Newly diagnosed

[Tyray123]

Hi everyone

I was contacted by my oncologist on the 21/6 /2022

To confirm I have MPN, what a shock , got my first face to face appointment in Aug

Can anyone tell me if there is a recommended diet to be on

[Aime]

Hi Tyray123, sorry to hear of your diagnosis. You will be feeling bewildered, anxious, insecure, etc just now, but you have come to a place where you will get lots of support from the lovely folk on this forum, who really DO understand what you are going through. Keep posting and visit the MPN voice website, where you will find information you can trust. This forum is monitored by Maz and team, who are wonderful, helpful people. You can ask for a buddy if that would help.

The advice I was given regarding diet is to eat a varied and healthy diet, drink plenty of fluids and if you are fatigued rest. Above all, be assured of the love and support on this forum and don’t be afraid to ask questions, have a moan or a cry. We are all here for you. Kindest regards Aime xx😻😻

[Nikon7ii in reply to Aime]

The Mediterranean diet plays well with MPN’s. Emphasis on whole, unprocessed foods, low sugar, veggies and berries. Personally, I choose organics whenever possible. Drink water so you pee every 2 hours, except at night. 😉. Have a way to deal with stressors and you’ll do well.

[Meatloaf9 in reply to Nikon7ii]

This is pretty much the exact same information I received from my MPN specialist last time I saw him. Wish I could follow this recommendation. Best to you all.

[TLJ-1 in reply to Meatloaf9]

Yeah, I would second the notion to go with the Mediterranean diet.

[Tyray123 in reply to TLJ-1]

Thank you x

[Barbiebreath]

Hi Tyray,Welcome to the club no one really wants to be in but everyone is nice here and you’ve come to the right place for information and support. I was just diagnosed in Jan/22 but feel like a veteran now. This site has been my go to source and has helped to calm my fears. Yes, we are all here for you.

I don’t follow a diet but The Mediterranean Diet has been mentioned. 😃

[Tyray123 in reply to Barbiebreath]

Thank you so very much, for all your advice Veg appears to be on the top of my diet sheet from now on, especially the fruit and veg that lowers my platelet count, which I have to say is quite low compared to others

also it’s scary to think, my specialist may or may not be qualified in this field

I intend to ask her though

[hunter5582]

Hello and welcome to the forum. There will be a lot to learn about having a MPN and fortunately lots of time to learn it. Regarding diet, The Mediterranean Diet is what has the best support at this point.

There are a number of excellent presentation in this 2021 forum. You will find one on Nutrition by Dr. Angela Fleischman that is very good.

mpninfo.org/conferences/202...

All the best as you enter the journey.

[Tyray123 in reply to hunter5582]

hunter5582, I will see if I can fine Dr Angela Fleischmans presentation Thank you,

[Booagain]

Hi Tyray: I am 82 in a few days, was diagnosed in 2016 so still plodding along! Actually sometimes more of a skip than a plod so try not to feel too anxious. This forum is wonderful so am glad you have found it so soon.

Best wishes

[Tyray123 in reply to Booagain]

Wow, what an inspiration you are Booagin, thank you so much for taking the time to respond to my post and your most welcomed advice

[Wyebird]

Welcome, Yes it is a shockIsn’t it! I try and eat healthily in order to give my body the best basis to cope with the drugs, I take a few supplements biotin for the hair, sometimes B12 if my bloods need it and magnesium but nothing any more than that. ( all on the advise of others on this site thank you people😁)

Others on this site find certain things extremely beneficial.

[Tyray123 in reply to Wyebird]

wyebird , I will most certainly keep those vitamins you have suggested in mind Thank you

[Mazcd Partner MPNVoice]

hello Tyrary and welcome to our group. It can be very daunting when you are newly diagnosed, I hope that the information on our website is helping you, and also being part of this group, we all understand how you are feeling and are here to help and support you.

with best wishes, Maz

[Tyray123 in reply to Mazcd]

Crazy as it seems it not daunting to me, when so many much younger people with so much to live for are diagnosed with much worse, I always try to stay positive, but I do thank everyone on this sight for being there

At least I don’t feel alone,

As this condition is not a common one

Thank you very much for your most welcomed message, it is gratefully received

TyRay x

[azaelea]

Welcome,Tyray to this very friendly and informative group. Sorry to hear of your diagnosis but it’s not as worrying as it sounds. Do keep in touch with the group and ask about anything which worries you. It helps so much when you find so many people in the same boat! Good luck with your Haematologist appointment. Best wishes, Fran

[Tyray123]

azalea As un canny as it seems, I am not bothered, or stressed, about my diagnose

It is what it is,

I thank you so much for your support, I am just going to wait to see what the haematologist has to say and then I may scream and scout, but I am so grateful that it has happened to me in later life , now I can put everything else in order

Thank you so much for your support

TyRay x