I am awaiting a stem cell transplant for Acute Myeloid Leukaemia, currently in remission but consultant has said best chances for it not to come back will be transplant. Thankfully I have my brother as a donor so I will be going in for the transplant itself in about 4/5 weeks. Does anyone have any tips on how I can get there in the golden 30 days or is it just wait and see. Also any tips on how to not loose any more weight I’ve already lost 38lbs through chemo. Also what is the conditioning chemo actually like? My haematologist explained that it can be tough!
Hi there again @alexlawrenson903 I have replied to you on your other post, I hope you get some responses.
I am glad that you have your brother as a donor, from what I hear it usually gives you and your brother an extra bond.
Do you have a CNS (Clinical Nurse Specialist) as usually they are a good starting point for the questions you ask.
All I would say is perhaps you do not really want to catch Covid at this time so you might want to take extra care.
Also every one is a very special, unique person with their own medical history so your medical team know all about you and will treat you as an individual.
Take lots of special care of yourself and please keep posting.
Take care and also
Hi again @alexlawrenson903
I found the conditioning chemo less toxic initially, but then eventually I experienced pretty much all the side effects I had with my original chemo. The whole stem cell transplant experience was very much like a round of chemo. For me, it wasn’t any tougher though. But that was tough enough!
I haven’t heard about a golden 30 days. Is this the period one should hope to be out by? I was in for a week of conditioning chemo and the transplant, and then 5 more weeks after that to recover. I was actually out at 4.5 weeks (in half-way hospital accommodation, because I live so far from the hospital) but developed an infection and had to be re-admitted for 9 days. The consultants said perhaps they had discharged me too early. But maybe other hospitals aim for faster discharge? I was at Derriford in Plymouth.
The dreaded weight loss - an issue for most of us, I think. Eat as much as you can now, if you are able, to put on some reserve weight. I did that, and quite enjoyed eating lots (I was at home for 2 months over Xmas, waiting for my transplant, and fortunately my appetite had returned quickly after the chemo) and the weight I gained was the difference between having a feeding tube and not, I suspect. It’s really worth trying to gain weight now.
Once in hospital, you’ll likely have a fridge, so stock it with a variety of foods you think you might like. Once my appetite goes, I can’t eat anything but fruit (peelable fruit when neutropenic) and ice lollies, so my husband kept supplying me with those weekly. Not great for weight gain though! A nurse did persuade me to drink coke for the calories - and I did strangely like that. Normally I hate sweet, fizzy drinks. People say sweet things seem to retain their flavour better.
A dietician harangued me regularly (but kindly) to drink a special high calorie, fatty drink. I couldn’t bare them - I simply couldn’t swallow them - and so repeatedly declined them. Feeding tubes were mentioned, but it didn’t come to that. I did lose more weight and a lot of muscle, but my appetite came back quickly when home, so it hasn’t been a lasting problem. I would say try to preserve leg muscle though. Squats, if you can. I could barely walk by the time I got home.
I hope this of help, @alexlawrenson903.
All the best.
I was admitted late evening on 3rd august, with conditioning chemo started on 4th. Sc transplant was 10 august (like you from my brother). I think the immune suppressant gave me worst response with sickness and diarrhoea for nearly a week.
I struggled to eat, but found after trial and error I could manage toast, fruit and homemade soups my daughter made and brought in for me. Wasn’t allowed out until neutrophils reached 1. And that was 2 September- 30 days after admission
Was really tough coping with stairs and walking, when home, but stamina gradually rebuilt.
I’m still lighter than I was before all the treatment, but really pleased with how I have responded.
Bizarrely there are still things that don’t taste right even now. Today is day 218!
Good luck, stay positive and eat anything you fancy - healthy eating can return when you’re through the worst.
I really am surprised that after such intense treatment I seem to be doing well. Some of us have had far more issues, but stay positive, know that the staff will do their utmost to find treatment for any problems, and good luck x
I will be admitted for my Stem cell transplant on 28th March, my daughter is my donor. I had a meeting at the hospital earlier this week where I was told to build myself up, as I have spent all my adult life watching my weight I am enjoying my food while I can!!
Not long now @Suey, yes, good advice to build yourself up.
Great news that your daughter will be your donor, you will be sharing another special bond with her. Donors, especially familiar ones, are often forgotten about in your transplant journey and by others, but they are really selfless stars.
Enjoy building your self and look after yourself
Thanks for your good wishes.
I am so proud of my daughter, she is only 22 and in her final few weeks of a degree course and hasn’t hesitated to help, I don’t think she appreciates what an amazing thing she is doing.
I am keeping a grip on my nerves and just deciding what to snack on before bed!!
Good luck, @Suey, and enjoy all the eating! I also found that to be a little silver lining in the lead up to my stem cell transplant. Let us know how everything goes.
All the best.
That is lovely that your daughter is your donor! I will be slightly behind you they have told me 4/5 weeks and then it’s new cells day. I wish you lots of luck and hope everything goes well. I’m just trying to eat all sorts to fill me up until the dreaded time of not being able to eat. I’m quite a sickly person with the chemo.
Awesome news @Suey . You have been given very sage advice. The transplant procedure and the follow up actions can be very draining, but that’s normal and anything you can do to mitigate against it is all to the good. I wished that I’d got up and walked about more as when I came to go home I was very weak and for a few days in hospital I could eat nothing but jelly and ice cream as my throat was too sore. Well done to your daughter on being a donor, it’s an amazing thing to do for someone.
All the best @Suey with the proposed plans
Just like my daughter @Suey who is also 22 , came back home during Covid and has been a brilliant support for me too following my diagnosis .
I had my stem cell transplant in November 2020 after a diagnosis of Acute Myeloid Leukaemia in July 2020. I had 2 rounds of chemo leading up to the conditioning treatment a week before my transplant. I found the conducting treatment did leave me weaker than I previous chemo but happy to report they let me go home just over 2 weeks following my transplant. I lived 10 mins by car, so very close to ward and we agreed my husband would take me back every other day for checks but I managed it and would of gone back every day if it meant I could remain at home. I did really struggle with hospital food and due to Covid and risk of infection as no neutrophils, couldn’t have food brought in. I lost 10kgs (re gained that again now), pre transplant I found ordering food from the halal, gluten free, vegan menus helpful as food was tastier and I could stomach it better than standard menu choices that were very bland e.g mash. When I couldn’t face ‘solid’ food I had the tinned Heinz soups on offer and found I could keep that down most of the time…if I did vomit I would wait a few minutes and then try again. I would order custard and then add an ice cream to it to push up calories, but again easy to get down. I found I couldn’t drink tea or coffee due to smell and taste but I was ok with Ribena (made with boiled water post transplant), and Horlicks, (I had every flavour).
i really pushed myself to drink at least the recommend three jugs of water each day. I also ate Ice lollies everyday especially if my mouth was sore.
Unsurprisingly a lot of these items now I can’t eat as reminds me of hospital. My advice is to try everything you can and if you hit on something you can keep down, look for ways of fortifying it to push those calories up. Stay focused on ‘getting it done’, that’s how I viewed my admission. It’s the hardest thing I’ve ever done but I’m nearly 17 months post transplant now and doing ok I wish you well and send you a hug
I would suggest all the contributions offered here so far are spot on.
My strong advice to you is to eat as much as you can pre-graft. I ate anything and everything - like all the things you normally shouldn’t (chocolate, chips, red meat ect). Think of a bear getting ready for hibernation!
As it was I did manage to put some weight back on and in fact sailed through the transplant without any major issues apart from the usual chemo mouth ulcers.
It was the hot summer of 2013 and I completed the process not on the ward, but in hospital accommodation. This enabled me to go out cycling in London most days as bizarrely I had decided to take up my push bike! I accept the criticism I do push myself BUT the best advice is to listen to your own body. It will tell you if you are trying to achieve too much.
Whilst I found it overall quite a lonely experience as you can see I did not find it too challenging.
It was what unexpectedly came next which challenged me both mentally and physically. The little discussed condition pre-transplant - Graft-versus-host-disease.
1 week today and I will be admitted for my transplant, feeling surprisingly calm! I’m enjoying the preparing to hibernate advice and I am sitting outside (in March and in Scotland!) to stock up on vitamin D and fresh air, I’m an outdoor person and I found the lack of fresh air difficult last time I was in hospital, at least this time I’m prepared for that!
Hi @alexlawrenson903 Thanks for posting - and good luck with the Transplant. I had a Transplant for Acute Myeloid Leukaemia in 2018 and another in 2021 for ALL. I concur with pretty much everything in the replies from others above. Like them, I suffered from altered taste and unappetising hospital food; keep experimenting to see what food you can stomach - sweet things seem easier. Certainly eat lots now, and don’t worry too much about the quality or healthy aspect ! First time round I sailed through without too much hassler and escaped hospital in 21 days, buy second time round it took much much longer. The clue is not to focus on an end date because any bad news (eg a fever or infection extending your stay in hospital) will be a great disappointment to you. Try to accept each day as it comes, stay patient (!!?!), and believe that you are in the best place for your long term health and recovery. Loosing weight is part of the process - don’t stress too much about it - it will all come back in time. The whole Chemo process can certainly be tough and it is different for each of us. But it will pass, and you will get through to the other side stronger and with a brand new Bone Marrow ! Good luck my friend.
Hi @Deborah26 when I had multiple teeth extracted all I could consume was tinned custard and ice cream.
I ran out of tins of custard so sent my husband out on a mission to replenish my store of tinned custard and he came back really pleased with his purchase of 3 containers of Birds custard powder, I just burst into tears. I used them up, over a number of years, but it certainly wasn’t the same.
Thanks for your ideas, look after yourself.
Fantastic that you’re so calm, @Suey. I found the hospital air suffocating too. I used to enjoy being taken down the corridor for various procedures, just so that I could frantically suck in fresh air at the row of open windows!
Wishing you loads of luck for next week.
Hi there Quentin, some sound advise there especially on the end date…for us so many focused on the first ‘100 days’ and the goal of the stem cells being accepted in their new home that many forgot there was another phase (even my husband and my Mother in Law) they were so happy when my husband reached the 100 day mark and the sister cells were working and producing in my husbands bone marrow (which is amazing stuff and certainly deserved a celebration) but we were not done yet! There is another stage to go through - the one we found much harder as Graft-versus-host-disease started to appear but @alexlawrenson903 this isn’t something you should worry about now, just be aware of (I really hope it doesn’t happen to you but just know the signs) and do what feels right for you, at all times. Take care now and good luck, your body is going to do something wonderful and amazing when you think about it.
@Quentin my husband was diagnosed with Acute Myeloid Leukaemia & ALL at the same time in May 2018, was told it was a very rare thing indeed and was difficult for them to diagnose!
It was very pleasant to read how positive you are, I hope it rubs off. And I hope you are well now.
Thanks Lucy. I didn’t know anyone else in the world had had Acute Myeloid Leukaemia and ALL. We are an elite bunch !! Good luck with everything going forward