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Russ - Mini transplant

Hi Russ
Your post is tagged on to posts from last year and so many may have missed it. Congratulations on your successful transplant. I am 27 months out of transplant and doing great also. Nice to hear of others who are doing well. I was 53 when I had my mini sct at HH.
Best wishes
Elizabeth

Hi Elizabeth,

Glad to hear you are also doing well - seems that HH and Kings do a lot of mini's now and I know of sveral very good results including one case of AML very near death and now doing very well. Kings have just dropped my PCR and chimerism tests from every 3 months to every 6 months - do you mind me asking what frequency and what tests you have.

Kind regards
Russ

hello Russ,
Elizabeth is on holiday at the moment but i may be able to answer your question.
i am part of Eduardo Olaviarra's 'mini tranplant' study at HH, which he has been doing for the last 5 years (it is still open and recruiting)... i believe there are at least four other UK centres using this study protocol.
this involves a combination of a low intensity stem cell transplant with 11 months support of 400mg Glivec, which prevents the high incidence of relapse associated with low intensity sct.
after this period Glivec is stopped and pcr levels are monitored. if and when they reach 0.5% a course of donor lymphocyte infusions is started.
it took over 18 months for my pcr's to reach this level and a further year or more for the curative amount of donor lymphs to be given.
the doses are very small at first and increased with each DLI. this is to guard against GVHD which can be life-threatening if too many mature donor lymphocytes are given too close to the initial transplant.

because of the risks associated with GVHD, the study protocol is cautious and DLI's are given at levels of 2.500 million; 5million; 10 million then 50 million or more. each infusion has a gap of 3 months before the next one is given.

responses do really depend on the individual. some respond to 10 million, but in my case it took 50 million and a good 3 months after that to see a response.

i heard last march that my 4th DLI (50 million donor cells) had been successful and that bcr/abl could no longer be detected and... i was 'probably' looking at a cure.

since then i have had tests every 2 months.
this shorter testing interval may be because i am part of a study and the data is being collated, so pcr's would be required more frequently.
(i have been told that this study will be published this coming month)

many congratulations on your successful mini sct. i believe that a small proportion of the patients on the study at HH did not need to have DLI and had achieved negativity with the mini sct alone.
i would be interested to read about your experiences.

best wishes,
sandy C ;o)

Dear Sandy - thanks for the reply - I in fact had 2 dli's, the key driver being mixed (and falling or level) chimerism. Chimerism 6 weeks post transplant was 70% donor but fell to 6% - at this point I also developed Immune thrombocytopenia, the first dli was at 7 months post transplant and raised the chimerism to 30% but levelled out and a second was given 3 months after the first - this induced borderline grade 2 gvhd and due to the treatment for gvhd gave me CMv re-activation and toxoplasmosis all of which was sucessfully treated - the chimerism after all this was 100% donor and bcr-abl undetectable. No glivec was used at all post transplant (I had secondary resistance anyway so it would have been a waste of time ).I have been 100% donor and PCRU for 21 months at least as during the gvhd no pcr tests were done as I think they had enough on their plates!I am now almost 3 years post transplant and quite well.. The experts at Kings were also very cautious with the DLI's and the regime sounds similiar but without the Glivec. The end goal always being 100% donor and PCRU.

Incidentally I stopped cyclosporin at 7 weeks post transplant.I think this is pretty quick from what I have heard.

I can waffle more if anyone wants me to!!
Russ

hi russ,
thanks for your story... it is great that it only took 2 DLI's to get you into prcU. do you know how many donor cells were in each infusion?
you said....
"(I had secondary resistance anyway so it would have been a waste of time )..."

i did too... a glivec resistant p-loop mutation Y253H... one of the more resistant. and yet i regained my sensitivity to glivec after the transplant, much to everyone's suprise. my doctor was really pleased at this and i know that at least 2 other patients that had mutations were recruited onto the study because my case proved that it was not a waste of time ;o))

i am really glad things have worked out for you too... i am coming up to 4 years post transplant this october and continue to be pcrU. no need of any medications since coming off the cyclosporin.. and it is beginning to be a distant memory. my doctors study is about to be published in Blood. he has promised to let me know as soon as it appears.

best wishes,

sandy C ;o)

Hi Sandy - I dont know how many cells were in the DLI's as I wasnt knowledgeable enough to ask at the time. As for Glivec - I never really got a cytogenetic response at all so no detailed investigation was done. The consultant also said that post transplant it would very likely be a different story with glivec but I have never needed any (touch wood). The only long tern med I'm on is penicillin.... and yes all those pills post transplant seem a distant memory.

Russ