[coffeyParticipant]

My son has been offered a transplant and the doctors have said he has 1 in 3 chance of survival.  He is now reluctant to have the transplant.  Can anyone advise on which way to go?

[rebeccaRParticipant]

Hi, Are you referring to an allo transplant? a full allo or a tandem transplant (of SCT followed by a mini Allo) or are there health complications that make a stem cell transplant riskier? They are all different so perhaps if you give a bit more background info re age/health/ mm status etc someone may have been in a similar position to share their experience. I would also suggest you phone the helpline and chat to one of the wonderful specialists. Good luck.
Rebecca

[coffeyParticipant]

My son is 35 and has a lung problem and smokes.

[rebeccaRParticipant]

Ok and he has myeloma also. Is the transplant an SCT i.e. They will harvest and collect his own stem cells and transplant them back in after the high dose therapy or is it an allo transplant i.e. They are using donor stem cells from a close relative or a stranger where there is a good match – at 35 he would be eligible for an allo I would presume. What status is his myeloma – is it high risk or standard risk do you know? As this may influence the options he is given. When you go forward for any transplant you have to meet the criteria for heart, lung, kidney health. I had kidney problems which make me ineligible for an allo transplant but I opted for an SCT with a 20% estimate risk if death 1 in 5 – needless to say all went well for me and am over 3years in remission to date.
Rebecca

[coffeyParticipant]

We have been told it is high risk and the cells are from a donor which they have already found.

[rebeccaRParticipant]

Hi – he is having an allo transplant then. If you look through the under 50’s section over quite a time period you may find useful insights into the Allo experience/dilemmas faced. I believe if you speak to the helpline they can put you in touch with someone who has gone through the experience – you may like to ask some questions on the under 50’s section as it is this group that has walked the talk. If you search through the American myeloma beacon forum you will find lots of interesting perspectives/experiences of undergoing an allo transplant. Best of luck
Rebecca

[greg777Participant]

Hi Coffey,

I had an allo transplant last year. I was 37 and in pretty good health at the time. I found it really tough but after about 8 months recovered and am pretty well again now.

I don’t think anyone can really tell you what to do. Everyone is an individual and in my experience everyone tends to react to it differently. I suppose being in as good a shape as possible is probably helpful. I lost a lot of weight and strength so maybe my built-up reserves helped me get through it? But I know I had a fairly rough ride in comparison to some I know who sailed through (GvHD was the main problem for me – this is where the donor cells start attacking your own healthy cells – it can happen anywhere, mine was the skin, liver and gut). And then there are some I chatted with on other forums who didn’t make it so they are not here to give you their opinion.

All I can really offer is take your time, listen to the experts, talk to as many people as you can who have had to make this decision and then let your son decide what is right for him. He is really the only one who can decide what he wants to do. The risks are serious and real, the benefits are potentially amazing but largely unproven and unpredictable. You might live very well for a long time without an allo. You might not. The allo might not make any difference. The allo might be the best thing you ever do. It might kill you off early. I suppose what I am saying is I don’t think there is right or wrong in this – just do as much research as you feel necessary, listen to the doctors treating your son as they will know his specific circumstances and then whatever you decide to do, just have confidence you made the decision that was right for you and go for it (whatever that “it”is).

Wishing you all the very best and please let me know if you have any specific questions.

Greg

[pamnParticipant]

1. Hi Greg .  I was glad to read your response to Coffey as I too have the same decision to make about an allo transplant. My initial own stem cell transplant is in 2 weeks but the Doctors are recommending a Tandem allo around Christmas. I have great reservations as the statistics don’t seem good and the after effects sound gruelling if you are unfortunate to have them . As you say though it’s a dice and for some it’s great and others not so. Are your subsequent problems manageable with drugs or do they change and  you have to constantly adjust to new ones? My head isn’t for it at the moment as I do enjoy relatively good health with both the Myeloma and ridden the chemotherapy side effects well so feel I have a good quality of life and nervous about the odds of the allo. I’m preparing as much as I can for the first transplant so hope it stands me in good stead. Thanks again . Also the best of luck to Coffeys son as I know how difficult it is to make that decision. Good luck to you too. Pam

[greg777Participant]

Hi Pamm,

Glad my post was of some use. I think your approach is right – focus on the first SCT – that’s what I did. To a large extent the best thing to do is take one step at a time. Re:medication, I am lucky that I am now only taking 2 tablets a day – for penicillin, which is for life after an allo, so it really is no bother. At its worst, I think I was on about 20-30 tablets a day for a variety of things although to be honest a lot of it was a blur. Looking back now, I feel incredibly thankful that I have regained the health that I had pre-transplant, and to all intents and purposes I feel as well now as I would want to be. It was a rough ride to getting where I am though and the process has changed me psychologically too, so I would encourage everyone to take the time to think things through and decide what is best for them. And I only think of statistics as just statistics. They are helpful but they can never tell you outcomes for any one individual.

Wishing you all the very best on the road ahead.

Greg

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