Posted 09 June 2016 - 09:15 AM
Predictive factors are still unclear. According to EUROSKI data, the frequency for relapse seems to be lower for patients with more than 8 years of TKI treatment, for longer MR4 than 5 years, for patients who received 2ndgeneration TKI as a first line treatment, and in case of patients that switched treatment, when switch was due to intolerance to the drug and not due to resistance. More issues are under investigation, e.g. immune control of the disease and genetic background of individual patients.
39% of patients in EUROSKI experienced adverse events from stopping in the form of pain in muscles, bones or joints, with 6% in severe forms (grade 3 or 4), and 8% experienced other stopping side effects like sweating, skin disorders, depression, fatigue and weight loss. In ENESTop (Nilotinib-Stop) 53% of patients experienced some form of muscle/bone/joint pain, but only 2% with severe forms.
A recent review article published by Susanne Saußele and other experts in the LEUKEMIA journal on 2 May has published a recommendation what criteria to use when stopping treatment moves into mainstream clinical practice (doi:10.1038/leu.2016.115).
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