Shortly after beginning immunotherapy for melanoma, Isolde traveled to New York City for the 2017 CRI Immunotherapy Patient Summit. There, surrounded by over 175 fellow cancer patients and caregivers, she learned how immunotherapy worked—and would eventually save her life.
Diagnosed with melanoma in 1999, Isolde’s initial experience with cancer treatment was conventional: surgery removed the tumors, and for almost two decades she remained cancer-free.
In 2017, the cancer returned as stage 4. At her doctor’s recommendation, Isolde immediately began treatment with an immunotherapy called pembrolizumab (Keytruda®), which blocks the PD-1 immune checkpoint pathway and helps the immune system attack cancer cells. It was then that she traveled from her home in Mexico to meet experts and have many of her questions answered at the CRI Immunotherapy Patient Summit in New York City.
Six months after her first immunotherapy infusion, Isolde’s scans revealed that her tumors had shrunk significantly—a complete response to immunotherapy. In 2019, she returned to a CRI Immunotherapy Patient Summit, this time in Houston and as a patient panelist. Today, Isolde focuses on patient advocacy, and she recently founded INMUNE, the first melanoma foundation in Mexico.
We spoke with Isolde about the importance of creating new spaces in Latin America to advocate for immunotherapy access and share patient experiences.
Isolde at Independence Park, Mexico
We would love to hear about your experience at the first CRI Immunotherapy Patient Summit you attended in 2017.
Isolde: It meant so much to me to be able to attend the summit. At the time, I was searching for a patient group in Mexico that could provide me with information about immunotherapy. As I didn't find any answers in Mexico, I searched online and discovered the Cancer Research Institute Summit Series and ImmunoCommunity.
Attending the CRI Summit was enlightening. I was able to learn about how immunotherapy works and meet people who were going through a similar experience to mine. I had never met anyone who had survived cancer. Listening to the cancer patients sharing their testimonials on the patient panel was one of the most important moments in my life. It was so inspiring—it was a breakthrough for me. I told myself, “If there are people who have already survived and gone through the same thing that I am going through now, I know I will survive.”
I am always going to be thankful to CRI and to the patients on that panel. I think it is very important for people who are looking for more information on what to expect and trying to survive to learn more about what's happening to our bodies during immunotherapy.
You recently shared your experience on the Patient Perspectives Panel at the 2019 CRI Immunotherapy Patient Summit in Houston. How did it feel to share your story on this panel?
Isolde: When I went to the 2017 Summit, I met CRI Chief Executive Officer Dr. Jill O’Donnell-Tormey. I told Jill how grateful I was to discover Cancer Research Institute, and that I was going back to Mexico with all this information. I also told her, “I know that in two years, I'll make it here.” When CRI invited me to share my story on the patient panel at the Houston Summit, I felt like I made it. I hoped that I could inspire the patients there the same way that I was inspired when I went to the New York City Summit.
On the panel you discussed the importance of self-advocacy. Did you face any challenges gathering and organizing this information about immunotherapy?
Isolde: I remember when I was diagnosed with stage 4 metastatic melanoma, all I could think was, “This is something really serious.” My oncologist told me that there was a treatment that I should start right away, and indeed, I started treatment the next day. I knew it wasn’t chemotherapy, but my oncologist never mentioned the word immunotherapy.
It was actually after my third immunotherapy infusion that I first heard the word “immunotherapy,” and I felt prepared to listen and ask questions. In Mexico, I don’t think many patients ask specifics about their treatment or explain what they are willing to go through. We as a culture are used to putting ourselves in the hands of the physician and not asking anything.
At the time, I didn't know anyone who had gone through immunotherapy, which was also challenging. I began searching for information on the Internet. I wanted to speak with someone who had survived the same diagnosis as me and gone through immunotherapy.
There is something that you are told when you are diagnosed with any illness: “Don't look at Google because you might find things that you don't want to know.” So I was really afraid of everything I found on the Internet, but I tried to organize the information and understand it.
When I found Cancer Research Institute’s website, I found all the information I’d been looking for. The website has been designed in a way that is easy to understand. For example, the webpages on “What is immunotherapy?” and “What are the challenges in immunotherapy?”
What advice would you like to give to others when talking to family and friends about a cancer diagnosis and immunotherapy?
Isolde: Well, the first thing that I would say is that you must have hope. I've never seen something so miraculous as immunotherapy.
In retrospect, I wish I had told my family sooner that the cancer had returned. I waited until my second scan, after beginning immunotherapy, to tell them. I went through three months of treatment, after my diagnosis, by myself. I told only a few friends, who called me every day and came with me to see my oncologist.
I was so worried about the impact this information would have on my children. They were 22 and 24 by that time. My son was taking exams, and my daughter was living outside our country by herself.
I was planning not to tell them if my second scan didn't improve. Fortunately, on my second scan, six tumors almost had disappeared completely, so it was miraculous. I was really excited to share this news with them: “The bad news is that I have cancer, but the good news is that I've been in treatment for three months, it’s going well, and I'm going to be fine.”
During cancer diagnosis and treatment, we might feel very vulnerable, but at the same time, I think it’s important we reach out to people that we love to tell them that we need them.
This experience has allowed me to see and appreciate things in a new way. I started to taste life and see that everything is so beautiful—that even though we have day-to-day problems, life is something that we must hang on to. I learned to value the things that I have and the people that I love. That is the best thing in this experience for me.
Isolde speaks at the 2019 CRI Immunotherapy Patient Summit in Houston. Photo by Ranjani Groth
What does cancer patient advocacy mean to you?
Isolde: During this process, I learned that I inherited a mutation (cyclin-dependent kinase inhibitor 2A) from my father. My father died at age 37 from melanoma. I was only seven years old. Speaking about melanoma in my family was really difficult after his death.
You need to communicate with your family because the more you know, the better chances you have of preventing cancer, or if you ever do have cancer, you know what to expect.
Most people do not speak about melanoma in Mexico, so I feel it is important advocate for cancer patients by sharing information.
I had the opportunity to speak to ten patients whom I met through my oncologist, and none of them had this genetic condition. They developed melanoma because of sun exposure. So, I wanted to advocate not only for awareness around genetic testing, but also basic precautions we can take against environmental risks to which we’re exposed.
I spoke to many people in the hospital that were going through traditional chemotherapy, even though their doctors knew that they wouldn't survive the treatment. The doctors didn’t take the risk of giving them immunotherapy because they didn't have enough information, or because they didn't have access to these medicines (they are very expensive in Mexico).
I want to improve awareness and access—to make other patients’ journeys easier. I want to be an inspiration to others, as the patients on the first CRI Immunotherapy Patient Summit in New York City were to me.
What is INMUNE and how did it start?
Isolde: The Cancer Research Institute inspired me create INMUNE, an advocacy organization in Mexico. Its mission is to bring information about melanoma and immunotherapy to patients and caregivers as well as health authorities and medical associations, and to improve access to these treatments in Mexico.
Access, from my point of view, is crucial. Many of these treatments are not available to most people, especially in countries like mine. Access to treatments that can cure cancer should be on the agenda of legislators.
I am organizing the first patient group in June 2020 during CRI’s Cancer Immunotherapy Month.
The Cancer Research Institute has changed how I approach my illness. I'm grateful to all the talented and beautiful people who work at CRI, and I hope I can inspire other patients the same way they have inspired me through my future work with INMUNE.
Read Isolde's Melanoma Story in the ImmunoCommunity