Hi, I was diagnosed with Acute Myeloid Leukaemia back in early September NPM1 and FLT3+. I have had 3 rounds of chemo and on January 26th had a stem cell transplant from an unrelated donor.
I am currently at day 46 and still feeling really tired and just slow with everything. I have so far been a fast recoverer and was released from hospital just 2 weeks after the transplant as all was well.
I’m 31 and really keen to start getting my life back but know this is a long journey. I’m still having food problems and nausea is a constant.
Is anyone able to share their experiences of this process? When things started to improve? What things started getting better at what point? Any tricks they found to getting through this process?
I have had some mild Graft-versus-host-disease and blood tests have shown some chimerism so they are going to reduce my ciclosporin starting day 50 (currently 125mg twice a day)
Thank you very much, 
Hi @JimmyC gosh a lot has gone on for you.
I am not a medical person but my thought is that you and your body have been through a lot medically, emotionally, thoughtfully, physically and practically etc.
Perhaps it will just take as long as it takes for you, slow and steady wins the race and all that, baby steps and small progresses.
I get to one lamp post one day and then a few days later the next lamp post down the street and so on.
My downfall is feeling a bit better, then overdoing it and going back to Step one. It takes a lot longer to recharge my battery than to deplete it.
Look after yourself, celebrate the little wins and be ever so kind to yourself and please keep posting how you are doing.
Hi @JimmyC
It’s good to hear you’re on the other side of the Stem cell transplant process now, and that you’ve done alright so far - that’s great news. The worst is hopefully behind you now, and the rest of your journey will likely be recovery (with some ups and downs!) Really pleased to hear you are alright though.
I had a sibling donor Stem cell transplant for Acute Myeloid Leukaemia in Jan '21, and found the process much rougher than you by the sounds of it. Mind you, I was 51 at the time, and was very sensitive to the chemo. I lost a lot of weight, had terrible gut mucusitis, and had sepsis twice, resulting in some heart damage (which I have fortunately mostly recovered from.) I was in hospital for 6 weeks for the transplant itself.
Once I got home I could barely walk because my leg muscles had deteriorated so much, and I was so exhausted I spent much of each day on the sofa. But I think that is normal - it takes time for all your blood cells to grow in number, so lack of red blood cells makes you extremely tired. Eat lots if you can, and please do just rest when you are exhausted, and have a snooze. Things will improve on this front, but it will likely take weeks and months
However, I didn’t suffer any Graft-versus-host-disease - my brother was clearly a good match - and one other thing which stood me in good stead was that my husband had to go back to sea for work 5 weeks after I got home. I therefore had to be walking adequately to exercise our dog, and I to manage all the home tasks like driving son to school, mowing lawn etc. So as soon as I was walking well, I started exercising daily, until I built it up to a full workout - about 9 weeks after getting home. And from that moment I really felt my old self again.
However, I did encounter some ups and downs. After about 6 months at home, and a long time off the cyclosporin, viruses that were lurking in my body decided to come out to play and reactivate while my immune system was low. I think this can be an issue for a lot of people. The Epstein Barr virus (which causes glandular fever, and after Stem cell transplant, can cause another cancer called lymohatic proliferative disease) made me very tired again for a couple of months, with a sore throat, until levels got high enough for treatment with Rituximab (a chemo) by weekly drip over 4 weeks as an outpatient. That sorted it though.
I then got shingles twice from the chicken pox virus I already had (so I’m now permanently on Aciclovir.) Shingles is surprisingly nasty. And finally, I developed C. Difficile from the antibiotics upsetting my stomach for so long, and wiping out my good bacteria, allowing the C.diff bacteria to proliferate and cause ulcerative colitis. This was actually a good thing in the end, because it made me ask to come off the antibiotics, which they do actually allow these days.
Other people have problems with CM Virus, but as I don’t have that in my system, I can’t comment on how that can manifest itself. But it’s useful to be aware that these viruses (and sometimes bacteria) can cause a few bumps in the road a bit later.
I also had to have two donor lymphocyte infusions to sort out 84% t- lymphoctye chimerism - but that was just a quick drip each, and it worked.
Once I was over the C.diff, I was ready to go back to work. That was one year and four months later. BUT I could have actually tried to go back 6 months before that, because before the C.diff I felt well enough - but because of the pandemic, I was instructed to shield. And I went on to develop the C.diff anyway, which would have been a No No for working with vulnerable people, as I do, so just as well I didn’t return to work earlier.
A confession: I tried full time work, but after a few months, I reduced it to 3 days a week.I’d been too keen to prove I was superhuman, but I was actually sleeping my free time away in exhaustion. But I am 53 now , so I don’t have the youthful energy you will hopefully get back, and previously I had been working part time for years because of kids, so wasn’t used to FT. What had I been thinking?!? I do actually feel more energetic now, but I’m staying at this level of work - my health is more important, and we can just about afford it.
And now, @JimmyC, I honestly feel completely normal health-wise. I often forget all this has happened! So it really is possible that you will be in a similar place at some point. Everyone has different hurdles to get over though, so don’t be disheartened if something different needs tweaking (lots of people have Graft-versus-host-disease issues that need treatment) or if things take a bit longer. And it’s possible to be back to great health even faster. I’ve heard of people taking up their long distance running again after 6 months. It is so individual, and takes patience - and a bit of tolerance for these unexpected hurdles that get thrown up occasionally.
It sounds like you are doing brilliantly though! You are made of stern stuff to get through all of that so well.
Wishing you the speediest and smoothest of recoveries so that you can get on with your life once again. I’m so sorry you developed Acute Myeloid Leukaemia at all, let alone so young. It’s particularly cruel for young people.
Take care. X
PS. Sorry it’s such a monster-sized post, but I wanted to give you as much info as possible.
Hi JimmyC
I was diagnosed with Tabulated Cell Lymphoedema at the beginning of 2020. Went in for Chemotherapy (R Chop) February 2020, for total of six months. Had couple of infections along the way but okay.
In remission awaiting on blood donor match which finally came through non-related from Germany after eight months.
My transplant took place at a different hospital. All went swimmingly. like yourself and I was out back home in less than three weeks.
At first the lack of energy and fatigue made me very depressed for sometime I was so bad that just having a shower and shave was enough to make me lie down on bed for 30 minutes to recover.
Previously before diagnosis I was very fit for my age, didn’t drink or smoke and was into cycling. So the way I was feeling post transplant was shocking to say the least.
I am now one year post transplant and although I develop mild Graft-versus-host-disease after six months I feel my life is getting back to a ‘type of normal’.
There are certain impact sports in was into which now will be out of reach to me but I’ve joined Tai-Chi classes and getting out cycling a lot more looking forward to the Spring.
What I’m trying to say is “It Takes Time” and I can’t empathise that enough.
Doctors were always telling me your doing fine and it will take time.
I on the other hand because I was used to being fit and always on the go thought I could show them otherwise. That didn’t happen.
You ask for tips to help fatigue recovery.
My tips are.
a) Eat well
B) Drink Liquid at least 2 Ltrs daily
C) Do as much exercise as you can manage but NEVER overdo it (listen to you body)
D) Manage your thoughts and feelings in a positive way. Your mind is a very powerful weapon for use in recovery.The fact your on this Forum shows me your on the right track.
Kind Regards
Tin Tin
Hi @JimmyC
I was diagnosed with Acute Myeloid Leukaemia march 21 had my stem cell transplant in October 21. I was struggling to eat after the transplant and felt pretty rubbish until Jan 22, just before the 100 day mark.
Since that point, I’ve never looked back, living a normal life and doing more than I was before my diagnosis. Fortunately, I’ve not had any graft v host issues.
Now on 5 months between appointments with the consultant.
It takes time but you will get through it.