Tim Richardson lost his head-full of jet black braids to chemotherapy. A stem cell transplant — of his own cells — gave him a second chance at life and the chance to grow them back.
“But I haven’t decided if I’ll grow the braids back or not,” said Richardson, 36, from Ansonville, N.C., in Anson County, as he rubbed the fuzz growing back in. “The important thing is I’m here to have a choice.”
The chemotherapy that took his hair was in prep for Tim to receive a bone marrow stem cell transplant on July 19 for the treatment of POEMS syndrome, an exceptionally rare condition characterized by the presence of a blood disorder (usually multiple myeloma), peripheral nerve damage, skin abnormalities and adverse effects on many other organ systems.
Untreated, the disease is progressive and can be fatal, but the symptoms can improve if the blood disorder is successfully treated. For Tim, they did.
Tim’s diagnosis remained elusive for more than a year after he presented with numbness and pain in his feet that were presumed side effects of diabetes. By the time he came to UNC Hospitals, he needed a wheelchair to get from the parking deck to the clinic. He lost 70 pounds over the year, but at 6-2 and 280 pounds, he had some reserves to draw on. Severe leg pain turned out to be a bone lesion in his left femur, and a rod was surgically placed to ward off a fracture. The biopsy of the lesion confirmed POEMS syndrome.
“Most of the work-up of these symptoms was done by Tim’s local oncology team in Charlotte,” said Peter Voorhees, MD, assistant professor at the UNC School of Medicine and a member of the UNC Lineberger Comprehensive Cancer Center and the myeloma leader of Tim’s health care team. “They did a great job of doing all the necessary tests, which allowed us to confirm the diagnosis quickly and recommend a treatment program.”
Tim was treated with lenalidomide (Revlimid) and dexamethasone, a chemotherapy regimen commonly used to treat multiple myeloma. However, an autologous bone marrow stem cell transplant — meaning the cells were donated by Tim himself — was the best option for keeping his POEMS syndrome under control in the long run, Dr. Voorhees said.
“High dose melphalan chemotherapy is effective for the treatment of myeloma and POEMS syndrome, but can cause irreversible bone marrow damage without stem cell rescue.”
“High dose melphalan chemotherapy is effective for the treatment of myeloma and POEMS syndrome, but can cause irreversible bone marrow damage without stem cell rescue,” Dr. Voorhees said. “In Tim’s case, his bone marrow stem cells were harvested in June. After he recovered from the harvesting, he was given a high dose of melphalan chemotherapy. His donated cells–which were not touched by chemotherapy–were then transplanted back into his body. And those cells know exactly where to go. They grow, divide and make new blood cells.
“The vast majority of POEMS patients have significant clinical benefit with this approach, and Tim has responded dramatically,” Dr. Voorhees said. “Between the initial chemotherapy program and the transplant, the neuropathy is significantly better, his functional status has improved and he’s regained weight. We strongly suspect he’s going to have a strong and durable remission lasting many years.”
Always a positive-thinker and never one to worry, Tim is pleased with his progress, too. Although it’s unlikely the former high school football player will be able to run anytime soon, his physical challenge these days is walking from his house to his sister Mary Ann’s house—a distance of between two to three football fields. And he just got permission to begin lifting 15-pound weights in mid-September.
“My weight is up to an all-time high of 307, due to my improved appetite and that I haven’t been able to work out,” Tim said. “It’s more than I need to be carrying. I try to keep moving, working on my balance. I can’t stand on my tip-toes to reach things on top of the ‘fridge. I’ve never needed much sleep and still don’t.”
“My weight is up to an all-time high of 307, due to my improved appetite and that I haven’t been able to work out.”
Tim says the worst part about the entire transplant experience was that once the harvested cells were transplanted back into his body, he smelled like garlic. “I had been warned that could happen, and I didn’t like it when it did,” Tim said. “I felt like I constantly needed a bath.”
He spent two weeks post-transplant in the hospital and was then released to SECU Family House, the 40-bedroom hospital hospitality house minutes away from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers. His 36th birthday was August 6, and he returned home on Aug. 8.
“Family House is really nice and everyone is so friendly and helpful, just like everyone at the hospital,” Tim said. “I’ve met people from a lot of different places and discovered we have a lot in common.”
Tim can’t return to his job as a floor supervisor at a chicken processing plant because it requires nearly constant standing. “I’m not lazy and I will need to be retrained, but I don’t know for what job yet,” he said. “But I’m not worried. It will work out.”
In the meantime, he’s got time to decide on braids or no braids.
“Funny thing, when I had a head-full of braids, my head didn’t sweat,” Tim said. “Now, with just a little bit of fuzz, my head gets hot and sweats. I don’t know what that’s about, but I’m taking it one day at a time.”