Marc: Cutaneous T Cell Lymphoma Survivor
When Marc St. Martin was diagnosed with cutaneous T-cell lymphoma (CTCL) in 2007, he had no way of knowing the impact it would have throughout his family. Over the course of five years, Marc underwent treatment with spot radiation therapy, total skin electron beam therapy, and chemotherapy, all in the hopes of achieving a durable remission. When this course no longer seemed to be working effectively, it was recommended by his dermatologist, Dr. Richard Edelson, Aaron B. and Marguerite Lerner Professor and Chairman of Dermatology at Yale School of Medicine, and an internationally-recognized pioneer in the research and treatment of CTCL, that Marc prepare for a stem cell transplant.
All five of Marc’s siblings agreed to be tested to see if they were a match to be a stem cell donor and in 2012, Marc received a Hematopoietic Stem Cell Transplant (HSCT) using stem cells from his brother John, who was a full 10/10 matched, related donor. Marc commented that the transplant itself was relatively easy and painless, and it took a while before the effects of the transplant manifested. He developed a cytomegalovirus (CMV) infection and became very weak, but less than a year following the transplant, he was disease free and his brother’s stem cells had taken over to fully rebuild his immune system.
“When I was first diagnosed in Florida, I was being treated for what they thought was psoriasis. I had no idea it would turn into a diagnosis of cancer,” said Marc. Marc’s dermatologist at the time, Dr. Anthony Fransway, was instrumental in confirming his diagnosis as CTCL and getting Marc to the right people from day one. “When my doctor suggested I meet with Dr. Richard Edelson at Yale, I knew I was being put into the best hands possible for my care. I didn’t realize at that time just how much I would come to rely on his expertise, and the expertise at Yale, to not only save my life, but to give me a life worth living.”
Part of the reason that it was suggested Marc undergo a transplant was to avoid any further exposure to radiation, which can damage DNA, proteins, and cell membranes leading to cell death and ultimately resulting in painful skin ulcerations. Despite an initially successful procedure, Marc developed tumors in the hip, thigh, and chest regions, and following additional radiation to these sites, Marc noticed his skin breaking down in the treated areas. Although Marc was cured of the cancer, he now found himself suffering from the effects of his past treatments. Dr. Edelson referred him to Deepak Narayan, MBBS, FRCS, Professor of Plastic Surgery at Yale School of Medicine.
Dr. Edelson commented, “Marc had beaten the cancer, but found himself unable to live a full life because of the treatments that had kept him alive. His story is one of hope; not only can you beat cancer, but you don’t have to suffer to be cancer free. There are so many options out there if you have the right team assembled.”
The painful ulcers that developed,The painful ulcers that developed,mainly on Marc’s hips and thighs,required him to take high doses of pain medication just to get through the day.The ulcers did not respond to normal treatment and were deemed unsuitable for free-flap reconstruction. Luckily,Dr. Narayan was able to propose an innovative solution. Knowing Marc’s history and the success of his recent stem cell transplant, Dr. Narayan recommended allogenic fat grafting using fat from his brother John, as a way to alleviate Marc’s pain and restore the skin. This method had never been used before in this way, and would require his brother John to undergo liposuction in order to provide the fat needed.
“There were several factors that had to be considered and discussed beforehand,” said Dr. Narayan. “Because of the multiple previous radiation treatments that Marc had undergone, he had minimal to no fat available to harvest from his own body. We were also concerned that the fat transfer may have adverse effects such as reactivating the CTCL or altering his genetic profile, but after weighing the risks, both Marc and John agreed to undergo the procedure.” Since it was an experimental procedure, and had never been attempted in this fashion before, Dr. Narayan obtained permission from the Human Investigation Committee at Yale before moving forward with the operation.
For Marc, a former pro golfer who still remained active, there was no question as to whether or not he would undergo the procedure. After spending three years on high doses of pain medication, he was ready to try anything. As for his brother John, he jumped at the chance to help his brother once again.
“Cancer is a family affair, and I was more than willing to help in any way that I could,” said John. “I was grateful when I learned that I was the one to match him and that I would have the opportunity to save my brother’s life. When he said he needed me to help relieve the severe pain he was in, I was happy to have the opportunity again.”
In August of 2015, both brothers went in for surgery, not knowing if the procedure would work, but fully trusting in Dr. Narayan and his team. Two years later, Marc is back on the golf course and living the life he knew was possible, but had been out of reach. “I have been in remission for four years now, and am still working to recover fully from the effects of treatment, but I will take that over cancer any day,” said Marc. “I am able to get out and do the things I love. I am so blessed to have been connected with Yale from the start. I had the best of the best to treat my CTCL and then again to treat the radiation induced ulcers. I can’t imagine having gone through this anywhere else. I wouldn’t be where I am today.”
Dr. Narayan commented that this case provides a basis for a standard of care for the treatment of radiation induced ulcers in patients with lymphoid malignancies with stem cell transplants. Not only did it restore the skin to the area, but it also alleviated the chronic neuropathic pain that was interfering with Marc’s life, with none of the adverse effects they were concerned about. “This is a game changer for patients dealing with similar effects,” said Dr. Narayan. “Not having to rely on pain medication gives new hope to patients that have beaten their cancer, but are still dealing with side effects.”
Back on the golf course, Marc and John both agreed that while this experience may have brought them closer together genetically speaking, not much else has changed in their relationship. They have always been a tight-knit family, willing to go above and beyond for each other. “I can never repay what my brother has done for me, and hope that I never have to,” said Marc. “I feel so fortunate to have a family where it wasn’t even a question if they would be tested. John just happened to be the winner of the bunch. I’m still dealing with pain and recurring infections, but it’s a long way from where I was. I credit the team at Yale with giving me my life back twice, and there’s no real way to say thank you for that.”