Patient Spotlight: Emily Venanzi, Newton, Massachussetts
Emily Venanzi with her husband, Patrick, and their two children.
Emily Venanzi is an active member of our Medical Commitee (with particular involvement in the Research Review Panel selecting which research projects to fund) as well as our Research Accelaration Committee. As a patient, she is an interesting case, as she "jumped" straight on a clinical trial as her first line of treatment, which she's still currently on. We interviewed Emily to find out more about her, her background, and what research developments give her the most hope for the future.
1) Tell us a little about yourself - your personal and professional background and your journey with lung cancer so far.
I grew up in the suburbs of Kansas City with my parents and younger sister. Thanks to an excellent high school chemistry teacher, I became interested in science and went to Boston College to study biochemistry as an undergraduate. I met my husband, Patrick, there and we settled in the Boston area, where I then went to graduate school at Harvard for a PhD in immunology, with a focus on T-cell development and autoimmune disease. After another year working as a researcher after my PhD, our daughter was born and I decided to stay home with her. A few years later, we had a son, and I have loved being a mom to both of them ever since.
In late 2017, when I was 40 and my kids were 9 and 6, I developed a chronic cough and then started getting short of breath and losing weight. My primary care physician sent me for a chest X-ray, which detected a pleural effusion and a mass in my left lung. After a CT scan and a biopsy, I received my stage IV lung cancer diagnosis. In addition to the pleural effusion, the cancer had also spread to lymph nodes in my chest and abdomen.
I am fortunate to live near a satellite location of the Massachusetts General Hospital (MGH) Cancer Center at my local hospital where I was diagnosed. The thoracic oncologist I met with there, Dr. Revati Rao, had ordered biomarker testing of my biopsy tissue right away. She told me it was likely my tumor had a genetic change driving its growth. Because I was interested in finding out about possible clinical trials, I switched my care to the MGH main campus in Boston with Dr. Alice Shaw and Dr. Jessica Lin. It was Dr. Lin who first told me my cancer was ALK-positive, and she told me about several options for clinical trials. The one she and Dr. Shaw recommended was a combination of Alectinib, which had just been approved for first-line treatment a few weeks earlier, and another drug, Cobimetinib, a MEK inhibitor, which was already being used for melanoma treatment. I learned from Drs. Lin and Shaw about the laboratory research by Dr. Trever Bivona’s group that led to the concept of the ALK-MEK combination trial and learned that his experiments had shown that the MEK inhibitor might keep the ALK inhibitor working longer by making it more difficult for the cancer to develop resistance to the ALK inhibitor. I also discussed my treatment options with Dr. Mark Awad as part of a second-opinion visit and then decided to go for it and enrolled in the trial. After a few months, the only sign of cancer in my body was a small spot in the area of my primary lung tumor, which I then had treated with targeted radiation (SBRT). I’ve continued to do very well on the Alectinib-Cobimetinib combination with few side effects other than the usual Alectinib fatigue, anemia, and minor skin issues. It’s still too early to know whether the MEK inhibitor is making a difference or if I’m simply having a good response to Alectinib, but I hope with time and data from more trial participants, researchers will determine whether this drug combination is a good treatment option for patients.
2) What do you wish you knew when you were first diagnosed? What would you advise a newly diagnosed patient?
When I was first diagnosed, I didn’t know much at all about lung cancer and its treatment. During the few days between when I got my biopsy results over the phone and when I first met with Dr. Rao, I was imagining my future consisting of some harsh chemo treatments and then not getting to see my kids grow up. I wish knew right away that research had transformed lung cancer treatment in the few years before my diagnosis and that there were a lot more reasons for hope.
I’m fortunate that my diagnosis happened quickly because I was at a hospital connected with a major cancer center, and that I had several clinical trial options to consider. I’d advise a newly-diagnosed patients to make sure to get comprehensive biomarker testing in order to learn as much as possible about their cancer. I’d also suggest that they consult with a thoracic oncologist, a lung cancer specialist, who can help them learn about all of their treatment options and make an informed decision about the best first treatment for them.
3) What inspired you to get involved in the Medical Committee as one of the founding members? Has volunteering within the Medical Committee helped you cope better with your diagnosis, and do you feel like you have gained a new sense of purpose by volunteering your time and skills to help advance ALK-specific research?
I learned quickly after my diagnosis that, even though lung cancer treatments had improved dramatically, allowing for significantly longer survival for some patients, there was still so much more to be done to find a cure, or at least to turn lung cancer into a chronic disease. I wanted to help myself and other ALK-positive patients by advancing research on our disease and thought I could use my science background to do so. Soon after I was diagnosed, ALK Positive started to work with LUNGevity to fund the first round of ALK Positive research grants, and I volunteered to be one of the patient reviewers to help select which research would be supported with the funds raised by ALK Positive members. I’ve been a member of the Research Review Panel ever since, and I am honored to be able to help ALK Positive use its funds in ways that will, I hope, lead to better outcomes for us in the future. My work on the Medical Committee has helped me feel like I’m doing something constructive to try to change the course of my disease and help others at the same time.
4) You have been volunteering for the Medical Committee for several years now, including joining the Research Acceleration Committee [sub-Committee under the general umbrella of the Medical Committee], the Research Review Panel, and participating at ASCO as one of the representatives of ALK Positive, Inc. Tell us a little more about your involvement in these capacities. And what do you feel most encouraged by in terms of developments in research and/or novel treatments?
Colin Barton formed the Research Acceleration Committee (RAC) early last year, and since then we have been working to find ways, in addition to our ALK Positive research grants, to help move ALK research forward both in biotech and in academic research labs. The RAC has held a lot of meetings! We have helped connect researchers in biotech companies with ALK-expert oncologists and researchers to share information and resources. We have met with other cure-seeking nonprofits, such as the Cystic Fibrosis Foundation, to learn about how they have successfully accelerated research, and we have started exploring some new ideas based on what we have learned. We have held meetings with ALK-expert oncologists and researchers, both virtually and more recently at ASCO (the American Society of Clinical Oncology annual meeting), to learn more about what new research and potential new treatments they think are most promising and how ALK Positive can help advance this work. These experts are so generous with their time, and it’s clear they feel the same urgency we do to find better treatments. I’m encouraged by the fact that so many brilliant people, both in academic research labs and at biotech and pharma companies, are dedicating their careers to helping people with lung cancer.
Researchers currently pursue numerous exciting new avenues, and it’s difficult to pick a favorite, but, probably because of my background as an immunologist, I’m most encouraged by efforts to harness the immune system to fight ALK-positive cancer. Immune-based therapies have been very successful in treating other types of cancer, even some lung cancers. If researchers are able to find a way to make our immune system “see” our ALK-positive tumors as foreign invaders to be eliminated, that would be a major breakthrough.
Interview by: Christina Weber