Polycythemia Vera and Nutritional Ketosis

Posted by chadknudson @chadknudson, Mar 26, 2018

I was diagnosed with Polycythemia Vera several years ago and my treatment regiment has been regular phlebotomies (generally about every four weeks.) I needed to drop some weight so I started a diet plan that would put me in nutritional ketosis. I do not know if the two are related, but I was able to go five months without a phlebotomy. It may just be a coincidence, where I might be stabilizing after the first few years, but I just wanted to pass this along in case it sparked any thoughts from others.

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janem411 | @janem411 | 4 days ago

In reply to @jackiecarey "Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional..." + (show)

And how are you doing now? I was diagnosed with PV about 7 months ago at 72– very similar story about problem eyes, looking at old test results, etc. I too never heard of PV, and I’m pretty medically savvy also. I’m thinking of MDAnderson for another opinion too. Currently phlebs and low-dose aspirin and many supplements to keep the clotting away. Might you share your experience at MDAnderson? It would be a long trip for me, but my life is worth it!

jackiecarey | @jackiecarey | Jun 24 11:47pm

In reply to @thlas1971 "I am suspecting I'll be soon officially diagnosed with PV. I'm JAK2 and blood numbers trending..." + (show)

I have PV and been doing intermittent fasting for years.I'm 18/6 no snacking.. I'm so used t it that I'm never hungry or looking for food. This controls my weight, got off of BP meds and managed on hydrox 500 three times a week. I'm not advocating intermittent fasting for Alzheimers or PV but I know I'm healthier overall using intermittent fasting.

jackiecarey | @jackiecarey | Jun 24 11:24pm

In reply to @chadknudson "I definitely consulted with my oncologist before embarking on this plan. She felt that it would..." + (show)

I have polycythemia Vera..Cancer is not new to me, I had breast cancer in 2009 with chemo and radiation, Just passed 15 years with no recurrence. I had bowel cancer in 2012 it has familial roots, was watching for it and got it before it left the bowel and only surgery was needed. Now PV, I had phlebotomies in the early days with hydroxurea then finally I'm controlled with hydroxurea. In the early days I had a terrible attitude, anger and maybe some depression..Finally I decided I'm my worst enemy, need to change my attitude after all, as stated earlier, there's far worse diagnosis's that people are dealing with and I'm reminded of that every time I walk into MDAnderson for appointments. I changed my attitude and I'm starting to feel like my old self again. I'm retired, joined the Nurses Honor Guard yesterday, eating well and living with a purpose instead of living the sick role, it's has changed my life.

sunshine2344 | @sunshine2344 | Feb 11 5:22pm

Hi. I also was diagnosed with polycythemia Vera JAK2. 2 years ago. I have never done nor plan to go on medication etc. I have been trying to keep my levels down. HCT. I have to have therapeutic phlebotomy also monthly. But I eat a Mediterranean diet and take a regimen of whole food supplements (. BY chiropractor)
A year ago I was doing a detox and for 21 days I guess I was doing keto (lots of veggies, fish. Salmon etc) low carb
My levels were fabulous
I also have hepatitis C which was from a transfusion long time ago. Never had any problems till recently it is now showing but when I did ketosis it went way down
Bottom Line I am going to try again to see if that may work in my favor as well.
Have your iron been low with all the phlebotomy? Mine has been but my last draw was normal. Yea.
Hope you respond and keep me up to date. Thank you for information that seems to be working for you

Lori, Volunteer Mentor | @loribmt | Feb 7 1:03pm

In reply to @tennis7777 "Hello, does anyone know if DDR (DNA Damage Repair) can take place on the JAK2 V617F..." + (show)

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?

tennis7777 | @tennis7777 | Feb 7 11:08am

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

matthew1973 | @matthew1973 | Feb 5 4:16pm

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.

matthew1973 | @matthew1973 | Feb 5 4:10pm

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

wendy517 | @wendy517 | Feb 5 11:25am

In reply to @chitra "Recently, I made a series of changes to my lifestyle to avoid monthly venesection. It seems..." + (show)

@chitra

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.

Jump to this post

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!

chitra | @chitra | Feb 4 11:29am

In reply to @mcvorbs "I agree with you. We must self-manage. It has been interesting to find natural ways to..." + (show)

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

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