Been struggling with Polycythemia Vera for 2 years

Posted by withhope @withhope, Jul 29 7:48pm

Hi. I’ve been struggling with Polycythemia Vera for 2 years. My treatment began with phlebotomies, but not helpful. Then put on Hydrea, but caused multiple side effects and we finally discontinued it.
My iron levels have been very low for many years and while my Hematologist says it’s not protocol to have iron infusions, we proceeded with them but yielded zero helpful results.
One of the ongoing questions I’ve had since diagnosed is the various medical opinions about whether or not PV is a type of cancer? Or a blood disorder? Each doctor involved in my care, seems to have a different opinion about this. But it really affects my ability to get home healthcare as some insurances won’t pay if it is or is not cancer.
Has anybody else had these issues with the “correct label” for PV?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

nypara66 | @nypara66 | Jul 30 6:49am

Hello, I was diagnosed with PV in Jan 2023. Taking Hydroxyurea just 3X a week currently with little side effects. While taking it daily it affected me differently. I get a phlebotomy about every 8-9 weeks. My doctor does state it is a blood cancer and if you Google it, it will be defined as such. I would think health care facilities know this? It is very rare and many physicians are not even aware of what it is sadly. Good luck!

chadknudson | @chadknudson | Jul 30 6:53am

Polycythemia vera (PV) is primarily classified as a blood disorder, but it has characteristics of a bone marrow cancer. It's a type of myeloproliferative neoplasm, which means it involves the overproduction of blood cells due to abnormalities in the bone marrow. In PV, there is an excessive production of red blood cells, though white blood cells and platelets can also be increased. The disorder is often driven by a mutation in the JAK2 gene, which affects the regulation of blood cell production. So, while it originates from a problem in the bone marrow, it manifests primarily as a disorder of the blood. So, technically it can be described as either a blood disorder or a type of bone marrow cancer.

withhope | @withhope | Jul 30 9:50am

In reply to @chadknudson "Polycythemia vera (PV) is primarily classified as a blood disorder, but it has characteristics of a..." + (show)

Thank you for the information.

withhope | @withhope | Jul 30 9:51am

In reply to @nypara66 "Hello, I was diagnosed with PV in Jan 2023. Taking Hydroxyurea just 3X a week currently..." + (show)

Thanks!

sunbird09 | @sunbird09 | Jul 30 2:47pm

I had Polycythemia Vera almost 20 years. Was taking Hydrea and it was working for me.
This is cancer of the blood in the bone marrow.
Then my spleen got larger and then my liver as well.
My CBC numbers changed. My white blood cells (WBC) got low.
My Polycythemia Vera has now changed to Myelofbrosis.
Chronic Leukemia.
I’m now taking Jakafi 5mg twice a day.
There are days I am so tried that I take a lot of naps.
I’m 69 years old.
Jakafi cost is high. It’s $20,000.00 for a month supply.
I’m lucky that my insurance is paying for all of it except $1,019.00 . My co-pay.
Good luck in the days to come.

withhope | @withhope | Jul 30 6:59pm

In reply to @sunbird09 "I had Polycythemia Vera almost 20 years. Was taking Hydrea and it was working for me...." + (show)

Thank you for sharing some of your experiences.
God bless you.

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