Diet for ET sufferers

[azaelea]

Hi, I posted yesterday,asking if anyone could recommend what diet one should follow when suffering from ET JAK2+ but the post seems to have gone astray. Just wondering if certain foods benefit symptoms of the disease and boost the immune system. Sorry to post again, but my internet connection was playing up yesterday. Your views will be gratefully received. Best wishes,Fran

[Tico]

Hi fran, just a good well balanced diet I now follow. I eat plenty of fruit and veg and i've incorporated a lot of fish lately, sardines, tuna and fish pie. I don't drink alcohol anyway but do enjoy my coffee and sugarfree energy drinks. Cut out all junk because i'm trying to lose weight and started exercising daily(not for last couple of days due to a cold). I don't really think haemo's recommend any special diet for people with an MPN, just a well balanced diet. Atb,tina.x🤗

[azaelea in reply to Tico]

Thanks for your reply Tina. I've had lots of helpful replies from our lovely friends on here and am trying to thank them all individually. I'm pleased to find from most that I'm following the correct balanced diet,so will carry on with my fish, chicken,sardines, mackerel ,fruit and veg. Hope you're keeping ok., best wishes,Fran

[fee13]

Aneliv9 posted this awesome link, look down to nutrition. It's all very useful info.

healthunlocked.com/api/redi...

[fee13 in reply to fee13]

Otherwise general consensus is Mediterranean or ketogenic diet.

[azaelea in reply to fee13]

Thank you so much for this link which I've saved and will have a good read of. I'm following the Mediterranean diet now more or less thankfully. Regards,Fran

[Bluetop in reply to fee13]

What a great find! Thanks for posting!

[socrates_8]

Hey Fran...

Firstly, we are all a tad different from one another... What works for one, might not for another etc...

In any event, in my edifying myself concerning my MPN, (Post ET / MF).

I learned the value of two (2) important pieces of information where diet is concerned:

* Anti-inflammatory diets

* Intermittent fasting

And I couple them to my cycling regime. Once upon a time, not so long ago, I couldn't really cycle much at all... but now I am cycling over 300+kms pw.

All of this has also seen a molecular reversal in my Bone Marrow scarring from Grade2 down to Grade1.

Hence, I like to believe that everything that I am doing is being most helpful where my overall longevity is concerned...

You can read more about my efforts in our AustraliaMPN FORUM here:

mpn-mate.com/fundraising-fo...

mpn-mate.com/sponsors/

Best wishes and keep smiling Fran...

Steven

(Sydney)

[Hidden in reply to socrates_8]

Hi Steven, I am really interested in knowing a bit more about your dietary changes. I have ET jak2+, platelets usually around 1100-/+.

I would prefer a more natural approach rather than drugs . I have just read a book “ how to starve your cancer” by Jane McLelland and she also recommends diet/supplements/some off label drugs but of course each cancer/person is different. She recommends looking at the drivers of your specific cancer then depriving them of that source . Anyway I would love to know a bit more about what you have done specifically . Thanks . Debra

[socrates_8 in reply to Hidden]

Hey Debra,

Me too...

In other words, I would also prefer a more natural (drug free) approach...

... However, I have already had two (2) TIAs, and I really don't want to risk another.

The last occasion was a real eye-opening experience... Have you ever been in an Earthquake? Well I have, (6.4 in Western Sumatra), and my TIA actually reminded me quite a bit of that event, because it started and felt like much the same thing...

Tinitus, when it visits us can be a sudden event, or like my previous TIA. a building affect. Like the Earthquake, at first, it was just a slight noise in my ear, (like a ever so small rumbling beneath my feet almost inaudible). Then, it slowly grew and grew, before 'SMACK' it pitched to a crescendo followed by a physical 'SLAP' to the senses.

The major differences of course w/ the TIA, was that after the event my speech was not impeded, my right arm was not paralysed, and the the left side of my face was also not in spasm, along w/ my lips...

During the TIA, I was help captive to that event, much like a Roo in the headlights, (people in the UK replace Roo w/ Deer During in the Earthquake event, I simply stood & watched in total disbelief of what I was seeing... FASCINATING!

However, and so sorry to digress...

My diet is much as follows:

* Fresh fruit and garden vegetables

* Wild caught seafood where possible (no meat at all for me)

* No unprocessed foods

* No added sugar (which are in all processed foods of course)

* No soft drinks

* No alcohol

* Low Carb's (LCs) all other foods (make a list of foods you like w/ LCs)

* My Intermittent Fasting regime is that I only eat once a day, in the evenings (4-8pm), can break it up a little to suit...

And my cycling of course, and that's pretty much it really...

All foods have carb's of course... And 'they' say the BEST diet... Is the one that you can stick to... After a while, my diet just became second nature, and now I eat far less, but my enjoyment of food is no less...

However, this is not for everyone of course, and you should check w/ your medical team if they believe it is good for you too... in my view.

Hope this helps Debra... happy to answer questions should you have more...

Best wishes

Steven

[Hidden in reply to socrates_8]

Thanks Steven,

I am pretty much doing all that, except the fasting( but could easily incorporate that), i do eat meat but only organic and i do have occasional half glass of red wine. Did you just stop eating meat to help your health?

Do you by any chance take any supplements? If so which ones do you find most helpful?

I guess you are on a blood thinner too following the TIA's. I take occasional aspirin (age 52 with no prior thrombosis so low risk)

Sorry for the questions, just keen to learn from others, especially as you have managed to reverse your condition a bit. There are a number of people with cancer who were told they were terminal, but they have managed to survive many years by diet and lifestyle changes. I see no reason why that cannot be applied to ET as well.

Thanks for your help.

Debra

[azaelea in reply to socrates_8]

Thanks for your reply ,Steven. Wow, you certainly are pulling out all the stops to keep fit. I admire all the cycling and will have a look on the link you sent. I do exercise as much as possible but only by walking , usually about 45mins a day as I am 83 years young now but my husband and I make every effort to keep fit. I seem to be following the correct diet from what all my friends on here are saying, so will carry on . Keep well and all the best,Fran

[socrates_8 in reply to azaelea]

Hey Fran...

By the sounds of it, you should be providing me with advice Fran... Wow! Sounds to me like you are doing exceptionally well, and long may it be so...

We shall have to glean all your secrets of a happy longevity ...

Thank you &

Very best wishes Fran

Steven

[Hidden]

Hi Azaelea

I find keto good for MF but I agree no matter what diet you follow that exercise and drinking plenty of water is very beneficial. Anti inflammatory is I believe to be the best. I was diagnosed with MF about 4 years ago and have held my own with my bloods staying pretty much the same if not improving since I went keto 18 months ago.

Hemo said lots of exercise and avoid sugar as it has no benefit and is just bad. Didn't say go keto but didn't say to go off it when I discussed with him. Was quite happy for me to continue on keto.

Regards to you all

Guy

[azaelea in reply to Hidden]

Thanks Guy, I've had a look at Keto diet on line and pleased it incorporated most foods that I do eat. Will now try to cut down on the Carbs . All the best,Fran

[stillkicking]

A good well balanced diet, and preferably one that you enjoy! Nice fruit, nuts and vegetables arranged attractively on the plate, and fish and lean meat (if you eat meat). I like a plate of food to be colourful and to make me feel like eating is a celebration. It really does lift the spirits. I still remember the Grace that we used to have to say half a century ago over our school dinners, "For food and clothes and shelter we give Thee thanks O Lord...", and it was a bit amusing at the time (especially on the odd occasion that the food was awful), but now I really do think it is good to feel thankful for what we have.... and it really helps if it is yummy!

[azaelea in reply to stillkicking]

Thanks for your reply. I so agree with you a colourful well set out plate is attractive and gives you an appetite. Fruit, Veg etc are very important to me. Can't eat nuts because of diverticular disease, but do eat plenty fruit. Best wishes, Fran

[Cali-Med in reply to azaelea]

I think the no nuts for diverticular disease is old info. I was told it’s now ok to eat them. Just had indoscopy/colonoscopy and was diagnosed with it. Good luck. I love nuts so it was a relief!

[azaelea in reply to Cali-Med]

Thanks, I'll look into that. I used to love nuts but as I was diagnosed about 20 years ago, and told nuts stuck in the diverticula pockets causing irritation and infection, I dare not try them. I'd love to eat them again! Hopefully I can indulge again as they are very good for nutrition. Thanks.

[Hydrox]

I just eat a good balanced diet and walk at least 3 times a week, 20 mile or so, diagnosed 7 years and doing ok.

[azaelea in reply to Hydrox]

Thanks for your reply. I do try to have a walk at least 3 times a week, but I'm afraid my advancing years won't allow me 20 miles !! Well done to you! Kind regards.

[Hydrox in reply to azaelea]

I am 71 gone January, doing my best to stay fit and healthy.

[azaelea in reply to Hydrox]

Wow, you're doing really well! I'm a bit more advanced age wise, 83 gone January and I must admit I have definitely slowed down over the past couple of years. Probably the ET diagnosed a year ago has something to do with it, ha ha. We battle on though and keep smiling that's the main thing.

[pvgirl]

Hi Azaelea, Im a pv patient and I just visited Mayo Clinic yesterday and the diet suggested to me was the Mediterranean diet which consists of plant based diet such as fruit and vegetables, whole grain, legumes ,nuts, healthy fats such as olive oil, spices instead of salt, and choose fish or chicken instead of red meat for the majority of time. Lots of water , exercise and good sleep is important as well.

[azaelea in reply to pvgirl]

Thank you for your reply. I'm pleased to see the recommended diet is virtually what I'm following, I.e. Plenty of fruit vegetables ,olive oil, fish,chicken .so I'll carry on with this.

[JackLina]

Low carbohydrate and anti-inflammatory foods. You can find examples n line. this certainly helps me with my mood and aches relating to the drug. Could work for you.

[azaelea in reply to JackLina]

Thanks, I'll have a look on line.

[Stephen399b]

...certainly I have found that I have virtually given up alcohol, but as my Gran always said: "a bit of what you fancy does you good!"

So an occassional bacon sandwich and a more regular strip of chocolate still feature in my diet.

Otherwise, is it all worth it?

Stephen

[azaelea in reply to Stephen399b]

Thanks for your reply Stephen. Occasional chocolate for me now and only couple of glasses of wine a week now for me. We can't be too miserable!

[hunter5582]

Since JAK2 signaling can increase your body's production of inflammatory cytokines, an anti-inflammatory diet can be helpful. Just eating a good sensible healthy diet to support overall health makes sense for everyone. What I found to be the most helpful was actually a Turmeric/Curcumin supplement. I have a variety of secondary inflammatory symptoms (osteoarthritis, GERD, insomnia, etc) and started on the supplement upon a recommendation form a rheumatologist. Since I started the Turmeric/Curcumin - I have not needed any NSAIDs at all. Completely d/c Meloxicam, Ibuprofen, etc. In fact - the supplement works better than the NSAIDs at controlling the inflammation from the osteoarthritis. Can't say it will work equally well for everyone, but it sure helped me. you do have to be careful with supplements as they are not well regulated and there is a lot of inconsistency. Also need to be aware that Turmeric/Curcumin does not pass into the blood easily, so you have to pay attention to the bioavailability of the formulation you choose. I take the max recommended doe of 1500mg/day - split into two doses. Hope you find something that works for you.

[Yellowish]

Et jak2+ balanced diet was recommended and less iron for me. Plenty of veg but I take little green veg. Not sure if that helps immune system, everybody is different, you really need your doctors advice. Hope that helps John