My November PCR results are just in.
Hi all my fellow brothers and sisters in this Group.I saw my Haematologist today and I am relieved to report that my CML is still "undetectable" after 6 years and 6 months off Gleevec. Gleevec was my saviour for 5 years and 5 months.I am now only going to be seeing my Haematologist every 12 months, unless I feel something is beginning to change.I wish this freedom from TKI's on all of you.Kind regards to all.
I've been waiting to hear from someone who's been "free" from TKI's for significant time. That's really fantastic news. REALLY fantastic.
I'm on the DESTINY trial and have just started that journey. Been TKI free one month. First check up since is next Wednesday.
I'm not one who is hung up on "what happened to others who've been here" . Just as well because otherwise I'd literally have worried myself to death! I'm approaching 21 years since diagnosis. Had all the stuff that was supposed to kill me. Had a MUD BMT and on imatanib since trial and now for approx 15 years .
Withdrawal of imatanib is really the only thing I've been a little concerned about as it's the only thing that worked for me. For a long time cancer and leukaemia research funded my drug. I'm somewhat concerned that now it's on the NHS listing that the decision to trial de-escalation and withdrawal might have been driven by cost of the drug. I've no problem with that PROVIDING other things (like patient health and risks to them) are given stronger weighting.
Whenever I've asked for metrics about de-escalation I'm told "don't know" or "not readily available". It's one of the main reasons I decided to connect with others via this forum.
Did you come off within the confines of a clinical trial?
I'm not sure that I'd want to move to annual monitoring but then I'd only just got to that point when the new PCR testing came out and wallop.. Seemed the BMT hadn't actually worked as they thought and it had taken off again with a vengeance. Thankfully it had the good grace to coincide with when imatanib was available to trial.
Amazing news, Basil. Your pioneering has paid off and gives hope to all fellow CML patients. Thank you for sharing such good news with us all,
Best
Chrissie
Basil,
so good to hear you are still in TFR after all this time. I know you started off as a 'one man trial' and it is wonderful that your doctor was willing to support you in the right way. 6 years and counting- Well Done! It will be really interesting to find out why some can stop successfully and others experience a pretty quick molecular recurrence of Bcr/Abl. Hopefully, with all the discontinuation studies going on the answer will be come clearer. It is only a shame that because you were not part of a clinical trial, your 'molecular picture' will not be included in the data from the various studies and so cannot add to the learnings so to speak.
Nevertheless, thanks for updating those of us on this forum on your good news
Best wishes,
Sandy
Darley: Just to mention another person in long term TFR- Desnee here in the UK is also still in TFR after 6 -7 years and still doing very well.
Hi Darley,
No I was not on any trial at all. We don't have such luxuries in South Africa. My decision to stop was based on many factors but mainly the results of the original STIM trials in France. My motto was "nothing ventured, nothing gained" The outcome that those who fell back on treatment were soon back to their previous negative status lessened the risk in my opinion. My Haematologist supported me fully in my decision as I had him well primed with the STIM Trial outcomes.
Thanks Sandy. I have always stated that it is a pity that many in TFR were not part of any trials so that this valuable data is lost.
I have kept all my medical and test records since my first PCR in 2005. When I was diagnosed in 2003 I was on Interferon till December of that year. Thereafter on Gleevec 400mg /day. We had no PCR testing facilities at that time so all the tests were using the FISH technology. During 2004 my Haematologist in conjunction with the National Labs developed the PCR test, using my blood samples. In April 2005 I got my first official RT- QPCR results - "BCR/ABL Undetectable".
Since then I never looked back as far as my CMR status, excepting for some horrible side effects which almost immediately disappeared on cessation of Gleevec.
Kind regards
BTW. This was the first CML Forum I joined, and what a pleasure it was to be amongst other CML'ers. Zavie was also a great inspiration in my journey and I still wear a cap he sent me with "Zavies Zero Club" and my number 889 embroidered on it. I was actually 888 but declined that number for personal reasons.
Basil, most interesting. I remained hesitant about trying dose reduction having read about those who had come off, albeit not in trial and whom had managed to maintain good response. For me the thing that made me interested and more reassured was reading that when some had to go back on treatment they were indeed restored to their previous negative status.
For me that was the most important thing. My views are shaped from the perspective of having been diagnosed when gravely ill and commenced awful treatment in the bad old days. I was on interferon too and stoicly coped and tolerated the drug but my leukaemia was running rife. A MUD BMT was my "last chance". That was thought to have worked till Bcr/Abl testing arrived on the scene. Then it turned out it had actually failed spectacularly. So not only was I suffering the consequences of that but I still had CML.
Having been in the land of "nothing ventured northing gained" and survived I then stumbled into the imatanib trial and actually started to get better. It was really important that I didn't do anything to jeopordise or compromise my health. Having had 6 years of being so seriously ill and more or less spending 2 years of that in hospital it seemed to me that the side effects of imatanib were nothing in comparison to that experience. Frankly I didn't care if I was over-medicating or even if it was doing me long term harm. The year I went on imatanib was the first year I didn't have an emergency admission into hospital. For me it was not only a life saver but a new start.
It's good to hear about others who have managed to stay off the drug and for me it's equally good to hear of those who have not maintained good response but have had to go back on and that's worked too. IF I have to live my life on imatanib I'm genuinely not concerned at all. As far as I'm concerned, it's a wonder drug.
