A Roadmap for Patients with a Rare Blood Cancer

Ten years ago, when interior designer Thom Filicia’s brother Jules was diagnosed with myelofibrosis, a rare blood cancer, the former Queer Eye for the Straight Guy star provided a life-saving bone marrow transplant to save him.

At the time, there was little information about the condition that was easily available to newly diagnosed patients and their families. “It was a pretty lonely, uninformed space to be in, and it was hard to get information,” said Filicia.

Jules, an art director in Manhattan now in his early 50s, is healthy and active today and doing well, but his older brother is using his celebrity to take up the cause and promote Mapping Myelofibrosis, a new resource created by pharmaceutical giant GSK to help patients get easy access to information about the condition and understand the journey they are on.

“That’s what was missing for me and what was missing for my brother,” said Filicia. “It’s an amazing resource for doctors, for patients, for the support groups. It didn’t exist before, so I’m happy that it’s here.”

Myelofibrosis (MF) affects nearly 25,000 people in the United States and is part of a larger group of blood cancers that affect the bone marrow called myeloproliferative neoplasms. In people with MF, blood cells may not be produced in a typical way, causing inflammation and scarring of the bone marrow, which is called fibrosis. The signs and symptoms of MF may include severe low blood counts or anemia, enlarged spleen, low blood platelets, and other symptoms.

Because MF is an extremely heterogeneous disease, symptoms vary widely and they can end up getting diagnosed because of abnormal counts on a routine blood test, abdominal pain, fevers, chills, night sweats, bone pain, or weight loss.

“One patient might have some of the symptoms, someone else might not. And we know that up to maybe 25 percent of patients may not have a clear symptom that they’re presenting with. It may be something that’s relatively mild on the symptom burden,” said Andrew Kuykendall, physician at Moffitt Cancer Center in Tampa, Florida. “Regardless of that, all these patients with varying symptoms end up with the same diagnosis. That’s what becomes very challenging for patients is you have this extremely rare disease with widely variable symptoms, and yet you’re supposed to try to understand your disease process, but the information you’re getting may be not necessarily applicable to your disease.

Kuykendall said transplant still remains an integral treatment option and remain the only curative option for the disease, but that many other therapies today can help to improve patient’s quality of life, improve their fitness, improve even a patient’s candidacy for a transplant.

The website offers a range of resources, and walks people from symptom, to diagnosis, to treatments. People can learn about the disease, hear stories, hear from physicians who are treating these patients and arm them with information they need to get the most out of a discussion with their physician.

One reflection of the complexity of the disease and what newly diagnosed patients might have ahead in their journey is a section on identifying your care team.

“It takes a village to take care of people with chronic illnesses, chronic blood diseases, chronic cancers,” said Kuykendall. “This is a journey.”