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Hi my name is Philip and I am a new member. I am 67 and in good health apart from the fact that in March I was diagnosed with MDS with the prospect of a stem cell transplant as being the only way forward. So after 2 chemo trial sessions in hospital, prolonged by infections I was set for the transplant in October only to have it delayed by a liver infection which resulted in another 6 weeks in hospital. At present I am home again but in self imposed lockdown to minimise risk of another infection. All depends on the elimination of the liver lesions but I have a pencilled date in December for the transplant to proceed. The unrelated donor was identified by Anthony Nolan so unusually I am hoping that I will be in hospital over Christmas.
I have found the stories told very helpful in coming to terms with the whole procedure. Keep up the good work.

Comments

  • Hi Philip
    I was diagnosed with hypoplastic mds September 2016 and had a stem cell transplant in February this year. You are doing the right thing with the lockdown. It's short term exile to give yourself the best chance. I too have found this site so helpful ans supportive. There's always someone who's felt how you're feeling or been through what you're going through.
    Everything crossed for you x
  • Hi Bernie,
    Thanks for your support. It is good to hear from someone who has been through the experience. I hope you are making a good recovery.
    Thanks
  • edited November 2017
    Hi Philip
    I've been incredibly lucky throughout my treatment and recovery thankfully. I've avoided the side effects associated with chemo and stayed infection free (apart fron an early one related to my hickman line). I had a little blip as my chimerism dropped from 99% to 53% post transplant which wasn't brilliant. It crept up a little to 55% so my consultants at the Christie decided a donor lymphocite infusion (DLI) was the best course of action. I had this on 3rd October and again so far I've avoided any side effects thankfully.
    It will no doubt be a different Christmas for you this year but sacrificing one away from home will be well worth it.
    Keep us updated
    Bernie xx

  • I should add that needing a DLI isn't unusual x
  • Hi Philip and welcome to the forum. I'm one of the community champions here and a transplant patient myself for ALL almost 5 years ago. Apart from the Anthony Nolan team here we are all either patients ourselves or relatives of patients going through transplants. The beauty of that is that we all understand what you are going through, though we sometimes have a slightly different experience as we are all unique.

    As Bernie rightly says there will be others here who have shared your experience, or may be going through the same themselves. They know how you feel and that is hopefully a reassurance to you that you are not the only one that these things are happening to. Being able to share your thoughts and concerns with people who understand is very useful and reassuring.

    I hope you're feeling well at the moment and that the delay in your transplant hasn't unsettled you. You need to go into the transplant as well as you can so I hope they have got your liver infection under control and you're ready to go when the time comes. Use the time that you have at home to recuperate and build up your strength as best you can and do your best to avoid any other infections, particularly coughs and colds which are abundant at this time of year.

    Please keep in touch as your transplant moves forward and let us know how you get on. We're all here to support you any way we can.

    All the best,

    Steve
  • Hi Steve
    Thanks for your welcome and message of support. Finding your forum has been a big positive step for me and I will stay in touch.
    Thanks
    Philip
  • Hi Bernie
    That was good to hear that things have been going well for you. I needed that. Keep it going that way.
    Thanks
    Philip
  • Hello Philip

    Welcome to the forum. Please do not hesitate to post and ask all manner of questions as you progress through the transplant and post. I had AML and underwent a transplant in February 2016, whilst I don't know about MDS specifically I have found most patients experience similar emotions, worries etc.

    Good luck with the transplant, I have everything crossed you remain infection free and are able to undergo the transplant.

    Best Wishes

    Rachel
  • Hi Rachel
    Thanks for your welcome and support.
    Thanks
    Philip
  • It seems that the liver lesions have shrunk but not enough, so my transplant is delayed again until mid January at the earliest. Frustrating but I recognise the risk, so it will be a very quiet Christmas at home.
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