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Are there many out there who are waiting to hear about a donor to have a second Stemcell transplant?

STake2STake2
in Pre-transplant
I am in a state of anxiety at the moment waiting to hear about a donor so that I can have a second stemcell transplant. I have AML and have been being treated with chemo again since mid 2014. Are there any others out there?
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Answers

  • Dieseldrinker62Dieseldrinker62
    Hi STake2,

    I know it's a couple of days since you posted this question but I'm sure I've heard of others on here who have had two bites of the cherry. Hang in there and someone who has gone through two transplants will no doubt post a reply to you.

    Anyone out there who has been through this scenario please let our friend know how you got along and how you are now. Cheers,

    Steve
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  • SallyVSallyV
    Hi STake2, I have had two stem cell transplants for Aplastic Anaemia/MDS. I understand it is a worrying time, I too was very anxious when my first one failed (had 1st in November 2011). I found it hard that I couldn't really do anything myself about the situation but keep faith in your doctors, they are the ones who have your best interests at heart. My second transplant was on 8th June 2012, honestly the 5 months prior to it were the toughest of my life and I had real problem with the steroids I was on along wit GvHD, BUT they did find me another match. Although then decided to reapproached my original donor. He donated a second time but that time they took his cells in a different way, through the operation procedure. I had more chemo etc... This second transplant was different to the first, it worked, and I felt like it was easier than the first. I don't know if that is because I knew what to expect that time, that I had much more knowledge about the whole thing or whether because it worked it felt better. I didn't have the same GVHD (just mild on my skin) and I went back to work about 7 months later. Now I' m 2.5yrs post second transplant and my bloods are absolutely normal. I never thought I'd be saying that.

    Please stay positive, it is so important even in your darkest days. If you want to message me then please do.

    Sally
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  • STake2STake2
    Thank you Sally for taking the time to write. It has been very helpful.
    I am waiting to have a second transplant from a different donor this time and it is an anxious time.
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  • SallyVSallyV
    I think the waiting is the worst bit, certainly for your mind. Once the treatment/second transplant starts you kind of just get swept up in it all. I hope you do not wait too long but in the meantime, I know it is hard but, try and stay as well as you can, get lots of rest, stay warm and bug free! It will help you be in a stronger position for the treatments ahead. I found a thing called mindful meditation, which was advised by my macmillan psychologist, helped a bit. it's not actual meditation, rather it is just focussing your mind a few times a day on something like your breathing to give you a bit of respite from the anxiety. Google it.
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  • STake2STake2
    Thank you Sally.I have tried some mindfulness as per my psychotherapist too but at times feel it is not enough ....wonder if I am thinking too much! I feel that I am in a dreadful position on the edge of an abyss ..... Wondering whether to go ahead with the donor that will have a lot of risks or to just continue with the chemotherapy that I am having at the moment.....but I know that will stop working at some point, but keep going with it as it would be without such risks but not give me very long once it stopped working. The advantage of the second transplant is if it works well, a cure and life, which I am trying to weigh up against the disadvantages of going ahead with the transplant and more toxic chemotherapy and ending up very ill and lots of complications or worse. No one know the answers and it seems a lottery or gamble as to survival. Some say it's a roll of the dice. I have been flipping coins today after clinic and more info!! So far it's 3:2 on for the transplant! Deep breathe!
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  • Dieseldrinker62Dieseldrinker62
    I know the transplant seems like a big risk, particularly as far as complications are concerned. I guess you need to talk it through with your medical team and share your concerns with them. They can probably give you more statistics than we can about the risk of complications. You then need to balance that risk against the risk of continuing chemo without the transplant. How long could that continue and how effective will it be long term?

    It's easy for me to say go for the transplant, but in my case whilst I've had GvHD it has not been so severe and has just about gone away. I now feel like I'm back to where I was before my illness began, but I know how much it's taken to get here, mentally and physically. But you have been through a transplant once and know what it's like to go through it, and since it was unsuccessful nobody would blame you for being nervous.

    My thoughts are to take all the advice you can get about both options and weigh up the pro's and con's. Hopefully you can be involved in the decision and ultimately I hope it will be the right decision for you.

    Whatever decision you make, we'll be here to support you through your treatment and keep your spirits up as best we can.

    Steve
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  • STake2STake2

    Thank you for your helpful comments Steve.

    I have spoken with the medical team more about both options, and family.

    I really appreciate both your and Sally's input as both of you have had experience too. At the end of the day Yes there are risks and complications with a transplant, but at the end of the day the over-riding factor is that a transplant is offered by the donor to give us LIFE and that is really the only hope for a Life of quality. So I have been taking things very easily over the last few days as well as giving things a lot of thought. I am very appreciative of both you Steve and of Sally. It is the long waiting game that I think becomes agonising and yes the fear of it not working again and of GvHD.

    I am not looking forward to the chemo and roller-coaster ride of the next year but as the saying goes "You've got to be in it to win it! " I must admit it has been a very dark time and trying to be positive has not always been easy. With the GvHD hopefully some GvL will happen too.

    I have spent some time "away from the Cancer" so to speak ....really trying to relax and to gain some respite from the anxiety by concentrating on breathing and other things. Even managing to get a bit of humour and excitement into things again.

    So thanks for the support and understanding. I now wait for confirmation re:the donor before progressing.
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  • 3xBMT3xBMT
    Hi hope things are OK. I'm a 3 time bmt patient. Happy to talk about my experience if it helps.
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  • susiesusie
    Hi, new to the site but noticed your question, although it is from January, how have you gone on. Where abouts in the country are you/which hospital? Did your first transplant fail? We understand in our area my child could only have one transplant but obviously this can't be true? Look forward to your reply
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