Polycythemia Vera and Nutritional Ketosis

Hi everyone, I was diagnosed with PV in Feb 2020. I started pegasys (initially 45, later 90mcg / week). I still had to get regular phelebotomies --- had maybe 10 of them in 6 months. My HCT kept going above 45 pretty fast. Also raising the Pegasys dose to 90mcg after 4 weeks seemingly had no effect. I started ketogenic diet through the encouragement of my mom, to lose weight. The immediate effect on my blood markers was very surprising. My HCT remained below 45 (42.7 , 42.9) in the last two 3-weeks-apart blood draws. Also my WBC (6.8 to 5.1-5.3) and platelets (550-600 to 490) came down a little bit --- again, for the first time.

Keto worked like magic for me. Also Pegasys could've kicked in after ~4 months, but my bloods were so resistant until I started keto! If anything, the two turned out to be a surprisingly good combination.

I want to mention I eat a fairly healthy ketogenic diet. Lots of veggies. Limited meat (maybe every 2 days), mostly fish. Mediterranean style.

As a bonus content, let me share this paper regarding the effects of ketosis on other cancers. While not a guarantee, it's found to be useful for most cancer types to slow the growth of tumors.
Ketogenic diet in cancer therapy, 2018
10.18632/aging.101382

Always check in with your doctor before making any significant changes in your life. My personal experience has been that while I am in full nutritional ketosis, it appears to slow down the blood production process.

When I eat a traditional American diet, I am requiring phlebotomies every 4-6 weeks. When I have stayed in nutritional ketosis for extended periods of time, I have seen the time between phlebotomies extended as far a five months between phlebotomies.

I have experimented with going out of ketosis and seeing how long I could go between phlebotomies and it always settles back into that 4-6 week cycle. Your mileage may vary. If you have Type-1 Diabetes you definitely do not want to do a cryogenic diet. Always consult with your care team and get their opinion on whether this might be a good option for you.

I wanted to ask how this has been going for you. My father has brain cancer, and he has done the Leto diet and we believe it has saved his life and extended QOL.
I am newly diagnosed with PV, have had it a very long time now but only recently they caught it. I would do anything for the fatigue breathlessness and overall hangover feeling to go away. My bloods were literally .01% away from a phlabotamy at 49.9% in office. I need help today. 🙁

Look up: Stephen Phinney, MD, PhD – Inflammation, Nutritional Ketosis, and Metabolic Syndrome & Dr. Paul Mason videos.

@richmpv, welcome to Mayo Clinic Connect. How long have you been living with polycythemia vera? In addition to adjusting your diet, do you find that any other lifestyle adjustments, like moderate exercise, help manage PV and reduce the frequency of phlebotomies?

There seem to be people here that think a keto diet may be helpful, not sure. But, I have been told what not to eat too much of: these include iron rich foods like spinach, beef, etc. I’ve reduced my intake of beef, but I still have a burger once in a while. The more iron I eat, the more phlebotomies I’ll have to have so I try to limit that. When my hematocrit goes above 45, my dr wants me to have a phlebotomy. Good luck everyone.

I first started eating Keto before I was diagnosed with PV - and it got rid of my diabetes. BUT - I had to walk 4 times a week for 30 mins before that really kicked in.
I am really interested in fasting and how that affects numbers. (Certainly this is easier to do if one is already fat adapted as in Keto - body just shifts from using outside fat sources for energy to those fat sources on board). Anyway, fasting for less than 3 days does not seem to change numbers at all - but more than 3 days brings them back into line every time.
- has anyone else found that fasting helps? If so - fasting for how long
- secondly, how often should one fast to keep numbers in line?

Those that have found some help with Ketogenic eating, have eliminated any sugar, (included fruit except berries), starch (that would be rice, etc.), any grains, and all processed foods. My husbands has gone from phlebotomies twice a week, to every 8 weeks now.

Research Ketogenic way of eating. Studies have been done at Duke University.

Isn't is amazing what they tell us is healthy food....and in reality it is not.