When Roslyn George started to feel pain under her ribs towards the end of 2024, she never would have guessed it was cancer. Her late mother, who lived with her at the time, had been diagnosed with dementia, and the growing challenges of caregiving were taking a physical and emotional toll. Thinking her body was telling her to take a break, Roslyn put her mother into respite care in December so she could recharge.
But things only got worse. By the start of the new year, Roslyn was exhausted, in pain, and losing weight. Increasingly worried about a swollen lymph node, Roslyn booked a primary care appointment at Boston Medical Center for January 3, 2025. She felt so ill by that point that she walked into the appointment and said, "I need to go to the emergency room." She was transferred immediately and later admitted to BMC for testing.
Expert Care for a Rare Cancer
Her test results confirmed that Roslyn had adult T-cell leukemia/lymphoma (ATLL), a rare cancer caused by human T-cell lymphotropic virus type 1 (HTLV-1), a virus that is common in the Caribbean. HTLV-1 is commonly passed through breastfeeding, so Roslyn was likely living with the virus unknowingly for most of her life before it began causing symptoms.
"No one could believe it," says Roslyn, who grew up on the island of Saint Vincent and has always been known by friends and family for her healthy lifestyle. "But I said, 'Yes, healthy people do get sick.'"
Not only is ATLL highly unusual, but Roslyn’s case became even more complex when doctors discovered she had a fungal infection in her lymph node that was causing the large mass in her neck. Fortunately, Roslyn was in the right place. She was treated by Dr. Mark Sloan and Dr. Maya Srinivasan—both experts in treating and advancing research for ATLL—with a specialized chemotherapy regimen pioneered at BMC.
Drs. Sloan and Srinivasan also collaborated with the Center for Infectious Diseases to treat Roslyn’s fungal infection at the same time. “My two main doctors are amazing. I like that they don’t beat around the bush because they know I’m a straight shooter,” she says. “They’re always more concerned about me than I am.”
Hobbies That Help Heal
Even while undergoing chemotherapy, Roslyn stayed close to the things that bring her joy, like gardening and designing and sewing custom clothing. "The medication is not the only thing I need to cure me. I've always been a hustler. I like to keep moving, keep working, keep creating. I need all these things to help me heal," she says. "My sewing machine is always going, and I grow cucumbers, green beans, tomatoes, oregano, sage, parsley, basil, cantaloupes, squash…my kitchen looks like a farmer's market! But gardening isn't just food for me-it's spiritual."
A Setback and a Novel Treatment
With the fungal infection gone and five rounds of chemo under her belt, Roslyn was feeling good-until a scan showed that she had a small amount of cancer left in her bone marrow. She would need to be completely cancer-free to receive the final step of her treatment: a life-saving bone marrow transplant. "I was not disappointed, not angry, not optimistic-just kind of neutral," she explains. "In our culture, we don't worry. What will be will be."
After a sixth round of chemo and another scan, Roslyn learned that her cancer was no longer responding to the chemo, but that Drs. Sloan and Srinivasan had a plan. They got special permission from the FDA to start Roslyn on a novel medicine called Valametostat, which was showing promising results for patients with difficult-to-treat cancers.
In June, Roslyn became one of the first people in the country to receive Valametostat. She is responding well to treatment and is hopeful she will soon be preparing for her bone marrow transplant. Her donor will be her 26-year-old son, Josaun. "When I told him what was going on, he immediately said, 'I will do it.'"
As Roslyn enters what she hopes will be the final stage of her treatment, Drs. Sloan and Srinivasan continue advancing their research on HTLV-1 and HTLL to improve care and give hope to more patients like Roslyn.
Roslyn’s Tips for Patients
- Bring a buddy to appointments. “Even if they’re just on the phone, you need someone who doesn’t judge you and is a good listener to help keep track of your health. When these results come at you, you don’t know what state of mind you’ll be in, and you may not remember anything.”
- Rest without guilt. “When I would finish a chemo treatment, I had low energy. So, I wouldn’t do chores, I would just stay in bed to recoup my energy. Relaxing at home helped me a lot.”
- Stay nourished. “I used beets, callaloo, carrots, apples, pumpkin, lentils, and peas to make juices and soups from my garden that kept me strong and hydrated through chemo. Food is medicine.”
- Share your story with your care team. “I believe that we need to open up to our doctors so they can know more about us besides our health. For treatment to be successful, they need to really understand you.”