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Cellbydate
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Thanks for the support Greg, on day 3 of chemo today, had to put be on steroids as gvhd has really kicked in on skin now, proper gvhd not what I thought I had before, typically too late to help me out this time but hopefully a good sign if they can get me back in remission that it will show it’s head and try to get the GVL…
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Well had a good chat with one of the doctors today about my treatment, and it was hinted that if I can reach remission well, do well with DLI and keep that going for a while then the future may give me the option of a transplant. Which I find confusing as I understood as I relapsed far too early for that, but maybe if I…
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Hi Steve thanks for your message as far as I understand I’m not going to r given the chance for a second transplant, unless something changes in the time I am being treated so it’s soley DLI which makes me very nervous
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Hi Christine, I found out today that I am following in the same footsteps and again fighting aml. I am a little closer to transplant, at just over 4 months, so it’s a little trickier, and I won’t be allowed a second transplant unless something amazing happens. But am starting flag Ida this week followed by DLI so have read…
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Thanks Greg, I’m gonna give it my best shot! They said if I get into remission it’s probably 20% chance of cure / lasting remission And I’ve not had flag Ida before I had a trial drug pre transplant which I am not sue if I regret now
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I’m afraid it’s not good news, the aml is back with 30% blasts I am being admitted to hospital tomorrow to start 2 courses of Chemo which FLG IDA followed hopefully by DLI. I’m in shock and can’t believe it to be honest, not really feeling much positivity about the future. I don’t qualify for another transplant so my…
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Thanks Greg, I think I read somewhere that your chimerism dropped to a similar level too after being at 100% at 100 days, which is what mine was, the consultant did seem to think that although there is a chance it’s relapse there is equal chance it’s just my cells fighting back, but not so healthy ones hence the low…
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Well not good news at the hospital, my neutrophils dropped again to 0.4 and my platelets although still ok went down to 156. The worst part is my chimerism has dropped from 100 to 88% so I am having a BM to see if it’s my cells or leukaemia cells. I just feel numb at the moment but sure it will sink in soon
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Hi Hayley, thanks you, I think the thing that really troubles me is, is a fluctuation of the neutrophils as much as mine normal at 4 months post transplant, but I guess its a case by case which is why nobody can really say or would like to say, which is fair enough. I will speak again to my CNS tomorrow about seeing…
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Hi Hayley, Thanks for your reassurance, the rash has stayed less angry, still itchy at times and seems to have spread to my trunk where it really itches and looks more like little red dots or goosebumps. I think the problem with me is that I always need to know too much, and my consultants and nurses are fantastic but…
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I just re-read my post and noticed that it looks like I swore, it should have said the opposite to heaven! Not **** :)
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Hey Greg, yep sounds just like me, I’ve been like it since the day I was first diagnosed, managed to start controlling it and then the one month where I relaxed and thought, hmm this is actually going well I relapsed! So I am trying to desperately let myself do that again and not think the worst. It’s impossoble sometimes…
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Hi Greg Thanks for taking the time to post, yes I have read your thread and it did give me some reassurance that it’s not necessarily relapse. It’s the waiting between clinic appointments that’s the hardest, which is only a week! I’m also very impatient and find myself wanting to know every possible cause, reason, outcome.…
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Hi Steve I actually saw the dr today and she said that it was GVHD I have it around my eyes and face and a different type which looks like a bumpy heat rash on my chest so I’ve been given steroid creams. I’m already on a small dose of steroid for my stomach so guess that covers that part. I’m glad to have some degree of…
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Hi all, and apologies for not thanking you for your responses earlier. Things have been going well with my levels etc since my first post, the odd small dip in neutrophils to 1.8 but back up to 2.5 after that. However the last few weeks have been more troubling. I am today 4 months to the day since my transplant and last…