A patient’s experience with polycythemia vera — a rare blood cancer — led to her becoming an advocate for others to help ease all the nerves and uncertainty that many patients face when they hear they have cancer.
Becoming an advocate for lesser-known cancers including myeloproliferative neoplasms (MPNs) is important to raise awareness and create a sense of community among patients, families and caregivers, but how does one get started?
Lea Fosbenner, a 31-year-old project manager lead in technology and product development in Pittsburgh, took it upon herself to be the person she was searching for when she was first diagnosed with polycythemia vera, a type of MPN, at 28. She shares her experiences with the disease on social media to be a support person for patients who need it.
“One of the reasons that I opened up a little bit more on social media about (polycythemia vera) was because that was one of the first things I did … try to look up things myself and find people,” Fosbenner said. “I know there’s research, and that’s obviously very important, but I wanted to talk to a person that’s going through this too. I wanted to talk to doctors, but I really wanted to (know) what your actual day is like, what are the things you actually deal with.”
Fosbenner thanks her participation in a local support group for opening her eyes to becoming an advocate to not only increase awareness, but to bring a human aspect to polycythemia vera.
Fosbenner received a diagnosis of polycythemia vera in 2018, although doctors originally diagnosed her with essential thrombocythemia. The polycythemia vera diagnosis came when she and her mother sought a second opinion after her original diagnosis. During her second opinion appointment, the doctor said, “You definitely have polycythemia vera.”
This spearheaded her efforts to find a doctor in the Pittsburgh and Philadelphia area, near where her parents live, to determine which treatment plan would be best for her. That ended up being a weekly injection of Pegasys (peginterferon alfa-2a) along with weekly bloodwork monitoring until she became very sick in the fall of 2019. This led to numerous trips to the hospital to figure out what might be wrong, a failed transjugular intrahepatic portosystemic shunt procedure, complications and a stay at the intensive care unit for three weeks, among other issues.
Currently, Fosbenner regularly visits three MPN doctors, in addition to a liver doctor, a primary care provider and an endocrinologist. Although she has some outstanding symptoms, she’s happy to report that she is now in the maintenance phase of treatment.
“It took me definitely a couple years to get there, but I get regular blood work every week (and) injections every week; I give myself Lovenox (enoxaparin sodium), which was another change,” she said. “I have to be on blood thinners for the rest of my life. I have to give myself two shots a day of blood thinners.”
When Fosbenner first received her diagnosis of polycythemia vera, she knew a little bit about the disorder, as she had come across it while researching her original diagnosis of essential thrombocythemia. Since then, she has delved more into the polycythemia vera space, joined a support group led by Jean Diesch and has even become an advocate herself.
“(Jean) made sure I got what I needed in terms of helping me navigate a lot of this because she had probably lived a lot of her life without a diagnosis. (Then) it became more standard practice to look for some of these things and figure out her symptoms,” Fosbenner said. “She really struggled earlier on in her life to get a proper diagnosis and to feel heard (by) doctors. She is definitely my biggest inspiration. I call her my Pittsburgh mom.”
Fosbenner and Diesch bonded over their polycythemia vera experiences and often meet for dinners, conferences and fundraising events.
“She’s really helped me find my voice in being an advocate,” Fosbenner said. “It’s great to have a role model like her. That’s setting the standard. … I wouldn’t be here without her.”
Fosbenner is closely connected with the Eastern Great Lakes chapter of the Leukemia & Lymphoma Society, including their Light the Night event at which she and her support group fundraise for the cause. In addition, she works with the MPN Research Foundation, attends blood cancer conferences and participates in Facebook support groups, where patients discuss recent data, articles they have read and other pertinent information. She also posts about her journey with polycythemia vera on social media, including Instagram.
When Fosbenner started looking for people to connect with online about the disease, she said it was difficult to find anyone as it is such a limited space. Through sharing her story, she wants people to know about polycythemia vera because it may be able to help someone else along the way. For example, her friend’s father was diagnosed with the disease and the friend referred him to Fosbenner so he can learn more about the patient experience, what doctors she goes to and symptoms she experiences.
“To be able to talk to someone immediately would definitely help ease all of those nerves and uncertainty that you have when you hear the word cancer,” Fosbenner said.
Since she has started sharing her experience on social media, she has received messages from people who were recently diagnosed with polycythemia vera and want to ask questions about the disorder.
“I’m always open and willing to talk to anyone about (polycythemia vera),” Fosbenner said. “I’m not going to pretend to give actual medical advice, but I can at least share my story. I can share things that I’ve been through, the things that maybe I would have done a little bit differently or wish I had done. It’s definitely nice to connect to people to bring that human aspect to it because it can get very technical.”
She offered advice for patients with polycythemia vera (or another cancer type) who are interested in entering the advocacy space, including finding a support group like she did through Diesch. Several support groups have opened up for patients outside of their geographical areas, with some meetings being held virtually because of the COVID-19 pandemic. Patients can also ask their doctors about support groups.
“You have friends and your family that are caregivers and your support system, but there’s definitely something different about being able to talk to someone that is going through the exact same thing you are going through or … a different variation of it,” Fosbenner said.
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