Hi all my fellow CML buddies,
I thought it would be of interest to those following my progress since stopping my TKI, Gleevec.
I took my last 400mg dose on 30 April 2009 after following the STIM trials in France. I had been PCRU of about 4 years, with a few detected results in-between.
My last RT Q-PCR was done on 11/11/2013 at 11:00 and today (13/11/2013) I received my results.
BCR-ABL 9 - 22 "Undetected"
Detection limit = 0.00063%
The International Scale is used for reporting.
Wow, I have now been off all treatment for CML for 4 years and 7 months!!
I have had a few positives, but at very low detection limits in this latter period. Therefor I assume that these positives were either bad samples or a poor test results. I should redo the tests again, but the cost is major factor here in South Africa.
My trial is purely a private one between myself and my Haematologist.
My thanks go to my Haematologist, Dr Brian Druker and his team, and Novartis for making this dream possible. My faith in my God is unwavering and He has blessed me for some unknown reason that I am not aware of. Maybe in some small way my experience as related will be an inspiration to my fellow CML'ers that there is hope for a cure some day in the future. My body has developed the ability to suppress the BCR/ABL 9-22 effect.
Every day is a step into the unknown for me and I pray that my blessing continues indefinitely.
Kind regards and best wishes to you all on your own individual journeys.
Basil Jacobs
You are here
Report back on my CML status
Dear Basil.... your story is a great example of what some of us think 'might' be the reason why some people who,thanks to treatment with one or other of the TKIs, have a sustained (at least 2years) low molecular level of BCR-ABL1 are able to stop therapy and enter TFR (treatment free remission).
Like you, I hope that cases like yours will allow researchers to understand the mechanisms at play and this will lead to more people able to stop therapy without loss of remission.
You must be so gratified that you were able to persuaded your doctor to let you at least try for TFR. Many many congratulations.
Best wishes,
Sandy
Thank for the kind words Sandy. My Haematologist could not refuse my request as I had gathered so much information from the internet regarding CML, especially the STIM Trials that were being conducted in France. Here I must also thank you Sandy for this Forum which was the first CML specific group that I joined. The information regarding all the members individual journeys provided me with valid arguments as to why I should try for TFR.
Unfortunately my TFR is not on an organised trial but a private choice and an arrangement between my Haematologist and myself. The information that I may possess locked in my body is unfortunately not being used to further the understanding of the mechanisms which I seem to possess to keep my CML at very low levels. But that's the price we pay, for living in a third world country.
But hopefully my experience and journey serves as an inspiration to other CML patients
Best wishes
Basil
