Contracting/developing polycythemia vera

Posted by robinll @robinll, Jul 4 6:43pm

There is no known cause for developing Polycythemia Vera but I suspect that maybe too much exposure to radiation might bring on this blood disorder. I have over my lifetime, I was 71 when the first signs that my PLT count was way over what it should be, I have had more than the ordinary amount of X-Rays. That possibility was suggested by my Hematologist when I asked what might be the cause for this disease. Does anyone with PV have a similar over-exposure to Radiation?

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After getting 3 blood clots in my right leg I was tested and tested positive for PV. I too have had Xrays,but also worked at a antenna plant for a year and was exposed to radiation one day and thought nothing of it. Also was once in a urainium mine on a tour.So maybe that's the cause.Have had PV for about 2 years and now getting used.Good Luck.

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I was diagnosed with PV two years ago. Absolutely no exposure to radiation. Haematologist says it’s caused by the JAK2 gene, the appearance of which in one’s system is still a mystery.

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I have PV and you bring up an interesting root cause possibility for this disease. I developed breast cancer in 2009 which require among other things 36 radiation treatments..I get 3D mammogram every year which has a significant amount of radiation each time. I have asthma and fight every time they want a cat scan..I knew radiation is toxic but sometimes it's necessary.. I had a clogged carotid which took fluoroscopy during my procedure. Fluoroscopy is the strongest application of radiation available...Ive thought many times the root cause of my PV is radiation exposure. I haven't raised this with my Hematologist since it's well documented there is no known cause for PV..It's an orphan blood cancel so I don't expect in my life time a root cause and cure are on the horizon. I'm 76 and made peace with the disease and chemo..I'm lucky I have a wonderful hematologist at a well known academic center..As I walk though the hospital for frequent lab testing I look around me and regularly reminded how lucky Iam compared to others I see. We with proper care will live years and even decades to enjoy our life, even though it may be a new normal. .Do I believe excessive radiation is a root cause for PV, yes, It's occurred to me..As a practical matter I have PV and for now nothing will change that. I have good days and better days and I intend to enjoy my family and friends...You seem like you may have a medical background..Don't be afraid to bring up your thoughts..All through history, for instance penicillin, was an accidental finding..Maybe you're onto something. Good luck and thanks for the insight,

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@inevanmac

I was diagnosed with PV two years ago. Absolutely no exposure to radiation. Haematologist says it’s caused by the JAK2 gene, the appearance of which in one’s system is still a mystery.

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What, you have never in your lifetime had an X-Ray? Yes, the hematologists say there is no 'known' cause of this disease but as we know from history, there is always a cause.

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In answer to your question, perhaps a couple when young (I’ve been lucky!)…. As for the cause, I don’t envy the researchers trying to find it.

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Hello my fellow PV club members. I would like to add another theory to the mysterious cause of PV. Toxic material exposure. I retired from the US Army after 30 years of service all over the world. I was assigned to Fort Detrick, MD, home of the U.S. Army Medical Research Institute for Infectious Diseases where there was an anthrax spill which contaminated an entire building which remains vacant to this day. I was in Iraq and in Afghanistan and exposed to Ionizing radiation exposure, Burn pits, Sand, Dust, Particulates, Oil well fires, Sulfur fires, and Pesticides. I currently have a VA disability claim pending to get my PV as "service connected" so my wife will receive beneifts when I die. Who is to say what the cause of PV is? I go to a fantastic oncology center in Kentucky where I see other cancer patients experiencing terrible effects of their cancers. My PV has little effect on me and I am blessed I have PV which I call the diet coke of cancers. I remain active, go to my gymnasium 3 times a week, and recently came back from a Disney cruise with my grand children. Let us live every day as if there is no tomorrow. Enjoy every mintue of this glorius time on earth. From the Heartland of America where I walk barefoot in the cool Kentucky Bluegrass. I wish you all the best!

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@inevanmac

I was diagnosed with PV two years ago. Absolutely no exposure to radiation. Haematologist says it’s caused by the JAK2 gene, the appearance of which in one’s system is still a mystery.

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Same. Damn that JAK2 gene! I was happy to hear it’s not inherited so I didn’t have to worry about my children. Seems odd, it’s a bone marrow thing and not inherited right? Just dealing and glad it can be treated. Not crazy about the hydroxyurea but I’m on a low dose and it’s working. Also it’s super cheap. Take care ❤️

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@bluegrasspv2018

Hello my fellow PV club members. I would like to add another theory to the mysterious cause of PV. Toxic material exposure. I retired from the US Army after 30 years of service all over the world. I was assigned to Fort Detrick, MD, home of the U.S. Army Medical Research Institute for Infectious Diseases where there was an anthrax spill which contaminated an entire building which remains vacant to this day. I was in Iraq and in Afghanistan and exposed to Ionizing radiation exposure, Burn pits, Sand, Dust, Particulates, Oil well fires, Sulfur fires, and Pesticides. I currently have a VA disability claim pending to get my PV as "service connected" so my wife will receive beneifts when I die. Who is to say what the cause of PV is? I go to a fantastic oncology center in Kentucky where I see other cancer patients experiencing terrible effects of their cancers. My PV has little effect on me and I am blessed I have PV which I call the diet coke of cancers. I remain active, go to my gymnasium 3 times a week, and recently came back from a Disney cruise with my grand children. Let us live every day as if there is no tomorrow. Enjoy every mintue of this glorius time on earth. From the Heartland of America where I walk barefoot in the cool Kentucky Bluegrass. I wish you all the best!

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I too believe toxic exposure in the military leads to some of the blood cancers. I have MDS. I was exposed to both chemicals and radiation during service. I also have an open claim with VA . I do not expect VA to allow the claim. Viet Nam veterans fought for years over agent orange. While we know blood disorders and cancers occur at a higher rate among veterans, the VA is not likely to acknowledge the connection.

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@albertedward

After getting 3 blood clots in my right leg I was tested and tested positive for PV. I too have had Xrays,but also worked at a antenna plant for a year and was exposed to radiation one day and thought nothing of it. Also was once in a urainium mine on a tour.So maybe that's the cause.Have had PV for about 2 years and now getting used.Good Luck.

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I have had pv for 3 years dr did a bone marrow biopsy cause red count was going up. I searched on line for cure and found that pv is rare and no none cure but perhaps
bone marrow trans plant but consider that instead of helping it could make things worse.

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