I was diagnosed with essential thrombocythemia about 18 months ago. I am being treated for that with daily hyrdoxycarbamide capsules. I find big problems with easy fatigue, especially in the mornings after eating and showering, but also after quite modest exertion. I am wondering how others in the same sitution cope with this.
Hi @Angus a great big welcome to our forum and I am so glad that you have found us.
I don’t have Essential thrombocythemia (ET) but I do have another blood cancer and my main symptom is fatigue.
I attach a couple of links and one is about Essential thrombocythemia (ET) and the other on fatigue.
Essential thrombocythaemia (ET) - what is it, symptoms, tests and treatment | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
I was diagnosed 19yrs ago so me and my fatigue have got to know each other well over the years.
Since diagnosis I have not dealt with what personally stresses me well and stress definitely brings on my fatigue.
It is also brought on with with emotional, physical, psychological and practical things.
It can come on immediately or up to 48hrs after the event.
I am now a morning person and don’t do evenings.
I am sure others have thoughts to contribute.
I would say to look after yourself and please do keep posting more about you.
Thanks Erica for your reply. I have been wondering if there are others with Essential thrombocythemia (ET) who find reading and concentration needed while working on a computer, as something which sets the head feeling fuzzy or even dizzy. I am told by my Health Care folks that a feeling of remoteness or fuzziness is not uncommon. Since reading and writing have been so much part of my life, this is rather frustrating! Good to be in touch.
A huge welcome to the forum. I’m sorry to hear about your diagnosis & also that you’re struggling with symptoms.
I hope you are able to receive lots of support from the forum but do also know that should you wish to talk things through, our helpline is open Mon- Sat on 0808 2080 888.
Managing symptoms whilst trying to also maintain a level of work can be really difficult. We also know that managing and understanding fatigue patterns can be really challenging so I’m pleased you have expressed your concerns to your team.
In addition to our own information which Erica has already linked to, I wanted to share some external practical support around fatigue which you may find useful- The Side Effects of Cancer Treatment – Tagged “Fatigue” – Comfort Crate.
Keep in touch and know that we are here for you,
I was diagnosed with Myelodysplastic syndrome (MDS) in 2021, followed by an unexpected JAK2 mutation which led to Essential thrombocythemia (ET). I take 500 mg of Hydroxyurea every day.
I do feel tired by about 1:00 in the afternoon. I usually read in bed and take a nap until about 4. I feel like I’m being really lazy, but I get so so tired. My Oncologist thinks it’s a result of the treatment and I’m told I’ll be on it for life (or until Bone Marrow Transplant). My red blood cells and hemoglobin are low from the Myelodysplastic syndrome (MDS), so I have anemia as well.
I’m 62 and retired. I used to have a lot of energy and ran my own small business which I loved. Between a very arthritic neck and fatigue I just can’t do it anymore.
I’ve decided fatigue is going to be a constant, so I need to make myself get things done - mostly in the morning and midday. I feel good if I get one or two important things done each day.
I’ve had a bit of trouble concentrating while reading, and sometimes have to go back and re-read a page. I also catch myself skimming headlines and getting words wrong.
So sorry about the issues you are having.
Thank you Bonnie for taking the time to tell me about your fatigue issues arising from Essential thrombocythemia (ET) and treatment, plus your other complicating issue. I can empathise with you to a certain extent. My low point in the day generally happens in the morning. It is generally about 1lam before things begin to clear. Best time is usually in the evenings, but I do try to get out in the afternoon if possible. We have a lovely garden, but 15 to 20 minutes doing anything in it is enough!! Quite often I have a persistent low grade headache. Life is not impossible, but so much more limiting now… A couple of years ago when I was 86, I was boasting of my fitness, so I am learning some sobering lessons, supported by my wife and an understanding Church community. I do hope you too with an overall condition more severe and complicated than mine have a similar sort of support around you. Angus
I tend to feel better in the evenings as well!
I bet you have a lovely garden.
I’m on my own, but have a lovely dog as a companion. I have loads of friends and a plucky, energetic 92 year old Mother nearby. She has more energy than I do!!! Also a beautiful son who is coming to visit with his girlfriend next week. Can’t wait!
All the best to you!!
Good evening @Angus, and all other contributors. I am a 58 year old male who was diagnosed with Essential Thrombocythemia (Essential thrombocythemia (ET)) just over 5 & 1/2 years ago, with the CAL-R Positive type 1 mutation, following on from my first (so far!) heart attack 6 months prior.
My most severe symptom is a very debilitating fatigue that seems to be with me 24/7. I still manage to work full time, out of financial necessity more than anything, but I do find that anything else outside of work needs to be weighed up as to whether it is worth the effort. I visit my daughters every few weeks; all 4 of them live about 30 miles away, but within a few miles of each other. Apart from food shopping, that is pretty much all I can manage. I do go out to meet some friends at a very nice country pub for my fortnightly social outing, and the hope is that on one occasion I may be sociable!
I have endured a sleep apnoea trial, and trying to sleep with that test equipment strapped to my body isn’t easy, but the results were inconclusive.
I have also had a course of B12 injections recently but can honestly say that I am yet to notice any benefit from them.
On a positive note, the human body seems remarkably adept at learning to cope with the trials that life, and our medical conditions, seem happy to throw at us from time to time.
Take care, stay safe, be kind to yourself and remember to keep smiling.
Thanks for these informative and encouraging emails on this chat line. I know that fatigue is an issue in Essential thrombocythemia (ET), but sometimes you need to be reassured that it is not all in the mind and that others feel the same. It is not as though this is a very common complaint. But I agree that family is important. We have three children,two of whom live in Australia. Thanks to modern means of communication we keep in regular touch with them and our grandchildren. Living in the West Highlands of Scotland, we are spoiled for beautiful scenery and find that even short walks can be very therapeutic - just as long as it isn’t raining! Have a good day