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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@buckaroobanzai

Hi Sammy,

Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia. PV is a very VERY slow growth cancer while its Plain Jane cousin polycythemia is non-cancerous. Both cause the bone marrow to produce and pump out too many of one or another blood cells (in my case, my body produces too many red blood cells). This means we tend to have 'thick' blood; our hearts must work harder to push all that blood around our bodies, and the blood has a hard time squeezing through tiny capillaries. And this in turn means that some parts of our body do not always get enough oxygen. The 'thick' viscous blood makes us susceptible to blood clots and heart attacks.

OK. So now that I have scared you (unnecessarily), let me remind you that even if you have the cancerous form, you can live for decades if you receive proper treatment. I suspect that's what your MD means by 'not fatal.' So don't let all of the above get you down. This disorder is easily treated.

Interestingly enough, in the early years, both types of polycythemia generally cause the same annoying symptoms. Itchy skin, brain fog, higher heart rate and blood pressure, and exhaustion are my primary issues. Anyhow, because the symptoms are generally the same for both PV and P, we generally receive the same treatments, at least at first. I receive monthly therapeutic phlebotomy, which is really just like donating blood, and take low-dose 'baby aspirin' twice per day. I do very well on that regimen.

Sooner or later, some people must take a medication to slow down the production of whatever blood cell your bone marrow seems to 'favor.' I have not reached that point, so I will leave others to tell you about that phase.

Try not to worry. Let your MD treat your signs and symptoms, be compliant, and you can be OK.

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Replies to "Hi Sammy, Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia...."

Thank you for your positive message to Sammy. My name is Cindy, and I was diagnosed with PV in 2021 after bloodwork for a regular PCP appointment. I was diagnosed with metastatic breast cancer in 2019 (second battle with breast cancer first diagnosed in 1999 at the age of 39). I had surgery, high dose chemo and radiation therapy. I kept positive and did really well. So, when I was diagnosed with PV, I was completely devasted. My treatments thus far have been therapeutic phlebotomy and aspirin. I first had them weekly, monthly, every 3 months and now I am at every four months. My hematologist is at MGH Boston and feel like I am in very good hands. This disease is a very lonely one, it is so rare, and I try my best to stay positive and not to worry so much. I have wonderful family and in December became a grandmother. Thank you again for your positive message, you made my day. Best wishes.

Thanks so much for putting some common sense to our diagnosis. Sometimes when I read other peoples posts and have only the symptoms you have, I keep waiting for the other shoe to drop. I’m 74 and have probably had PCV for four or five years, but just diagnosed two years ago to me, the itching is probably the worst right now. Anyway, I say just live your life to the fullest and deal with the symptoms. Thanks.