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AML Post Stem Cell Transplant

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Meldidd Total Reaction Points: 1
Hi, I am new to this site. My very close friend was diagnosed with AML in the summer (he is 45). He just had his stem cell transplant on 11th January. He’s been home for 2 weeks now. I have moved in to his house for a month or so to help and support him. I think I wrongly assumed he would get better and better from then on, but it seems like good days and bad days. He’s very tired. He doesn’t feel ill, only weak. I’m wondering if any of you can give me advice/tips/general info on what to expect over the next few weeks or months. It would be very much appreciated as it’s difficult knowing what’s the right thing to do. Thanks very much, C.

Comments

  • greg777 Total Reaction Points: 86
    Hi Meldidd,
    Welcome to the site. I think you are doing such a great thing for your friend. Your question is a hard one to answer as I have learned that the post transplant period can be really unique to the individual. What I would say is the first 100 days are often the hardest. Many people say it can be like a rollercoaster - lots of ups and downs. You might also hear the phrase 3 steps forward, 2 steps back - that also seems apt.
    I would say your friend is still very much in the early phases. It’s great that he is home but there can be so much muscle wastage when you are an in patient that it takes a while to get that back. Also, a SCT is one of the toughest thing you can put your body through, so fatigue is absolutely normal. But I’m sure you’ll see steady improvement over time. Encouragement for short walks is helpful but also not to overdo it. Myself, I describe it as a walking tightrope and it takes a while before your balance comes back.
    Hope this helps in some way,
    Greg
  • Meldidd Total Reaction Points: 1
    Thanks Greg, you have no idea how nice it is to receive such feedback. Indeed it is a rollercoaster. I have already counted out the 100 day mark on my calendar, thanks for that. Everything right now is exactly how you put it in your reply - 3 steps forward, 2 back and so on. It's going to take time. Thanks for your input. C :-)
  • HS17 Total Reaction Points: 7
    Hi I'm new to this site as well. I am 52 years old and am 5 months post transplant for AML and remember that those first few weeks after my transplant were rough. I was desperate to get home but felt dreadful for several weeks after I got home. I suffered a lot with nausea, vomiting, struggled with eating and slept loads. My Consultant told me to go for short walks every day which I wasn't too enthusiastic about but I feel the exercise has really helped. Its early days for your friend but it does get better.
  • Meldidd Total Reaction Points: 1
    HS17 - thanks for getting in touch. It’s encouraging to hear the real stories. Sounds like you’ve pretty much described how things are with my friend at the moment. It’s going to take time I realise. I hope you are continuing to get fitter and healthy again
  • nick63 Total Reaction Points: 5
    Hello Meldidd,

    and welcome to the forum. As confirmed by the other responses, the symptoms of tiredness and weakness you describe in your friend are completely normal, and in fact it would be extremely unusual if he didn't feel this way.

    I am 54 and six months post transplant. When I came home at the end of August and for some weeks after, I struggled to walk more than a few hundred yards and simple household tasks would take simply ages. The secret is little and often. Try to go for a walk once a day and, don't rush it, but over time he will find himself being able to venture a bit further and so on. Also set an objective each morning for something to get done that day no matter how small, like doing the washing up or laundry, some light housework. etc. It's a great morale booster to go to bed at the end of the day with a sense of having achieved something instead of just drifting through the day.

    It's a good idea as well to stay mentally as well as physically active. Plenty of books and puzzles to keep the mind ticking over. It's also good to get together with friends and relations for conversation and some social interaction, but of course be careful with regards to exposure to viruses as his immune system will still be susceptible to infection.

    Anyway I hope this helps. Please do stay in touch via the forum, we are always here to help and good luck and best wishes to you and your friend.

    Nick.


  • Meldidd Total Reaction Points: 1
    Thanks Nick63, and indeed all of you who have taken the time to write. I find it all very encouraging to hear all your stories and advice. Fortunately he is making every effort to try and do a little (more) each day. He is generally very fit normally and before diagnosis would play 5 games of racketball a week and cycle around 50 miles on his bike at the weekends, so it's quite frustrating for him I imagine. Today is a good day again. I seem to find they can switch every day, and I'm beginning to come to terms with the fact that just because he's great one day doesn't mean this is him on the up, and more than likely the next day will be a bad one. He did try a 10 minute cycle at the weekend (he has his bike rigged up in the house) and said he nearly vomited afterwards. The next day he was really flat. I guess he did too much too soon, even if it was only 10 minutes. I do love to hear all your stories and get your tips, it's very comforting and doesn't make me feel quite so isolated when I know there are others in a similar situation.
  • Rachelj01 Total Reaction Points: 64
    Hello

    I'm two years post SCT for AML and what you are describing sounds very similar to what I experienced post transplant.

    I had a dog, she was a blessing as her need for a daily walk forced me to get out the house. I honestly didn't feel like going out but the fresh air and light exercise really did help lift my spirits and restore me physically. I would aim to walk a little further each day even if it was only 5 minutes for than the day before.

    Nick is right about setting achievable daily goals they give a sense of purpose. As well as housework goals, just going out for a drive to a local landmark / the seaside can be very restorative and relieve the boredom of being stuck indoors. My home at time felt rather like a prison.

    Try to get a regular routine with going to bed and getting up. It's all to easy when you are off and have no commitments to stay up watching Game of Thrones until 4 a.m and then the following day you find it hard to stay awake.

    Food and drink, are also key. I know it sounds obvious but again when you are stuck at home with no purpose feeling rotten it's easy to neglect your diet. Healthy mood food and plenty of water, keeping away from spicy food as the gut it often delicate post transplant.

    Emotionally, I found it one of the hardest parts of my diagnosis and treatment. It's a very worrying time; has the transplant worked, will I get GvHD, worried about exposure to infections and you know longer have the medical team and other patients to support you so it can be very isolating. I found that many friends so the transplant as the end, not realising just how fragile a patient is post transplant and the fears they have rattling through their brain. It's also one of the first times during the whole process when you have time to take on board what you have endured. I'm a firm believer that having a positive attitude helps with recovery.

    Good luck, stay positive.

    Rachel
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi
    I am the lead nurse in patient services, thank you for posting. It can be difficult caring for someone after a transplant as some days will be better than others and progress can be slow. This is often frustrating for the patient and it can be a challenging time. The advice from everyone is brilliant and I am sure that it will have helped you know what to expect so keep on using the forum for support.

    If you want to talk about any of the side effects or have any other concerns you are very welcome to call me, my number is 0207 284 8229.

    I am sure you are doing a brilliant job in supporting your friend through a very tough time.

    BW
    Hayley
  • HS17 Total Reaction Points: 7
    I was working full time, walking my dog twice a day, doing park runs and had just bought a horse which I was riding a week before my admission. Looking back I think that my basic level of fitness has really helped with my recovery but when I was going through the transplant and during those first few weeks afterwards I felt like I was never going to get better. I still have my dog and my horse and whilst I'm won't be ready to start riding again for several months it's a goal that I am setting my sights on! In those early days gentle exercise is the key. I felt very vulnerable after the transplant and still do at times.
    Hazel
  • Meldidd Total Reaction Points: 1
    Thank you Hayley_Anthony - this is very much appreciated. I may take you up on your offer at some point x
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