Rare Disease Day: How Fencing Changed William’s CMML Treatment Plan

February 28 is Rare Disease Day. More than 300 million people live with rare diseases around the world. A rare disease is any disorder that affects less than 200,000 people in the United States. Many blood cancers are considered rare diseases.

Today, HealthTree Foundation is sharing the story of William Pegues, who was diagnosed with high-risk chronic myelomonocytic leukemia (CMML) in 2022. Around 1,100 people are diagnosed with CMML in the United States each year.

Raising awareness and providing educational materials for rare cancers is an important part of HealthTree Foundation’s mission. One in 5 cancers is considered rare.

On Rare Disease Day, organizations around the world are working together to raise awareness about the unique challenges people with rare diseases face and help advocate for equitable access to diagnosis, treatment, and care. 

From fencer to CMML patient

William Pegues is a 79-year-old Vietnam veteran, former architectural specifications writer and associate principal architect, and nationally ranked foil fencer from Reston, Virginia. He has traveled around the country and Canada to fencing events and continues to take weekly lessons with his fencing coach. He is also a Master Gardener and is active in various committees related to architecture and the environment.

In 2021, William was diagnosed with prostate cancer. He was treated with medication and radiation, and by January 2022, he was cancer free. But that wasn’t the end of William’s experience with cancer.

Several months later, his hemoglobin levels began a steady fall. A bone marrow biopsy indicated myelodysplastic syndromes (MDS) and chronic myelomonocytic leukemia (CMML). He was considered high-risk due to his mutations. “My prognosis back then was 15 to 30 months,” William shared with HealthTree. “But here I am, rather happy at 40 months with no significant change from Day 1.”

William has been through 2 rounds of chemotherapy. His first line of treatment was an oral pill version of decitabine that lasted a little over a year before becoming ineffective. After that, his care team added venetoclax (Venclexta), but he experienced too many side effects and stopped after 7 cycles. “Since December 2024, I have had no additional medications, because none are available and there are no clinical trials. I’m still doing relatively well,” William said.

The MDS version of CMML is a rare blood cancer where stem cells don’t mature into healthy red blood cells, white blood cells, or platelets. The immature blood cells, called blasts, don’t work properly and often die quickly. The cancer is characterized by low blood counts, which can cause anemia and thrombocytopenia. Thrombocytopenia is a low platelet count. 

The road to a second opinion came through fencing

William is passionate about fencing. He has been taking classes and competing for more than 30 years. He ranked in the top 8 of his age group before covid caused a pause in competitions. In May 2019, he earned a gold medal in the Canadian/US Challenge. Fencing has been an integral part of William’s retirement years.

When William was first diagnosed, his hematologist required the installation of a port for his chemotherapy. The port location was centered at the primary target for fencing. He sent a distressing email to his fencing coach, explained his diagnosis, and the possibility of having to retire from his favorite sport.

Within an hour, William was discussing the situation with his coach’s sister, a senior researcher in Tampa, Florida. William quickly had a new appointment for a recommended second opinion. His new doctor had significant experience with CMML and prescribed the pill form of chemotherapy. William no longer needed the port.

After this experience, William now has a new motto: “Fencing: so much more than a sport. It can save your life!” 

Living with CMML

William has learned a lot living with CMML. He has discovered several exercises to prevent muscle mass loss that occurs with low activity levels due to fatigue. He uses an exoskeleton designed for training long distance and cross country runners. This lets him walk fairly long distances with the added benefit of movement and breathing without getting too tired.

From his profession, William loves research and discovering new information. This has helped him immensely in his cancer journey. He has found various solutions to some of his side effects and symptoms through his readings. When asked what his recommendations are for people newly diagnosed, William said, “Take an active part in your treatment and appointments with your doctors. Make a list of questions and concerns, no matter how small, to ask your doctor.”

He recommended giving your caregiver access to your list to help you through the process of finding answers. “This journey is all about you,” William said. “Integrate your diagnosis into your life, and take each day as it comes.” 

Living life day by day

William is living with a rare cancer diagnosis while still living his life to the fullest. If you or a loved one has been diagnosed with a rare cancer, these general recommendations can help with your day-to-day life: 

• Stick to a daily routine of exercise, healthy meals, and rest.
• Share your feelings with family or friends to help minimize your fear and anxiety.
• Ask for practical help (errands and meals) from trusted loved ones.
• Talk to your healthcare team about anticipated physical changes, like hair loss.
• Focus on activities that bring meaning to your life and cancel those that don’t help you in your current situation.
• Accept that some days are tough.
• Attend a virtual Gather Community event hosted by HealthTree. During these events, patients have an opportunity to communicate with others who understand their diagnosis and circumstances. Share your journey and help guide meaningful topics for future events.
• Other ways HealthTree Foundation can help

William found the HealthTree Foundation through his extensive research. HealthTree offers people with cancer and their families a community, education, and the tools to navigate their disease. With HealthTree you can:

• Stay up-to-date on the latest blood cancer news.
• Get fast and personalized support with free patient navigators.
• Learn with courses taught by hundreds of disease specialists.
• Securely connect your medical records to: 
• • Understand your labs
  • See available treatment options.
  • Find side effect solutions.
• Participate in research.