Welcome to the forum Andrew although I'm sorry for the reason it brings you here.

Tiredness or fatigue is quite a common side effect from chemotherapy but I have found some information on our website that might help as it gives advice on how to manage it. You can read more about it here. I have also found some information about your condition as well as an article explaining the difference between complementary and alternative therapies. If you do decide to go down this route do speak to your GP first as they will be in the best position to discuss this course of action with you.

Hopefully other members who have been diagnosed with essential thrombocythaemia or have had a similar diagnosis will post soon to offer their support and share their experiences with you.

I hope this helps Andrew.

Best Wishes, 

Steph, Cancer Chat Moderator

Thank you for your response.

Like most people diagnosed with cancer, I asked  “why me ?”.  But then, although classed as blood cancer because it is a mutation of the bone marrow, ET does not seem to be aggressive, but untreated  will cause a stroke or heart attack, or other problems.  So I feel lucky that my cancer in itself is not likely to end my life, at least not in the short term. The chemo tablets create side effects, but so far any increase in dose seems to only have a serious adverse effect for a short period, but may result in leukemia in about 20 years.  

The “why did it happen?” question, is another issue, I know I was exposed to benzene in my work over most of my life. But is that the only factor ?  Was my diet a factor ? My research on the internet seems to suggest that high sugar consumption could be a factor.  I have always had a sweet tooth.   But also as a beekeeper I have become aware of the issue of agricultural chemicals which effect bees, and if they kill bees maybe they are not doing humans much good.   Rather disturbing I have learnt that the international chemical companies are still actively selling chemicals which they know to be carcinogenic, which end up in the food chain.  Then there are the fast food companies, who use meat which is produced using growth promoters and high doses of antibiotics. 

With regard to complimentary therapies, what I am looking at is more a question of diet. I have reduced my sugar intake – chocolate is out, and most puddings, and replaced by fruit. So I am also looking for foods that may reduce or help to control the mutation. Pomegranate seems to be one suggestion.

On the positive side, I should mention that my wife  was diagnosed with cervical cancer 12 years ago, she had surgery, and continues to have clear check ups.      

ET seems to be a fairly rare condition -  1 in 50,000 is quoted. I don’t know if that is every year or over a lifetime.  So there is a limited  amount of information and research on the subject.

Anyway I would be grateful for contact from anyone else who has the condition, to discuss possible ways to improve the condition.

Hello I also have ET and jack 2 . As far as I am aware I have not been exposed to benzene, highly unlikely as I'm not even sure what it is ?   I am not aware of anyone else with the condition , where I live so no one that I can talk to , so that is why I have searched here , as they are just starting to want me to consider the chemo therapy route. Which I am far from happy about . I seem to have a more savory tooth , but have always added sugar in my coffee and sometimes tea. I'm just starting out with exploring WHY , but felt a bit alone . Should you have any further info , I would be interested, and vice versa . 

Thank you 

Hello Juli. I can appreciate you feeling alone, because as ET is a rare condition, unless you happen to live in a major city , there are not any support groups.  Trying to find out why you have it seems to be difficult, all the consultants I have seen either do not know, or do not seem concerned about possible causes, so I can only go by the research I have done on the internet. The most popular seems to be an exposure to benzene which is a component of petrol and oil products, either by contact or from the fumes. I had that exposure from an early because my family ran a garage, and I continued in the business until I was 55. Because it is a rare condition, there does not seem to  be much research into causes, which may be due to other exposures.  That is one reason I started this post to see if  any other sufferers  knew of any possible causes.

My GP has told me that he has 3 patients on his books with the condition, so perhaps it is not as rare as the official figures suggest.

It is a frightening prospect being offered chemo, but having taken it for over 6 months, I have not had any major side effects. My platelet count stared at 1,000,500 which a was 3 times the normal, so I was at serious risk of a stroke or heart attack, but having taken, hydroxycarbamide which has been increased up to 16 capsules a week, the count has come down to 450, nearly normal.  Some days I feel very tired, particularly when the dose has been increased, but you seem to get used to it, and most days I feel OK. I also take clopidogrel, to reduce blood cloting risk, but maybe I will  come off that now that the platelet count is near normal.

I hope this is of help. At least we can be grateful that the condition in itself is not going to end our life, unless it is left untreated, which is more than can be said for most cancer sufferers.  

Perhaps there should be a Facebook page for ET sufferers .

All the best, keep in touch, let me know how you get on. Be interested to know if you think of any factors which amy have caused your ET.   They  say it is not hereditary, but my father died of a heart attack back in  1971, and two uncles died of hearty attacks, but what caused them I do not know.

Hello Andrew

I was diagnosed with ET (JAK2 neg) in January 2016.  I was very active up until diagnosis, including dancing 4 times a week.  I'm on 3x 500mgs of Hydroxi.  Because of my condition I also have palpitations and am now on heart tablets.  It's a vicious circle.  I had to give up my dancing which was like taking my air away from me.  I try to stay active as much as I can and do the treadmill as much as I can, but the tiredness and fatigue can kick in at any time and once it does, i'm no use to anyone.  It doesn't happen often I might add but i'm nowhere near as active as i used to be.  I simply do not have the energy. 

Hello Forwardocho,

Yes, I share your difficulty with fatigue.  Some days it seems to hit you, and you just have to give in to it.

A friend of mine  also has a blood disorder, not ET , but she says "You just have to give an occasional day to the treatment, just accept it, and be thankful for the days you are not so bad"

I am still trying to increase exercise to maintain some fitness, but it is a struggle. I try to have an hours swim once a week, play walking basket ball once a week, and do about an hour of  walking when I can, but I do seem to get muscle pains.  But I keep trying.

I have tried various food suppliments, but have not found anything yet which makes any great improvement.

Has your platelet count come down anywhere near normal ?  I have noticed the fatgiue factor does seem to have eased since  I got down to 450K.   

Do you think there should be a closed Facebook page for ET ?    

I forgot to mention.  I was advised to take my Hydroxi before going to bed, but I found I felt terrible in the mornings, and only began to feel better in the late afternoon. So I gradually advanced  the taking time, and now take it about 2pm.   I begin to feel weary about 10pm, and try to go to bed abot 10.30pm.  I now feel much better in the daytime.  It may vary person to person, but worth experimenting with different timings. 

Had a bad day today, backache when I got up, which persisted until about 7pm.  No reason why it happened, but I did take  the larger dose of Hydroxi yesterday.  I plan to take the larger dose, so that if I feel grotty the folowing day, it is on a day which I don't HAVE to do anything.

Anybody else experienced similar side effects ?  

I was diagnosed with essential thrombocythaemia about a year ago and can sympathise with Andrew about the tiredness.  It's as if one minute I'm fine and the next minute I feel nothing except a strong urge to sleep - not just the usual tiredness, more like hitting a wall and sleep is the only thing to help. I started off on 1 x 500mg hydroxycarbamide per day, this was increased to 1 one day and 2 the next, and for the past few months I've been taking 2 x 500mg per day.  Good luck Andrew.

Hi Andrew.  We've probably all been extra tired over the Christmas period (I know I have!!) and I'm glad you're almost back to normal now.  I go back to Consultant on 17th January so hopefully platelet count might be down a bit - fingers crossed anyway.