I have just seen that I have been a member of this Forum for 13 years and 3 months. Gosh how time flies! I was diagnosed in July 2003 and this was the first Group I joined, and what an inspiration it was to be at that time.
I was first on Interferon A for 5 months and had to switch due to extreme side effects. Fortunately my Medical Aid agreed to pay for Gleevec so 400mg per day was to be my future treatment. In April 2005 I tested "undetectable" for BCR/ABL using a RT-QPCR test. (This was the first time PCR tests became available in South Africa, so I can't tell if I was "undetectable" before that date.)
In April 2009 after following the French STIM Trials I convinced my wonderful Hematologist to allow me to stop my Gleevec and give Treatment Free Remission a trial.
I test 6 monthly and my last test was on 1 November 2019, which also came back BCR/ABL "Undetectable".
So to date that's 10 years and 6 months in TFR.
I have been so blessed though it all as my side effects that I had whilst on Gleevec all disappeared within a month or two.
So my heart-felt thanks to all the support I received from this Group in my early stages of CML and I hope that my ongoing good results in TFR serve as an inspiration to all. Unfortunately we are not all as fortunate as I have been to remain in TFR, but if you qualify to stop TKI's and do not take take the leap of faith, you will never know what the outcome might have been.
PS. We have an amazing Group on FaceBook for all CML patients who are in TFR or on a Trial to stop their TKI's. It is a Closed Group so all discussions are private, but the entrance is reserved for TFR and TFR Trial CML patients only. The reason for that is that we are not an Advocacy Group and do not suggest stopping TKI's as this is a Medical Decision that must be made between Doctor and Patient.
"CML Patients in TFR (Treatment Free Remission"
Kind regards and best wishes to all.