Hello to all on this great forum (Group)
This was the first Group I joined so many years ago and where I started my quest to learn all I could about the thing called CML that I had been diagnosed with.
The format has changed over the years but the information available remains as always, excellent! A Big Shout Out to Sandy for your time and devotion to helping others.
Just an update for those who may still remember the decision I took in May 2009 to stop taking Gleevec. The first STIM Trials had been conducted in France and the results were very encouraging to me.
I was dx'ed in July 2003 and was at first on Interferon A for about 5 months but had to stop due to the severe side effects, although the results were positive. I switched from a Specialist Physician to a Hematologist who immediately prescribed 400mg Gleevec per day. We did not have PCR testing available at that stage is South Africa so all tests were BMB's and FISH testing. At the end of 2004 my blood samples were used to fine tune the new test equipment at our National health Laboratory Services. I am sure other samples were used as well.
It was early day of trying to go Treatment Free and not much was known about the outcomes apart from the French reports. Well 50% chance of staying off was good enough odds for me and I took the plunge.
Back to the present: 102 months in Treatment Free Remission (TFR) have passed and I remain BCR/ABL "Undetectable" (Last test in October 2017)
All my other major organ functions are great which proves that to date Gleevec did not damage my Liver or Kidneys.
All the PCR test are adjusted to the IS and the results have all been below 4.5 log.
Now for the really great news. During my last couple of years on Gleevec my side effects were increasingly becoming more difficult to manage, so my decision to stop was a no brainer. Within 2 weeks all my side effects had disappeared and up to this day my CML treatment feels like a distant memory. (nightmare).
I am 72 years old now, play golf twice a week and remain active without any disabilities.
PS. Barbara Meunier and myself have a FaceBook Group called: CML Patients in Treatment Free Remission. Our requirement for membership is that the applicant must be in Treatment Free Remission, whether on Trial or not - but not taking any form of TKI. ( under their doctors supervision) Our members discuss their personal experiences after stopping TKI'S and there are serious side effects that some face, mainly in the form of bone pains. Hope to meet you all there some day in the future.
Blessings to all of you