Finding Purpose Amid Health Challenges
- “Queer Eye for the Straight Guy” star and interior designer Thom Filicia, 54, marks the ten-year milestone of giving a life-saving bone marrow transplant to his brother battling myelofibrosis (MF), a rare type of blood cancer in which scar tissues build up in the bone marrow.
- Filicia has partnered with biopharma company GSK to raise awareness about the disease and offer guidance to people impacted by it.
- Symptoms related to myelofibrosis include fatigue, pain, and easy bruising/bleeding. Luckily, doctors have a few treatment approaches to improve quality of life, including oral medications up to a bone marrow transplant.
- A stem cell transplant replaces your bone marrow with healthy donor bone marrow. Some patients are eligible to undergo a potentially curative transplant, but rigorous treatment, including intensive chemo, makes it not possible for all patients.
Interior designer and “Queer Eye for the Straight Guy” star Thom Filicia’s life of fame and décor took a drastic turn roughly a decade ago when he gave his brother Jules, a life-saving bone marrow transplant to help treat his myelofibrosis diagnosis.
Myelofibrosis (MF) is a rare type of bone marrow cancer that can cause scarring in the bone marrow and anemia, which occurs when the body does not have enough healthy red blood cells.Read More
The partnership came to SurvivorNet to further elevate awareness about MF. SurvivorNet supports the initiative and has added resources for patients from experts and medically reviewed material to help MF warriors on their journeys.
Filicia said, “When I was explaining to people what we were going through, they really didn’t know what it was. We were all in the dark. That is why I’ve teamed up with GSK and the Mapping Myelofibrosis initiative to get all of the things that I wish we had at that time – educational tools, resources, stories from doctors and patients, and a real community so you can understand where you are and how you can get to where you need to be.”
Filicia says his introduction to myelofibrosis came about after Jules was diagnosed and needed a bone marrow transplant. He recalls how difficult and scary it was when confronted with the rare disease.
“It was a very scary moment, and we had to move quickly,” Filicia said.
Jules’ diagnosis came about while spending time with his two daughters. While paddleboarding, he managed to cut his foot and needed additional treatment to stop the bleeding. While at the hospital, he learned he was facing a diagnosis.
Myelofibrosis is diagnosed after the patient undergoes a series of tests. These tests may include blood labs, symptom assessment, and a bone marrow biopsy.
“A bone marrow biopsy is a procedure that cancer and blood doctors perform, in which a needle is inserted in the bone to pull out a piece of the bone and the bone marrow that is inside of it in order to examine it and run special tests on it,” Dr. Abdulraheem Yacoub, a hematologist at University of Kansas Medical Center, tells SurvivorNet.
“Those special tests are required to confirm the diagnosis,” Dr. Yacoub adds.
Treatment options are then discussed after test results help doctors determine the best course of treatment. Treatment options may include some Food and Drug Administration-approved oral medications up to a bone marrow transplant.
It’s important to know that some myelofibrosis patients have no, or very few, symptoms from the disease and do not require immediate treatment, while others may require an aggressive approach. For those who need treatment, a bone marrow transplant could be a potential cure for myelofibrosis. However, this is a very aggressive treatment; not all patients can receive it.
“Ten years ago, when my brother called me to tell me that he was diagnosed with myelofibrosis, the reality was I didn’t know what it was or enough about it to have a real definitive sort of emotional response. I was just confused,” Filicia said.
One thing he did know was he loved his brother, and he knew his brother was a fantastic husband and father.
“I didn’t really stop to think about anything other than, let’s do this. I think as I was going into it, the fear was that it is scary because many things can happen, and you will be part of that,” Filicia said.
Finding a bone marrow transplant match is often a grueling process, especially if close relatives are not great matches.
“When it is the right choice, it certainly is something we want to be able to do for patients, and it does offer a potential for cure, but at the same time, I would say 80 to 85 percent of patients are treated in a non-transplant mechanism,” Dr. Andrew Kuykendall a clinical researcher at Moffitt Cancer Center in Tampa, Florida tells SurvivorNet.
Helping Patients and Families with Myelofibrosis
Bone Marrow Transplant Process
“I think there is somewhat of a misconception with bone marrow transplant is that they’re going to kind dig around in someone’s bone marrow and get some marrow and give that to you. In reality, the first step is to identify the right patient for a transplant, a high-risk patient. If a transplant is something we want to pursue, then we have to find a suitable donor,” Dr. Kuykendall says.
“We love having perfect matches. Sibling matches are great, obviously,” Dr. Kuykendall adds.
WATCH: What Happens After a Stem Cell Transplant.
“A bone marrow transplant is a therapy where your bone marrow and your blood cells are completely replaced by someone else’s bone marrow cells and blood cells,” Dr. Jun Choi, a hematologist-oncologist at NYU Langone’s Perlmutter Cancer Center, explains to SurvivorNet.
“In order to do that, you have to be fit and relatively young,” Dr. Choi adds.
Items to Consider Before Finding the ‘Perfect Match’:
- Patients over the age of 70 may be ineligible for a transplant. However, being otherwise healthy and having decent physical functioning is more important than age.
- Liver disease, heart conditions, or kidney disease can make it dangerous to receive a transplant.
What Happens During a Bone Marrow Transplant:
- Patients are given a high dose of chemotherapy “to kill all your blood cells and bone marrow cells.”
Dr. Javier Pinilla, head of the Lymphoma Section at Moffitt Cancer Center, tells SurvivorNet that because patients receive such a high dosage of chemo, they may experience serious side effects from low blood count to infections. For this reason, patients are usually hospitalized for a couple of weeks.
- New healthy cells are infused to replace the damaged cells wiped out by the chemotherapy. A central line (or central venous catheter) completes the infusion. It’s like a peripheral intravenous (IV) line but is typically much longer than a regular IV and goes up to a vein near or inside the heart. The transplanted donor stem cell will enter the body through the blood and grow into healthy new blood cells. You will be awake the entire time, and the process is not painful.
- The new healthy cells also create a new immune system, which will continue to surveil your body for signs of cancer and kill it at an early stage. During recovery, your cells start to engraft or grow and make new blood cells. It usually takes 2 to 6 weeks to begin seeing normal blood counts. During the first few weeks, while you are in the hospital, the transplant team will visit you regularly and watch closely for the following side effects of stem cell transplantation.
“This is a relatively intense therapy, and you need to be pretty strong to tolerate this,” says Dr. Choi.
After the procedure, patients will be immunocompromised for at least the first six weeks. Patients are at high risk of getting severe infections during this critical period.
Filicia says the decision was easy after learning more about MF and how a bone marrow transplant will help his brother, sister-in-law, and two nieces.
“What I discovered from my point of view was something that sounded scary really wasn’t that scary. Something that sounded like it was going to be painful or difficult was neither. And I was ready to go, and that’s how it was through my experience, that’s what it was,” Filicia said of the bone marrow transplant procedure.
Fast forward ten years later, Filicia says his brother is “happy and healthy.”
“He is doing incredibly well. I was on the phone with him today. He was very excited about the new windows in his house in the Hamptons. So, that conversation is very different than the conversation we were having 10 years ago.”
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The GSK partnership with Filicia aims to educate more people about the disease and arm patients battling MF with more information to have substantive conversations about their diagnosis with their doctor.
“No two patients are the same. And I think that can lead to situations as Thom described with his brother. MappingMF.com gives you a place you can go to get and acquire those resources to empower you and put you in charge of your healthcare so you can ask the right questions, get the right information, make the right decision for you and your family. It’s a resource not just for patients but the support group around those patients. So if you know someone effected by this disease it’s a place you can go to educate yourself so you can be a better helper or supporter of that patient. And also something physicians can go to if they want to get more information as well, ” Dr. Kuykendall said.
Better Understanding Primary Myelofibrosis
Primary myelofibrosis (PMF) is a type of cancer that falls under the category of myeloproliferative neoplasms (MPNs). Myelofibrosis can develop on its own, which is considered “primary.” However, the Leukemia and Lymphoma Society explains that it can also develop because of another bone marrow disease called secondary MF.
“Myelofibrosis is when your bone marrow is making too many fiber cells and preventing the bone marrow from making normal blood cells,” Dr. Adrienne Phillips, a hematologist medical oncologist at Weill Cornell Medicine, tells SurvivorNet.
In the early stages of PMF, you may not have any symptoms; a routine blood test at your doctor’s office may show abnormalities in your hemoglobin, white blood cells, and platelets. Later in the course of the disease, you may feel a dull pain in the belly as your spleen grows, have night sweats, or feel more tired than usual. Increasing symptoms can sometimes be a sign of the disease becoming more aggressive.
A blood test and a bone marrow biopsy help confirm a diagnosis.