Hi all
Some of you will know that I have the T315i mutation and have been considering my next move (the Ponatinib trial or a BMT). After deciding that the BMT would be the best option, there has been a period awaiting further test results and advice from the Hammersmith to determine whether it should be a mini or full transplant. Because of the level of the mutation, and my otherwise good health, I have been advised to go for a full intensity transplant. I should be going into Bristol Children's hospital some time in mid August (I'm 41, not really a child :)) and in the meantime will be starting the transplant work-up. Currently I'm keeping well, still working and looking forward to a holiday in Cornwall. Am also doing a bit of work with Anthony Nolan with their latest campaign to get 10 000 new men on the register. I may even start a blog!(I will be re-reading various ones on the cml forum) Suggestions and comments gratefully received - my e-mail is diywid@supanet.com or feel free to find me on Facebook - I'm sure I will need lots of distractions when I enter solitary confinement!
Many thanks and best wishes to you all wherever you are on your journey!
Joanna
You are here
update on me...
Hi Joanna, I am not surprised that you have opted for the traditional transplant given you have the 'multi-drug resistant mutation' T135i. However, I am surprised that you have not been offered to at least try ponatinib whilst waiting for tranplant. you have most of July and August to see if you would respond. I understand the advice is based on your young age and general fitness- in fact even though I was 50ish at the time I was considering whether to have a low intensity allograft, I was told I could withstand a full intensity sct because I was fit and generally healthy. I declined and went for the combination trial of a 'mini' (although it is not as easy as that make it sound) sct+imantinb+DLI- even though I had an imatinib resistant mutation it was thought that the chemo would deal with that and I would regain sensitivity to imatinib after transplant. This proved to be a good call.
I am not sure of your levels of BCR/Abl at present?
I do hope you take time to read up on the different transplant diaries.
Best wishes,
Sandy
Hi Joanna,
I am due to have a transplant in the QE in Birmingham soon as I stopped responding to Glivec, went onto Dasatinib but then went quickly to blast phase and they found I now have AML too.
I've just had a cycle of chemotherapy and am home for a bit while I await my transplant.
If you want to add me on facebook it's Jacqueline Beresford. We can compare notes then while we have our transplants.
jackie
Thanks for your message Sandy -and the comments about my young age :)I was offered the chance to join the PACE trial - well I went for an initial meeting - but for various reasons I decided not to take that option (with full support of my consultant). I haven't decided the transplant route - but when I attended my last clinic appointment, I was told it would be a full intensity one. I will be meeting with the BMT specialist later this month (Prof Marks) so I guess I can clarify the reasons then, but I am being guided by him and the other medical people I am working with because I know they have been giving the type of transplant serious consideration, it is the mutation aspect that has influenced this I believe. My BCR/ABL is about 15% I think. Yes I will be re-reading the diaries & blogs...it was good how you responded to imatinib post-transplant wasn't it? I will have to wait and see what happens with me.
Thank you for this site, and all your support.
Jo