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Dilemma, alphabet soup

I would really appreciate any help in picking my way through this maze.
I have CML and MS, a succesful BMT is the only possible cure for both conditions. SO why not? It's not easy.....

After a year of slow response to 400mg glivec I have been on 600mg for just over a year, and have had a good response my latest PCR is 0.037.
I am of course delighted that the CML is in retreat, unfortunately the higher dose of glivec has caused huge water retention and weight gain which I find depressing/distressing and impossible to reduce. That is not in itself a reason to consider a transplant, but the MS is.It would be a dream come true to walk again etc, but the MS while disabling, is not aggresive, and I do have a good quality of life, most of the time, anyway.
However I am 52 and my siblings are not a match. My youngest son is 10, I know my family would prefer that I were around for a while longer.
What to do?

hi,
there is a member of this forum who has had to deal with both CML and MS. i am sure that when he reads your post he will contact you. he went for transplant (full bmt with sibling donor) over a year ago and has responded well. his diary is on the home page... just scroll down and click on David Morton's diary.

i too had a transplant over 3 years ago... as i was over 50, had developed resistance to glivec and also had a sibling donor, i opted to take part in a study (still ongoing) at hammersmith hospital. the protocol uses a much more easily tolerated form of pre conditioning... it is called a mini-sct. you can read details of my experience if you click on my diary ... the link is also on the home page.
this form study has been extremely successful and is now available at other centres in the UK. the 5 year data will be published in one of the specialist journals at some point this year, but my doctor (one of the lead investigators) is extremely happy with the results.
do you have a sibling donor? where are you being treated?
best wishes,
sandy C ;o)

Hi, thanks for that. This site is really brilliant, very user friendly and full of helpful information and support, so thanks for that as well.
My treatment is at UCH London, my consultant is Prof. Mackinnon, same as David Morton. I do not have a sibling donor, is there ever a match with another relative e.g. niece or nephew?
Teresa

Hi Teresa

I am sorry to hear of your dilema. I am also under Stephen Mackinnon albeit at the Royal Free Hospital.

I am also trying to get my head around the possibility of a BMT - although I do have a sibiling donor. It is such a big step, especially as I have 3 teenagers.

I am intolerant to both glivec and BMS although they both work very well for me.

I live in NW. London, if you would like to meet for a coffee and chat sometime that would be nice. I also meet up with David Morton occassionally.

My email is susanlynn.leigh@virgin.net.

regards
Susan

Hi, thanks for that. This site is really brilliant, very user friendly and full of helpful information and support, so thanks for that as well.
My treatment is at UCH London, my consultant is Prof. Mackinnon, same as David Morton. I do not have a sibling donor, is there ever a match with another relative e.g. niece or nephew?
Teresa

hi teresa,
it is very very rare that a family member other than a sibling is a good enough HLA match to qualify as a donor.

unrelated HLA matched donor searches may be more desirable than trying to get a close match from someone who is more distantly related like a nephew or niece. it is not unheard of that a parent can match but this is very rare.

there is another source of stem cells and that is from unbilical cord blood. to my knowledge, there are not many -if any?- centres in the UK that are using this source at the moment. however there is a centre in the USA that has done extensive research on this form of transplant... i have posted a link to the relevant page on their website ...see below.
i hope this helps. they are also performing mini allograft or 'non-myeloablative preparative therapy' sct's.

Umbilical Cord Blood Transplantation Programme
Transplantation for Adult Patients

at University of Minnesota in the US ...click on link.

University of Minnesota

here is a snip from the above page.....

"...Until recently, there were some unique problems to be overcome in the transplantation of adults using umbilical cord blood. We know that the number of stem cells in cord blood (i.e. the cell dose) has a very important effect on survival after transplant. For larger teenagers and adults, a single cord blood unit often does not contain enough stem cells to perform the transplant safely. Therefore, we investigated transplantation of two closely HLA matched cord blood units or double umbilical cord blood transplant as a way to increase the number of cord blood stem cells transplanted. Investigators at the University of Minnesota were the first to investigate the feasibility, safety and efficacy of mixing two closely HLA matched UCB units. This novel treatment has opened up cord blood transplants to patients as never before and has gotten worldwide attention. The results were better than expected.

Recovery of the blood and marrow is now highly likely in adults in contrast to past results with a single cord blood unit.
Severe GVHD remains low despite 2 antigen mismatching.
Survival exceeds 70% at 1 year for patients in remission and who received a full preparative therapy.
Relapse is less than 10% for those transplanted in remission.
In addition to speeding recovery of white cells, results so far suggest that double UCB transplantation in adults is associated with a lower risk of relapse possibly because there are two healthy immune systems capable of rejecting the leukemia or tumor cells.

In addition, we know that 1) older adult patients, 2) those that have relapsed after a prior transplant, 3) those that have already had extensive therapy for their cancer, or 4) those who have other illnesses or complications, will not be strong enough to undergo high dose chemotherapy and radiation. Therefore, we are investigating a non-myeloablative preparative therapy that still enables the growth of the umbilical cord blood cells in the body. These transplants are designed to be less toxic and are effective by means of an immunological effect of the umbilical cord blood cells attacking cancer cells known as the "graft-versus-malignancy" effect. This study represents another first for the University of Minnesota investigators' breakthrough work."

sandy C ;o)

Hi Theresa,
Just to let you know that my daughter had a successful if difficult BMT for CML in 1997. she was 21 years old at the time. Her two brothers were not a match but I was a 5 out of 6 match for her. The hospital decided to test my brother who was also 5 out of 6 match. He had three children who were also tested.

His eldest son was 15 years old at the time and he proved to be a 100% match for my daughter. The hospital said that it was most unusual for this to happen.
I am very grateful to my nephew for agreeing wholeheartedly to be a donor for my daughter.

teresa
Thanks all the info really helps to build up a picture.
teresa