Polycythemia Vera and Nutritional Ketosis

Have you thought about a second opinion? In my opinion, for what it's worth, a PV specialist in San academic institution is what works for me. 49.9 hemoglobin seems a bit high.

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!

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.

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.

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

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?

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

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.

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

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!