Polycythemia Vera: Just been diagnosed

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?utm_campaign=686803700-432030&utm_source=bingpaid&utm_medium=con&utm_content=73255250357400&utm_term=o-polycythemia%20vera-polycythemia%20vera&msclkid=7ef15edfde441187c31e3aecf739f7b2
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?

Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3 kids for easter weekend. They are great kids and enjoy their company. My initial appt with the oncologist isnt until next Tuesday (4/18) Seems like it is never going to happen. I have stopped reading about this and will wait for the Dr to tell me what I need to know. I worry way tooo much- How are you doing? Hope all is going well for you and that you are enjoying that baby. What joy the bring us. Thank you for being my sounding board. Sarah

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?utm_campaign=686803700-432030&utm_source=bingpaid&utm_medium=con&utm_content=73255250357400&utm_term=o-polycythemia%20vera-polycythemia%20vera&msclkid=7ef15edfde441187c31e3aecf739f7b2
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?utm_campaign=686803700-432030&utm_source=bingpaid&utm_medium=con&utm_content=73255250357400&utm_term=o-polycythemia%20vera-polycythemia%20vera&msclkid=7ef15edfde441187c31e3aecf739f7b2
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.