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Milo proliferative neoplasms or NPNs
are a group of rare progressive blood
cancers that affect about 200,000 people
in the US.
Welcome back to our continuing
series: Behind the Mystery.
Today's topic focuses on a group of rare blood
cancers known as NPNs, specifically
polycythemia vera which causes the over
production of red blood cells which causes the
blood to thicken and that can lead to
serious health consequences.
Here to shed some
light on this rare blood cancer is
oncologist and hematologist Dr. sharp
Ellis and his patient Arthur who's
diagnosed with PV thank you guys for
being here today.
So doctor let's start
by talking about what is polycythemia
vera?
So polycythemia vera is a rare
blood cancer it's part of a group of
diseases called myeloproliferative
disorders in polycythemia vera the body
over produces red blood cells which
leads to an increase in the red blood
cell count but these patients often also
have an increase in the white blood cell
count and the platelet count as well
it's a rare disease there are only about
a hundred thousand individuals with
polycythemia vera living in the United
States and with many other rare disorders it's therefore often
overlooked and poorly understood.
This over production of red blood
cells leads to thickening of the blood which
can then lead to blood clots and it
may include DVTs or deep vein thrombosis but
also heart attacks and strokes as
well.
So doctor can you tell us what are
some of the signs and symptoms of PV
that we should be looking for?
So many of the
symptoms of fairly nonspecific, patients
may present with fatigu,e headaches
dizziness many of the patients report
sweats, itching is a symptom that maybe is
a little bit more specific, patients tend
to report more itching after they take a
hot shower.
Because of something we call
splenomegaly which is enlargement of the
spleen patients may report discomfort or
pain on the left side of the abdomen or
something we call early satiety which is
as the spleen presses on the stomach
they report a feeling of fullness after
eating just a few bites or very small
amount of food.
Now some of these
symptoms sound relatively common so is polycythemia vera
difficult to diagnose and do the symptoms present the same in
every patient?
Certainly the symptoms can vary
between patients and the symptoms
experienced and the intensity of the
symptoms can vary within an individual
patient over time some patients are
asymptomatic they may be diagnosed
because they have routine blood work
that reveals an abnormality with elevations of the blood counts
and so it really underscores the
importance of raising awareness of this
disease both amongst patients and medical
professionals so their patients report
these symptoms and have them evaluated
and that physicians recognize that these
symptoms may represent a diagnosis of
polycythemia vera and make that diagnosis and institute the
correct management.
And Arthur I'd love to hear a
little bit about your experience, you
were diagnosed with PV, how did you find
you had it?
About 10 to 11 years ago
following a routine annual physical
my internist felt the blood results were
out of the ordinary and referred me to
an oncologist hematologist who ran
additional blood work and then suggested
a bone marrow biopsy, the further blood
work showed more abnormalities, the bone
biopsy was scheduled I was hesitant
about that but then fortunately was
totally painless procedure and that
confirmed the diagnosis of polycythemia
vera.
So doctor is there a cure for PV?
So there is no cure for p vera but with
the correct follow-up with your doctor the
disease can be managed and the symptoms
can be controlled.
Do you have any advice
for people out there who might be
finding out that they have polycythemia
vera the best advice is find a good
oncologist hematologist and follow up as
often as possible.
As absolutely right
often recommends to make sure the
blood values are kept somewhat with in
check and also check the website: Voices
of MPN dot com, is a good resource for
information.
Well thank you both so much for being
here thank you Dr. Pela.s Thank You
Arthur.
And as Arthur mentioned if you
want to have more information on polycythemia vera you can visit
voices of NPN dot com or of course you
can always go to our website
thebalancingact.com for more information.
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