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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)Comment receiving replies
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 š
I'll update when I get my jak2 results in.
Replies to "Hi, Joining in to read up on PV while waiting for my Jak2 results.. I'm 43..."
I'm with you, though I immediately associated myself with a university medical system, and they have nailed it from the beginning. I've been told for years - if you can, get associated with a university medical college/university. So glad I did. I'm still in the process, but my numbers are quite similar to yours. Fingers crossed for both of us! Carol
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Hello @itsmepeggysue, welcome to Connect. Itās a mixed welcome because Iām happy you found us, though not happy that you have Polycythemia Vera. But you came to the right place. As you can see youāre not alone with this blood condition. There are several members in our support group for PV and theyāre willing to share their experiences and offer support.
Since youāre new to the blood disorder, I thought Iād load you up on some reading material. PV is considered a blood cancer but itās generally slow to develop and is managed with medications to impede its progression.
Itās actually in a classification of blood conditions referred to as Myeloproliferative disordersā¦where the bone marrow is producing too many of a particular blood product whether itās red or white blood cells or platelets. In your case itās 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.
Iāve 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-20201578https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850https://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=7ef15edfde441187c31e3aecf739f7b2Itās encouraging that you found a better hematologist. Itās 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!! Iād done everything right in my lifeā¦but cancer, unfortunately, doesnāt care. It had other plans. But now, 4 years later Iām healthy, active and feel as though nothing ever happened. So please donāt fear the worst because often, the stories we tell ourselves are worse than reality.
In your case, with all the symptoms youāre 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?