Tiredness and essential thrombocythemia

[Monkobutlers]

Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just say it’s a side effect and her age. But that really isn’t good enough. Any helps and tips welcome! Thank you.

[Helpatlast]

Hello sorry to hear mum has ET and finding the fatigue hardgoing (which it is and goes beyond the normal tired of life) it is unfortunately both a symptom of a MPN itself and a side effect of Hydroxy the chemo most usually used and varies patient to patient even time to time for each patient. The bits i have found handy over quite some years living with ET is to ensure lots and lots of water drinking thro the day (Hydroxy as a drug will dehydrate you), its the trick of keeping ahead of dehydration always having a little water bottle with you, drinking from it regularly, on a far more usual basis than someone would normally, right from waking up in the morning, it can be surprising what a difference it makes. Also keeping up energy levels with protein snacks can help, i always have a little box of nuts with me, feel a bit tired or lacking energy, eat a few, again doing so bit more than someone would normally - its sort of keeping ahead a bit of the low ebbs of fatigue that hit. The other handy thing, and it takes a bit of trial and error, is finding the "box" of limitations that you can individually accomoplish and manage - and then work within that box, as far as possible, on a weekly basis. If something big is coming up, account for it and get good rest before and allow time for rest after too as the big things can take it out of us. By finding the box that works for mum (as it will be different again for each patient) will enable her to still enjoy life, within the box of limitations that she can manage. And not to feel guilty when rest or a snooze is needed, take it, and know we all do the same 😀😀 Hope that makes some sense!! All the best to mum.

[ksos]

Hi -- I'm 67 and was diagnosed with ET two years ago. Fatigue and accompanying depression are definitely symptoms of ET, although many doctors who are not MPN specialists don't know that. I believe it is also a side effect of HU. If you search "fatigue" on this site, there is a great deal of useful information and comforting support that I always find incredibly helpful. Consistent advices is that it helps to exercise as you can (walking is great) and to drink a lot of water. There are many other additional things that people have found that help, like taking B-12 and adjusting your diet.

All of those things have helped ease the fatigue, but nothing, at least for me, has eliminated it. So I've also adjusted in my life as needed -- reducing activities, figuring out what really matters because that's where I want to spend the energy I have. Good luck to both you and your mother, and stay in touch. Best, Kim

[Helena303 in reply to ksos]

I feel depression is part of my Et as the fatigue can bring you down. You can feel strong one day and happy you have some energy. Next day you can feel fatigued get more bone pain. It’s obvious this can wear you down. My b12s low again so some days I can’t pull myself together. Think I’ll be this way for the rest of my life. I’m getter older like you. It’s obvious it going to effect our mental health. I’m ok some days but believe me yesterday I was so shattered and drained. I felt calm and a lot better today. But I do get periods of low moods.

[Osteomyelio]

I was recommended to take Wisconsin Ginseng for fatigue, I think after about 60 days it is helping— but a physician should know better than I if it is okay for your mom to take.

[Osteomyelio]

With my Myelofibrosis, I also have hyponatremia (low sodium) with causes me fatigue. Thermotabs (salt pills help me)- my physician approves it for me. My athlete friends use them too.

[Marossi]

I’m sorry to hear your mother is suffering from fatigue - it can be very frustrating sometimes. I suggest she has her iron, B12 and vitamin D levels checked as a deficiency in these can exacerbate the fatigue. I found iron supplements when I was severely anaemic as well as regular B12 injections have helped immensely.

[Monkobutlers]

Thank you everyone for your suggestions. It’s very helpful. She really doesn’t drink much so that could help. Just wish I could get her to come on here I think it would help!

She also suffers from loss of appetite- is this also a side affect anyone else gets?

[Chaz1 in reply to Monkobutlers]

Sometimes being exposed to others scares people, my hubby doesn't want to join any groups but is happy for me to be his voice. I agree with all the suggestions & also to cut caffeine out. People use caffeine to try to keep awake but if dehydrates & I can't remember where I found it now but in the early days after diagnosis I found a few articles that said caffeine is counter productive for people with fatigue. I cut caffeine in the house completely & it has helped a bit. I can tell when he's had caffeine it's apparent that he's drained so it's worth trying & so many places offer decaf & caffeine free now. Loss of appetite is felt by some, particularly at low energy, she maybe best to try small meals little & often. It was recommended to drop 3 main meals a day to 5 small meals, it's easier to face if you don't feel like eating & also stops the dip in energy. I carry protein bars & nuts for hubby as he might not feel hungry but he looks ill & I sit him down with a water & a nibble & it picks him up. We'll done on being her support xx

[Hypothyro in reply to Chaz1]

Caffeine is a pick me up & wont dehydrate. You’d have to drink have serious amounts & not be drinking enough water, plus the good effects outweigh the bad such as raised metabolism, fat burning etc. But each to there own for what works for us all, I’m still trying to find 👍

[Chaz1 in reply to Hypothyro]

Thanks for your insught, if I find the medical reports I read I'll share however if you see hubby after a cup of caffinated coffee you'd see what I mean. But then everyone is different because all the cells numbers are different. I'd still advise reducing caffeine as it activates a part of your brain that can cause you to be more depleted once the boost is gone.

[Cjsassy in reply to Monkobutlers]

Yes. Almost impossible to eat/more often than not. Try giving her very small amounts of food at a time. I even use tiny forks & spoons.

Not sure why/ but it helps. The worst for me is someone shoving a big amount of food at me/ & telling me "You HAVE to eat"...

We know. We know!

[kp27kathleen in reply to Monkobutlers]

Yes for sure. I have been on HU for 4 yrs and have not had an appetite. I have lost 20#. I only eat because I have too and very little.

[Indigo42916]

I am also taking Wisconsin American ginseng. Good study from Mayo clinic in US, for chemo patients to fight fatigue. Very inexpensive.

It can affect platelet aggregation so do check with your healthcare provider.

Take good care.

[Ebot]

Hi. What you describe is pretty standard in the MPN experience. Whether it is the disease itself and / or the meds that is driving the tiredness is open to debate. Added to which there is of course the question of whether there is something else going on that is exacerbating the sense of fatigue - either disease related for example, low iron levels - or something else altogether. And age may also be a factor. But the bottom line is she shouldn’t feel overwhelming fatigue constantly. And yes, not surprisingly it will impact on her mental well-being and make her feel low.

So the big question is, where is her consultant in all of this? I wasn't sure from your post. Is s/he denying the fatigue is MPN related? Is s/he simply saying nothing can be done? Fatigue is most certainly one of the most common symptoms of MPNs (in-fact, the most common symptom). I would be asking questions around iron levels, medication dosage (and possibly med rethink) and also asking for a referral to a cancer fatigue programme and possibly an onco-psychologist (not sure of official term). Also perhaps an MPN buddy (through Maz here on MPN Unlocked) and depending where you live, coming along to a support group or info meeting.

On a practical level. Hydrate. Hydrate. Hydrate. Simple but incredibly effective. Plenty of people here can testify to the effects of drinking / not drinking sufficiently. And some exercise (walking the dog). That is so important for both physical and mental health.

But yes, I’d definitely get general health checked too particularly given the appetite issue (which any way you look at it isn’t going to help her feel better in terms of the MPN). Sorry for the long post. HTH.

[Wyebird in reply to Ebot]

A really good reply hope the poster takes heed of all you’ve said

[Uzza]

Hi,

I also have ET, and also get tremendous fatigue. the only thing that works for me is resting.

[Wyebird]

I Always ask for copy of blood test.

Doctors don’t routinely do iron test. Maybe something to look at.

Unfortunately fatigue comes with Et and meds.

X

[Searcher56]

I am ET JAK2+ 63 years old. I have been feeling tired recently but I am putting it down to air pollution. Tiredness is a combination of many things. I do not enjoy summers any more, the hot summer months are an endurance test because of the air pollution. One way of coping is not to allow myself to get roped into things that I do not really enjoy.

[kp27kathleen in reply to Searcher56]

Sounds just like an Arizona summer

[Doggy1903]

Thank you for your post. I am also an ET girl, aged 61yrs!! On the hydroxy too. Yes it may be worth having Vit b12 and also thyroid checks. These autoimmune problems all seem rather connected. lots of lovely snacks, fluids and rest. Nature tells us what we can and cannot do, so not to push yourself too much.Take care and enjoy this wonderful forum.

[Lifam]

I am 69 and diagnosed with ET Jak2 few months ago but have learned what mentioned to your mum is definitely side effects of both ET and the medication. I agree with others that being hydrated is very important, all forms of exercise is good but also need rest, I am also on anti inflammatory diet, more on whole grains, fruits and fish, also having handful of nuts n seeds everyday(like almond and walnuts, pumpkin seeds and sunflower seeds etc). About 3 litres of water.

Agreed other members good advice too.

[Anag]

Hi Monkobutlers,

There are lots of great tips above!! All great. It is also good to take CoQ10. All of us have CoQ10 levels that start to go down starting at 50. CoQ10 helps the mitochondria in our cells stay strong. Mitochondria are the batteries of all our cells and are found in every organ, muscle, etc. The greatest amount are found concentrated in our hearts and brains. Our cells start to get weaker and chemo, stress and environmental insults like pollution, chemicals in our foods, cleaning products, cosmetics, smoke, etc weaken the mitochondria and we lose energy. Low batteries, low energy.

Since I take CoQ10, I feel normal again. This is definitely worth a try. I take 60mg daily.

All the best. I hope you are able to to get your mom up and running with all the advice here! Anag