Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s.
We are overseas and I am only on aspirin. when we return the haematologist will begin me on Pegasus. I asked a friend who is a doc here if he would give me a pathology script to see how my bloods were going. The numbers had returned to the # when I was first diagnosed. He suggested I send the information to my doc and haematologist back home. I did and didn’t get a reply from either of them, so I’m guessing it’s not a problem.
My doctor friend said that he advises all his cancer patients to completely remove sugar from their diets as it causes cancer cells to multiply. I was wondering if it did this with MPN’s as it’s a diff type of cancer/disorder 🤔
Also the doc said that on looking into it as it’s not his area of expertise…. that red wine is good for lowering platelets 🤩🤗 I’m not a drinker really and have a glass socially now and then. Has anyone heard that this may be so with red wine?
Thank you 😃
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sugar and alcohol are very toxic to the body increasing inflammation significantly The very occasional glass of wine should not be a problem. Sugar should be completely removed from the diet. I now follow a Carnivore diet and have previously been a ketogenic diet. Significant improvement in all areas of joint pain, digestion and sleep. There is so much information on YouTube by prominent doctors who have used this approach for decades. All cancer sufferers regardless which deserve optimum nutrition and to stay away from substances known to be toxic.
I don't know about causing our cells to multiply (going to have to look this up), but I know both sugar and alcohol are inflammatory. MPNs cause inflammation in the body and eating an anti-inflammatory diet seems to help some of us.
I do my best to eat anti-inflammatory foods but there's certain things I enjoy too much to fully cut out. Like vanilla lattes which definitely have sugar 😂 but I do try to be mindful to not over-consume and since I've started being more mindful, I can feel the difference when I eat too many inflammatory foods.
The diet with the best support for MPNs is the Mediterranean diet. I mostly follow those guidelines. Ultimately, it is about eating and healthy diet and living a healthy lifestyle.
Refined sugars are not good for anyone. Limiting them is a good idea for everyone. I believe it is also prudent for anyone with a MPN to limit exposure to toxins/carcinogens in the food stream, pesticides, herbicides, hormone, BPA, antibiotics, xenoestrogens, food colorings, artificial additives, etc.
Alcohol consumption is moderation is OK per my docs, but emphasis is on moderation. Pegasys and other MPN medications can be hard on the liver. Be kind to your liver. You really do need it.
I believe the bottom line is to eat healthy, avoid junk, and enjoy treats in moderation.
I’ve really become quite confused with so many offering advice as to wondering if there is any best way. I was recommended to do Chris Wark’s Square One program in the past tho we are out and away too often to do the daily juicing and two raw salads that it suggests. I understand the benefits tho it became stressful trying as it just didn’t fit into our lifestyle.
It’s not easy being wheat free when travelling either. (I carry two epipens for wheat allergy and also have hashimotos). It’s ok at home as many options there but the past few months travelling, the options are usually one or two items on the menu and I have begun asking for sides, veges and salad. 85% of the time I drink sparkling water tho I will have freshly juiced vege and fruit juice if available, tea and coffee.
I have always had a sweet tooth so I haven’t managed to completely cut out sugar yet. I find it very easy to be alcohol free tho I do often feel surprise and disappointment from others when I don’t join them in a drink.
I’ll look into the other things you mention over time. I’m considering obtaining the help of a professional when we return home to guide me to relieve the pressure.
The more radical diets are very difficult to follow when you travel. It is important to consider your lifestyle when making choices about diet. It is relatively easy to focus on avoiding junk and contaminants while getting more nutrition from plant-based sources.
Good friends will understand if you abstain from alcohol. It is the company that matters not the beverage.
The sweet tooth conundrum is one many face. I think the key is moderation. I have found that using Stevia can be helpful in beverages and some treats. Stevia is a natural no calorie sweetener. Stevia does not trigger an insulin reaction that makes you crave sweets the way that some artificial sweeteners can. Still best enjoyed in moderation though.
It is definitely worth consulting with a medical professional about diet and the use of supplements. Integrative Medicine or Functional Medicine doctors have this specific expertise. I consult with one and it has been very helpful.
Hi, I try to follow low carb and sugar and healthy fats only. I suffer from chronic inflammatory nerve pain (waist down) and if I occasionally have extra sugar/carbs it does aggravate the condition. Hope you find some helpful solutions. ☺️
I have cut down on sugar because of its inflammatory properties and do notice the difference. I don't drink much but when I do, it's red wine as I understand it contains polyphenols which are actually anti inflammatory. I too have read that red wine can reduce platelets -but I doubt my odd glass would make much difference! A Mediterranean diet is what I aim for.
I asked my haematologist and she was very vague and said just the general, eat well and get some exercise as is always recommended for everyone. She didn’t think anything made a huge difference by making changes.
I am on Pegasus. Very good treatment for my ET. I stick to Meditteranean diet. No added sugars. But occasional granola bar or treat. Also occasional glass of red wine or Guinness has had no effect . I am under MPN & local hospital & red meat is one to avoid frequently . Julia 👍UK
I’m picking up from all the responses that nothing really reduces platelets except medications and the dietary changes are mainly to reduce inflammation and build a healthier body by reducing the toxic load and keeping to fresh foods. I’m just learning about reducing or stopping red meat. Having been low carb for some time I wasn’t aware that red meat was a problem. Also I’ve read that in the Mediterranean areas of the blue zones they only eat meat a couple of times a month, which has been a surprise 😯🌼
Yes I was told no red meat . This Site does have a dietary information. On it . Yes no additives as increases inflammation. No processed foods . I stick with fresh food veg salads nuts fish chicken no dairy low carbs & that has helped with energy & little inflammation. Your body soon tells you if diet has been poor as bones ache & little energy. Drink plenty water on Peg.
I sail & sometimes in areas of poor food supplies so I can say first hand that correct food intake makes a big difference to energy. Peg is good if done low & slow which sometimes Drs try to rush on higher dosages. I stuck with 45 monthly & have been fine on that & 12 weekly blood checks currently . Before diagnosis could eat everything but it’s been fine to adjust. Hope this helps . Julia 👌
Hei! Kiitos kun otit esille,että sokeri lisää tulehdusta! Yritän vähentää sokeria itsekkin muista syistä.Hunter kirjoitti,että on hyvä yrittää vähentää myös myrkkykuormaa.
Ostin vedenpuhdistimen,koska elimistössäni on esim.kuparia liikaa.Näin juomavesi puhdistuu.
I put your reply into Google translate and I hope this is correct in translation -
‘Hey! Thank you for pointing out that sugar increases inflammation! give sugar yourself for other reasons.Hunter pays, it's good to try to reduce the toxin load as well.
I bought a water purifier, because there is e.g. too much copper in my body. This is how drinking water is purified.
Next, I also got a cleaner for the shower.’
Thank you for sharing, we too use a purifier, an osmosis system for our water in the kitchen 👌🏻
Hi, I did the sugar free for one year, I was very disciplined with this. I believe that sugar is very inflammatory to our bodies and we already have this issue with MPNs. It made no difference at all to my blood counts and in fact my platelet levels increased during this period of time. Sugar free also made no difference to my aches and pains which is what I was hoping it would help. So I am now not sugar free and enjoying every minute of eat although I never really consumed a lot of it. I have a healthy diet, mainly Mediterranean, wholemeal and whole grain everything and only have the occasional glass of wine, I also avoid processed food like the plague. I exercise daily and have done most of my life, my blood pressure, cholesterol, and weight are fine so I reckon I am 'doing my bit' to help keep me safe. Doctors have varied opinions on this subject, they want hard evidence before they recommend to patients and I guess we all react differently. All that said it wouldn't harm to give it a try, but I feel sometimes we can over think it all and end up obsessed and anxious because of it. Good luck.
I like this approach Janis & it's my basic philosophy as well. Live a healthy lifestyle but don't torture yourself. The main think for me since my diagnosis is removal of most processed foods and reduced read meat intake
Hi, I have never eaten a lot of red meat, the dangers of it are really not new information. My dad was a chef and used to tell us as children (I am now in my mid sixties) that red meat and processed food (sausage , ham, bacon etc) stayed in the bowel for too long...not a good thing. There are many trends in the 'diet world' now that we knew about years ago but of course it has become more scientific. My favourite blast from the past is 'the square meal'....protein, carbohydrate, fat and roughage, generations were brought up on it, cooked from scratch and they lived into their 80, 90s and if you were my mother in law 107!! Everything in moderation.
yes some very long livers on both my parent’s sides and very poor beginnings which I think made their bodies strong. 102 was my great great uncle. My Dad 92, his siblings, 96, 95, 93. The human body is amazing ! My Dad always said chew each mouthful 30 times 😄 I remember us kids at the dinner table counting each mouthful … 😁 Dad always chewed his food well.
Apparently chewing our food enough is vital 'our stomach does not have teeth' , it is something I have never mastered, I bolt my food down like there is no tomorrow!!
I think it’s mostly about balance and moderation. I think it’s very tempting to think we ‘have the answer’ because something has worked for us individually. I have to say I agree with Maz that you should primarily be steered by you Heamatologist. And others who have said they o do what works for you rather than strictly following what others say. For example, I know that it’s more important for me to actually eat something rather than worrying about sugar etc. That’s because the impact of my MPN has impacted my ability to eat normally because of thrombosis I’ve suffered. So while I’d love to be able to experiment with different diets or elements of them eg Mediterranean diet or no sugar, I have to just eat what I can and recognise that is the more important thing.
I sometimes can find some of the tone of these diet/food posts very difficult. To be told you ‘must’ do something or you ‘should’ do something when you can’t - as much as I’d love to be able to eat normally - can be quite jarring. I think it’s just another way in which we’re all so different and while there are commonalities in some of the issues we face, the solution or way we deal with them for each of us is different. And it’s important we remember that. Having said that, I’d never cut out anything completely if I could eat normally, I’d try to moderate and offset some of the treats with healthy choices some of the time. I’m not an extreme diet person! And I think there’s still discussion among doctors/researchers about how far sugar goes in terms of being carcinogenic or not - refined sugar clearly isn’t great and as Hunter says should probably be limited for everyone but I’m not sure we can be 100% sure it’s as bad as some parts of the internet suggest.
Ps, just enjoying a glass of wine as I write this!
Hi to you all , ages since I participated in a chat . I have had ET now for 40 years aprroacing 80 outlived all my healthy friends and drink loads of red wine and some whiskey . Very litlle sugar intake though. all the best Town crier
I havr gotten rid of both of them and all grins (except rice and all mik products. I am now a far healthier person!!! I only have a couple of glasses of good, organic red wine per month.
Step by step I’ll make changes. I’ve begun limiting meat and weaning off dairy products. Trying to limit my sugar consumption as well. Increase my water … I need to leave myself notes as I just forget 🫣🙃
right after my ET diagnosis I immediately went on the auto immune Paleo diet cold turkey.d that was 6.5 years ago. d no grains except a little bit of rice no sugar no nightshades.d lots of vegetables very good quality meats lots of good organic olive oil and organic grass fed butter. my body went into ketosis and within six months my fatty liver was clean no more depressions no more eczema no more bloating no more 25 kg that slowly came off. after six years, my glaucoma in both eyes is gone and my cataracts in the right eye is gone. no more plaque on my teeth and I d brush only with water and soda I use twice a week my teeth are beautiful. Brain fog is also gone horrible chronic nasal infections, pneumonias and bronchitis or a thing of the past. I've only had two colds in 6 1/2 years where I was chronically sick and was on antibiotics 2 to 3 times a year. at the one-year point I started going organic as much as possible and d completely removed all chemicals from inside my house no more detergents or soaps or shampoos or perfumes or any other form of chemical. only organic products I cream myself with coconut oil I wash our clothes with wild chestnuts that I've gathered it off the ground dried etc. I do not buy any foods that are produced by anybody. I cook everything on my own for the whole family and in the meantime everybody eats what I eat and all our allergies and much more are gone for example psoriasis and dermatitis. it's a difficult path but I did it and I keep it and so did most of my friends now. even our doctor friends who didn't believe in anything alternative. they used to sneer at the things I was saying but now they follow me! : )
whatever you decide you will see that as soon as your body starts getting what it needs it will be speaking to you and you will be able to love your body more and you'll give it what it needs and rechecked what's bad for it without thinking twice.
How amazing and what a wonderful testimony to all your efforts, Anag 😲😃
I’ve not heard of some of those methods so I’ll look them up.
It does take a lot of time I’m sure. We are in and out a lot so Hunters advice to me to think about my goals for when we are away from home, I need to put some time into.
Thank you for sharing, you really are amazing esp with a family at home to care for as well 👏🏻👏🏻👏🏻
Hello, I think the answer is the same for those not with an MPN i.e. 'everything is ok in moderation' i.e eat as healthily as you can but now again treat yourself. There's also mental health to consider- you have to live a little as well.
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