Hi there,
I echo Greg and am sorry to hear that your chimerism has dropped and I really hope there’s a straightforward reason for it. Fingers crossed for a good BMB result but when they know whats going on in your marrow it should give some pointers as to what needs to be done to rectify the problem.
We’re all here to support you however we can so please keep us updated as things develop.
Best wishes,
Steve
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 options are limited. I’m told this does work, but we’ll see.
Hi Cellbydate,
I am so so sorry to read your news. I have zero experience of your situation so I don’t think I can help in any way. I have come across people who have had FLG IDA and they have had success on it and so I really, really hope that you will find the same too.
My heart goes out to you at what must be an overwhelmingly difficult time.
Sending you loads of warm wishes,
Greg
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
Hi again Cellbydate.
I’m so sorry to hear that the AML is back which must be so disappointing and worrying. There are several patients here who have relapsed and a number of threads regarding the treatment to get them back into remission and then undergo second transplants. Somebody out there will have experienced the same as you now face and those threads may be of help.
The Anthony Nolan team, particularly Hayley will be able to help however they can and we will be here to hold you hand and support you all the way.
I know it will be hard but hopefully you can go into this with a positive state of mind and a determination to get better again and get a successful outcome.
Best wishes,
Steve
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
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 show promise and it’s thought to be the right way to go forward than maybe there can be exceptions? Seems like a huge long shot to me.
Line is in and ready for final tests before chemo end of week, still not sure how I feel about it all, mostly like it’s all a waste of time but am trying to think that somebody somewhere has to be part of the percentage that has success. I just pray I make remission, never had any issues the last 2 occasions and went straight in but almost think that is giving me a false sense of security
Hi Cellbydate,
I’m really pleased to read that you have had a good chat with the medical team. I’m really hoping that this is a turning point and gives you a way forward. I’m really hoping that things go well and I’ll be thinking of you.
Greg
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 going
Anyway fingers crossed all, i need this to work, I am supposed to be getting married in 6 weeks so it’ll be a marriage between treatment if I can time it right!!!
Hang in there, the GvHD can be a nuisance and the itching is hard work. My top tip is buy shares in E45 and start having a long soak in a bath every night with E45 bath oil in it. That really soothes the skin and helps relieve the itching.
I’ve got my fingers crossed that your wedding falls between treatments and that you’re well enough to enjoy the big day.
Best wishes,
Steve