1. < Blood Cancers & Disorders

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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

REPLY
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)
@chadknudson

I definitely consulted with my oncologist before embarking on this plan. She felt that it would have a strong positive impact on my general overall health that it was worth trying provided that I agree to regular monitoring of my blood throughout the process.

I certainly don't let it define who I am, rather it's just something that I have. There are many worse things by which one could be afflicted, for sure!

The first phlebotomy was rough, multiple techs poking multiple needles in both of my arms and they just couldn't get any blood to flow. I had to come back in a few days later and had to have it suctioned out with syringes. After that though they were much better.

Jump to this post

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.

REPLY
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)
@thlas1971

I am suspecting I'll be soon officially diagnosed with PV. I'm JAK2 and blood numbers trending up over the past 18 months. Dr ordering another set of labs today. I am already on a ketogenic diet and do intermittent fasting. Occasionally 24 hours but almost always a 16-18 hour fast daily. Originally began doing that to help my brain as I am also APOE4 positive (high risk for Alzheimer's). Any ideas if fasting and autophagy are beneficial to PV?

Jump to this post

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.

REPLY
janem411 | @janem411 | Jul 22 5:35pm
In reply to @jackiecarey "Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional..." + (show)
@jackiecarey

Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional more more importantly I believe in this old guy called Socrates who said "I don't know anything, question, question question! It's in y nature, too. I noticed that my hemoglobin, hematocrit and platelets were slowly increasing over time..I would mention it to my medical Internist who would say its dehydration several times. Then in December I had a total black out in my right eye. I was able stay calm and timed it, it lasted about a minute before it completely resolved..I knew that is a TIA or mini stoke so I went to the ED..They did everything known to man looking for the root cause..Nothing was found. The neurologist put me on an aspirin...When on got home I went on MY Chart and notice that now my H &H and Platelets were now over normal. I said enough and made an appointment with a hematologist. On my first visit the hematologist walked into the room, sat down and sat you don't have leukemia and then said you have polycythemia vera..I was utterly shocked. The blood work didn't support leukemia and I had never heard of Polycyceia Vera..Even with my background. Apparently PV is so rare many Doctors have never heard of it. It was a surreal day...Shock, fear...They drew my blood then to identify the JK2 gene mutation, it came back positive as expected. I'm in a holding pattern but not for long I suspect..I'm getting a second opinion but not sure why probably not to wish I had later on....The Hematologist is a PV specialist at MDAnderson and I see her in two weeks. I'm 75 and wonder if anyone else has been diagnosed with PV at this age and what their experience
has been? I'm very open and willing to share or support in any way I can.

Jump to this post

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!

REPLY
jackiecarey | @jackiecarey | 21 hours ago
In reply to @nicolekapr "I wanted to ask how this has been going for you. My father has brain cancer,..." + (show)
@nicolekapr

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. 🙁

Jump to this post

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.

REPLY
View MoreView Less
Please sign in or register to post a reply.