Any dietary advice for a new diagnosis of ET?

[tessa46]

I am new here and have been diagnosed with ET JAK2+, 3 months ago. My platelets were 666 (!) and have now dropped to 576. I am on Clopidogrel, following a slight stroke 8 months ago which eventually led to the diagnosis. I am aged 67 but have always taken lots of exercise and am careful about my diet. I have a history of bad side effects from lots of different drugs, so I have always tried to avoid taking anything. My consultant wants to put me on hydroxycarbamide, which I am not keen on, so i wondered if anyone has any advice on diet for reducing plateltes? I did a Google search and it came up with a number of foods to decrease platelets such as raw garlic, gingko biloba, ginseng, pomegranates, and others, but i couldn't find any research to back this up. I would be really grateful if anyone is able to share advice about diet. Any ideas welcome.

[Superwoman]

Hi Tessa,

For me personally I was diagnosed nearly three years ago with ET thought my world was about to full apart, but was introduced to this great website MPN Voice and have never looked back.

All the lovely peeps on here have been In the same position as yourself, like you I am very prone to react to meds so was a bit worried when I was told that I would have to go on Hydroxcarbamide as side effects for most drugs crucifer me, but hey! I was really surprised that this is one drug I can tolerate so, so far so good, just pop them down and get on with life, I think that's what it is all about.

I have tried lots of natural products too but unfortunately they did not work for me, but just make sure that you drink plenty of water each day eat a good balanced diet with plenty of fruit and veg, keep fit, oh and if you can drink cherry juice really helps to keep your blood pressure down and is so good for you.

So my friend welcome to MPN Voice, we are all here for one another, there is always someone on here that will help. Maybe a buddy? Just ask Maz and she will will point you in the right direction.

So do not just sit there and get het up talk to us, we are a really friendly bunch.

Jean

[tessa46 in reply to Superwoman]

Many thanks Superwoman!

[Mazcd Partner MPNVoice]

Hello Tessa, welcome to our forum. Our advice is to follow a healthy sensible diet and to keep well hydrated. There is no data available to back up claims that specific foods or supplements will lower platelets. I completely understand your reluctance to start taking Hydroxycarbamide, this is something that we all go through when we are told we will have to start taking it, or indeed any of the other medications for MPNs, and if you do have problems taking them you can discuss alternatives with your haematologist. I would advise you to read as much as you can on our website mpnvoice.org.uk about all the different medications and I can send you our booklets on each of the medications if you email me with your postal address, [e-mail]. Best wishes, Maz

[tessa46 in reply to Mazcd]

Many thanks Mazcd for your help.

[digijools]

Hello tessa46.

I am PV JAK2+ and am just taking aspirin. After having one phlebotomy when my hemocrit was 58. My platelets are around 1110. I stopped eating red meat and made a list of vegetables that were high in salicylates but low in vitamin K. These include radishes, carrots, all kinds of peppers, raw garlic, ginger, mushrooms, aubergines, onions. I eat 1 lb of fatty cold water fish per week and some whole grains like brown rice and quinoi. Many of my symptoms such as tummy troubles are gone and my hemocrit is stable at 40. I suggest eating as many of these vegetables raw as possible. I also drink one small glass of red wine at night.

I also eat 2 raw cloves of garlic everyday. This really helps with tingling and leg pain.

Like you I wish there was clinical focus on food and not just medicine.

This regime really helped me.

Let me know your experiences too!

digijools.

[tessa46 in reply to digijools]

Hi Digijools, many thanks for this information, it is really helpful, I will try this approach.

[bigberta17 in reply to digijools]

Hi I am 71 and recently diagnosed with ET/JAK2 and praying that there is an alternative to the chemo drugs. So grateful to have found this support group--thank you all for any info you can share on this journey! Judi