What Is This Rare Blood Cancer That Can Cause the Blood to Thicken?

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Playing Rare Blood Cancers: What You Need to Know

This year an estimated 1.7 million individuals in the U.S. will be diagnosed with some form of cancer. The Doctors are joined by Matt, a 55-year-old man, who was diagnosed with a rare cancer that caused his blood to literally thicken. Matt shares that in 2005 while prepping for a surgery, a doctor expressed concern over his bloodwork. Over the next two months after recovering from his surgery, Matt suffered at least two heart attacks. He was referred to a hematologist. 

Matt was then given a bone marrow test which came back positive for Polycythemia vera, or PV, a rare blood cancer. Dr. Travis is joined by Matt and his physician Dr. Ellen Ritchie, an Incyte consultant from Weill Cornell Medicine at New York Presbyterian Hospital, to discuss this type of cancer that many, like Matt upon diagnosis, have never heard of.

Dr. Ritchie explains that PV is a myeloproliferative neoplasm or MPN, a closely related group of rare blood cancers in which the bone marrow functions abnormally. The bone marrow is where the body’s blood cells are made. MPNs are a rare cancer affecting approximately 200,000 patients in the U.S. Patients who develop a specific gene mutation are at risk of developing PV. While the majority of patients with PV are over 60 years old, it can occur at any age. According to an article in “Leukemia & Lymphoma,” PV is one of the most prevalent types of MPN.

Dr. Travis explains when you have PV, the body overproduces blood cells causing the blood to thicken. Thickening blood could lead to clots, which can block blood flow through the arteries and the veins. 

Dr. Ritchie explains in Matt’s case, he had a particular complication early on in his diagnosis, a heart attack. People with PV could also have a stroke. Cardiovascular disease is a real risk factor of having PV along with blood clots and cardiovascular complications. “We are very careful when we manage patients to manage the disease itself as well as cardiovascular risk factors,” Dr. Ritchie says.

Dr. Ritchie explains part of good medical care is controlling the symptoms of PV that can advance over time. These symptoms may include:

  • Fatigue
  • Concentration problems
  • Feeling full after eating small amounts
  • Itching
  • Stomach pains
  • Night sweats

Matt shares his symptoms included a red complexion and bleeding gums and some symptoms he experienced long before he was diagnosed. 

Like Matt, most patients have never heard of MPNs, including PV. Dr. Ritchie wants to raise awareness about MPNs, including PV. “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,” she explains.

Matt offers his advice to those affected, saying, “I think it’s really important that a patient seek out an MPN expert [doctor]. It’s also very important that they empower themselves with information about the disease.” Matt empowers himself by keeping records of his blood counts, tracking his symptoms and procedures, and also, participating in patient support groups. From attending those groups, he can then can bring questions or tips he may have learned to his doctor to discuss.

Dr. Travis asks if there are guidelines for these patients. Dr. Ritchie explains the National Comprehensive Cancer Network, or NCCN, has a set of patient guidelines which give information about the disease itself, about symptoms, diagnosis, disease monitoring and management. You can access the patient guidelines at www.nccn.org/patients/mpns. Another good website with background information about MPNs and PV is www.voicesofmpn.com

Matt says these guidelines have helped in his situation, explaining, “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.”

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