Gordon Levine’s Immunotherapy Experience: A New Understanding of Advocacy

In November 2014, Gordon learned that he had a malignant tumor in his colon. Over the next four years, Gordon underwent several surgeries and chemotherapy.

In early 2018, after two brief remission periods, the cancer returned. This time, it also spread to the abdomen, liver, lung, and bone. Having exhausted his available treatment options in Montreal, Gordon was fortunate to be introduced to Dr. Aaron Miller at UCSD Moores Cancer Center in San Diego.

Although Gordon's tumor did not have the MSI-high mutations (a biomarker which indicates a higher likelihood of success with immunotherapy), new genetic sequencing conducted in Fall 2018 revealed other mutations that, in Dr. Miller's opinion, opened the door to another immunotherapy option: a combination of nivolumab (Opdivo®) and ipilimumab (Yervoy®). After three rounds of treatment, Gordon’s tumor markers plummeted and a CT scan showed substantial reduction in the cancer.  Subsequent scans indicated that most of the cancer has been eradicated.

In June earlier this year, Gordon shared his experience at the CRI Immunotherapy Patient Summit in San Diego. After the summit, I had the opportunity to interview Gordon and talk about his experience and the importance of patient advocacy.

Sofia: Gordon, thank you for this interview. I would like to start by asking you about your experience speaking at the summit.

Gordon: My experience sharing my story at the summit was more empowering than I expected. I'm used to talking at professional conferences from when I was a practicing attorney, but this was different. It is extremely personal to tell your own story to an audience.

The summit was a tremendous learning opportunity for me as a patient. Speaking on the patient perspectives panel allowed me to make real personal connections. I really enjoyed talking to the audience and would certainly like to do something similar again in the future. After the panel, I met one-on-one with a lot of people who were looking for information.

Gordon Levine (center) shares his experience with immunotherapy on the patient perspectives panel. Photo by Tim Otto

Sofia: How did you feel sharing your experience? Was this the first time sharing your experience with immunotherapy? 

Gordon: It's interesting, because you think you are prepared, but you can't really prepare for a live interview in front of an audience. You have to think about what messages you want to get out and how to share these messages in a way that's not too complicated. Before the panel, I asked myself, "What would I want to hear as a patient attending a conference?"  I wanted to translate my experience in a way that could help somebody who is contemplating immunotherapy, but perhaps doesn't know what it means.

I also asked myself how to share useful information that patients need in order to move forward in their own treatment. I thought about what information I would have really loved to have known about as a patient before going through the treatment myself.

Attend a CRI Immunotherapy Patient Summit

Sofia: You mentioned this is a new understanding of patient advocacy for you, how so?

Gordon: As a lawyer I'm used to representing clients and advocating for them in front of a judge or in a negotiation. This is different because, on the one hand, I'm advocating to help somebody else, but at the same time I'm really advocating to help myself, as a patient, undergoing an experimental treatment.

The more patients that participate clinical trials and receive experimental treatments, the more we can generate data that will improve future treatments for patients, including myself. So, when you are advocating for the cancer community as a whole, you are also advocating for yourself, as an individual cancer patient.

Patient advocacy is especially important today because immunotherapy research is evolving so quickly that, unless we share with each other all of the latest developments and experiences, there's no other way to stay on top of what's happening. It’s a very exciting time.

Sofia: What would you say to someone looking for information on cancer immunotherapy?

Gordon: The first point I always make is that we need to take control of our own personal medical file. It is your right as a patient to ask for your medical information. The first step is to ask for the tests—genomic tests and other important biological tests—then obtain reports from our medical professionals telling us the genomic makeup and biomarkers of our cancer. We need to know about and have control of this information.

It’s a proactive process. We need the test results in order to find the right oncologist, the right treatment, the right clinical trial. And that's where we need to network to determine how to find the proper specialist to analyze the results of our tests, recommend possible treatments, or look to see if there are clinical trials geared toward certain biomarkers that we have.

Sofia: During the panel you shared that genomic sequencing made a huge difference in your treatment. How did you learn about genomic sequencing? 

Gordon: I found out about genomic sequencing through Dr. Miller. He advised me to get next-generation sequencing before seeing him for a second opinion. Prior to that, I was told by the doctors at my hospital in Montreal, "You don't have the genetic biomarker that immunotherapy works best for." However, they didn't initially share the report with me. After I spoke to Dr. Miller, I started the process of having my tumor sequenced in two different places and they actually gave me the reports for the first time.

Gordon (left) and his oncologist Aaron M. Miller, MD, PhD, (right) at the CRI Immunotherapy Patient Summit. Photo by Tim Otto

With these two reports, I began to understand that there are different types of sequencing, and that certain sequencing companies are better at certain types of sequencing. It was the detail contained in one of those reports that resulted in Dr. Miller prescribing the immunotherapy combination that I received, which has been so far very successful.

It's complicated. It's not a simple yes-or-no test. It’s a test that gives you a whole lot of information, and you need an expert to help interpret it.

Sofia: What would you want other patients to know about immunotherapy? 

Gordon: I could give a simple answer: Go for it! I wish every cancer patient could benefit from immunotherapy, and I hope that someday they will.

Immunotherapy is working to get your own body's immune system to locate the cancer and to attack the cancer. The side effects come and go as your body ramps up its immune system to fight the disease.

For cancer patients who are accustomed to rounds of chemotherapy, I found personally that immunotherapy was a much easier treatment to tolerate. And of course, from my own personal perspective, the results have been fantastic. So I would obviously recommend anybody who qualifies for treatment to go for it, whether it's through a trial, or by an oncologist getting the treatment off-label. I'm hoping that it'll become more and more part of the standard of care in the future. 

Find a Cancer Clinical Trial  

Sofia: You mentioned that participating on the panel at the summit helped you think of yourself as an advocate. What are you looking for in this new path into patient advocacy? What would you like to achieve?

Gordon: One of the hard things that I've had to come to accept at a relatively young age is that my career as a private practice attorney has come to an end. I will never be able to return to that career in the way I practiced before my illness. What I'm starting to learn about cancer advocacy is that I have an opportunity to use the skills that I previously used as an attorney to help benefit other patients going through similar issues as well as to try to find a way to improve access to immunotherapy.

This is particularly important here in Canada, where it's more challenging to access immunotherapy treatments. By comparison, while the amount of FDA approvals in the United States for immunotherapy is growing, it’s still much lower for Health Canada. The only way you can receive immunotherapy in Canada for colorectal cancer is through a clinical trial. My ultimate goal would be to improve access to immunotherapy in Canada. 

Read Gordon’s Colorectal Cancer Story