Hello, I am new here I thought I would introduce myself. My name is Alex and I am currently living with Acute Myeloid leukaemia, diagnosed in Nov 21. Post 3 cycles of chemo and now awaiting a stem cell transplant. I am just wondering does anyone have any experience of stem cell transplant and could give me some advice?
Hi @alexlawrenson903 a great big welcome and yes, there is a long thread on here under Awaiting or considering or had a stem cell transplant, a place to share here, plus a lot of other posts. It is under Going through treatment.
There is also information on the Blood Cancer UK website, under Understanding blood cancer and then Blood cancer treatment types.
I think anything that is unknown is very scary and isolating, we are here for you and if you would like to talk to someone the Blood Cancer UK support line is also there for you.
I look forward to hearing more about you, look after yourself and be kind to yourself I expect you are on an emotional roller coaster
Hi @alexlawrenson903. There are so many people on here who will be able to share their experiences. @Erica has pointed you in the right direction. If you have any trouble finding the thread just let us know. Glad you found us
Really, really sorry to hear you were diagnosed with Acute Myeloid Leukaemia, and have had to endure the chemo etc. It’s such a frightening and lonely experience, isn’t it? Especially in these covid times, when visitors have not been allowed.
How are you doing, physically and mentally? The chemo can really take its toll, and the whole experience can be incredibly traumatic. I hope you have support and are finding ways to manage your feelings and the chemo after effects.
I was diagnosed age 50 with Acute Myeloid Leukaemia, in Aug 2020. I had 2 rounds of daunorubicin and cytarabine, and then a sibling Stem cell transplant in Jan '21. I spent 4 months in hospital, over 3 admissions.
It’s over a year since the transplant, and generally, I feel great. I have had some re-activated viral infections (shingles, EBV) and C.diff, but nothing too terrible to complain about. If it weren’t for covid and some lingering, recent tummy troubles, I’d be back at work and feeling pretty good, actually. I’ve been surprised at how quickly you can recover from such intense treatment.
As Erica has said above, there are lots of us here who have had transplants, and there’s a thread about our experiences. But please do feel free to ask me any questions here if you can’t find it, or there’s something else you’d like to know. Obviously, everybody’s experience is individual, but it does help to know what the range of experiences is, in order to prepare yourself, and to understand aspects of your recovery.
Once again, I’m so sorry that Acute Myeloid Leukaemia has intruded upon your life, but you’re about to have a fantastic treatment for it, and hopefully you’ll find lots of support and useful info here.
All the very best.
Hello and welcome @alexlawrenson903, thank you for joining the Forum and really hope you find the support you need. Along with the amazing community on here you are most welcome to call or email the Support Services Team for information, advice and emotional support How to contact Blood Cancer UK | Blood Cancer UK. We have other threads on the Forum which may be useful to look at regarding stem cell transplants so worth having a browse. Otherwise, our health information about stem cell transplants is really helpful: https://bit.ly/3teXA5z. Do you have a Clinical Nurse Specialist that you can talk to? It is always good to write any worries or questions down before you see your treatment team. Take good care and do call if you would like to talk. Kind regards Gemma
Hi, I was diagnosed with Acute Myeloid Leukaemia in March 21 had 2 rounds of chemo then I had a stem cell transplant in October 21. The transplant it’s self is the easy part, the conditioning treatment prior to the treatment is not great. I was ok until I had the rabbit cells and felt terrible for 24 hours. After the transplant I got sepsis and had kidney failure and ended up being supervised by icu but that was the worst that happened. Since then I have recovered and I’m already back working and living a normal life. Everyone reacts differently, fortunately I didn’t get any Graft-versus-host-disease however my taste was bad for months and I struggled to eat certain foods. There is still a couple of things I can’t eat that I use to love. I was in for 4 weeks and 4 days but it was a good 3 months after I got out before I started to feel anything like normal. Best advice is listen to your body if you are tired just rest if you feel good go for a little walk etc but don’t push yourself too much one day then feel crap for a week. Hope it goes well and I wish you a speedy recovery
I’ve just asked how you were doing on another thread so don’t worry about answering that. It sounds like it has been a very full on year. I’m sure sharing your experiences will help so many others on the forum. Great to hear you are back doing things you did before diagnosis
Just replied to that. I will add though it wasn’t easy spending 17/21 weeks in hospital in isolation and no visitors. But happy to share anything with people going through the experience of it helps.
I can only imagine! Must’ve been so difficult! I wondered if you were allowed visitors. So hard for you and your family.