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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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cpmcmah | @cpmcmah | 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)
Profile picture for jackiecarey @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.

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@jackiecarey

PV happens out of nowhere. I've read it usually happens to men in the 70s and 80s. I received this a few year ago at 46. There are some medicines for younger patients, but getting insurance to cover them is a whole other issue.

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cpmcmah | @cpmcmah | 4 days ago
In reply to @storm16 "That is outstanding. As of yesterday, I have been on carnivore for 19 months. My phlebotomies..." + (show)
Profile picture for storm16 @storm16

That is outstanding. As of yesterday, I have been on carnivore for 19 months. My phlebotomies have been reduced to every 6 months. My bloodwork is normal, A1C, normal, hematocrit was in the normal range, cholesterol is up (a good thing as long as you don't have a bunch of sugar in your bloodstream). Total cholesterol is a hair over 300. However, cholesterol protects from strokes, makes vitamin D, CoQ10, testosterone (wonder why men on statins need the little blue pill?), estrogen, and so forth. Among the side effects, you have more energy, and less brain fog, since your brain is made mostly of fat and cholesterol.

It appears, from my research, that this entire fiasco is being caused by big pharma wanting everyone on one or more prescriptions, then selling us other 'scripts to manage the side effects of the first set...Lather, rinse, repeat. And the food industry makes several orders of magnitude profit on processed, carb-laden, sugar loaded foods, especially since sugar is 30x more addictive than cocaine. It is also the reason that Type 2 diabetes is such an epidemic.

Oh, and if you want to take weight loss to the next level, try fasting 1-2 days a week. I have been for the past 3 weeks, and have dropped an additional 10 lbs.

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@storm16

Good information. You would think with carnivore the iron would cause RBCs to increase a lot. I have read that low carb diets help most people. I don't think big pharma cares much about PV though. There are very few medicines available for PV. The best one out, Besremi, is only for the elites or those with insurance companies that care about their customers. But if we can get by with diets, much better!

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cpmcmah | @cpmcmah | 4 days ago
In reply to @tennis7777 "Hello, does anyone know if DDR (DNA Damage Repair) can take place on the JAK2 V617F..." + (show)
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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

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@tennis7777

They say it's permanent, but then they can't tell you how it happened in the first place! My theory is that there is a DNA switch and it changed, why couldn't it change back? The problem is figuring out how to do it.

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missescookie | @missescookie | 3 days ago

I am 58, female and have had PV for four years - diagnosed December 2021 with JAK2 positive for mutation. It was discovered after doing my yearly routine bloodwork. I also had unexplained symptoms for about two years like red nose/face/hands and toes, especially in summer with the heat. Right before my diagnosis I remember that my bone pain and fatigue got really bad to where I could barely get out of bed.

I’ve worked in clinical research for decades and have heard of many blood cancers, but not PV, probably because it’s so rare. It was a complete shock… I had been under a lot of stress (pandemic lockdowns/both husband and I were laid off at same time, etc.) He had very worrying mood disorders, and his alcoholism blew up along with his mental health at this time and I was seeking separation after 20 yrs of marriage. I think for me stress might have played a role in this cancer due to the fact that chronic stress causes inflammation. And PV is extremely inflammatory.

I have been seeing an MPN specialist and initially did only periodic phlebs but these didn’t help my platelet count - eventually made it worse. Decided to go on ropeginterferon (Besremi) I refused the oral chemo like hydrea, and after taking low dose Besremi for 2 yrs all of my numbers are normal. No phlebs needed. I am hoping it stays this way and that I’m on my way to remission.
I eat very healthy, and have always exercised. I don’t smoke and I’m a healthy weight with no other health issues. I think diet can play a role in helping symptoms of this disease (such as eating an anti-inflammatory diet/Mediterranean diet, etc.) which I follow closely, but I also think targeting the bone marrow to stop disease progression like Besremi does, is what is really working, at least in my case.

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