Polycythemia Vera: Just been diagnosed

Agreed! I found out last fall that I have ET and the Jak2 mutation. BMB was negative (for leukemia) but my iron and ferritin are extremely low. No obvious symptoms so far. Both my oncologist and my vascular surgeon nephew tell some people have treated this condition for years with Hydroxyurea with no or only minor side effects. So far no negative reaction to the medication for me.

Don’t be, just trust your specialist. It is manageable with medication.

Hi,

Joining in to read up on PV while waiting for my Jak2 results.. I'm 43 and had an "unprovoked" clot on my lung last April. 1 year later, tons of tests/money/specialists and feeling worse and worse.. and (finally) a better hematologist, & here I am. My hematocrit is 50.3, hemoglobin 16.1 (steadily rose the past year), RBC 5.68, MPV 8.8 (keeps getting lower) but my Erythropoietin just came back and it is 5. Some of my symptoms are constant headaches/neck stiffness, extreme exhaustion, insomnia, face flushing/overheating most nights, racing heart rate doing basic day-to-day stuff (hits 130-170 if I do just about anything) chest and constant breathing/lung pain... and now a bumpy red rash on my face 🙁

I'll update when I get my jak2 results in.

Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though not happy that you have Polycythemia Vera. But you came to the right place. As you can see you’re not alone with this blood condition. There are several members in our support group for PV and they’re willing to share their experiences and offer support.

Since you’re new to the blood disorder, I thought I’d load you up on some reading material. PV is considered a blood cancer but it’s generally slow to develop and is managed with medications to impede its progression.

It’s actually in a classification of blood conditions referred to as Myeloproliferative disorders…where the bone marrow is producing too many of a particular blood product whether it’s red or white blood cells or platelets. In your case it’s red blood cells.
The Jak2 mutation (which happens randomly) is frequently the culprit behind PV. Though it can happen without the mutation. Jak2 tricks the marrow into over production.

I’ve posted a link to that information on Jak2 below, along with a few others on proliferative neoplasms and PV. Knowledge is power and it will give you a head start with potential questions to ask your hematologist
https://www.mayoclinic.org/departments-centers/myeloproliferative-disorders-group/ovc-20201578
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
https://www.verywellhealth.com/jak2-mutation-5217909
It’s encouraging that you found a better hematologist. It’s important to find someone you trust to give you the proper diagnosis and help you along with the right treatment plan. I know how frightening it can be when you receive an unexpected diagnosis like this. I had a very aggressive form of leukemia a few years ago. It clipped me off at the knees!! I’d done everything right in my life…but cancer, unfortunately, doesn’t care. It had other plans. But now, 4 years later I’m healthy, active and feel as though nothing ever happened. So please don’t fear the worst because often, the stories we tell ourselves are worse than reality.

In your case, with all the symptoms you’re having, starting the treatment will be a relief. Medication can often help bring the blood levels down to get you feeling healthy again.
Are you taking any blood thinners at this time?

Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though not happy that you have Polycythemia Vera. But you came to the right place. As you can see you’re not alone with this blood condition. There are several members in our support group for PV and they’re willing to share their experiences and offer support.

Since you’re new to the blood disorder, I thought I’d load you up on some reading material. PV is considered a blood cancer but it’s generally slow to develop and is managed with medications to impede its progression.

It’s actually in a classification of blood conditions referred to as Myeloproliferative disorders…where the bone marrow is producing too many of a particular blood product whether it’s red or white blood cells or platelets. In your case it’s red blood cells.
The Jak2 mutation (which happens randomly) is frequently the culprit behind PV. Though it can happen without the mutation. Jak2 tricks the marrow into over production.

I’ve posted a link to that information on Jak2 below, along with a few others on proliferative neoplasms and PV. Knowledge is power and it will give you a head start with potential questions to ask your hematologist
https://www.mayoclinic.org/departments-centers/myeloproliferative-disorders-group/ovc-20201578
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
https://www.verywellhealth.com/jak2-mutation-5217909
It’s encouraging that you found a better hematologist. It’s important to find someone you trust to give you the proper diagnosis and help you along with the right treatment plan. I know how frightening it can be when you receive an unexpected diagnosis like this. I had a very aggressive form of leukemia a few years ago. It clipped me off at the knees!! I’d done everything right in my life…but cancer, unfortunately, doesn’t care. It had other plans. But now, 4 years later I’m healthy, active and feel as though nothing ever happened. So please don’t fear the worst because often, the stories we tell ourselves are worse than reality.

In your case, with all the symptoms you’re having, starting the treatment will be a relief. Medication can often help bring the blood levels down to get you feeling healthy again.
Are you taking any blood thinners at this time?

Hi,

Joining in to read up on PV while waiting for my Jak2 results.. I'm 43 and had an "unprovoked" clot on my lung last April. 1 year later, tons of tests/money/specialists and feeling worse and worse.. and (finally) a better hematologist, & here I am. My hematocrit is 50.3, hemoglobin 16.1 (steadily rose the past year), RBC 5.68, MPV 8.8 (keeps getting lower) but my Erythropoietin just came back and it is 5. Some of my symptoms are constant headaches/neck stiffness, extreme exhaustion, insomnia, face flushing/overheating most nights, racing heart rate doing basic day-to-day stuff (hits 130-170 if I do just about anything) chest and constant breathing/lung pain... and now a bumpy red rash on my face 🙁

I'll update when I get my jak2 results in.

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.

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.

My husband was diagnosed with Polycythemia rubra vera about 12 years ago. He has done extremely well managing it with the help of very good haematologists. I'm somewhat concerned with a recent blood letting session where the Dr wasn't in attendance and the two nurses said he was fine to drink alcohol before the procedure. He loves a drink but has been encouraged to reduce alcohol intake - which he has significantly. He has reluctantly increased his water intake. My question is - has there been a change in advice around alcohol and this condition?