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FATIGUE!

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Hi everyone,

I hope you're all staying safe.

Ive been diagnosed for over 4 years now, currently on a trial for asacanib (I can never spell it) under Prof Apperley at Hammersmith hospital. I am really struggling with fatigue and its something that is really affecting my life. I feel like I've tried absolutely everything, I've had transfusions, b12 Injections, taken vitamin d tablets and sprays, I've tried eating different foods taking energy boosting supplements and I'm sure there's plenty more I've missed off. The transfusions I've had are supposed to last 3 months but they lasted around 2/3 days, for those days I feel fantastic. The doctors have said I don't have something in my tummy that absorbs it. 

I try to walk as anything else is too hard. Ive recently tried getting into more of a routine going to bed around 9/10pm and waking up at 7.30 but I just feel that come 11am I'm falling to sleep and ready for bed again and I really have to try to stay awake. I can't nap during the day as I don't sleep at night if I do. 

 

Ive recently (around 3 months ago) had my dosage reduced to 20mg twice a day and I'm responding really well to treatment, I think I'm around 0.2 which is amazing.

 

Any suggestions would be very highly welcomed, anything that you have found helps even just a little bit I would be more than willing to try. 

 

Speak to you all soon,

 

Hannah x 

Hi Hannah

Sorry to hear that you feeling so washed out. I’ve been on therapy for 2 years in fact just had my 2 year blood test which should hopefully mean MMR finally. I was very close in October so fingers crossed.

Your subject is one that’s difficult to describe isn’t it. I can have a good sleep and an hour after waking I just have no energy. It’s a strange kind of tired and what I mean it also comes with low motivation. It’s like hitting a wall of slump is the best way I can describe it.

For me I find they cycle so I can go a while and feel relatively normal and then I can have bouts of this that last for days and even weeks. In fact just had a bout for about a week and hoping it passes. I eat well, exercise like you and still it persists. I wonder if this is more due to the nature of our illness rather than the drugs or maybe a combination of both. I can’t seem to find a correlation. I was tempted to raise a post like yourself to see what others think so thanks for doing that.

I did read TKI can be harsh on the adrenal glands and from experience worry and anxiety that is prolonged can also have an impact on fatigue. Hard to diagnose what’s going on in the head.

I hope you find some relief from the bloody fatigue. Can I just ask why you are on the trial have you been on previous TKIs.

Wishing you all the best.

Alex x

Hey Alex,

so nice to hear from you. Wow MMR.. I love those words! When will you find out? 

Im exactly the same, even as soon as I wake up I feel like I haven't even slept and i'm in zombie mode. How you have described it is exactly how I feel! 

I do tell myself to give myself a break as i'm putting a toxic drug in my body twice a day everyday but honestly my professor does say I should be leading a normal life by now and everyone else that I see dealing with leukaemia seems to be working full time etc.. its hard to see as I don't know what i'm doing wrong!

Im quite lucky that I don't have anxiety.. I have a very positive mindset but I guess you still don't know what's going on in your mind subconsciously and anxiety can be very draining. 

I hope so too.. Im going to research a lot and ill let you know if I do find anything that helps :) 

Im on the trial as I've been on 2 other TKI's over 4 years with no success.. Imatanib and Nilotinib. With Asacanib i'm very close to MMR like you! (another reason I don't understand the fatigue! 

Stay safe,

 

Hannah x

Hey Hannah

I should have the result on the 22nd of May. I can’t say you ever get used to worrying about tests but they are there for our protection I tell myself over and over.  Hopefully I’ll be MMR and if not I hope to be less than 1% still as that’s really the most important milestone. In fact their is neglible evidence that those that are less than 1% have the same survival rate as those in MMR. But I guess getting to MMR is an extra security blanket.

Sorry to hear that you have failed a couple of TKIs. That terrifies me but I have seen many people do fail a few and succeed on another.

Yeah the random fatigue is my only real persistent symptom. Other than some skin issues in various spots. It’s very annoying but I am sure after time they will be fewer as time goes on.

I hope you eventually adjust to the fatigue and you are right you have to learn to be kind to yourself we’ve been through the mill and we are still taking very toxic medication. We forget that part sometimes. We just put so much emphasis on “normal life” because that’s what we are told. It’s not quite normal but more a new normal.

Wish you all the best.

Alex x

 

 

Hi alex, i wish you good luck. i hope your pcr result will put you in mmr this time. hannah, if we take high dose of tki,fatigue will be part of our life.

Thank you very much. It feels like a long time coming hopefully the 2 year mark will put me there!