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Mapping Myelofibrosis: A New Resource for a Rare Blood Cancer

December 2023 Vol 9 No 6

You may know Thom Filicia as an interior designer and original member of the Fab 5 from Queer Eye for the Straight Guy. You may not know that he’s also an advocate working to raise awareness of myelofibrosis (MF). When his brother was diagnosed with the rare blood cancer 10 years ago, Thom donated his bone marrow for his brother’s transplant.

Today, Thom has partnered with GSK and Andrew Kuykendall, MD, of Moffitt Cancer Center on the health initiative Mapping Myelofibrosis to help people impacted by MF.

I had the opportunity to talk with Thom and Dr Kuykendall about MF, resources available through the Mapping Myelofibrosis program, and their advice to those newly diagnosed. What follows is our thoughtful exchange.

Thom, your experience with MF began when your brother was diagnosed 10 years ago. What can you tell us about the educational resources available to you at that time?

Yes, when my brother was diagnosed, we didn’t know what myelofibrosis was or what the treatment options were, and there were very few resources available to us outside of what the doctors told us. The lack of information was probably the scariest part for us, and that made the diagnosis difficult to navigate.

You were involved in your brother’s journey not just as a caring family member but as a bone marrow donor. Can you tell us about that experience?

Luckily, my bone marrow was a match for my brother; in fact, I wasn’t just a match, but a perfect match. So, we moved quickly and made the decision to move forward with the transplant. Even though we were terrified, we just tried to navigate this thing together. There were a lot of emotions that we didn’t have a chance to deal with because we were so focused on the task at hand, and I felt I had to be in the right head space not only for myself, but for my brother—the person dealing with this complex and rare blood disease.

Dr Kuykendall, can you tell us about the typical patient journey to a diagnosis of MF?

Absolutely. It’s important to realize there isn’t a typical patient journey. Myelofibrosis presents very differently from person to person. Some people may receive a diagnosis through a routine checkup with abnormal blood counts that were further investigated and led to a bone marrow biopsy. Someone else may have been feeling poorly for a while, fevers, chills, night sweats, bone pain, weight loss, fatigue, things that could be attributed to many other diseases that eventually led to blood work. Others may present with abdominal pain and an enlarged spleen. Still others may not have many symptoms at all.

Although there’s no typical patient journey, there are typical parts to the journey. Most people, once diagnosed, share the common feelings of helplessness and wondering what they should do next. Most do not have as much information as they’d like. And, frankly, it can be hard to find reliable information. That’s exactly what our initiative mappingmf.com offers. It’s a resource that anyone impacted by MF can visit for reliable information about MF. They will hear from other patients and physicians and find groups that are working on research. The website is designed to put good information at your fingertips and lets people know that they’re not alone in this fight.

Thank you, Dr Kuykendall. Thom, can you talk about the Mapping Myelofibrosis program and the program goals?

Learn more about Mapping Myelofibrosis at mappingmf.com.

I’ve teamed up with GSK to offer Mapping Myelofibrosis, or mappingmf.com, because I wish it existed when my brother was going through his diagnosis. It would have helped tremendously to have these resources, stories, tools, and a community.

The goals are simple; we want to give people an understanding of MF, what it is, how it presents itself, and all the possible treatment journeys. My brother required a bone marrow transplant, but that may not be what another person needs. We believe the more information you have, the more understanding you gain, the better off you’ll be; mappingmf.com is a place where you will read other people’s stories, experience a real community, and know that there’s hope.

You’re not in this situation all by yourself. You can visit us at mappingmf.com, or you can go to Mapping Myelofibrosis on Facebook.

Dr Kuykendall, what are the benefits of the mappingmf.com site?

I agree with Thom that hearing stories from other patients is extremely helpful, Thom’s story being one of them. Because this is such a rare disease, bringing a community of patients and healthcare professionals together online is so important.

This is a great place to have questions answered; questions like, What should I be doing to make myself healthier? What should I be eating? What treatments are out there? Are there advocacy groups? Are there research foundations? This website has all of these resources, all of which will benefit anyone impacted by MF.

Thom, what advice do you have for someone newly diagnosed with MF?

The 2 most important things you can do are to get the best information you can and build a really great team of people who will be your support system; from your doctors to family, building a community is important. Be hopeful, be strong, have the right information, and the right team. I hope mappingmf.com will be part of that journey for anyone newly diagnosed with MF.

Any advice for someone newly diagnosed, Dr Kuykendall?

First, take a breath. Then bring in those people who are closest to you to have them share in this journey. I’ll also add, as with any rare disease, I always encourage patients to get an expert opinion; mappingmf.com connects you to those experts.

Thom, how is your brother doing today?

I’m happy to say my brother is doing well! He is healthy and happy.

About the Interviewees

Thom Filicia is an American interior designer known for his role as an interior design expert on the American television program Queer Eye for the Straight Guy. He is also a coauthor of a book based on the show.

Andrew Kuykendall, MD, is an assistant member at Moffitt Cancer Center in the Department of Malignant Hematology. He earned his MD from the University of Florida College of Medicine and completed an internal medicine residency at the University of South Florida and a subsequent hematology and medical oncology fellowship at Moffitt Cancer Center/University of South Florida. He primarily focuses his clinical and research efforts on myeloproliferative neoplasms.

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