Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Sign In with Facebook Sign In with Google Sign In with OpenID Sign In with Twitter

Coping with tiredness

What's Hot
janemill Total Reaction Points: 5
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?
«1

Comments

  • SuePSueP Total Reaction Points: 43
    Hi Jane,
    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
  • janemill Total Reaction Points: 5
    Thankyou for your response Sue. It is good to hear I am not alone in the way I feel. I have found this latest stage quite difficult. People keep telling me how well I look.....isn't it amazing?.......good to see you 'back to normal'. And I am generally well, and it is amazing and I shall be forever grateful for this extension of my life, to doctors, nurses, and of course my donor. But I am 'not back to normal'. I understand that people forget, and of course they only see me out and about. But I spend a lot of time in between simply recharging my energy. I suppose I cannot really expect others to understand when I don't understand myself either, sometimes!
    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.
  • greg777 Total Reaction Points: 59
    Hi Jane,
    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
  • SuePSueP Total Reaction Points: 43
    Hi Jane,
    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
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Jane

    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
  • janemill Total Reaction Points: 5
    Thankyou Hayley. Sorry for delay in replying. I seemed to have plateaued on the fatigue side of things, until recently when it has become a little more marked. I saw the consultant yesterday, who told me that my bloods were showing changes....lower platelets....lower haemoglobin. Hopefully just a sign of hidden infection, but checking blood again in 2 weeks to see if I need the bone marrow checking. If my bone marrow is fighting back, and there is a change in the chimerism / bone, does that mean the leukaemia is definitely back? Or could it just be just a potential possibility? Trying to make sense of it.
  • SuePSueP Total Reaction Points: 43
    Hi Jane,
    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
  • janemill Total Reaction Points: 5
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi Jane,

    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
  • NicholaNichola Total Reaction Points: 9
    Hello Jane,

    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 ;) But on a healthier note - exercise!! This helps me feel more energetic, and when I do feel tired, I have the easy excuse of blaming the exercise as opposed to silly hormones. As well as staying active though, there's no shame at all in listening to your body and slowing down when it's telling you to - unfortunately I think it's just something us transplant recipients have to accept.

    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
  • janemill Total Reaction Points: 5
    Thankyou . I think you are right Nichola, in that it could be a mixture of lots of things causing the tiredness. Sometimes it's easier than others. Sometimes I beat it and sometimes I don't. At the moment (rightly or wrongly) I am doing as much as I can this week prior to these forthcoming tests....just in case the doctors have other plans for me after the results! Loving the bright weather. Loving doing normal things. I suppose if I'm honest, these iffy results have caused me to stop thinking so much about the frustration of tiredness, and concentrating more on what I CAN do. Good reminder, really. I shall aim to remember this in future. Thats my plan. Feel free to remind me if I start feeling sorry for myself!
  • NicholaNichola Total Reaction Points: 9
    Hi Jane

    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
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Jane

    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
  • janemill Total Reaction Points: 5
  • janemill Total Reaction Points: 5
    I am aware that I haven't updated for a while. That's because I still don't really know what is happening. My blood tests seem to have stabilised, except for the platelets which continue to descend. Doctors seem ok with it, so that is positive. Back to weekly blood tests keeping an eye on the trend. I am very grateful for this, and am glad to say my latest chimerism is still v high 97%. I am feeling well, no worse at all, so continue to enjoy each day whilst waiting for this little niggle in the back of my mind to be resolved. Thankyou for your support .
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Thanks for the update Jane, it sounds like you are doing well and hopefully your platelets will pick up again and your chimerism will reach 100%. I seem to remember having transfusions and platelets for some time after my transplant so hopefully yours is just your new system bedding in.

    Please keep us updated with your progress and I wiish you well for the rest of your recovery.

    Steve
  • janemill Total Reaction Points: 5
    Thanks. I am quite upbeat about it at the moment...it was just a shock to hear the bloods had dropped after such a long time. I knew it could happen, of course, I'd been warned often enough! Still, onward and upward. Enjoying the summer and forgetting about it again for another week..........
  • janemill Total Reaction Points: 5
    An update. So, 8 weeks in, with almost weekly blood tests, white cells and haemoglobin still not recovering yet....slight upward movement with platelets. Bone marrow test booked next week. Still thinking ( hoping!) along the lines of undetected infection, and they are being very thorough with trying to find the source. Generally not feeling too bad at all....but find the uncertainty difficult sometimes. Cannot fault my medical care....feel so very fortunate to be facing this in this country. How much worse it could be. Haven't told my friends yet. (My family are aware of course) - I hate the thought of putting them through the roller coaster of emotions possibly unnecessarily.......but also, if things turned out badly, they would be more prepared.......what approach have other people taken? Also, I find that when people are aware of poor results, they treat me differently, while I am desperately trying to live as "normal" a life as possible. Any thoughts?
  • greg777 Total Reaction Points: 59
    Hi Jane,
    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
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Jane

    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
  • janemill Total Reaction Points: 5
    Thankyou both. I think you are both right in that there isn't much that's different on the face of it....it's just that for me, I suppose, it dredges up possibilities that aren't there and may not even happen. Back to one day at a time......my brain just keeps forgetting. Thanks for reminding me!
  • janemill Total Reaction Points: 5
    Hello again. Update. Eventually I was called in to have a bone marrow test to see what is going on. Then on Monday this week got a phone call to say I needed another - just 2 weeks later. Had that yesterday. It seems that there is some "instability" in the blood cells, so they needed a further sample to check.
    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.
  • greg777 Total Reaction Points: 59
    Hi 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
  • Rachelj01 Total Reaction Points: 16
    Hi Jane

    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
  • janemill Total Reaction Points: 5
    Ok. So I had the results of the 2nd bone marrow test which confirms that the leukaemia has returned. Early signs, but definite.
    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.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Oh Jane, I'm, so sorry to hear this. It's one of the worries we all face but it's hard on all of us to hear that somebody's illness has come back. I can't imagine how you're feeling at the moment but I'm sure you will be getting lost of advice and support from your medical team to help you choose the best option, but it must be an impossible decision to make.

    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
  • Rachelj01 Total Reaction Points: 16
    Oh Jane, I am so very sorry to read your news. I will be thinking of you, such a hard decision to make and I hope you have all the support (medically, friends and family) you need at this time. As Steve says please keep us informed and we are here for you as best we can be.

    Rachel
  • janemill Total Reaction Points: 5
    Thankyou, Steve and Rachel. After my meeting yesterday, I understand that even if this treatment works for me, it will simply be a 'holding' chemo. Possibly up to 2 years. There may be opportunity for 2nd transplant if I get into remission ( potentially leading to a cure). That would be a decision for later of course. That is good, because at the moment I don't like the thought of that at all. Treatment starts Monday. Taking one day at a time and hoping I will know what to do if and when I have to decide, thankyou so much for your support. I have great support here, but talking to people who truly understand is different
    Jane
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    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
  • greg777 Total Reaction Points: 59
    Hi Jane,
    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
Sign In or Register to comment.