Thanks to all for the good wishes... and yes I am planning to stay around for at least another 20 years!
John, yes you are right, I did go on to have a transplant in October 2003. After 2.5-3 years of responding well to imatinib (then called STI571) it became evident that I would not hold my remission for the longer term. I did have a molecular response.. something like 0.5% which was the lowest recorded PCR result I achieved, BUT my results started to bounce around at just under 1.% and a mutation test showed I had developed a P-loop mutation called Y253H known to be resistant to imatinib. A big disappointment to say the least.
However, thanks to Prof. John Goldman, Prof. Charles Craddock (now of Queen Elizabeths Birmingham) and Dr Eduardo Olaviarra, Hammersmith suggested I enrol in a trial, then experimental, of a Reduced Intensity SCT combined with 400mg imatinib for 1 year post-transplant followed by DLI.
I know this might seem counter-intuitive as the mutation I had was resistant to IM. However, John Goldman thought that the cells with the mutation would be dealt with by the chemotherapy drugs used as conditioning. He was pretty confident it would work so I went ahead.
I had to take imatinib for 11months post-transplant, then stop and watch and wait until BCR-ABL levels showed a rise. At the point where levels were above .5% by PCR so DLI was introduced (and this was the clever bit). I was given 4 separate infusions each with an increased dose of mature lymphocytes from my (sibling) donor. The lymphocytes had been separated off from the donor stem cells which I had received as the transplant, and kept in the 'fridge'. The theory was that over the 12 months post-transplant my body would accept the donor stem cells as my own and therefore when DLI delivered the mature donor lymphocytes, GVHD would not be a problem and would not kill me!
Luckily for me, the theory was right and when I eventually stopped the 'holding' dose of imatinib at around 11 months after the SCT, we waited nervously until each donor lymph infusion was given..... each time waiting for 12 weeks before the next infusion, doubled up on the previous one. All in all it took quite a while.
In the end, I had 4 infusions with the last one at 55,000 per ml of donor lymphocytes, before we saw the response we were hoping for and my PCRs results confirmed that BCR-ABL had left the building!
The day I got these results will be one I will always remember - I was so happy I nearly hugged my doctor- but of course being English and a bit shy (yes really) I just shook his hand ;o))) I remain a big fan of all those haematologists - John Goldman, Charlie Craddock, Eduardo Olavarria and of course Brian Druker - all of them dedicated to finding a cure for CML and other leukaemias.
If I had been able to access dasatinib (or nilotinib) at the time of my molecular relapse (in 2003 both were still in early trials) I now know that neither TKI would have been effective in dealing with the particular mutation I had. The irony is that I would have responded to bosutinib but the availability of that TKI was way ahead in the future!
I remain very grateful to all those doctors and researchers whose work and dedication underpin the story of CML and TKI therapy. Jessica Wapner really did a great job of telling that story.
Thanks to all of you this website and its forum continues to grow- reaching out to and helping all we can.