“Hands down, I’m alive today because of clinical trials”
By Cody Barnett, MPH, MRA Director of Communications & Patient Engagement | 15 November 2017 | Melanoma Stories, Science
Jamie Goldfarb didn’t think of herself as having cancer. Yes, she had been diagnosed with Stage II melanoma four years earlier and Stage III the following year, but the surgeries to remove it had been successful. The PET scans that followed had been normal. This wasn’t supposed to be happening. Jamie was now a tired new mom with an eleven-week old baby and she was ready to get back to work. But, her world would turn upside down when she learned that not only was melanoma back, but it had progressed to Stage IV and spread to her liver and pancreas.
“Just like in every good cancer movie where you see the person sitting behind the desk, the doctor gives the news, and the person’s mind goes ‘wah wah wahs.’ It really does feel like that. There was a while where I desperately wanted to believe it was anything else. It was just surreal. All of my worries and fears at the time were about going back to work and leaving my newborn in the care of someone else, and all of a sudden, I had cancer. It was a lot all at once,” says Jamie.
Jamie was afraid, but was also determined to get through this, and knew clinical trials were a great option for many patients. At that time, both she and her husband were working for a company that did recruitment for clinical trials. They both knew that traditional treatments like chemotherapy weren’t producing great results for people with melanoma, so it wasn’t a question of ‘if clinical trials were the right fit,’ it was a question of ‘which clinical trial.’
After consulting with key opinion leaders in the melanoma space, such as Dr. Steven Rosenberg, chief of the surgery branch at the National Cancer Institute and member of the MRA Scientific Advisory Panel, the feedback was unanimous– if she was eligible for the TIL trial at NCI, that was her best bet.
TILs, or tumor-infiltrating lymphocytes, are the white blood cells that have successfully fought their way into the tumor. One theory is that these TILs are insufficient in number and/or otherwise incapable of fully reacting to the tumor as a foreign invader to be killed. TIL therapy works by harvesting TILs from a patient’s tumor, expanding their numbers greatly in a lab, and then administering these lab-grown TILs back into the patient’s body. These infused cells, already primed to successfully swarm the cancer, are then further activated with high-dose interleukin-2 (IL-2). Jamie’s trial used a variant of this protocol, where instead of receiving high-dose IL-2, her lab-grown cells were engineered to express IL-12 when they came into contact with the tumor. Researchers are continually studying new protocols to get the most benefit from TIL therapy alone or in combination with other therapies.
But would it work for Jamie? The treatment, pioneered by Dr. Rosenberg at NCI, was showing promising results in over 50% patients – but not all. For the first few months, not only was it not working, but her tumors were actually getting larger.
Then, four months after her TIL treatment and just before they moved on to other treatment approaches, everything started to change. She came down with an upper respiratory infection – and the good news – she could visibly feel her tumors shrinking. Scan-after-scan and month-after-month she continued to demonstrate marked improvement. In fact, by 2014 – just two years after her TIL treatment – she had been declared disease free.
“I would not be alive today, I mean hands down, without clinical trials. Stage IV melanoma had a 14% five-year survival rate at that time. There were so few treatments. TIL treatment saved my life,” says Jamie.
Today, Jamie is committed to making cancer patients understand the benefit of clinical trials, especially those with melanoma. She speaks at conferences, volunteers with melanoma organizations, and educates anyone she can about the benefit of clinical trials. “Too many people are getting the standard of care, then being told that nothing else can be done. It became clear to me that we need to get information about clinical trials directly into the hands of patients. People are dying because they don’t know all of the treatments that are available to them,” says Jamie.
According to Jamie, too few patients are given the information they need to make an informed choice about clinical trials and yet researchers across the globe are scrambling to get enough patients into their clinical trials to determine if a treatment actually works. Today, there are over 1,000 immunotherapy clinical trials underway for all cancers, and 462 trials specific to melanoma actively recruiting patients. Recruitment is a huge hurdle that all trials must overcome.
One way MRA hopes to bridge this gap is by launching Melanoma > Exchange, a new support community and discussion group. Melanoma > Exchange offers a critical space for people touched by melanoma to find support and ask questions related to melanoma, melanoma treatment and relevant research, including clinical trials.
“The only people who can truly understand what you are going through are other people who have experienced it. Your friends and family are crucial, but having melanoma can be a very isolating experience. Having people who ‘get it’ can make a huge difference. Patient communities like this play a role in creating a more proactive patient. These communities increase survival rates,” says Jamie.
Jamie wants everyone to know that clinical trials are a viable treatment option. “They aren’t the thing you try on a whim after you’ve tried everything else. They should be considered when you make your first treatment decisions because they are the way to make sure you are getting cutting-edge therapy.”
Learn more about clinical trials at:
- Melanoma > Exchange
- About Melanoma Clinical Trials: https://www.curemelanoma.org/about-melanoma/melanoma-treatment/therapies-in-development/melanoma-clinical-trials/
- NCI Clinical Trials: https://www.cancer.gov/about-cancer/treatment/clinical-trials
- Clinicaltrials.gov: www.clinicaltrials.gov
Research Patient Forum Patient Stories