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Wed, Jan 23 11:20am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I was diagnosed at age 46 with Polycythemia Vera and am JAK-2 positive. My treatments have been monthly bloodwork and phlebotomies when my hematocrit exceeds 45. I was put on an aspirin regimen where I take one 81mg aspirin daily, put on a hypertension medicine, and other than that I just focus on eating healthy and getting exercise.

Wed, Jan 23 11:16am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I am JAK-2 positive and I have not experienced back spasms, left side pains, left shoulder pain or neck pain.

Sat, Jan 12 9:23am · Polycythemia Vera in Blood Cancers & Disorders

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased — I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high — my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

Dec 26, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

You may find that despite having the JAK2 mutation, your life may not be any noticeably different. I'm now on three years with a diagnosis of polycythemia vera and other than monthly blood lab work and regular phlebotomies, my life has remained relatively unchanged. I'm still very active — I am still able to work as a soccer referee. You can go for decades managing the condition without having any significant changes in your health and the way you feel. Support your overall general health by eating well, getting exercise, and simply taking care of yourself.

Dec 3, 2018 · Polycythemia Vera in Blood Cancers & Disorders

I was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high blood pressure. Historically, I have never had any issues with high blood pressure. I was having occular migraines — seeing "floaters" moving through my field of vision, something I was familiar with because of migraines but I was having them without getting an actual migraine. My blood pressure was elevated and when I checked it, I found it to be considerably higher than normal. I went to the doctor and they ran a complete panel and when the results came back they referred me to oncology which I thought was really strange but later on it all made sense. My blood pressure was elevated due to my body simply producing too many red blood cells and in addition to the excess red blood cells I also had elevated platelets. After running tests found JAK-2 mutations, the diagnosis was polycythemia vera. My oncologist has set a threshold of 45% for my hematocrit, so when routine blood labs show a hematocrit higher than that I have a plebotomy. I was on a six week schedule for those initially, and then it moved to about every four weeks. After I went on a diet that put me into nutritional ketosis, I noticed that the time between phlebotomies increased. I have been able to go 8 and 12 weeks between them while in nutritional ketosis. I can't say whether or not there is a direct correlation, but that is what I've observed myself. Others may experience different results.

Oct 16, 2018 · Polycythemia Vera and Nutritional Ketosis in Blood Cancers & Disorders

You should consult with your doctor before going down this path for sure. In a nutshell, a diet that is very low in sugars and carbohydrates will cause you to go into a state of nutritional ketosis. I strive to consume less than a teaspoon worth of sugar in the morning before my midday meal (4g of carbohydrate is roughly equivalent to a teaspoon of sugar) and then throughout the rest of the day I just try to minimize my carbohydrate and sugar intake. I would strongly encourage you to seek out the advice of a qualified medical professional like a bariatric specialist. Nutritional ketosis diets are not necessarily safe for everyone so definitely consult your doctor first.

Oct 16, 2018 · Polycythemia Vera and Nutritional Ketosis in Blood Cancers & Disorders

Thanks for sharing your results with us. I don't know if there is a correlation between nutritional ketosis and slower generation of the red blood cells, but I do find it interesting that more than one of us has experienced this.

May 24, 2018 · Meet fellow Caregivers - Introduce yourself in Caregivers

The doctor sent my dad to physical therapy to see if he could regain some strength in his right leg. The doctor also noticed that the reflexes for that leg were markedly less than his left leg. If after several weeks of physical therapy they do not see improvement in strength then they want to do an MRI.