Original diagnosis Acute Myeloid Leukaemia with Myelodysplastic syndrome (MDS) related changes
Last Thursday, I was officially a year post transplant. I just thought I would share the news on here to give anyone hope that is pre transplant, going through a transplant or is just post transplant.
The biggest thing I found was eating post transplant due to the awful taste that most foods had. This was very trial and error for a few weeks finding the foods that I could eat. I bought things and after one mouthful it went in the bin. Eventually I found things I liked and stuck with them just to get calories in. Around the 100 day mark I started to eat more varied foods and as time went on taste improved greatly and now I pretty much enjoy everything that I did pre transplant.
Around the 100 day mark, I found that I was energetic and this was probably due to consuming more food. Again this improved with time and I am now riding my bike again on a regular basis for up to 50 miles at a time.
During my chemo and after the transplant I studied and passed exams that has allowed me to start my own business. Having the freedom to take days off and generally not being tied to desk 8 hours a day has been a massive help both physically and mentally. I know not everyone has this opportunity but if you are going back to work make sure you employer has a full understanding of what issues and struggles you may have in undertaking your role.
Day to day now I am doing normal stuff and don’t have any issues mixing with people or doing the things that I want to. Basically I have the life is too short attitude.
Ferritin levels are high due to over 100 blood transfusions pre transplant, initially I was having venesections every 2 weeks this is now once a month and something I have just accepted as normal life for the time being.
I speak to the medical team about every 8 weeks now and they have told me I will continue to be monitored going forward. I have recently had a heart scan and have a lung function test in a couple of weeks to ensure these haven’t been affected by the transplant and drugs I have been taking.
Things to remember, everyone is different, there aren’t any set rules on when things will happen, don’t focus to far in advance, live every day, if you set goals and don’t achieve them don’t be too hard on yourself and time is the biggest healer.
Oh, @Muzza your post is so useful and I am sure it will be to others.
Your last paragraph is something many of us need to remember.
Look after yourself and be kind to yourself
Hi @Muzza
What amazing news and what an extraordinary recovery - well done! I’m so, so pleased for you. And I’m staggered you studied through chemo - I couldn’t even watch tv, I was so sick. It just goes to show how different we all react to various elements of the Acute Myeloid Leukaemia/Stem cell transplant journey. But like you, I’ve generally been blessed with a very good recovery and I’m back at full-time work with no fatigue issues - so I think it’s important to let people know this IS possible. I remember thinking pre-transplant that my odds were low - but I was basing this on old statistics, and I hadn’t seen a site like this where many people were clearly making excellent recoveries. Lots of people will read your post and hopefully take heart. Life can be wonderful again after this terrible Acute Myeloid Leukaemia/Stem cell transplant interlude.
I’m so glad you’re doing well. Keep posting!
Full of Beans X
Thank you so much @Muzza for sharing your story. You have certainly been through a lot. Thank you for your encouragement and the hope you give to others by being willing to share. Warm wishes. Willow x
This is such a useful post @Muzza and welcome . I share some of the issues.
I did a 5 day course in interpersonal mediation in 2021 - I needed to do it for sanity sake, but unfortunately caught Covid whilst attending (I think …) all safety measures were weighed but that was the period I caught it putting back my transplant - which I now still await as I’ve been ill also with my condition in November 2021but better since Jan 2022 and receiving treatment .
I went back to work in June 2022 on a return plan. I was allowed to work from home . I can do my job online . I had the review last week of that plan . I was asked how I felt about going into office now . I said no way . My office is an hour away - 2 hours return trip. It’s an old building with only two toilets for a group of staff … I get tired in the middle of the day (as I don’t sleep well and I am up early ). Agreement is I can stay at home …. and work flexibly . I miss the office socialisation, banter and dressing up for work and all that goes with that … but I would be worn out after a week and risk of infection would heighten.
I continue to look at opportunities that takes me away from the ‘one stream ‘ and labelling (that can occur) with having a cancer diagnosis .
My stem cell transplant is a long way off I think but my stems are on ice and being held .
Hi @Muzza this was really uplifting. My dad is 58 and has been diagnosed with Acute myeloid leukaemia (AML), he is currently on day 2 of his first round of chemo (flag IDA). I have told him about you and your story as it brings him hope so thank you. I hope you are doing well and continuing to thrive!
Hi @Cdaughter, sorry to hear about your dad. Hope the Flag Ida isn’t too bad for him. I’m now 4 years 2 months post transplant, have lived a normal life since with only one small scare earlier this year although the medical team had me in for test an hour after calling them. Wish you and your family all the best for the future.
Thanks so much @Muzza if you have any advice as to what I can do to help him when he’s on flag Ida it would be great. I’ve been taking him in soup (sterile container) and boiled eggs and avocado that he can shell himself. Hoping to keep giving him lots of nutrients. He’s currently sleeping a lot as the chemo is tiring him out.
So glad to hear you’re doing well! It’s shows there can be hope and it’s great to hear!
Sorry for the delay in responding, I’ve been out on a 84 mile bike ride today. Sounds like you are doing everything possible @Cdaughter it’s a very tough mix of chemo flag Ida. I was told it’s the second worst chemo that the body can handle. Your dad will have good days and days that aren’t so good. Staying positive will help him, and take him whatever he wants to eat. If the hospital is anything like where I was the food is awful and not nutritional although the medical staff were amazing. Doctors told me to eat anything I wanted as long as it wasn’t on the band list. It’s good that you can see him, I wasn’t allowed visitors as the Covid restrictions were still in place. It’s a hard thing for your dad to deal with but tell him to take each day as it comes. Lots of small battles.
Hi @Muzza how are you? Sorry for the delayed response - we have just been getting through it and taking each day as it comes. Dad is on his second round of flag-Ida. He has finished this but has been neutropenic for over 2 weeks now, he’s also got an infection and his CRP has increased. I know infections can happen but it’s really scary as he obviously has no white blood cells to fight it at the moment. Appreciate you can’t give much advice but if you have any reassuring words I’d really appreciate it. I think he is now going to get Colony-stimulating factors to try promote his bone marrow recovery, did you have this? I’m not sure it’s common but can’t really tell. As always appreciate all the support you give myself and others on this forum. Thanks again
Hi @Cdaughter I’m very well thank you. Monday was 5 years since I received my diagnosis so that was a big milestone to get through.
Definitely understand the getting through it day by day. 2 rounds of Flag Ida that must very difficult for your dad. I only had one round of Flag Ida although it was my second round of chemotherapy. I was seriously ill after the flag, I had it beginning of June and then when I finished I spent the rest of June and 3 weeks of July in hospital. It was probably the hardest part of my treatment as the doctors couldn’t work out what was causing the infection. I know after my first round of chemotherapy my neutrophils never got above 0.18 so when I had the flag I was starting at a very low level. You can be as careful as you can but keeping infections away is impossible unless you’re extremely lucky. I was given GSF which is a colony-stimulate at one point although I can’t remember if this was during chemo treatment or after my stem cell transplant. The only thing I remember was the uncomfortable pain in my pelvis but from memory that was the only side effect and it wasn’t unbearable, just uncomfortable. Hopefully that works for your dad and he recovers quickly from the infection.
Sorry I can’t be more helpful.
If there is one thing I learned, it’s this: don’t give up. Not on yourself, not on your future, not on the possibility that things can get better even when life feels impossible. There were days I couldn’t see past the next hour, never mind the next 5 years but here I am. Progress happens quietly, strength builds slowly and hope has a way of returning when you least expect it. Keep going. You never know what the next chapter might hold x
Hi @Cdaughter, thank you for the update - I’m really pleased to see you’re getting some great support from our wonderful community members.
Extended neutropenia after FLAG-IDA is sadly part of what makes it such an intensive treatment, and infections during this period, whilst scary, are something his team will be very used to managing. It might help to have a read of our information on infection and neutropenia, which explains what’s happening and what to look out for. On the G-CSF, our information on intensive AML treatment might also be handy to read, too.
I also want to check in on you - our free Support Line is there for family members too if you ever need to talk things through. 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Hi @Muzza how are you? I hope you are doing well and seizing life! My dad is 5 weeks post stem cell transplant (he got a 90% match). It was tough he really struggled with the second round of flag IDA and then had another round of chemo (not flag IDA) pre his transplant. I am hoping all is okay, he’s struggling with fatigue a lot and says it’s very exhausting. I think he perhaps had the hope that the stem cell transplant would fix it all and he would feel normal again (or close to it) but he doesn’t.
We think about you and your journey - I’ve often said I imagine it took some time for you to get back to cycling which I hope gives him some hope.
Hope you have been able to cycle in the good weather!
Hi @DuncanB thank you for your kind words and sorry for the delay! It’s been a whirlwind. How are you doing? It’s so nice to hear that there can be another side to all of this. Dad has had his stem cell transplant 5 weeks ago and we were fortunate to find a 90% match. I think the fatigue is really affecting him though and that he probably hoped to feel more normal by now. He is struggling to walk very far and feels like he could sleep all day. Not sure how you managed that or if you remember when you started to feel a little more normal?
Hi @Cdaughter great to hear you dad is 5 weeks post transplant. The pre conditioning chemo isn’t great and the transplant all take time to get over. I struggled for the first 100 days with fatigue, lack of appetite, smells of various foods making me nauseous. It was tough but as the medication dropped and the 100 days past I started to feel so much better. Tell your dad to give it time as his body is adapting to the transplant and time is a great healer.
The cycling has taken a backseat over the past couple of months, trying to get out when possible but life is busy as my 15 year old son plays cricket for Yorkshire and his club side so every weekend and many week days/evenings are taken up with games leaving me no time for cycling at the moment. It’s frustrating as managed to get to a very good level of fitness over the winter and early spring but it’s great to see my son doing well and enjoying the experience.
5 weeks post transplant is very early days so it’s going to be tough for your Dad at this stage.
I wasn’t anywhere near the point of discharge at that point. Like your Dad my donor was a 9/10 match.
He’s not going to be able to walk far and what I found helpful was just to note mentally how steps increased over time.
When I got home I could barely make it to the bottom of our driveway. I use to do laps round the house indoors.
If your Dad has some exercises from the physio, he should try and do those, even when he feels like he doesn’t want to.
Physio gave me exercises that were mostly lying on the bed and sitting and standing.
The sleeping is very normal as dealing with fatigue rather than just tiredness.
I probably started to feel a bit better after about the 100 day mark when I was no longer using a stick for walking, the hospital appointments reduced and no longer needed blood and platelet transfusions.
14 months on from transplant averaging about 13,000 steps a day and doing well at this point.
Tell your Dad it’s going to be a slow recovery and try to stay positive as much as he can.