Hi, I was diagnosed with et last September by way of a pre op checkup. I started taking hydroxocarbomide which eventually brought my platelets back to a normal level, however I am having trouble coping with the effects of extreme tiredness. I have experienced tiredness symptoms before but this is a very different manifestation, and happens in a random way. I can be walking somewhere and out of the blue my body stops and I have to stop and sit down. My thoughts become cloudy and I have trouble forming words, it is very distressing.I experience muscle pains in my leg muscles especially. This happens on a daily basis, I am wondering if this is the result of the illness or the medication? Any thoughts?
Hi @Gary57 and welcome to the forum.
It’s a great place to share experiences and to support each.
What you’re experiencing sounds really tough and must be difficult to manage. I can hear how distressing this is for you as well. Have you managed to discuss this with your medical team? If not, I think it’s definitely worth contacting them.
The support line is really useful as well and it might be worth you talking it through with them - if that’s something you think would help. I have shared the link below.
Please take care of yourself and keep posting.
Hi @Gary57 a great big welcome to our forum and I certainly cannot better @Nichola75 response word for word.
The symptoms you describe sound debilitating.
Isn’t it difficult to know whether symptoms are the illness, medication or something completely different.
Please let us know the response you get and really be kind to yourself.
Hi Gary57, and welcome to the forum.
I too have ET and was diagnosed a little over 5 years ago now, following on from all of the associated blood tests after having had my 1st (so far!) heart attack a few months previously.
I suffer from fatigue on a daily basis, but how much is down to the Pegasys treatment, the ET, the heart attack itself, or simply my age (52 at the time of my heart attack, 58 now), neither I, my GP or the Haematologist can say.
I am a truck driver/crane operator and manage, somehow, to still work full-time, although that seems to be getting more difficult/tiring now and, as a consequence, more stressful. I seem to be almost permanently achy and fatigued but I try to keep modestly active.
I’m not sure if my words will be of any comfort to you, other than to show that you are not alone.
Drinking plenty to keep well hydrated helps me some, along with avoiding management at work!
The only other advice I can offer is to keep smiling, don’t be too hard on yourself, and enjoy life as much as you can.
Welcome to the Forum. Thank you for posting, often their are others in the same position as you, but are a little more reserved in posting, so wait hoping someone else will ask the question that they also want to know an answer to.
Fatigue is a huge and complex symptom and/or side effect. It can be due to disease, it can due to medication or it can be both. Also it can be something unrelated, like a different medical issue.
Usually if it is disease related, also know as Cancer Related Fatigue (CRF) it might improve when treatment starts, as the medication begins to control the blood cancer that affects that person, for you it would be platelets. Sadly though, this can also cause more fatigue as other blood cell counts drop too, for example your Haemoglobin (Hb). May I ask, when did you last have any blood tests?
I would strongly advise you speak to your team soon and let them know you are struggling with this fatigue. To me it sounds different to fatigue brought on by medication or disease. The team may want to check your counts aren’t going too low. The Consultant/Specialist may need to ‘tweek’ your HU dose, to balance your high platelets with keeping your red and white cells stable.
They may also consider doing some extra blood tests for iron levels, B12 or Folate, as sometimes being deficient in one of these can also cause fatigue - do ask about these if they don’t suggest them.
As @Jimbo165 has said, please do drink plenty of clear fluids (water/squash), this helps in so many ways, especially when being on HU.
Take care. Let us know how you get on.
Best wishes, Heidi.
Hello Gary57 - welcome - and I am glad you have posted as it’s so good to be in touch with others and gain understanding of disease and their meds isn’t it ! I am an ET patient diagnosed 17 odd years ago, I have 13 or so years on Hydroxy from diagnosis and recent years been on Pegasys interferon injections. The fatigue you mention is certainly very familiar - and the frustration and unpleasantness as you mention of it suddenly appearing as if from nowhere it can happen in split seconds can’t it, very disconcerting and upsetting. Do, as all have said, check it through with your consultant so that your next blood tests can be adapted with a few extras to check for anything else as certainly Hydroxy can effect all the blood counts (as does Pegasys) and it is a continual balancing of them all - but other than that what you describe is very much part of ET and also our treatments - I have found over the years it can ebb and flow some weeks when it happens each day as you are finding at the moment then for a time it is so much better, for what appears to be no reason - I know I have had it explained that “much” goes on all the time in our bone marrow with the proliferation, obviously unseen to us, but the effects can be that instant fatigue and lack of strength - so even when our counts are being kept controlled and safe levels, the proliferation is still going on and so the confusion sometimes that blood counts are good but I feel rough! Hydration is so very vital for ET, keeping water with you and drinking just that bit more than an average person, sips along the way and it is amazing what a difference it makes to that weak feeling or taking in water when you feel weak. Also, again it sounds basic, but good protein too - something each meal - is another simple thing that helps or if out and about and you feel the fatigue weakness hit, egg sandwich or some such from the local shop can get you going again! It is a bit of a conundrum between what the disease causes and what’s the Hydroxy - and your consultant can help and tweak doses to see how it helps - it’s a usual to keep having the dose tweaked up and down according to how you are doing anytime and it’s funny how a capsule or two less in a week can also make a big difference on effects - so do chat to your consultant or clinical nurse specialist soon so you can get some help - and keep us posted how you get on!
Thank you for taking the time to post Jim. I am feeling that I am not alone on this path because of people like you sharing their experiences
Thank you Heidi, I spoke to my GP today, who admitted he was unfamiliar with ET and hydroxy, but gave me a check up to reassure me my vitals were good. He has arranged for full blood count checks, and I lll be seeing the haematologist soon , so I’ll discuss my symptoms then. I’m already feeling that my symptoms are a result of the et and the hydroxy, the comments I’m receiving confirm that. It’s a bit of a double edged sword in that it brings your platelets level down, but leaves you with this fatigue. At least I’m not alone!
Thank you for that useful post Jill. I was only diagnosed last September as a result of a pre op check up. I had the op in October, got sepsis and ended up in hospital for 3 weeks. My platelets count went up to 900 at this time. The doctor s couldn’t decide if it was sepsis, ET or Hydroxy making my platelets high. Eventually they came down to an acceptable level, I really wanted to come off the meds as I believed it was them that was making me feel unwell.
The sepsis added to the misunderstanding, and it also left me weak and fatigued. As I recovered from sepsis I began to try walking a little every day and as you say tried to drink more. As a fairly fit person I struggled with the fatigue but tried to remain positive.
Eventually I got a fair amount of energy back and was able to do longer walks, but started with these new scenarios where I would be walking and my body would shut down and I found it hard to speak or focus. My brain seemed to fog over. This would be post Xmas time. These episodes have continued almost on a daily basis, but as you said, I would have a few days remission occasionally.
I told the haematologist this on my last visit and she did not seem too concerned as my platelets were doing ok. She told me fatigue was a side effect of the meds.
My GP is doing spfull blood tests to see if anything else is going on, so we shall see.
You have been on this journey longer than me, and I thank you for your advice and concern
You have certainly been through a lot in recent times and sepsis would certainly well add another layer to the fatigue you have been experiencing, takes some time to recoup from that in itself. I wonder if your haematologist is a MPN specialist as it does make a big difference to be under one who is, who has experience of both the disease and meds. Fatigue is a well known element of all the MPNs not just the treatments. It’s worth touching base with the charity MPN Voice - their website contains good information including sections on fatigue. Your description of experiencing “shut down” is the exact way MPN fatigue is - I always feel saying to anyone I am so tired (which people just associate with usual tired after working hard etc etc) or fatigue (which people hear as a light thing) doesn’t put across what actually happens - shut down is what I have learned to say to people over the years and it gives more emphasis to what really goes on. All the best
I’ve got ET - diagnosed a few months ago.
I’m struggling to understand why my fatigue comes and goes. I don’t think it’s the meds as I’ve had fatigue for 3 years without any meds (I was told I had Long Covid) and if it’s the disease you would think the fatigue would be constant.
Can anyone explain please? TIA
Hi, I have et, and like you have struggled with fatigue for most of the time since diagnosis, and a little while before. I have wondered if the hydroxy was a possible cause of fatigue, but the haematologist thinks not. Further blood tests have revealed I have low iron and vit b12 for which. Am now receiving medication. My thyroid function is also low and I now have to take meds to counter that. It will be a while before I see any improvement, might be worth you getting some blood tests.
This is my response on your other post.
Hi @HLowery this is a very personal reply, not a medical one.
My fatigue comes and goes because I believe it comes on with what personally stresses me (I do not deal with stress well since my diagnosis) and overdoing it emotionally, medically, physically or practically.
Sometimes it comes on instantaneously and everything is just all too much, sometimes it comes on up to 48 hrs later.
Sometimes I need to rest or have a sleep other times fresh air and appropriate exercise actually helps me.
I have more energy earlier and flag in the evenings.
I have got to know myself and how I function over the last 19yrs since diagnosis, but everyone is different.
Be kind to yourself
Hi @HLowery, I’m sorry to hear you’ve been coping with fatigue over the last 3 years. I wondered whether you have, or indeed needed any support with this at all? If you do please don’t hesitate to get in touch with our Support Team, and we’d be happy to talk things through with you (Blood cancer information and support by phone and email | Blood Cancer UK). In case it’s useful at all, we have a resource on the topic of fatigue including coping strategies, and information about where to get further support- Blood cancer and fatigue | Blood Cancer UK.
Take good care of yourself, and remember that we are here for you.
That’s really kind Tanya - thank you. I’ve visited the web pages you have highlighted and they are helpful.
Hi Gary been away from the forum but the symptoms you have said are exactly the same as mine.
I have ET been on Hydroxycarbamide for two years and fatigue is my biggest worry
The leg muscle thing is common with ET
I walk alot and sometimes get that thought of having to stop.
The confusion thing i think is linked to panic attacks…maybe not the same but had them often myself.
I realised that i was trying to walk like i did before i was ill
Now i only walk when i feel like it and sometimes know straight away that today is not the day.
We all try and do what we did before the illness but the fact is we have to tone it down a bit…some days you will be great…others you will hit that wall and as you say your body tells you that.
All our organs are working extra hard and thats why we are tired
We both have an illness…i played golf weekly…not played for over a year andt hat was with a buggy.
So Gary while not belittling anyway in our illness many folk with Blood Cancer cant even get out of bed
Though we have been dealt a crappy hand it could be a lot worse
Managing fatigue is hard…because every ounce of you doesn’t want to admit …i cant do this today.
I hope in time it gets a bit easier it has for me though i still overdo it at times.
Look after yourself and when you hit that brickwall again dont feel so panicked…all the best…Lee
Hello @HLowery . I have Essential thrombocythemia (ET) too. I was diagnosed last October, but the Dr thinks I have had it for a lot longer. (An old blood test showed high platelets, but a previous Dr said my test was ok!!). I have suffered fatigue for many years, but initially I put it down to other medical ailments. My haematologist says it is a symptom of Essential thrombocythemia (ET) and now I know why it is like it. There doesn’t seem to be anything I can do to ease it, only rest when it hits badly. Some days are better than others, but if I overdo it, it will kick in with a vengeance. I don’t think it is related to the Hydroxycarbomide , as I only take aspirin at the moment, and the fatigue is steadily getting worse.
Hi @Chris1 if your fatigue is steadily getting worse you might want to let your medical team know so they know what is going on for you.
I copy the Blood Cancer UK website link to fatigue.
Blood cancer and fatigue | Blood Cancer UK for you although I know @TanyaBloodCancerUK has also posted it.
Take lots of care and please keep posting how you are doing.
Hello Erica. My haematologist is fully aware of my fatigue, and I do mention it each time I see him. It would seem that they just take it in their stride as being part of the cancer, but offer no help with it. Maybe there isn’t much they can do, as I know that most types of cancer involve fatigue, and I don’t know of anyone who has been given anything specific for it. I just listen to my body and rest as soon as I am able. It is good to read information about it, as anything that can help is always a bonus.