[sandraParticipant]

Hi all ,
I just wanted to get an idea on how many of you have experienced allo ( donor )transplants during your time with mm .
Have you been offered one by your consultant , what age are you , where are you along the mm journey and which hospital are you with .
My interest is just general as I was told recently that they are so rarely carried out and not many take place in europe let alone the U.K as the data is too early . So just as a a nosy bugger I wondered what your experiences were ?
Thankyou if any of you have time to reply
Best Wishes
Sandra x

[RozParticipant]

Hi Sandra

My husband got told there were not used very often now. All his family wanted to be tested for donating but not one of them were tested. He died in December. We got told it was stem cell donattion now a days, then all the medications. After that none had a clue what to do for Michael. His body just gave up.

Roz

[adminKeymaster]

I think that because the harvesting is basically straightforward and auto transplants are so much safer and simpler to live with they only use allo if they must. Also the medication is pretty good so the transplant is not a life saver.

[tinkerbellParticipant]

Hi Mrs L,
As you know I was discussing this option last Monday with my consultant and one of the questions I asked was how many are carried out in Belfast per year and the answer is approximately 10 for all diseases. There are 10 isolation wards in Belfast so not a very high percentage of people here are having allo's. There are 2 people I have been told have achieved a 10 plus years remission from an allo though – not sure who they are and obvioulsy they took the chance when there were far fewer drugs avaliable.
xx

[JetParticipant]

Hi Sandra

When I was first being told about the disease and treatment, including stem cell transplant, my girlfriend asked about donor transplant… like you, more out of curiosity than anything.

We were told that the risk of rejection of a donor transplant means that they rarely take that route, especially as they generally get a good outcome from autologous transplants. We were also told that a sibling is likely to be a 1 in 4 match and the testing is a very straightforward blood test.

I am 49, so quite a young patient for MM. I will have SCT this summer, all being well and providing I remain healthy, if I relapse in a few years, then I could potentially have a further self-SCT and possibly only then… maybe 10 or more years away, they might consider a donor transplant.

It does seem to be a rare thing to do… which I trust is for good medical reasons. I trust my medical team, and the self-transplants seem mostly successful, so I'm not giving it any weight at all at this point.

I'm being treated at Nottingham City Hospital Centre for Clinical Haematology, under Dr Cathy Williams/Dr Jenny Byrne. So far, I'm well-impressed and feel they are very clear, competent, supportive and human.

[PerkymiteParticipant]

I am sure one of our members did have an ALLO transplant, and it was not that long ago, unfortunately I cannot remember who it was. Sorry not very helpful but I will keep my brain churning over, it might come to me.

Kindest regards
David

[brochoParticipant]

Hi Sandra I was 52 when diagnosed and I was told that an allo was too dangerous for me , mind you it wasnt just based on age but rather the amount of damage already done. I was surprised as UCH London is a major teaching hospital and my local docs had suggested an allo as a possibility. David it was Shirley who had her allo recently love Bridget x

[PerkymiteParticipant]

Thanks Bridget:-D

[GillParticipant]

Hi Sandra

My husband was diagnosed in 2008 He has had one auto SCT and is now needing a second. Fortunately when he was harvested he managed to produce enough stem cells for 2 autos.

One of the first questions he was asked when first diagnosed was how many siblings he had. Answer none. We had no idea at the time why the question was asked but I believe now that an allo is considered if not enough stem cells can be harvested from the person with mm.

I am a long way off of knowing didly squat about procedures but it seems that allos are carried out more often in the USA than here.

I am sure that someone else on here will be able to give you further information

Kind regards Gill

[sandraParticipant]

Thanks gang for all your replies , I know that 2 or 3 people on the under 50 site have had them and others have been spoken to about them but I was amazed when my Doc almost thought I was mistaken when I said this !

When I was diagnosed in 2008 he automatically tested my sister who was not a match and that was the last time he mentioned it as a serious option .

I am up to Kings next week after 4 cycles of Velcade which isnt having a whoopee doo affect on my paraproteins so it will be interesting to see what happens next ! If we can get the buggers on a downward trend it will probably be a second auto sometime in the summer .
Best Wishes
Sandra xx

[DebsParticipant]

Good luck for next week Sandra, will be thinking of you and hoping those blighters have come down more than they've gone up!!!!

Love
Debs x

[shirleyParticipant]

Did someone mention my name ha ha, hi Sandra,my name is Shirley,i had an allo transplant back in December,i'm 45,43 when i got diagnosed with mm,i had the allo transplant on reccomendation of my consualtant. The healing process has been slow and very tireing,you find you sleep alot,but as the saying goes while your sleeping your healing,i have had a few weeks were i felt quite low,but i think i've turned a corner and starting to pick up quite nicely The hospital i'm with is Plymouth Derriford,its a brillant hospital,i've had no bad experiences,the nurses and doctors are terrific.At the moment i'm taking about 5 differant tablets,my appetite has been pretty poor,and i'm just starting to pick up with that not much but its a start,i can sleep for Briton ha ha,. I do hope that if your going to have one or someone you know is going to have one,that it all goes well,please don't be afraid to ask me anything i'll be glad to help,take care for now Shirley x x x x

[SharonGParticipant]

Hi Sandra

Well as you know I had mine done last year in February 2010, I was 39 when I was diagnosed and I decided to go straight for the allo (bull in a china shop approach!) so was still 39 when I had my transplant. My feeling was the younger and fitter I was surely gave me the best chance! Also only having the one brother who turned out to be a match just seemed to indicate to me I should go for it! My consultants mentioned it fairly early after diagnosis, while we were discussing sct's. I don't think he expected my brother to be a match though and only discussed it briefly. I remember I was on the day unit having my pamidronate when he came to tell me my brother was a match!
Oh well I relapsed in December and am about to start velcade, even though my paraprotiens and lightchains are ok I have further bone disease.
I firmly believe if I had just had an auto sct I would have relapsed quickly so would have been going down the allo route anyway!
Take care
Love Sharon x

[sandraParticipant]

As usual gang a very mixed bag with different areas , circumstances and results . We certainly didnt get ourselves a predictable disease did we ! Thanks everyone its interesting to see the different journeys . Good luck and best wishes
Sandra xx

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