!
I couldn't agree with you more ... it really helps ... thanks
to add your history/status into your signature
upper right, click on drop down menu next to your name..
select My Settings ..
on left-side, select Signature
scroll down, enter history/status info, Save Changes
thanks for participating
hi buzzm1, thx for the link, I will check it out. When I mentioned about signing up for the LAST trial, he said I dont need to bother with a trial, that we could just do it ourselves. I dont have any problem with that since I think he knows his stuff. But if that is how we plan it, I want to make sure that we are doing everything we should such as monitoring frequency, etc. Not sure what else there is that I would need to do, probably not too much hopefully.
mdszj, you have a very astute Onc. It isn't at all necessary to be in a STOP Study to cease TKI dosage. They aren't always convenient/geographically available and they are time-consuming. Studies are done for the purpose of compiling stats, thus the frequent monitoring. As has been mentioned, with rare exception, CML is basically a slow progressive disease.
Stopping - Stop Studies
Relapse during cessation is defined as the loss of MMR:
a significant percentage of patients do lose PCRU, but don't lose MMR
i.e., STIM2 http://bit.ly/1IbwZuh2011
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.
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