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Coping with tiredness
Hello. My name is Jane, 60 years old, and I am 2 years post transplant. I am new to the forum. I had AML and subsequently a donor bone marrow transplant. I have been really fortunate with my recovery. Only one infection post-transplant, which caused me to have to go back into hospital. But I am struggling with my lack of energy. I really have to pace myself. I have always been an active person, and get really frustrated that I get tired so often, when I want to get on and do so much! Do others this far on feel so tired? And have you any ideas which might help?
Comments
I'm a community champion on this forum and I can associate with you completely. I had several relapses of non Hodgkin's lymphoma until I was given a cord blood transplant in late 2013 when I was 59. As I had an autologous stem cell transplant a few years previously, I thought I knew what was coming - I didn't! It totally pole-axed me for a very long time. I was still having a nap in the afternoon for about 18 months afterwards and spent a lot of the day just sitting. I had been given early retirement on grounds of ill health which is just as well as I couldn't have worked after the transplant. At your stage, two years on, I was much the same as I am now - that is still with fairly low energy levels but years of chemo had already taken their toll on me. I'm fairly active but can't walk as far as I could before the diagnosis and some jobs still over face me - I get the shopping online and have a cleaner.
How are your emotions? I felt emotionally inert for about 2 years but am now back to normal - crying at anything as I have always done.
I hope this helps.
Sue
I didn't have the difficulty that you describe with my emotions, thankfully. I am glad that you are feeling more normal now in that respect.
I am 38 and 15 months post transplant and my energy levels are not the same as they were pre-transplant so maybe it is just one of those things that happens - our bodies have been through a **** of a lot after all. As to people asking if you are back to normal, I think it is because they worry and in a way want to stop worrying. I think they might also want to stop feeling like they are walking on eggshells. Normal doesn't exist anyway so I normally just shrug it off because I realise the question /comment is more about them than about me.
All the best,
Greg
I also think you and I have to make allowances for our age. It takes some doing to recover from a bone marrow transplant and all the chemo when you're nearly 60 (even if 60 is the new 40!).
Dieseldrinker has suggested on another thread that we may need to look at a 'new normal'.
I think I may start a new thread about BMT in older patients.
Sue
I am the nurse specialist in patient services. I just wanted to back up the advice that you have received from Sue and Greg. It can take several years for fatigue levels to return to normal after a transplant and Sue is right you do have to take in to consideration age too. Its mainly about balance and not overdoing it on good days and listening to your body on days you feel tired. Its great that you are motivated, keep that going and gradually overtime it should improve.
One of the most common conversations that I have with patients is that 'I look normal but don't feel it' and it can be really hard for family and friends to understand why you still feel so fatigued 2 years later. We are very aware of this at Anthony Nolan and we are working hard to raise the awareness of long term side effects of transplant. Our booklets on supporting your friend through a transplant and fatigue might help. Although they cover immediate post transplant experiences they also have advice on longer term issues like fatigue. You could show this to your friends or casually leave it lying around so they can read it!
https://www.anthonynolan.org/sites/default/files/ANFriendsGuide.pdf
https://www.anthonynolan.org/sites/default/files/Managing_Fatigue_After_A_Transplant_Anthony_Nolan.pdf
Remember what you are experiencing is normal and should get better but like most things after a transplant it will take time.
Best wishes
Hayley
I'm afraid I can't comment on the significance of the drop in your blood counts but until someone from Anthony Nolan can get back to you, I just wanted to say that we are all here as your support team, wishing you well. Do feel free to post on here whenever you want. I have learnt that it's impossible to predict what your medical team will decide what to do next!
All the very best,
Sue
I just wanted to echo what Sue has said and wish you well. As you say it may be just a blip due to an infection and hopefully nothing more severe than that.
I think we maybe get too hung up on our blood tests and it is possibly normal for dips in our system whether we have gone through a transplant or not. I wonder sometimes if you monitored someone who hasn't had a transplant whether their bloods would also fluctuate?
Fingers crossed that by the time you have your next blood test your levels will be on the up again. As Sue says please keep us posted and come back for whatever support you need.
In terms of your original post about fatigue levels, I'm over 4 years post transplant and even now I find things catching up with me sometimes and I feel tired. If I get a cold it tends to knock me harder than it used to and takes longer to recover. I would say that my fitness levels have come back to similar to how they were before my transplant but then again I was never particularly athletic! I guess we have to adjust slightly to compensate for our lower energy levels and establish a 'new normal' for our capabilities.
All the best,
Steve
I hope you are well!
Apologies for only jumping in on this conversation now - I joined the Community Champions just last week and have been looking through past messages and couldn't help but want to respond to your tiredness query...
I am over 5 years post transplant now and I'm afraid to say I still suffer quite a lot from tiredness and fatigue... but I ask myself, is it in my head? Or is it my body telling me it's been through too much? Or is it simply hormones!? Honestly, I think it's a combination of all three, but I'm sure us ladies can all agree that hormones can play a HUGE part in how we feel - I don't know about you Jane, but I had to have TBI (total body irradiation) to cleanse my body before having my new immune system put in, and although this was a great success, one of the implications for me was that this treatment messed my hormones up massively - which I know has had an impact on my tiredness.
How do I fight it? Well, some days are harder than others, but I fight it as much as I can and I'm afraid to say coffee has become a dear friend
Hormones for us ladies during/after treatment is probably a whole different conversation though, but I wanted to let you know you are 100% not alone with the tiredness, but as hard as it is, try to fight it as much as possible by staying active (a little controversial isn't it... but it works
I'll look forward to hearing how you're doing.
Best wishes,
Nichola x
I'm really pleased to hear you're enjoying this beautiful weather and trying to take your mind off things by doing 'normal' things
When we're in limbo at times like these, it's easy for our minds to wonder and sometimes end up thinking the worse... We're only human, and the unknown can be our worst enemy! BUT staying positive as much as you can and trying to focus of the good things will do you all the good - and it sounds like you've already got that down to a tea!
Wishing you all the very best for the tests, Jane, and you know where we are if you need to talk or have any other questions.
Enjoy the sun! x
Sorry for the delayed response. Its good to see you have lots of support on here from people who understand what you are experiencing and giving you good advice. In terms of your counts, there can be different reasons why they fluctuate, even 2 years after transplant. Sometimes they might just have a blip but sometimes infection can be a cause. Even if you haven't been feeling too bad, viruses can cause the bloods to change and this would also fit with the increase in levels of fatigue you have been feeling. Unfortunately relapse is another but if all your other tests have been good and your chimerism has been unchanged then this is all reassuring. Also if the team were that concerned they would have organised a BM straight away. I know its easy for me to say but try not to worry too much about this and just see what you bloods are like when you go back.
It sounds like you are doing all the right things and getting on with looking after yourself and enjoying the sun etc. which is definitely the way forward.
Keep us updated
BW
Hayley
Please keep us updated with your progress and I wiish you well for the rest of your recovery.
Steve
I think this is such a difficult and personal question. I have been thinking about it quite a lot as I know my cancer will return at some point in the future. First time around I was completely open, but I have my doubts about second time round as I've seen the damage it can do. I think I would maybe wait until I knew for certain what was going on or when it became too obvious to hide.
Greg
Uncertainty can be one of the hardest parts of recovery. This has been on-going for you now for over 2 years with the last few months being more difficult with the drop in counts. Its great that you feel your team are being thorough but its also normal to have the worry in the back of your mind. It is your own individual preference as to how you cope with it and maybe you need to think about what is best for you rather than what is best for your friends. How will they react and respond to you if you tell them. Sometimes telling people can cause more anxiety for you because you know they worry, they ask lots of questions and emotionally it can be draining. Sometimes it can be another source of support. At the moment there isn't a lot to tell, you having extra bloods weekly and a bone marrow to check everything is OK. You feel well and you are managing to do your everyday things. If this changes then maybe they would have been a bit more prepared if you had mentioned it before but I feel their reaction will ultimately be the same.
I think you need to consider what you need the most in terms of support and living you life as normal as possible and the impact on when to tell them will have on this.
Keep us updated with your progress.
BW
Hayley
Chimerism still at 97% and platelets have steadied, but the worry is the consistent drop in neutrophils (now 0.88) I am told this could still be a post-chemo effect, or heading toward a relapse. They haven't used the word " neutropenic" but I guess I must be close. Could it be my new donor cells still fighting off my 3% original blood cells? Sounds logical. But I am concerned that should I pick up a cold or something, there'll be nothing left to fight it. I don't want to turn into a hypochondriac, but I am a bit scared to be honest. Next appointment in 10 days to get latest results unless they contact me after the big inter- hospital meeting (on Tuesday).
Setting out to enjoy the next week while playing the waiting game. Thanks for listening. It's good to unload. I have told my friends now. Mixed blessing. Jane.
Really sorry to read your update, I imagine it must be a very unsettling time. I am sending you lots of positive thoughts that this is just a blip and those neutrophils will start rising soon. I had a problem with falling neutrophils but it was around 6 months post transplant. They did recover - I'm hoping the same happens for you.
Take care of yourself,
Greg
Hello, I'm a new Community Champion and only just caught up with your post. I'm terribly sorry to hear you've had to go through a worrying time with your bloods. I wanted you to know, I'm thinking of you and have everything crossed for positive news.
As for the neutropenia, I'm sure you know to stay clear of your children (if possible) wash hands as if you have severe OCD and in general live a quiet life until they rocket back up.
Thinking of you.
Rachel
It seems I have 2 options. One is a course of "mild" chemo ( milder than before any way, done as an outpatient) to see if I can get back into remission. This buys me potentially a bit of time. But I need to weigh up the good it may or may not do against the bad effects the chemo may or may not have on me.
2nd option palliative route. Having potentially less time, but better quality of life.
Both options leave me open to infection as I have little immunity already because of my lowered blood counts.
I have a meeting on Thursday and treatment, if I choose that route, would start the following Monday.
Anyone got any experience of this? Azacitidine.
Please let us know how you get on with your appointment on Thursday and of course we are all here for you however we can help.
Best wishes,
Steve
Rachel
Jane
Thanks for the update, I'm glad you find good support here however small under the circumstances.
It's easy for me to say try and stay positive in the hope of getting back into remission which it sounds like there is a chance of and I'm fairly sure you are clinging on to that possibility. I know the prospect of a second transplant will be daunting but it has been done before and if that has a chance of working, to my mind you would take it.
It's an impossible decision to make I'm sure, but I wish you all the very best as your treatment starts next week and you know that we are all with you every step of the way. I've got everything crossed for you and praying that the chemo gets you back into remission so that you get that chance of a second transplant that will give you the cure you need.
My very best wishes,
Steve
I am really very sorry to read your news and as Steve says I really hope that the treatment you start on Monday gets things kicked into shape. Anything we can help with on this forum, we are here. I knew someone who had your treatment for AML relapse. He found it tough and it didn't work for him. But everyone is different, and I hear it can be very successful. Are there other options out there? I keep reading about CAR-T therapy for relapsed blood cancers - does anyone have any info on that?
I will be thinking about you,
Greg