Polycythemia Vera and Nutritional Ketosis

Welcome, @chitra. How long have you been living with polycythemia vera? Did you find switching to low carbs relatively easy?

Thanks, Colleen! I was diagnosed with PV in August 2019. Being an Asian, I grew up eating a lot of rice and Parata. I mean, my meals were full of carbs. Everything changed when I embarked on a full-time study in 2021 and was too busy to cook fresh foods such as vegetables. I was hardly able to cook rice or curry during this time. Therefore, I relied on ready-to-eat food from grocery stores. However, I had concerns that I was not eating enough vegetables, so I chose ready-to-eat Quiche (made of Spinach, Feta and Pea), Croquettes (made of Butternut Squash and Spinach), grilled chicken and fish, egg, Banana, Lentils+Green bean, cucumber, Spinach bites. These are easy to find at the grocery stores. When my study load reduced, I started cooking and eating a lot of rice, bread, and curry, including red meat(Though it takes longer to cook). My venesection requirement increased. I am still unaware of what happened to that year when I did not require any venesection. Recently, I came across this group and read about the impact of the Keto diet on PV; then, I figured out that I consumed fewer carbs when I did not require a venesection for a year. To be honest, I did not do anything with a Keto plan that time; I just tried picking something healthy, like fish and veg, which I enjoyed eating. Recently, I started consuming fewer carbs, as I did in 2021. I will see what happens now.

Recently, I made a series of changes to my lifestyle to avoid monthly venesection. It seems that the hard work paid off! First, I skipped meat, rice, flour totally. However, my diet was not entirely a keto diet, because I ate Banana, dates, mangoes a lot. For breakfast, I ate two boiled egg (without yolk), a muffin (made of almond flour, egg, banana, very little maple syrup) and a banana. For lunch, I ate fish with a veggie fry such as Okra, capsicum, green bean, Aubergine etc. My breakfast was at 7.30 am and I finished my lunch by 3pm. Between breakfast and lunch, I ate lots of fruits (fruit salad) such as Mango, Avocado, Kiwi, Pear, Apple, pickled Artichoke, green Olive etc. I did not eat anything after 3pm, meaning I have been on an intermittent fasting for some time now. At the beginning, it was very tough to be on an intermittent fasting, now my body seems to be adjusted with this plan and I do not feel hungry anymore after 3pm. In addition, I have a cast iron pan which I stopped using and, I tried to eat organic as much as I could.

The idea behind my diet was to become anaemic as my body itself produces a lot of Iron already. Now, I often asked myself as to why rice or bread deteriorate my blood condition? Then I read the label of snacks bought from store carefully and I found that most of them are made of fortified flour. You may know that the fortified flours are processed and additional nutrition such as iron are added to it. Rice, I bought, mostly enriched and enriched rice (again additional nutrition such as iron are added to it). Even when I tried to buy organic flour it is also fortified ! Therefore, I completely stopped eating any food made of rice and flour. Egg yolk also contains a lot of nutrition such as iron which I do not need. As I totally avoided rice and flour, I often felt dizzy and headache and to avoid that I regularly ate Banana, Mango and occationally dates. It means I have taken carbs from whole fruits to fulfil the required intake of carbs in my body. I also, rarely eat Potato, as the potato has no chance to be fortified. In case of choosing fruits and vegetables, I checked their nutrition value as I do not need any iron. For example, I was enjoying plant-based sausage made of Soybean. When checked its nutrition value, I regretted eating sausages made of soybean and stopped eating that.

My monthly venesection has been cancelled twice and there is no planned venesection for me now. I got an appointment at the beginning of May and I will have a blood test before that. My consultant said that whatever I was doing I could continue that. I hope it helps you understand my diet. Please consult it with your doctor before following my diet, thanks.

I agree with you. We must self-manage. It has been interesting to find natural ways to live with the PV. I, too, extremely changed my diet and it is simple to manage. (I am a widow so I can eat what I come up with!) A wonderful surprise over the past four months that each blood work shows lower numbers…..no treatment was necessary. Platelets have been the problem for me. There is lots of info to read about fresh goods that lower platelets. However, the past four months numbers stayed level and in two weeks I am looking forward to another drop in those numbers. Researching food and exercise is also interesting. I do not take any medication. Also, Prayer is powerful and gives me strength and a positive attitude to move forward and enjoy my daily activities and encounters.
Thank you for sharing your dietary information, as I thought I was the only one who cared about that. God bless you all! M

Thanks! Would you mind sharing your journey to reducing platelets a bit? What fresh goods did you find helpful to lower platelets?

What we put in our bodies, food or onnour skins, is medicine. Food is medicine, when my health coach first said that I was VERY skeptical. Not any more, I had extensive bloodwork done, cost about $400 out of pocket, insurance won't cover it (the insurance companies want us to be sick and love denying claims). It showed me exactly what foods my body does not tolerate and would cause me issues. Primarily inflammation which is at the core of so many diseases, not just autoimmune. Gluten (white flower flour etc) and dairy are the 2 most notorious for causing inflammation in our bodies. I've cut them out almost completely for years now and even though I have very achy joints, something else is going on that the docs haven't figured out.

I was misdiagnosed with PV in April 2023, was Jak2 negative and they still felt 2 other markers meant I had PV. My gut was telling me I didn't have it, that something else is wrong. I was right, the 3rd oncologist had me do a bone marrow biopsy immediately and sure enough NO blood cancer markers at all. Yet the 2nd oncologist took me down to a hemoglobin of 10, which was so wrong and i felt like crap still. It's back up to 14.4, still normal but has been ticking up.
It's been wack a mole game trying to figure this out. I hope soon.

Diet is everything, the bloodwork I mentioned is liquid gold I'd you ask me. I have a road map of what I should eat, like corn meal which is in A LOT of foods.

Processed foods are evil, lol. Seriously, they're very bad for your body.

Good rule is, if it has any more than 4-5 ingredients, think twice about eating it.

Eating clean is what we all need for optimal health. It is time consuming but do prep for the weeks meals one day on the weekend. Your body will Thank you!

Be well, be safe!

I was diagnosed with polycythemia vera 10 years ago, at the beginning I was getting a phlebotomy every 2 weeks then once a month every 3 months, 6 months once, a year then back down there every 2 weeks and it repeats every couple years. When I first got diagnosed I weighed about 170, my weight has dropped down to 155, right now I'm the heaviest that I've ever been at 185, and it's been 9 months since I've had a phlebotomy. The best thing you can do for your diet is not eat foods with iron in it. The more iron you eat the more phlebotomies you have to have. I hope this helps somebody that reads it. And also stay away from B12

I was diagnosed with polysythema Vera a little over 10 years ago. My weight has went from 155 to where I'm at currently at 185. My phlebotomies started off at every 2 weeks, then it went to 4 weeks, 3 months, 6 months, one year. And this cycle has repeated no matter what my weight is. Currently it's been 9 months since my last phlebotomy and I am at my heaviest. I try to stay away from foods with high iron. And B12.

Hello, does anyone know if DDR (DNA Damage Repair) can take place on the JAK2 V617F mutation? Or once it's mutated it is mutated forever?
Thanks

Hi @tennis7777, welcome to Connect. I’m not a medical professional but from my experience of having 3 acquired genetic mutations which caused my leukemia, once a gene has mutated they don’t reverse on their own.

There are medications/treatments which can help slow the proliferation of the damaged cells but they don’t reverse the mutation. Stem cell transplants and Car T therapies can be potential cures for patients.
Some mutations may be corrected through Genome editing, as indicated in this article:
>Genome editing to model and reverse a prevalent mutation associated with myeloproliferative neoplasms https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247858#:~:text=Here%20we%20develop%20“scarless”%20Cas9-based%20reagents%20to%20create,%28HSPCs%29%2C%20and%20immunophenotypic%20long-term%20hematopoietic%20stem%20cells%20%28LT-HSCs%29.

Have you been diagnosed with a blood condition because of a JAK2 V617F mutation?