Rare Blood Cancers: What You Need to Know

Rare Blood Cancers: What You Need to Know


This year an estimated
1.7 million individuals in the United States will be diagnosed with some form of cancer. And for our next guest,
Matt, it was a rare cancer that caused his blood
to literally thicken. Well, we sat down with Matt
and his doctor to learn more. – My name is Matt, I’m 55 years old and in 2005 a doctor raised
concern over my blood work during prep for a surgery. Over the next two months, while I recovered from the surgery, I suffered at least two heart attacks and I was referred to a hematologist. In late 2005, I was
given a bone marrow test which came back positive
for a rare type of cancer that I had never heard of. I was diagnosed with
polycythemia vera or PV, a rare blood cancer. – Matt joins us today,
along with his physician, Dr. Ellen Richie from
Weill Cornell Medicine at New York Presbyterian Hospital. So good to have both
of you and, Dr. Richie, I want you to explain
or tell us little more about this cancer. – Matt has PV, which
is a rare blood cancer, categorized as a
myeloproliferative neoplasm. And these are disorders where the bone marrow
functions abnormally. – And the bone marrow is where the body’s blood cells
are made, so Dr. Richie, in that vein, can you explain
who may be at risk for this? – MPNs effect approximately
200 thousand people in the United States,
it’s a rare blood cancer. The risk factor for
developing these diseases is actually specific gene mutations that you may develop over time that make you vulnerable to the disease. The disease generally affects
patients over the age of 60, but people of any age can be affected. – When you do have PV, the
body overproduces blood cells causing the blood to thicken, thickening can lead to blood clots, that can of course block blood flow through arteries and veins. And I’m gonna ask you, Dr. Richie, because you are Matt’s doctor, is this what happened to Matt? – So, Matt had a particular complication early on in his diagnosis,
he had a heart attack. You can also have a stroke. So, cardiovascular disease
is a real risk factor of having polycythemia vera. Other risks to having this
disease are really, mainly, blood clots and
cardiovascular complications. So, we’re very careful
when we manage patients, to manage the disease itself as well as cardiovascular risk factors. Over time patients can develop
symptoms also, which advance. And part of good medical care
is controlling these symptoms. – Symptoms may include fatigue,
concentration problems, feeling full after eating small amounts, itching, stomach pain and night sweats. Matt, I’m curious, do you
experience any symptoms? Yes, I did, I experienced
red complexion, bleeding gums and some of the symptoms
I experience long before I was diagnosed. – Dr. Richie, what else
do people need to know about this type of cancer? – Like Matt, most patients
have never even heard of myeloproliferative
neoplasms or polycythemia vera. They’re rare blood cancers. So, this is a chronic disease. It’s a blood cancer, but
it’s followed, basically over years and decades. However, there can be serious outcomes to having the disease and
over time it can advance to a more serious form. – So, Matt, obviously
you’ve been through a lot. What advice do you have
for those who are affected? – Well, I think it’s really important that a patient seek out a MPN expert and it’s also very important
that they empower themselves with information about the disease. – I love that concept. So, I wanna ask you how you go about empowering yourself. – Sure, what I do is keep
records of my blood counts. I also keep track of my
symptoms and procedures. I participate in support groups
and I take the information that I learn there and
the tips and suggestions back to my physician, Dr. Richie. – And so, getting back to
patients who have this, are there guidelines out there? – The National
Comprehensive Cancer Network has a set of patient guidelines
which give information about the disease itself,
about symptoms of the disease, about how the disease is diagnosed and how the disease and
symptoms are managed. You can access these guidelines at a particular website,
nccn.org/patients/mpns. There are other good sources
for patient information, including another website, voicesofmpn.com – And Matt, I’ll ask you,
have these guidelines helped in your scenario? – Yeah, unfortunately, MPNs really are very misunderstood disease. So, the guidelines have
really been a resource for me to become more
informed about my disease and have better conversations
with my physician. – Thank you both so much
for being here today. Matt, I wish you the best
of luck in the future. Dr. Ordon, back to you my friend. – Stay tuned, lots more to come (dramatic music) (applause)