How a Personal Journey Shaped Lilly TrialGuide

Nika Portraits 9.2016Jamie Goldfarb is a writer, mom, cancer survivor, former clinical research employee and a clinical trial participant. Her personal and professional experience with clinical research fuels her advocacy efforts. You can find her presenting at various health care conferences, providing updates on her blog, Melanoma Mom or on Twitter @MelanomaMom.

LillyTrials: We became acquainted with you when Liz Mascherino from our team met you at the CROWN Congress in early 2016. At that time, she was guiding the expansion of Lilly TrialGuide to include a cancer clinical trial-specific section, and she was piqued by your story and passion advocating for clinical trials. What appealed to you about her request to provide patient input to the development of Lilly TrialGuide?

Jamie Goldfarb: As a patient advocate, I cannot possibly stress enough the need to get information about clinical trials directly to patients in a way they can understand. We’ve been using physicians as gate keepers for too long. Now is the time to foster a population of informed, proactive patients who are in control of their own health, who are active participants in determining their own treatment, and who are empowered to make decisions and take action. In some cases, their lives depend on it.

Lilly TrialGuide aims to support patients in their own search for clinical trial information. It is exactly the kind of resource that patients need and represents a concentrated shift in society’s overall mindset regarding health.

LT: You played an important role in the development of the Lilly TrialGuide cancer website, helping us to shape it with the viewpoint of someone who had participated in a clinical trial. Can you share a bit about how you influenced certain design or content decisions?

JG: As the site was being developed, I was asked for patient insights to guide topic areas and themes for the Common Questions section of the site. I also provided ongoing reviews, edits, and suggestions to the layout of the site and the research area videos to help ensure the site provides content that is relevant, informative and relatable content for patients.

LT: We are grateful for your input! How did you end up deciding to join a clinical trial in your own experience?

JG: I was diagnosed with stage IIB melanoma in January 2008. I had birthmark on my left thigh that had changed over time. I had a wide excision with clear margins, meaning no further disease was detected, and I went on about my life. Over the course of the next year, I got multiple infections near my surgical site. After the third infection, they decided to go in again to see if maybe they had left something behind, like a suture, that was causing infections. During that surgery, they found a mass of melanoma in the deep tissue, which then put me at stage III. After consulting with my oncologist and several melanoma specialists, we decided not to go through any treatment and go back to our normal lives. In January 2010, I became pregnant, and gave birth in October 2010. In January 2011, right before I was scheduled to return to work from maternity leave, my oncologist suggested that we do a follow-up scan since we had not done once since before I was pregnant. That scan showed melanoma in my liver and my pancreas, at which point I was stage IV.

At the time, there were only really two approved treatments for melanoma, neither of which provided an acceptable option. We had a brand new, 11-week old baby, and I was determined to beat the odds. Although there were only two approved treatments for melanoma, there were several alternative options available through clinical trials. So, after I was diagnosed, it was a flurry of obtaining information, getting the opinions of melanoma specialists, and speaking with as many people as possible to determine what our treatment pathway would look like. We settled on joining a clinical trial at the National Cancer Institute for Adoptive Cell Therapy, also called TIL (for tumor infiltrating lymphocytes).

The way TIL works is really awesome, in all senses of the word. First, they harvest tumor and extract all of the white blood cells within that tumor, because those cells were able to identify and start attacking the tumor. They then replicate these cells in the lab by the billions, and in my case, they genetically engineered the cells to express Interleukin 12 upon contact with tumor. The treatment comprises about a month-long in-patient hospital stay, which I did September 2011. Scans from October through December showed that the tumors were growing and the treatment wasn’t working. We were about to start considering next steps, when my January scans showed that the tumors were shrinking- it was working! From that point on, over the course of the next 2 years, my tumors kept shrinking until scans finally showed no evidence of disease. Thanks to this amazingly complex immunotherapy-based treatment, I went from about 40 tumors down to zero. I have remained no evidence of disease for more than 2 years and I have no doubt I’ll stay that way for another 50 years – all because I joined a clinical trial that saved my life.

LT: What would you tell our readers about clinical trials?

JG: By joining a clinical trial, I gained access to the most cutting-edge medical science available. The whole way, I was treated as a partner and a person, never like a patient. My doctors discussed every procedure, no matter how routine, to gain my buy-in and consent, and most importantly to ensure my understanding of my own treatment. Participating in a clinical trial gave me control over my illness. I had a right to ask questions, to have detailed information, to push back on or question decisions along the way. I was taught the importance of being proactive about my health and my care.

But I was definitely one of the lucky few. I started my journey knowing about clinical trials and the care options they represent. I knew how to access information about specific clinical trials that were relevant to me, and I understood the process around accessing, screening for, and participating in clinical trials. Because of this, I was able to quickly and efficiently determine my best pathway considering all of the available options, including clinical trials. But that is not the case for most. Most often, patients are given the approved treatments and frequently are not even told about clinical trials, let alone how to find and access them. 

LT: Thanks, Jamie, for your voice in advocating for cancer clinical research.

If you want to learn more about cancer research, visit the Lilly TrialGuide cancer site.

Did you notice a new name at the top of this post? LillyPad is proud to partner with a variety of guest bloggers from around the world, and we're committed to hosting a range of viewpoints on our site. However, please note that the views contained in this post belong to its author and are not necessarily endorsed by Lilly.