I'm struggling to sleep at night. Last 2 days i have struggled yesterday by 3pm i felt someone had put a load of weights on me tiredness was awful. Today had to make myself work.  

Have you spoken to your nurse about your sleeping problems Linphy? I've no experience with ET but I do know that the Breast Cancer nurses were marvellous at coming up with suggestions and solutions to my various problems while I was undergoing treatment.

Thanks Caroline,

I have to say that you are the first medical person to offer me  any secific  advice about food.

I have repeatedly asked my haemo consultants about diet, but all I get is "follow a healthy diet", but I don't know what that is, and I'm not sure they do either.  I have not been told to avoid grapefruit or anything else. 

Some of the problem seems to be that ET is classed as a rare condition , 2 in 10,000 diagnosed per year ? I've even seen a figure of 1 in 100,000.  But as it has no obvious symptoms, is that just because the diagnosis rate is low ?   My GP says he has 3 other patients with ET, and it is only a small  rural practice in Wales.   

I am sure you will appreciate that we all wish to try find ways of helping our condition, and the lack of official dietry advice is to say the least frustrating.  You will see that on early posts vitamin K  vegetables seemed to produce an adverse reaction.  Is that true ?

So, is there an official detailed  dietry advice we can access ?

Does anyone have any other of the side-effects on offer apart from exhaustion? I am particularly concerned about hair loss/thinning as mine is already thin either because of the menopause or because I'm taking anastrozole.

Hi AndrewF,

It may be okay to eat pomegranates so do check with your specialist doctor if it is something that would interfere with your prescribed drugs.

I am afraid that there is no specific diet that people with ET (or any other type of cancer) should follow. So the best advice is to eat a good all round healthy diet.  There has been no evidence to prove that eating a particular type of food will have benefits in terms of how successful your treatment is.  But eating a healthy diet, not smoking, keeping to a healthy weight and keeping active can help you stay healthy.  It might be helpful to read the NHS information about a healthy diet here

Another charity called MPN Voice also gives some advice about eating well, you can see it here  Although you will see that organic food is mentioned there is no evidence to prove that having an organic diet is any better than a ‘normal’ one. 

There are between 1.5 and 3 cases of ET per 100,000 people. Cancers that affect the blood may not cause symptoms in their early stages. In its early development ET does not seem to produce symptoms but as it develops and affects the blood it can cause symptoms, we have information about this here

I cannot see any evidence that people with ET should avoid eating foods that contain vitamin K but I would recommend you check this with your specialist nurse or doctor.

I hope this helps.  Take care

Caroline.

I came off Clopidogrel, at the suggestion of my haemo consultant, but my fatigue and muscle / joint pains did not improve. Now taking aspirin instead.

I had another fatigue meltdown, having to spend several days in bed, felt too ill to even sit in a chair. Consultant accepted that hydroxy does not suit me, so I am now taking Anagrelide, which so far, apart from a bit of a headache, seems to be a big improvement. Family and friends say I look better, and I have been able to resume my exercise, swimming, walking basketball, walking football, that's 3 hours a week good  exercise  plus gardening and  outside work. With the days getting  longer and warmer will try to do at least half an hour walk every day.  

I realised that hydroxy is fungi based ( so I'm told ), and I know I'm fungi sensititive, allergic to penicillin, so that may explain the problem.

Discussions about diet with my GP, resulted in a  regime of a balanced diet, as low sugar as possible, but not extreme. GP says I can have a cream cake, once a week,  but not every day.

I feel much more positive about things, and able to get back to doing most of the things I want to do.

Came off Anagrelide, after more fatigue problems.  My GP diagnosed an irregular heart rate / pulse problems, so now under the care of cardiologist. Had another bone marrow sample taken, and awaiting results.