Thoughts &ideas on fatigue: I have ET... - Leukaemia CARE

Leukaemia CARE

1,278 members802 posts

Thoughts &ideas on fatigue

PMac314 profile image
5 Replies

I have ET. Diagnosed 12 months ago. Platelets around 600. On Hydroxyurea (HU). Male 67 years old. Fatigue has been a real issue. I am a high school math teacher, and shortly after diagnosis and starting on HU I needed to take a nap in my car at lunch. It got worse and I moved to half-time. Concerned that I might eventually need to stop teaching I decided to try something different. Lots of exercise! I have been playing golf, walking and carrying my bag, often playing 18 holes, sometime even 27, and trying to walk very quickly. Taking advantage of my half schedule, I have been playing very early in the morning and then teaching. I still need a 20 minute nap most days, but the fatigue does seem much better. And now I might just be tired from all of the exercise.

I wonder. Could the exercise be helping with the fatigue. Couple of possible explanations. More exercise could be improving my overall health and the ability of my body to process oxygen. At the risk of going a little too deep, could it be a matter of improved regularity? OK, maybe a delicate topic, but this is a medical forum. HU is essentially poison. And it must accumulate in the large intestines as it works through my system. Exercise, especially walking, is one of nature’s laxatives. So, could this just be purging my system more quickly of the HU?

Curious about your thoughts.

Written by
PMac314 profile image
PMac314
To view profiles and participate in discussions please or .
Read more about...
5 Replies
2003UK profile image
2003UKChampion

Hi, Firstly I am definitely not a medical person so anything I write on this forum comes from my personal experiences only. I have chronic lymphocytic leukaemia and since diagnosis I have been on watch and wait (active monitoring). One of the symptoms that led to my diagnosis was the onset of fatigue. Therefore I have had to manage my fatigue. With my fatigue it can come on immediately or up to 48hrs after I have overdone it emotionally, practically or physically. I have found I do not deal with what personally stresses me well now. Sometimes I need a nap and that helps, sometimes I need to duvet dive. However, personally, I have found fresh air, interaction with people and appropriate exercise helps me. Me and my head are often not a good combination. The exercise also helps to help me getting as fit as I can. I have heard talk of endorphins being activated, but I don't know. I don't know if my personal ramblings help at all. Take care.

HAIRBEAR_UK profile image
HAIRBEAR_UKAdministrator

Hi PMac34 thanks for posting.

Fatigue is an issue experienced by a great number of ET patients ahead of treatment. Exercise has been proven to be of most positive help, not sure what the scientific/biological reasons are? Your suggestions do sound plausible.

The MPN group here on the healthunlocked platform may be able to share further ET experience healthunlocked.com/mpnvoice. Fatigue is the most common side effect/challenge experienced by patients living with different blood cancers/proliferative disorders,

I am sure many here can comment and share experience.. Myself, I find exercise and diet play the biggest role in improving fatigue, I like your reasoning and am inclined to believe you that this could also help with moving on toxins from treatment and prophylaxis ;-) interesting

PMac314 profile image
PMac314 in reply to HAIRBEAR_UK

Thanks Hairy Bear

pigeonCl-HU profile image
pigeonCl-HU

Hi PMac, as I have exactly the same attitude as yours regarding exercise, or rather moving our body rather then just vegetating, I totally agree with you.

Shame about the accumulation of toxins, sad, comes with the territory I guess.

Actually alcohol reduces platelets count....Not a smart idea though...your way of dealing with ET is much smarter.

Your argument follows a logical thread, but then you are the Math man.

All the best,

pigeon.

PMac314 profile image
PMac314

Thanks pigeon

You may also like...

An Idea...re Brain Fog etc...

reduce the loneliness. So I am wondering whether I could work on a booklet of ideas and helpful...

Ideas for supporting dad in his last days

a request on Tuesday (.he's gone downhill very quickly - he was 'OK' a week or so ago), but the...

My dads AML at 81 years

quality of life . His bloods will be taken and if need be, he will be given blood transfusions....

War in the blood - BBC iPlayer

big effect on those coming in behind them. If you need a link, it's here...