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Colin

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Colin
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  • Glad its going ok so far. I never got any answers as to why it had comeback after such a long period. I had done an intense job for a 3 month period before relapse but the experts doubted that it was the cause. I felt tormented by the fact no one could explain a unique situation. None of the Doctors knew of anyone who had…
  • Hi Beaglegirl. I posted a few years ago on this forum because I had relapsed into AML after 4.5 years. I had to have the chemo and bone marrow transplant again. 5 years on I am still in remission. Mentally I found it really difficult feeling you are the only person to ever relapse after such a long period. Obviously 4.5…
  • My liver still hasn't settled down. It's now only reading about 73 instead of 45. At times it's been 10x the recommended level. I am told it is GVHD and not to worry. I hope your liver problem is something similar
  • I'm pretty good. Still have some GVHD but my specialist says I have the "Goldilocks" amount. My liver is slightly inflamed but most of the symptoms are negligible. It's definitely a slower recovery this time. I never went on this network in 2017 as I felt my story was negative and I didn't want to scare people who were…
  • Hi Jane. I've done a 2nd transplant for AML and I'm still here. Diagnosed in 2012. Transplant from an unrelated donor. Perfect recovery, or so I thought, until I relapsed after 4.5 years. My specialist suggested I go for a 2nd transplant from the same donor as the first one had worked so well. This time they gave me the…
  • I lost a load of weight about a year after my transplant. My consultant said it was GVHD and it would sort itself out in time and not to worry. He also said keep eating. Good luck.
  • Thanks Steve. Well done for looking after the forum and giving something back. I never posted in 2017 because I felt my story when I replapsed was too negative and I didn't want to scare people. I did get a decent amount of GVHD first time around ( if there is such a thing ) - mainly skin rashes. It took me around 18…
  • Hi Jane. I nearly 3 years post a 2nd transplant for AML. Hope you are still progressing well. Colin