Yesterday we started talking about MPNs, just a general overview. Today we will be talking about Polycthemia Vera, or PV. This is again a re-post from earlier.
What is PV?
You may remember in my last issue regarding MPNs as a whole, over the next few weeks I plan on breaking down each of the 3 main MPNs (PV, ET, and MF).
I will start with Polycythemia Vera(we will be addressing Primary Polycythemia).
Poly-Greek for many
Cythemia(Made up of 2 words) Kytos – Greek word meaning Cell and
Haima – Greek word meaning Blood.
Vera – From the word Verus, meaning true.
To sum that up: Many blood cells floating around in the blood stream.
PV affects all of the hematopoietic bone marrow elements, meaning all the blood cells produced in the marrow are increased. This can lead to a variety of different issues and symptoms including, but not limited to headaches, itching(unique to PV), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke.
As I said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to PV.
How are you diagnosed with that disease/condition/thing?
How do they treat it?
When will it be cured?
As with most MPNs, PV can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB). What the doctor is looking for in aCBCis an abnormal increase in blood cell amounts. Red cells, white cells, platelets, everything. With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.
Treatment for PV varies by patient. Treatment ranges from watch and wait, or phlebotomy, to prescription medications like Hydroxyurea or Anagrelide(More common for ET patients, but PV can take it as well). Phlebotomy is basically blood letting. When counts get too high, a patient will go to the clinic, and a unit or so of blood will be removed from their body, thus lowering blood counts.
As for a cure, this is the same as with any MPN. There is no “cure” per se. The disease can be managed thru treatment, and some can live a relatively normal life with little to no interference from the disease. However, since every patient is different, everyone will experience a different set of symptoms of the disease.
I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about PV. I would like to take this opportunity to invite PV patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”
Tomorrow we will be talking about Essential Thrombocytosis (ET)
3 thoughts on “Blood Cancer Awareness Post 14: Polycythemia Vera”
Thanks for taking the time to explain MPN’s to the public. However, I have to take exception with saying “one can live a normal life with little to no interference from the disease”. While this may be the case with some afflicted with this disease, for many, PV is a debilitating illness that presents itself with severe pain and fatigue. Every person with PV has a different set of symptoms and tolerance to them.
Thank you again for bringing awareness to this rare and little know disease.
Thanks for the comment, Bruce! I suppose I should change that to “Some can”. I have spoken to other patients who have told me that were it not for their occasional blood tests, they have no other issues with the disease. Please do not think I’m being dismissive of anyone’s pain here. I am an ET patient myself, and know the pain that it can cause.
Thanks again for the comment!
Thanks for your blog on this. I agree on the whole “not knowing” you have this until you’re sick enough to warrant a blood draw. I was exercising a lot, according to my husband. I wouldn’t get as tired as others. But after a strange episode of dizziness and having a high blood pressure, especially the diastolic pressure being over 100, I asked my doctor to check my cholesterol levels since they’d not been checked in awhile. That’s when we found my hematocrit to be 69. No one had been checking my BPs in the past. It made sense…the pressure in my head, the always bloodshot eyes. My blood pressure is back to normal now…100/60 vs the 150/101…this after 11 phlebotomies over 5 1/2 months. It’s taken me a year and a half to get back to being able to exercise without hitting a heart rate of 190!