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AML Post Stem Cell Transplant
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
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
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.
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
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
Hazel