Hi there can anyone advise me please. I have ET with MPL and someone I know is trying to convince me to go on the keto diet ( high fat, low carb) because of the health benefits. As a blood cancer patient would it be okay for me to do so?
thanks in advance
I personally would not touch keto diet with a bargepole, due to the many health issues that it can create. I know some people use keto diet to lose some weight, but I would rather have a good dietician create a variate sustainable diet for me than use keto.
People around me often come with lifestyle and diet advice without having a basic idea what ET is. They just do not accept that I am sick and are so uncomfortable that I am sick that instead of accepting there is no cure for ET, they choose to blame me for my illness and blame my lack of cure due to me refusing to follow some diet or lifestyle advice they gave me.
Personally, I am avoiding any radical diets. Mediterranean-style diet is OK, is variate, and if one adapts it to local produce, it can also be less expensive.
Below is some medical opinion on keto diet:
"Is the keto diet safe?
The keto diet could cause low blood pressure, kidney stones, constipation, nutrient deficiencies and an increased risk of heart disease. Strict diets like keto could also cause social isolation or disordered eating. Keto is not safe for those with any conditions involving their pancreas, liver, thyroid or gallbladder.
Someone new to the keto diet can also experience what’s called the “keto flu” with symptoms like upset stomach, dizziness, decreased energy, and mood swings caused by your body adapting to ketosis."
uchicagomedicine.org/forefr...
TTA, thank you so much for your candid and lengthy reply. The person trying to convince me isnt a personal friend of mine so doesn’t know I have ET. Further to your advice, I won’t be giving it a go, that’s for sure. Hope all is well with you☘️
How are you feeling? How was the recovery from Covid-19?I hope you are feeling better.
Many hugs of support 💜
Am recovering thankfully as blood tests show that my WBC and neutrofils are increasing well. Am back now on hydroxy….. scary thing is, I never had any covid symptoms at all. It was a sudden drop in my temperature and thanks to Dr Google who advised that it could be the onset of sepsis that took me to the hospital. It’s as well I went🥴 again many thanks for your advice about Paxlovid which I was given a course of…. And am here to tell the tale.🙏
Hopefully you will make a good recovery and your white blood count gets back to normal levels.
As my immune system is not stellar, I am used to not having symptoms like fever when having a serious infection (although I have chronic fever, this fever lets go exactly when I have an infection, weirdly). That is so insidious and very problematic.
Dr. Google is often a life saver. Dr. Google is also more informed about very specific issues, like symptoms of heart attack in women or sepsis that regular health care might easily dismiss.
Happy you are recovering 🫂
Whoever you are TTA, again I have to say thank you to you. As only having been diagnosed, well a year and a half ago now everything is a learning curve for me. That’s interesting. I never knew that with a compromised immune system that one may not experience symptoms of infection. I feel less alone on this journey by your thoughtfulness 🙏☘️☘️☘️
While there is some evidence to support a keto diet for some conditions (e.g., some forms of epilepsy), there is not evidence to support it for MPNs. There is some limited evidence to support a Mediterranean diet, which has anti-inflammatory benefits.
My own practice is to follow a mostly Mediterranean style diet, with plenty of plant-based nutrition, antioxidants, flavonoids, polyphenols. I limit processed foods, processed sugars, and avoid contaminants in the food stream, carcinogens, pesticides. synthetic hormones, xenoestrogens, antibiotics, etc. We need to support our bodies through nutrition, not damage it with contaminants in the food stream.
Wishing you success on your journey.
Thank you kindly Hunter for your detailed and knowlegable reply. What you say makes perfect sense to me, thanks again for taking time to reply, much appreciated🙏😁
I'm currently working with my local NHS wellbeing team,.I've cut out all processed food ,having protein at every meal ,loads of veggies and salad, and only waxy potato and granary bread( max 2 slices) .lots of fresh berries and Greek yoghurt.
I've lost 2 and a half stone so far.
I mainly follow Mediterranean recipes
Oh thank you for replying and the info, much appreciated….. will take your advice on board…. Must check out Mediterranean diet 🙏☘️
Yes I'm lucky that my cholesterol is ok and I'm not diabetic so could just stop the processed stuff and not worry about the fats too much.Bloods have shown no change but I feel better!
Thank you again, keep on trucking, we are all on the same journey and will get the most out of life that we can 🙏
Hi fairydust,
I am an ET patient and have tried Keto diet few times. It did not caused me any problems, but the thing is I practiced it for short duration. One month max, to lose some stubborn fat. But I guess it depends on person to person. I personally feel more energized, less bloated and less lethargic while on keto.
Good luck
Thank you fir replying, will take your advice on board🙏
Hi there, I am on low carb high fat diet. Keto may be good for some but I personally prefer high intake of veggies and some fruits which keto prevents due to low carb restrictions.I also hear a lot of keto carnivore diet, not long ago that vegan is best.
I've tried all of them for prolong time and decided to stick what makes me feel good.
Wishing you well.
Thank you for your reply and will take your advice on board 🙏
Hello Fairydust , I can't offer any advice on Keto, but just to say how great it is to see someone else with ET MPL ! I sometimes feel like the only person with this mutation amongst a sea of JAK2 and Cal-R . Thank you for making me feel less alone ! 😊
yes, I feel too that the MPL variant is under represented on this forum. It can feel quite lonely. However, it’s good to know that the majority of information on this site also relates to me.
Lovely to me a fellow partner in crime😂 I was diagnosed a year and a half ago…. You are never alone, here for you anytime . I dont know much about this site but there is a chat option, maybe we can chat there if needed
Hi, I thought the same re ET, MPL, although I have now had a SCT, I also had ET, MPL & AXSL1. I did think we were in the minority.
Hi again. I sent you a message in ‘chat’ did you get it?
I have been low carb high fat ( natural fats not manmade) for probably couple of years, no issues at all. Did it make any difference to my ET- no.
What I’m experimenting with now are the supplements that help block cancer pathways relating to ET, which I believe are making a small difference but nothing too remarkable yet, although I need to do another blood test.
Will keep exploring and experimenting 😁
Hello! What suplements do you mean? How they help in our diseses?
Apologies for very late reply, been super busy.
I highly recommend these books “ Cancer Care” by Dr Paul Marik , and “ how to starve cancer” by Jane Mclelland.
They both look into the cancer pathways and how supplements and some everyday medicines can block these pathways.
For cancer to grow, it needs food. These sources are : glucose, glutamine and fatty acids.
In the book, you’ll find lists of the abnormal cell signaling pathways and what can help block these.
To check what was relevant to me, I just looked up on pubmed: ET & the name of the “abnormal cell signaling pathway “ to see if there was a known connection. If yes, then I took the relevant supplement which blocks it. Just to give a few examples:
Went/beta-catenin & ET came up +. For this , several treatments options came up like Vit D, aspirin, Niclosamide plus a couple of others.
Another pathway called Hedgehog was also + with ET. Treatment options include Berberine/ metformin/ mebendazole.
There are lots more, so you’ll need to get the books and do a little research yourself, as we are all unique.
Often, one supplement blocks several pathways, which is very handy and cheaper.
I just use supplements rather than repurposed drugs, for ease of getting them.
For me, I have quite high platelets and typically get tingling feet every third day, for which I took ½ an aspirin on the day my toes tingled. With the supplements, I frequently don’t get any tingling for 5-6 days. I only take aspirin when my toes tingle. Also I had 2 small areas that might itch sometimes , one on my upper arm and one on right shin. With the supplements, the arm itch has gone and the leg itch is also reduced.
Much better to do your own research. It’s fascinating.
Thank you fir responding and what you have written, I will take on board, 🙏 and goid luck
🙏🙏🙏
This is no for us because we can lose some micronutrients we need BUT the best way is a personalizaded diet or a nutritional test to know your proper food. General speaking, an antiinflamatory diet to stop to work the immune system that is what we need because these genes we have altered are pro inflammation and this provoques progression, you know. Mammal read meat is proinflamatory. Good question.
Thank you so much. Will take your advice on board. X
A modified keto diet resembles a good diet simply removing all the s****, basically processed foods which tend to be carbs and sugars. You can call it what you like but it is the way humans are supposed to eat. It's the way I eat. Typically egg for breakfast with coffee and full milk, graze on nuts with perhaps some dark chocolate, then salad with veggies with cheese or meat/ for supper. Also loads of good quality coffee , probably about 5 cups a day.
No bread, pasta, rice, potatoes or cakes and biscuits. All of those things make me feel too full, headachy and tired.
Thank you kindly for your advice, much appreciated, have decided against 🙏
many of the comments on this subject re Keto are completely wrong or misinformed. Keto based diet is changing the main way energy is used in the body from glucose/insulin spiking based diets to using ketones. Anything that spikes insulin ie carbohydrates and fructose that is high sugary fruit increase inflammation via cytokines in the body The obesity in all western countries is now at over 75% of the population due to the high fructose and carb based diets as well as modern seed oils. Meat is a highly concentrated energy source for the human body and has been the basis of human diets for at least 100,000 years. Never before in our human history has the high level of carbs and sweet fruits been consumed in such large amount with the resultant huge increase in pre diabetes and diabetes which is a highly flammable condition with multiple co morbidities developing as a result It is highly reversible and controlled by changing the diet. The reason us MPN people may benefit from this diet is the reduction in inflammation generally and the resultant reduction in co morbities resulting in better overall health and reduction in joint pain and increase in energy. It possibly will not treat directly our disease but improve our overall energy etc. I have been recommending this way of eating in my professional life for over 25 years and have been using it for the past 30 years and there is huge amounts of information and studies on it. The Dietitian associations around the world nearly all have funding from grains marketing foundations etc. Please read further on this by the many scientists and dieticians and drs who follow this path and recommend it including the NHS for pre diabetes. This is one way of eating that does not need extra supplements though our own individual bone marrow condition may benefit. There are existing doctors using this excellent approach and I would suggest you seek them out.
Thank you so much for taking the time to respond to me in such an informative way, will take it on board and investigate further 🙏
do you have any evidence that the Keto diet may benefit our own bone marrow condition, I have been to many conferences in the US for the last 10 years where they have most of the top MPN expert docs in the world making presentations, sometimes they have talks about the best nutrients and diet etc for us with MPN. They tend to recommend the Mediterranean balanced diet, I have never heard the keto diet recommended.
I never heard of the keto diet until someone I know started putting the idea in my mind… no have no evidence that it is benefial… but thanks to the comments her, am not about to try it 🙏
No evidence that any diet improves bone marrow condition I’m afraid. Wish there was. What it will improve is overalll inflammation in the body for improvement in general health. It can turn off Diabetes, metabolic syndrome and blood pressure There is nothing mysterious or strange about it. For all of us who have been eating this way can attest to the dramatic effect on energy, weight loss especially central girth, improved sleep and noticeable reduction in joint pain. Mediterranean diet is a fallacy. There is something like 12 countries bordering the Mediterranean with largely different diets. The diet was made up and still utilises too many carbohydrates so you remain hungry as carbohydrates are adddictive. Keto means you don’t get as hungry as your body has enough nutrients and fats. Basically I would encourage everyone to really investigate this approach and it is being utilised more and more for the terrible health consequences of modern living. All of us alive in the 70s would remember how lean everyone was then. What happened?? Demonising healthy fats is one of the reasons.
This is the last I will post on this subject
I don’t do Keto but I eat a lot of protein, plenty vegetables , fats and just enough complex carbs, I never feel hungry, I am slim and have a narrow waist and exercise a fair amount of exercise hence the Keto diet is not the only way to get those results.
If it works for you or others that’s great, the main point I was questioning was when you stated in may help the marrow. As there is no evidence of that being the case it is a bit misleading which is not very helpful to others reading the post.
Absolutely. A true ketogenic diet has to be done under medical supervision for example for epilepsy and weight loss (whuch has to be modified after initial weight liss as in the Atkins diet).It's also good for migraine and cluster headaches which is how I was first introduced to it. I started following it to the letter but lost weight so rapidly that I had to reasses. My GP at the time didn't know much about it but directed me to the Atkins website where there was lots of info about how to introduce some carbs to make it a modified keto diet; a bit more realistic and manageable! I couldn't go on eating just bacon and eggs 🤣 .
It worked amazingly for about 10 years and then it didn't. No idea why. Now I'm on Ajovy injections which has largely worked well.
As for diet I still eat a modified keto and it just suits me and it does keep me at a normal weight.
I’m not convinced it will help you, personally I follow a well balanced diet but avoid sugars and refined carbs and try to avoid processed foods. I read that Dr Mercola is now anti Keto. If you do do Keto keep an eye on blood markers such as cholesterol etc
Thank you kindly. I will do, aporeciated 🙏
Hello
I have PV and 73 years old a runner and very active . I started Intermittent fasting which follows a lot of keto principals and have been on it for 2 1/2 months. I have never felt better and the crazy thing is my levels have stayed low no phlebotomy !. I can’t tell you if that’s related but I know I have felt much better!!
Best of luck !!!!!
Thank you kindly, much aporeciated 🙏
I'm 65 & I tried keto about 4-5 yrs ago for around 5 months and I did lose a lot of weight & felt great. Only problem for me was that it raised my bad cholesterol through the roof & my cardiologist told me to stop. He also raised my statin prescription to higher strength to bring my numbers back down. Since I recently had a few blockages & received stents, I had no choice but to listen to my cardiologist. If my cholesterol wasn't already genetically high & I was younger, I would have stuck with keto.
Thank you kindly for your informative response., will take it on board 🙏
yes cholesterol rises, and there are some important parameters on that subject. I think it would be beneficial to go and listen on yt to all the drs and specialists who have been using this dietary approach to get the reality of what happens and not just have a number that sparks the application of a drug ( which has side effects) or somebody fear mongering around this very divisive subject. There are many drs and specialists who put themselves out there around this whole topic. There is so much information that it can’t be denied.
Dr Mahotra Cardioligist is a good start.
Thank you kindly, much appreciated
I would recommend the books by Dr Malcolm Kendrick regarding cholesterol and statins. Very informative .
Will do. Thank you kindly.
Just stick with MPN advice re our foods. They always suggest healthy Mediterranean diet food & produced a recipe book 👌. Julia .
Hi Fairydust 1111
I have been on a keto /lowcarb lifestyle eating regime since March this year after my GP surgery referred me to an online programme called The Lifestyle club which is designed for people to reduce/reverse prediabetes and diabetes. My GP of course was fully aware that I have ET and treated AF (Atrial Fibrillation). I was prediabetic but are no longer. Only GP surgeries signed up to this will be able to refer people into this programme which has various on going support opportunities after completion of the course. I have lost just over one stone and follow this eating regime most of the time. I sleep better and have more energy. Losing weight has improved my heart health and general health as well. I no longer eat processed food nor sugar. I fully support AnBee excellent comments and clarifications re. Keto/Low carb eating. I was diagnosed with ET just under 3 years ago and despite of my age being in the high risk group my blood tests including platelets are very stable around 600. Hence I am still just being monitored by my Haematology consultant every 3 months and only take blood thinners for my AF. My consultant is aware of my eating regime and is supportive as my overall health has improved. However there is no evidence that eating keto or low carb impacts on MPNs nor on my platelets. I am somewhat perhaps "lucky" that my platelets are stable for now. To sum up I think low carb eating and following Mediterranean style eating are somewhat similar anyway as they both improve general health.
Thank you kindly Pustina for replying at length and in great detail. I have read and taken on board what you have written. Thank you, much appreciated 🙏
hi i have mpl mutation and went on keto diet for 5 months. No problem at all. I’m on hydroxycarbamide 16 capsules a week.
Thank you so much for repling… do you find it benefisial or do you have to condult with your specialst first?
I did not wite that last comment.. do not know what that is about,sorry
I have mpl mutation too! , had covid a month ago with no symptoms except low temperature… kept in hospital in isolation for a week on antibiotic drip and a course of anti viral tablets as white blood cells and neutrofils were rapidly decreasing…. All good now though.
Ketogenic Diet
Diet changes 
Diet Advice for ET please
Diet confusion
