Emily Dumler, mother of three, found blood in her stool one day in August of 2013, called her doctor, and went to urgent care. She wound up being immediately admitted to the hospital with an extremely low blood platelet count, and only obtained her diagnosis of non-Hodgkin’s lymphoma after a stay of 43 days. She began chemotherapy, but relapsed seven months later, and moved on to the next line of treatment: a stem cell transplant.
“I traveled three states away and spent three months having an auto stem cell transplant with my own cells,” Emily said. “But I found out shortly after that the treatment was not successful. At that point, they gave me six months to live.”
Emily’s children were four, six, and eight years old at the time. After her doctor delivered the hard news, he told her about a Leukemia and Lymphoma Society-funded clinical trial for a brand-new treatment called CAR T-cell therapy, an immunotherapy which super-charges certain white blood cells to kill the patient’s cancer cells. Together, Emily and her doctor searched the country for a program that could take her. A few months later, Emily became the third patient in the world to undergo the procedure that involved removing her T-cells, activating them to fight cancer, and re-injecting them back into her body.
Emily spoke on the phone with HealthCentral about her diagnosis and the new treatment that saved her life.
HealthCentral (HC): What is CAR T-cell therapy?
Emily: In a process called pheresis they took blood from my body and removed the T-cells. Then they shipped them off to a lab in California where they were re-engineered. I called that bootcamp. At bootcamp they got these changed T-cell receptors that were activated to attack tumor cells. Then they shipped those back, and in a very quick infusion I received these new receptor-transformed T cells.
HC: What was the infusion of CAR T-cells like?
Emily: It only took about five to ten minutes to receive the CAR T-cell therapy. And then I was watched closely because I was such an early patient in the trial. I was in the hospital for nine days after my infusion so they could monitor me. I did undergo the expected side effect called cytokine release. Basically, it was like a storm in my body where these T-cells were wreaking havoc on the cancer. It's similar to having a really bad flu and you have no energy, you have no appetite, and you don't feel well. But compared to some of the other forms of treatment I've had it was actually easier.
HC: Was the treatment successful?
Emily: Within one month of receiving my T-cells I was considered to be in remission. That was when the first scan was, but they actually think I may have been in remission a week or even days after the infusion. It happened very quickly. And here I am three years later, and I'm still in remission.
HC: What do you wish more people knew about lymphoma?
Emily: Lymphoma is not just one disease, and it is incredibly important that patients understand what type of lymphoma they have. They need to get the diagnosis right the first time. If you’re in a remote location, the pathologist who reads the slides may not see a lot of lymphomas, and it's really important not that you go to another doctor to get a second opinion, but that your slides go to another doctor to get a second opinion.
It used to not matter what type of lymphoma you had because everyone got the same cocktail of therapies, but that's just not the case anymore. And the more we know about the diagnosis, the more targeted doctors can be with the right therapies for patients. And since we have a whole bunch of new exciting therapies and are going to have more over the next decade, it's important that you get your diagnosis correct so your doctor can get you the therapy that's most likely to provide you benefit.
HC: What does your life look like today?
Emily: My kids are now eight, ten, and twelve. And if you saw me, you would never think I had battled cancer and that I had done so for years. I battled it for years. I was down to 88 pounds and now I'm just living life like this is all behind me. But at the same time, it's not behind me because it's become my mission to be involved in fundraising for research. So my life is very full. I work full time, I'm a mother, a very busy mother, but I also help fundraise for the Leukemia and Lymphoma Society. I just think it's important for me to give back to the organization I consider to be responsible for me being here today.