AML treatment and muscle weakness

Hi Michelle26 I am so sorry that I have only just looked on the forum . I was diagnosed in July 2018 and at that time oral midostaurin was not being used and so unable to help ! However , I have just reached my 2 year milestone of remaining in remission ( post 4 rounds of chemo ) and so no more bone marrow tests just ordinary bloods. My physical fatigue has become heaps better in the last few months although I still have a bit if brain fog at times if I overdo things .


Great to hear from you @Hellenjoy, what have you been up to lately?

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Hi Erica , thankyou for asking . My fatigue is heaps better particularly over the past few months. Covid lockdown in a bizarre way helped me to take things slowly and so did lots of walks with friends . Last week I went back to outdoor swimming which was fantastic but actually quite emotional as the last time I swam was on the fateful dive holiday in Egypt where I fell ill and on my return to UK AML was diagnosed ! I have been having personal trainer zoom sessions over the past months doing "somatic exercises " which is based on neuro- muscular reprogramming pathways which go squiffy particularly after chemo/trauma etc …for me it has certainly helped . I still have to pace myself or else I pay for it and I have found now we can socialise a bit more my brain fog is quick to return if I am overloaded by too much chatter and noise . Thankyou again .


Thanks @Hellenjoy, I agree with your positive about lockdown and that you have been taking things a bit slower, I have also slowed down and not worn a watch for over a year.
I have also reassessed what I want to do in the future and I am going to give up some commitments I had.
Mind you I think you have really achieved a lot getting a zoom somatic exercises trainer.
I was interested in your emotional experience going back to swimming, isn’t it fascinating how easy it is to flash back to our diagnosis.
I have got to know myself better I think and how to predict and handle my fatigue.
I have not started socialising yet, I am awaiting some better weather.
I also haven’t got out of my leggings and tee shirts in over a year apart from wearing jeans to a few medical appointments, at least I can still get into my jeans thanks to my daily walk and daily Pilates DVD’s.
Take it steady and stay safe.