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Extreme fatigue

I was diagnosed with cml in April 2022. I’m on 400mg Imatinib. Prior to diagnosis I was suffering from exhaustion hence why I contacted my gp and got a blood test.

My energy levels improved once I started treatment and I have got used to pacing myself and not overdoing it.

However the last six weeks I fell as exhaustion as I was prior to diagnosis of cml.

My consultant can’t see what is causing this as my blood tests seem ok. Just wondering if anyone else has suffered from this 11 months after starting treatment.

I haven’t changed diet or made any changes to my lifestyle in the last six weeks. So not sure why my fatigue has got this bad again.

Hi Evie - that sounds rubbish. Have you had any viral infections prior to feeling lethargic? Post-viral syndrome is very real and take quite a while to get over with. There is so much infection going around this winter.

David.

Hi David,

I haven’t had any symptoms to suggest I had a viral infection. My consultant is in the process of doing more blood tests for vit b12 & vit d etc. hoping additional bloods might come up with some answers

A lot of people overlook the mental toll of having CML has. It can and has for me over 5 years has resulted in extreme fatigue. It’s a fatigue that very complicated to describe!

All my bloods are “prefect” I am constantly told. I think mentally it really takes it toll or my other hypotheses is that it affects the thyroid a LOT.

I really miss my old self and dream of the day of no meds. Ironically I felt great before diagnosis lol.

I do have good days and boy do I notice when they are!

Hang in there the fatigue is real! And it’s most definitely mental or TKI induced as I personally never experienced that before diagnosis 5 years ago.

Al

Thanks for your response. I agree it’s a fatigue that is very complicated to describe and when bloods are ok it’s difficult to understand why fatigue takes over.
I’m hoping the very extreme fatigue will ease soon and get some energy back.

I was on imatinib my first two years (can't remember exactly), looking back I think I felt great in the beginning, after 1-2 months I had perfect blood values. The only side effects I remember was small cramps especially in my feet, other than that I felt good.

However, when I switched to Tasigna after about two years, I stopped taking imatinib and immediately after a day or two felt so much better. It was like I had been "numb" for over a year but did not realize it until stopping imatinib, kind of like "cloud" slowly getting darker over my head. I guess it was brain fog, also the cramps disappeared pretty much and I felt very alert and sharp.

Just my experience, it is hard to describe.

It’s interesting to hear how different you felt after changing medication.

What was the reason you changed over to Tasigna.

Hi Evie,
My cml journey was not exactly smooth, and my greatest challenge for the past 4-5 years have been extreme fatique and brain fog. Ever since I’m taking dasatinib i’m a shadow of my former self. I had to undergo a serious lifestyle change, to be able to function close to normal. I don’t know if this will help you, but for me regular exercise is needed even if it is very difficult to start and adhere to a routine with your preexisting fatigue. Also my diet had to change significantly. I noticed i can’t tolerate certain foods anymore, which i had to discover through a religiously strict elimination diet that was really difficult. After the exercise and diet protocols i was able to go back to about ~90% of my former energy levels. How do i know all this is caused by the drug? I had an adverse effect that resulted in a medication pause which within a week lifted all the negative side effects. I hope you’ll find a way to feel better! All the best!

I was diagnosed August 2019 and am on 100mg Sprycel.

First of all, as a woman, I TOTALLY can tell when my time of the month is coming and I swear it is worse than it used to be (even though blood ranges have been good for awhile). I think for women there might be an added hormonal component.

My other big theory about exhaustion, is that is mostly sleep related (brain exhaustion). That is how I describe it. I ran a whole marathon worth of distance last week and did 2x 5 miles starting out this week. I am NOT physically tired. I love running now and it is the only thing that makes me feel like a normal, healthy person. No one at the gym thinks I have cancer.

I have noticed though, despite good sleep hygiene (dark room, good temperature, regular sleep schedule, melatonin) my sleep is mediocre at best. Most days I wake up (everyday at 6 to get kids ready for school) feeling as if I have hardly slept. I usually try to force myself to stay awake all day. Whether I am successful or not, my sleep does not seem as restful. I also dream almost every night! I think my fatigue is 100% sleep related and I promise I have been working hard on it and it is still a nightly struggle. I do not want to take over-the-counter sleep aids because those hurt memory (anticholinergic).

Curious whether anyone feels the same way.