Hi
My husband was told at the beginning of Jan this year that a bone marrow transplant was now required. It will ne non-related as his only brother is not an option. Just wondering how long any transplant patients out there were on the waiting list before getting their transplant? My husband getting very worried now and depending on fortnightly blood transfusions now.
Thanks for your help,
Moira
Hey Moira,
I would also like an answer to that question. I have just been placed on the transplant donar list and am awaiting tissue typing results from a sibling. I have asked my haematologists and transplant consultants this many times. I have been told it could be anything from a month to who knows ? The truth is there is no definitive answer. Each case will be based on the individual. I really do sympathise with both you and your husband. I find it agonising waiting. Going neither forwards or backwards. Lots of empty spaces and time to fill. Mostly in my case worrying. Not necessarily about the transplant but about finances etc
I would be interested to find out how long it has taken for people to go from the transplant list to conditioning. Maybe if enough people answer we can determine an adverage ?
Best of luck
David
Good morning
Just to wish you both lots of luck with the transplant. I am 3+ years post transplant.
I was lucky enough to have a sibling donor so I was able to time my transplant to exactly when I wanted it.
After a certain special birthday and getting my elder daughter off to University and before number 2 daughter's exams.....
If you need to search for a donor I can only imagine that the timing will be very variable. Not only does a donor have to be located, they then have to have several blood tests, then a medical then donate. It can be quite an involved proceedure. However, I do understand that if timing is critical then all these things can be speeded up.
For the person having the transplant there are generally heart, kidney and lung tests to 'pass' before the transplant. I was in hospital for a week or so having the chemo and then in hospital for only 8 days after the mini transplant. Everyone is different though as there are so many different protocols.
I have a blog if that will help
www.caringbridge.org/visit/susanleigh
Post transplant isn't so very easy. The treatment doesn't end there and I think that the post transplant period is often underestimated.
Wishing you lots of luck and CML free years ahead. If I can answer any questions then please don't hesitate to ask.
Susan
Hi Moira (and David) this is a really difficult- if not impossible- question to answer. HLA matching depends on a lot of things and a lot of it is down to luck...! If your husband is on the international database as well as the UK ones then I am sure a match will turn up soon.
There is the possibility of another option should it be difficult to find a good HLA match and that is double cord blood. The technology has improved for using the umbilical cords of new born babies as a source of stem cells. The reason for using double cords is that the number of stem cells contained in one cord is too small to give to an adult- somehow, by combining the stem cells taken from 2 unrelated cords means that the amount is adequate for an adult and (although the cells take longer to engraft) there have been lots of successful transplants using this method.
I am sure however, your husband will eventually find a match-
You do not say why he needs a stem cell transplant. It is quite unusual these days for CML patients to have transplants as the vast majority to respond to one or other of the 3 available drugs.
What is his current therapy? and where is he being treated?
Best wishes,
Sandy
Hi Sandy Alastair was diagnosed with CML in Sept 06 and straight away put on Glivec which was fine. During all his bone marrow tests, the doc always said the presence if CML was reducing but that there was something else in the cells that they couldn't identify. In May 09 he was switched to dasatinib hoping thus would rid the CML and this other unidentified "thing" their fear was this unidentified thing would progress to AML. After spending a week in hosp before Xmas with heavy coughing, mylo displaesia was.diagnosed as a result of the bone marrow failing. If a Transplant isn't carried out, AML is almost a certainty.
Hi Moira and Alastair
I am also a member of the class of September 2006 - the events of 4th September 2006 will remain etched on my memory for ever I think! I would just like to wish you all the very best as you head to transplant, the likelihood to getting AML is an excellent reason for heading down that path.
Take care of yourselves both of you, and please do let us know how you get on. There are so many people here who are rooting for you.
Janet
How long to wait ? if its a unrelated donor when you can find at least a 90% match,anything lower is very risky.(I speak as somebody who has had a 85% unrelated transplant,my new bone marrow has failed,I have gvhd,cancer of the B cells)
Dear Moira, thanks for letting me know why Alistair needs a transplant. I understand now and as he has an extra problem running alongside the Ph+ cell then transplant would be the obvious route.
Where is he being treated? I assume the same clinic will tranplant him?
As you might or might not know I had a reduced intensity stem cell tranplant (sibling donor) in October 2003.... if either of you need any advice or have any questions regarding what you should expect then please do not hesitate to ask and I will do my best to help.
Best wishes,
Sandy
Hi Sandy We live i N.Ireland. Alastair mainly treated in City hosp, Belfast but we live close to Altnagelvin hosp in Derry so that's where he gets his meds and transfusions. In Ireland, only related transplants are done in Belfast but as Alastairs transplant is non related, we've to go to Dublin, about 3 hours away. With two kids under 3 its going go be a nightmare but we'll manage.
Dear Moira,
I understand why travelling to Dublin would be a problem with 2 small kids - but the safest place to have a transplant is always at a centre that has a lot of experience and I assume Dublin would qualify on those grounds.
I do hope a match is found soon. Is David still being treated with a TKI to control his CML if not the 'other' kind of MDS problem?
Best wishes,
Sandy
