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Coping with tiredness



  • Hi Jane

    Sorry for not posting sooner but I have been on leave. I am very sorry to hear that you have relapsed, its your worst fears. It must be incredibly difficult to hear that news after everything that you have been through.
    I do have experience of working with patients in your position and gone on to receive Azacitidine. As you already know its a milder type of chemo that can be given as an outpatient, it is usually very well tolerated and most patients manage to stay out of hospital. It is still chemo however and you will be at risk of infections and this will be the most likely reason for you to be admitted again. By now you will know all the precautions you need to protect yourself. It normally takes at least 4 cycles of Azacitidine before they can tell how well it has worked and this will probably mean having another BM to assess any improvements. Obviously they will monitor your blood counts throughout the cycles. If you respond to the treatment they can keep going with it for as long as you keep responding. I have had patients that have had this treatment for 18months or so. Throughout this period if you are doing well and keeping fit they might talk to you about a second transplant but really the first thing is to see a response and how well you cope/feel. Quality of life is so important and I know its easy for me to say but try and take it one cycle at a time and concentrate on keeping well by eating and exercising. Your medical team will be open and honest with you about the options you have but you must keep talking to them too about how you feel.

    I hope all has gone well today and please stay in touch with your progress or any questions you have.

  • Thankyou Hayley. I had forgotten how quickly the effects can occur. Had my first injections today and was sick all afternoon. Very much hoping this is just an initial reaction. Don't fancy that every day! I feel more settled now and have eaten. Yes, I am concentrating on getting through this first cycle and trying not to look ahead too much. As you say, I am at home and for that I am very thankful.
  • Hello. I have completed my first round of chemo and doing ok. One more round before I find out if it is showing any signs of doing the job successfully. If it gets me into remission, I will be faced with new choices. One of them could be a 2nd stem cell transplant with new donor. In order to see if there is any advice or help on the forum about this, I have started a new discussion with that title. I am hoping there is someone who has experience of this, either personally or professionally. I have never met anyone yet who has done it twice, although there must be some! It would be helpful to hear about this to help me make the decision as to whether to go for it or not, should this be an option.
  • Hi my name is Joanna but I liked to b called Jo I am 18 months post transplant and I am having trouble wiv my tiredness I have a gd nite sleep but then I feel tired still plus wen I do little things like walkin or cleanin even then I feel tired plays I do work but also that takes a lot out of me so cud u help me plz thanx x
  • Hi Joanna,

    I think tiredness and fatigue is something that takes some getting used to and affects us all differently. Some of us may recover to near where we were before getting ill and others may struggle. I guess its just the way our bodies react to what they've been through and how well they recover.

    I'm sure all of us would say we are not truly as fit as we were beforehand and I've heard the term a 'new normal' being used many times. We need to understand what our capabilities are post transplant and adjust accordingly, realising that we perhaps do get tired more easily. I know that I get out of breath more easily than I did before and I'm almost 5 years post transplant.

    At 18 months you are still getting there and you may still see some improvement as time goes on so I would say try not to get too frustrated. Rest when you need it and try not to push yourself too hard. Learn your limitations and try to adjust to suit what you can and can't do. As time goes on and your recovery becomes more complete you may get less tired.

    I hope this helps.

    All the best,

  • Hello Jo. Even after 2 and a half years I found myself still easily getting tired. Try not to worry too much about it. Try to pace yourself - like Steve has said - rest when you need to. Your body will tell you. I find some days I am just naturally doing more, because I can......then other days I need to rest more. It took me a long time not to feel bad about that, but as time goes on, it certainly is getting easier to accept. It was helpful to me to know that it is the same for others, and I hope it will encourage you, too.
    All the best
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