Living with MPN

Today is Myeloproliferative Neoplasms (MPN) Awareness Day. Meet one of our supporters living with MPN. #ConquerBloodCancers #JoinTheFight #BloodCancerAwarenessMonth

September 12 is Myeloproliferative Neoplasms (MPN) Awareness Day. The Leukemia Research Foundation is dedicated to conquering all blood cancers, including the rare and lesser-known blood cancers. We are commemorating MPN Awareness Day by sharing the personal experience of a supporter of the Leukemia Research Foundation with polycythemia vera (PCV) – a form of MPN. Meet Linda Lowe, a nurse from Tampa, Florida. She was happy to speak with us and help us increase awareness of PCV and MPNs, as a nurse who has committed much of her life to supporting the health of others.

“I had gone in for my routine yearly gynecology exam. I thought I was healthy. My doctor wanted me to have a set of labs because I hadn’t had labs done for a while. My hematocrit [the ratio of red blood cells to the total volume of blood] came back incredibly high and they called me and said, ‘you need to see your doctor.’ I went on the Internet and started looking up reasons for very high hematocrit and immediately found out about PCV. The article described symptoms people have and the number one symptom is severe itching.”

Itching was a symptom Linda experienced, which was particularly triggered by showers. She had initially assumed it was due to nothing more than an allergic reaction to something. “I just kept putting lotion on,” she continued. “I didn’t put the two together.” She described her other symptoms. “I was very tired. I thought I had anemia but it was just the opposite.”

“When I went to my primary doctor, I told him my suspicions [about PCV] and gave him my lab values,” Linda recounted. At that appointment, it was discovered that her hematocrit had further elevated. Linda explained that a very high hematocrit means that one’s blood is too thick. This is dangerous because it leads to the risk of serious conditions such as stroke or heart attack. Her primary care physician then sent her to an oncologist. This was a three-month process. Additional testing confirmed her suspicion that she had PCV.

PCV is the result of bone marrow creating too many red blood cells, hence the thickening of the blood. It is one of several forms of MPNs – a category of blood cancers in which there is an overproduction of white or red blood cells or platelets in the bone marrow. PCV is very rare, and like most people, Linda was not familiar with it before her diagnosis. She shared that only two out of every 100,000 people are diagnosed with it.

“They [MPNs and PCV] are types of cancer but are chronic (a slow-progressing form of cancer). People can live very long and healthy life with them, provided they follow their oncologists orders, but there is no cure, at least not yet,” explained Linda. This is primarily the reason why the majority of people do not know about MPNs. “When people hear cancer, they probably think leukemia or tumors. Those are the cancers that get more attention and research, probably because they affect such a larger majority.”

It was difficult right after her diagnosis. Linda went once a week for a therapeutic phlebotomy, during which, a pint of blood is removed to help regulate her blood cell count. As her hematocrit became more normal, she then went every two weeks, then down to four. Fortunately, her condition continued to improve and now, she gets her treatment once every 3 months. “Everyone is different,” Linda clarified. “Some people have to go on a regular basis and some people can go twice a year.” She also takes a baby aspirin daily as a blood thinner.

More information on MPNs can be found on the National Cancer Institute website here.

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Leukemia Research Foundation

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