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Essex cml patients

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Hi everyone,

Just wondering following diagnosis whether people are managing work. I’m permanently exhausted was diagnosed in October and continued work. After several meltdowns at work, I finally took some sick leave and have been signed off since May. 

Nurses advise I need to adjust to a new life. I can’t do what I used to. Just wanted to know how others are managing if you are working or not.

Also wondered if there were many people local to Essex and whether having a meeting with others would be helpful. I’m near Southend. If anyone is interested send me a message and we can organise a get together.

Hi, I was diagnosed December 2017 aged 60,I packed up work as I was so exhausted  I couldn't function properly had to have a rest after doing the dishes or cooking a meal etc. ,couldn't concentrate on anything because when newly diagnosed we don't know what's going to happen to us.Also I suffered from dreadful diarrhoea so there is no way I could make it up 2 flights of stairs in time .Things do get much better in time and more or less back to normal .Dont know what I would have done if I had been much younger soldiered on I suppose .Hope you feel better soon and are taking all the vitamin supplements that are suggested on here .Regards ,Denise.

Couple of things.  I was pole-axed by fatigue on imatinib; on sprycel the fatigue was halved, at least.  Might be your experience, too.  Another hope, if you eventually can reduce dose, the fatigue (which is a side effect of TKI's and not CML) often gets much better.  You will be able to reduce dose when you have a good long record of response, preferably below MMR.  Lastly, I'm convinced that time has something to do with it.  I'm into my 11th year.  I would say I'm about 85% where I was before diagnosis, energy-wise.  The fatigue can get better and you learn to manage it better - it's a combination.

Thanks for the information that’s really helpful. Glad to hear life does eventually return to almost normal as I’m really struggling at the moment. I will ask my consultant about sprycel  and see. Thanks again

Thanks Denise, that’s pretty much how I feel and struggle to get simple day to day tasks done. I feel I need tests but don’t have time so I try to keep going but then it woes me out the next day.

I haven’t actually taken vitamin supplements other than vitamin D. When did you start to feel better? What supplements do you take? 

Thanks Huma

Hello Huma,Us CML ERS positively rattle with the supplements we take,vitamin D 3,vitamin k2,B12,Magnesium,Turmeric,Fish oil ,Selenium look back thru previous posts to find more information about them and how much to take and what they do for you. .Imodium helped stop the trips to the loo it worked like magic only took it for a few days .Fatigue stays with you really on Imatinib you just get used to it ,rest more don't try to be a super hero .It was only when I changed to Dasatinib did I feel more normal, for me side effects disappeared over a few days .So slow down a bit ,try to not keep thinking about what you have ,I know that's really hard .Not sure if you have a partner or family ,if so make them do a bit more around the house.Keep going you will feel better soon ,Denise.