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Reduced Intensity Conditioning Transplant

Hi everybody,

I keep popping over to the Children's CML link, but there's not much action there. There was a thread that mentioned Reduced Intensity Conditioning Transplant (mini transplant.) I'm interested in learning more about that procedure.

My son, Ben, age 10 was diagnosed with CML in May 2008. He was on Gleevec and in 3 1/2 months had a major molecular response. However, since he didn't acheive complete cytogenetic remission, the oncologist switched meds to Dasatinib. I'm questioning that decision with various experts.

Anyway, I'll be travelling to Fred Hutchinson Cancer Center in a few weeks for a bmt consult. "Hutch" is a center that has one of the best bmt success rates in the world. I'd like to discuss a mini transplant option.

Any thoughts or questions that I could ask to help my inquiry?

Much thanks.

TAD

Dear Tadlaw

As you may have seen from the Childrens site, it was my son Bill who it was suggested had a RIC transplant. This was proposed as an option by Dr Eduardo Olivarria based at the Hammersmith Hospital in London. I know that this is a new approach to transplant when the patient is otherwise young and fit. Apparently they have had great success with this treatment there although it is too early to make a direct comparrison between this regime and the full transplant option as there are not enough 'younger' people who have has this course of treatment yet. It does seem to be a more refined approach to trying to eradicate this disease and we all find the lack of TBI much more attractive. Bill is currently in a stable chronic phase so it makes this an option. If his disease were to mutate or become more active then it far as I understand it would not be an option.
The whole process can take up to a year with top-ups of donor lyphocites and the cotinuance of Glivac until no cancer can be found.

I know these doctors share knowledge around the world so its definately worth asking if this could be an option for you.

Best of luck

Sarah

Please go to the diary section on the home page. If you click on my diary (or Elizabeth's) you will find that I had a reduced intensity transplant with DLI at Hammersmith ...which is the one Sarah is referring to. I am not sure the Hutch would follow this sort of protocol as they are pretty much a 'traditional' transplant centre. Your can read David Cox's diary as he has recently had a traditional transplant there.

Sandy

Dear Sarah,

Thanks for your thoughts. I hope Bill has great success with any and all "options" available. I'd like my son, Ben, to remain on the meds while in the chronic phase for as long as possible. I'm following your son's story so that I might gain greater insight into the twists and turns of CML.

You're right that the medicine is shared around the world. It seems to me, however, that Europe is much more progressive than the U.S. at present. I think research is limited here due to political constraints regarding stem cell research.

I'm praying that Obama is our next President. That way, we might be able to catch up to the European model!!

Regards,
Tracey

I will definitely review the diary section at once. As mentioned in my post to Sarah, it's quite unfortunate that the U.S. hasn't caught up to Europe in its approach to CML.

That's why I'm so pleased to have found this site. I'm kept abreast of what's current - even if it hasn't meandered to the States yet.

We need greater research here. That will only happen if the political landscape changes. My fingers are crossed. We have one month until our Presidential election.

Regards & thanks,

Tracey

Hi Tracey,

So sorry to hear about your son, I hope that the treatment goes really well.

I have had a reduced intensity transplant, almost 1 year ago and for me it was a very easy procedure with minimal side effects and a very short stay in hospital. So far there is no sign of the CML post transplant and I did not need glivec post transplant.

My diary is at www.caringbridge.org/visit/susanleigh.

As far as I understand they do prefer to do the 'full' transplant on patients younger than around 40, youngsters can tolerate the higher doses of chemo etc much more easily and are less likely to need DLI afterwards. I think that a full transplant is considered a 'proper cure' as there is not so much long term follow up with the reduced transplants.

As far as my consultant is concerned he won't pronounce me cured for a while yet.

regards
Susan

Thanks for sharing your story Susan. I will keep praying that "cured" is the word to describe you, even if your consultant won't make that pronouncement just yet.

The information about the mini transplant that you provided will be very helpful in my discussion with the experts at Hutchinson. There are very few studies with children, so there's always a reluctance to try something new.

However, if the mini transplant seems to work on adults, there's no reason why it shouldn't work on kids - who generally have better overall good health than many people over 40.

So the reasoning for NOT offering mini transplant to children may not be based on evidence, but a lack of it.

Thank you again and best wishes to you!!

Regards,
Tracey

Hi Tracey,
There is a high level translant centre at University of Minnesota... see link below... who are at the cutting edge and have been doing both RIC sct's and umbilical cord as source of donor stem cells for some years now.
Hope this is a useful addicition to your arsenal ;o)

... info here

....and here

Sandy

That's great information. I'll be visiting Hutch in a week. We're not making any decision on bmt yet, so I'll have plenty of time to head over to Minnesota as well! :-)

Much thanks.

Regards,
Tracey