Hi my CML brothers and sisters. I have not posted on this Forum for a long time so I guess I may be unknown to many of you, so a little background.
I was diagnosed in July 2003 and was on Interferon A (Roferon A ) for about 5 months but had to stop due to some serious side effects. Thereafter my treatment was changed to Gleevec 400mg/day. It was a relatively new drug here in South Africa at the time and all testing was by BMB samples for many months using the FISH Tests. No Lab here had the RT-QPCR test available back then. My wonderful Haematologist and a Professor at our National Health Laboratory Services were instrumental in establishing the RT-QPCR testing in South Africa - in fact I was a regular donor of blood samples to this process.
Those results continued until April 2009 when after following the first French STIM Trials, I managed to talk my Haematologist into a private, one off STOP Trial. He agreed and I am very blessed to report that I have remained in deep remission to date - 10 years and 4 months. It crazy how important the months are, but I feel I am in unchartered territory and each day is a victory.
I was also blessed with not having to suffer any of the horrible effects that I experienced on Gleevec.
To celebrated and encourage other qualifying CML Patients to try TFR, I together with Barbara Meunier founded the FaceBook Group, "CML Patients in TFR (Treatment Free Remission) in 2013. At present we have about 370 members and the numbers are growing daily as more and more CML patients who are likely candidates try Treatment Free Remission.
Please be aware that we only admit CML patients in TFR or have started the STOP Trial. We specifically do this as we are not an Advocacy Group and leave the decision about the patients TFR STOP Trial to the Treating Doctors as they are the Medical Professionals, and we as members are not.
We are a Closed group so all our discussions are private and confidential. A number of top Medical Professionals are also members as Observers.
I would suggest that should you qualify, join the Group as you can only increase your knowledge base on problems you may be facing off TKI's.
PS. This CML Support Group was the first Support Group I joined and still remain eternally great full for the information and support that I was afforded.
Kind regards and best wishes to all.