Hi @lindakay55 I’m so happy that you’ve joined Connect. It’s truly an amazing forum with people coming together to share their experiences all variety of issues. It’s especially helpful to be able to speak with someone having a similar diagnosis so that you get some first hand information about what to expect…and to not feel so alone and frightened.
You were recently diagnosied with Polycythemia Vera, which is one blood disorder, from a group of blood conditions referred to as myeloproliferative neoplasms (MPNs). I know…it’s a mouthful! Each of the conditions associated generally feature an overproduction of one of the blood cells…either Red, white or platelets. Or the bone marrow itself can be impacted.
Here’s a good tutorial on MPNs for you:
from Very Well Health
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
In your case your body is now producing an overabundance of red blood cells-Polycythemia Vera. It is often referred to as a blood condition though technically considered a blood cancer, according to my Mayo and local hematologists.
However, as your hematologist mentioned, it’s not the kind of cancer that will likely end your life. In fact, most hematologists, tongue in cheek say, “This is something you’ll likely die with, not from.”
Because your doctor discovered that you have a mutated JAK2 gene, that means you have primary PV, caused by this mutation. It is not something you were born with. It is defect in a gene that was acquired somewhere along your life journey. Many of us, as we age, pick up a mutation or two or three…it’s just a fact of aging. Some cause little issue, others can set the ball rolling such as overproduction of cells.
The mutation on that JAK2 gene causes a glitch in the blood cell assembly line. Basically the ‘off’ switch is bypassed, allowing your red blood cells to over produce!
Remember the old I Love Lucy show with the Chocolate factory…? ☺️
To assist in getting the production under control your doctor has suggested hydroxyurea. HU). This is like a new production manager coming in to help oversee the process to keep the red blood cells at a controlled level.
Your doctor also has you taking a baby aspirin daily to help keep the over abundance of red cells from sticking together and forming unexpected blood clots.
The HU he’s prescribed, taking one pill every 4 days is a very, very low dosage. You most likely won’t even notice you’re taking that as side effects would be minimal. HU, while listed as a chemo therapy is NOT the type of aggressive chemo you’re imagining. This is just a form of classification. So you can relax!!
But to answer your question, the aspirin alone will not do the job!! It will not stop the proliferation of red blood cells. It’s important to take the HU along with it! It is ok to take both medications together as he suggested. You’ll have frequent blood work to check the progress.
I know this reply is quite long but I wanted to help you see that this isn’t the end of your life and you’re not near dying, as you’re concerned. We have so many members here who also have PV, have been on HU or other meds to control this and are living long and pretty healthy lives! So please, take a breathe, exhale and start living your life again!
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@loribmt
Thank you so much. I so appreciate your time and your thoughts.