Diet changes

[Cousino139]

Hello everyone,

Recently my wife has been doin a lot of blood tests(she's 28 years old) and she has a mutated jak2 gene and is in the early stages of ET the doctor won't do any treatment right now because he said it will do more harm than good. She will also be getting a second opinion about all of this because her doctor doesn't seem to have much for answers on ET. I'd like to know if anyone has changed their diet in anyway to help with some of the symptoms. For my wife she has fatigue, low iron (but is allergic to iron pills), high white blood cells and high platelets, tingly hands and feet, frequent headaches and slight pain in her spleen area( which she had an ultrasound on and they found nothing) if anyone has done anything to relieve any of these symptoms I'd like to know, I like to think I'm a decent cook haha and I'd make whatever I had to even if t helps just a little. Thanks in advance for any help!

[rebeccalub]

Since your wife is symptomatic it is recommended she be treated. Are you in the states?

[Cousino139 in reply to rebeccalub]

Yeah, New England

[Cousino139 in reply to rebeccalub]

We are planning on getting a second opinion when she gets her blood work done again in 6 months. Just, in the meantime I wanted to "naturally " relief some of her symptoms.

[JudyN in reply to Cousino139]

water. Hydration is important.

[Mardi in reply to Cousino139]

Yes water . Everyone wants natural benefits but it's been tried and tried -don't let her et progress without proper treatment whilst using vitamins etc. Some vitamins cause too much iron for the spleen to cope with I think. Get treatment. Good luck

[rebeccalub]

Gotcha, I don't personally know of any dietary changes......just the normal healthy choices.....

[Mardi]

She needs treatment imoh. I n ,have PV. They are saying the earlier the better. Usually phlebotomies ( for Pv anyway) . Over 60 medication is needed. Well she is well under that! I would see a second haematologist. She has a lot of symptoms -at 70 I didn't have that many symptoms.

[MPort]

Hi,

Since you are in US you may wish to look at this MPN site. I have pasted the links below. I think you go through the list owner to get registered.

I have PV so cant comment on ET. A good balanced diet is always good but in my experience the fatigue is at a deeper level than food can reach. A good coffee cheers me up though.

Best of luck in your search to help your wife.

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[Kathymoore]

Baby aspirin will relieve the tingly hands and feet ( erythromalgia ).

[Mazcd Partner MPNVoice]

Hello Cousino139, welcome to you and your wife. With regards to diet, we recommend following a healthy balanced diet, try to avoid processed foods, and stay well hydrated.

This information on our website will help you

mpnvoice.org.uk/living-with...

There is a lot of very useful information on our website mpnvoice.org.uk about ET, have a look at some of the videos on there, these are of patients talking about their MPN and also some videos of leading haematologists.

mpnvoice.org.uk/about-us/vi...

you can also download a copy of our booklet on ET

mpnvoice.org.uk/documents/t...

I hope this helps. Best wishes, Maz

[urlbee51]

I have early stage primary myelofibrosis and I have found that fighting the fatigue with alot of water, protein, and walking helps tremendously. Goodluck