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Please join us in welcoming Nicolas Garnier, PhD to the MIB Agents Scientific Advisory Board. Nicolas is an osteosarcoma survivor, with a MS in Cancer Genetics from Denis Diderot University (Paris, FR) and a PhD in Experimental Medicine from McGill University. He is currently Head of Patient Advocacy, at Pfizer Research & Development. With his personal osteosarcoma experience, industry role, and scientific academic background, he shares our passion to Make It Better and will bring valuable perspective to our SAB. He shares with us how his osteosarcoma diagnosis has led him to his academic, professional, and community pursuits.
Can you please share your osteosarcoma story with us? When and how were you diagnosed, what was your treatment and surgery?
I am French (born in Paris) and Canadian. I now live in Collegeville Pennsylvania. I was diagnosed when I was still in France, in April 1996. I was in 10th grade, and for some time, my right knee had been hurting. Family doctor, local clinic X-ray, inner-city specialist MRI. They saw a tumor. Followed a biopsy, to see if it was benign or malignant. Cancer.
« Sarcome ostéogène de l’extrémité supérieure du tibia droit »
9 months of intensive chemotherapy (methotrexate; etoposide; ifosfamide) at the Curie Institute in Paris, 7 orthopedic surgeries over 4 years, 1 lung biopsy, 2 port-A-cath, 1 staph infection, 2 years of antibiotics, 42 inches of scar, and finally, arthrodesis by Juvara method (knee fusion; resection-arthrodesis of the knee with fixation by medullary nailing and using massive bone graft).
As a long-term survivor, can you share some of the long-term effects you've had from treatment and surgery?
I consider myself extremely lucky, and none of what I am about to say should take anything away from the fact that I am alive and well, and most importantly grateful.
Orthopedic: The most obvious long-term consequence is that I cannot bend my leg. This translates into 3 types of consequences:
1. Mechanical: My “fused leg” is shorter than my “regular leg”, so I use custom orthopedic insoles to compensate, but it still puts a strain on my hip and spine overtime. When one of your joints cannot work anymore, it does put a mechanical toll on pretty much your whole body. For example, I must push on my hands to get up from a sitting position. As I age, this causes wear and tear in my shoulders (mild osteoarthritis). I also have mild hip osteoarthritis and frequent back / neck pain.
2. Physiology: This also puts me at risk of deep vein thrombosis which I did experience a few years back. On top of that, I have chronic venous insufficiency.
3. Everyday life: I can’t run, jump, bicycle, or sit comfortably anywhere to be honest, unless in an armchair with a footrest. I drive an adapted car (automatic, left foot gas pedal). Despite all that, I like to lift weights at the gym, challenge myself and participate in obstacle racing and walking challenges. Swimming is also very good for me, and I love it. I could go on and on about all the little things of life that I need to work around, find ways to adapt, most of the time without anyone noticing.
Chemotherapy: I know that I need to monitor my kidney function regularly, so far so good. I have poor venous access for blood draws (chemo veins), but we always find a way… eventually. Chemotherapy also made it more difficult for me to have kids. Once again, science and medicine came to the rescue, and we now have 3 beautiful children.
I will say that it can be very natural to see everything through the lens of being a cancer survivor. But everyone in life eventually ages, gets bumps and bruises, chronic conditions, little aches and quacks or sometimes more serious stuff. Keeping this in mind helps me keep a “healthy” relationship with my health and my body.
Psycho-social & mental health: It is very complex for me to fully grasp the extent of the psychological consequences of my cancer, treatments and surgeries. I know it’s there, but I never addressed it. I guess I am a bit old school in that regard. I think my way of somewhat addressing it is through the life I chose. Making things better for people who have health issues, via science, research, clinical development, advocacy, awareness, fundraising… whatever works. This led me to my academic, professional, and community involvement paths.
You have a Masters Degree in Cancer Genetics and a PhD in Experimental Medicine. How did your experience with osteosarcoma influence your decision to pursue these fields?
I always had a soft spot for science and biology in particular. I might have pursued marine biology, or become one of those adventurers you see on television who go look for new species in the jungle. But when I came back to school, the target was clear: I will study biology, I will study those “cells” that I kept hearing about. DNA, mutation, division, growth, tumor, chemotherapy, I wanted to understand what happened to me, and then how to fight it. Still, in my down time, you may very well find me watching some wildlife documentaries with my kids.
How did you decide to make the leap from academia to industry?
When the opportunity came along, I immediately saw the potential to make a positive and direct impact for so many people, as well as an exciting way to continue to learn and grow in my vocation. It felt very natural and right for me. Now, I focus on patient advocacy and how to bring the patient voice, needs and preferences at the heart of industry. I can’t think of a better career for me.
What does MIB Agents mean to you and what motivated you to join the Scientific Advisory Board?
When I first heard of MIB, I think in 2019, I couldn’t believe I had not heard of it sooner. I was at the NORD (National Organization for Rare Disorders) annual conference, and I saw a flyer for a small satellite gathering about a “rare cancer coalition”. I decided to go and during a conversation they told me about MIB and Ann Graham. I was both excited and nervous to meet the team, and the whole MIB community. I had never met another osteosarcoma survivor before, in 3 decades! I joined as an MIB ambassador agent, took the certified peer-visitor training (which was enlightening). Being part of MIB is a very fulfilling and humbling experience at the same time. I am so impressed, for example, by what the MIB Junior Advisory Board does. I wish I was as strong as they are when I was their age. Being invited to join the Scientific Advisory Board is a great honor and makes me really happy. I intend to use everything I have learned along my journey to further the mission of MIB.
You are now married with three adorable kids! Please tell us about your family!
As mentioned previously, my dear wife Alicia and I have been blessed with 3 wonderful children, Emmanuelle, Gabrielle and Samuel, all 3 in middle school, and let’s not forget our black goldendoodle named Onyxia who likes to proudly rock her MIB bandana. Our kids know about my past and my path, they ask me questions regularly and I try to be an open book about it. I am totally a helicopter parent. Is it a symptom of our time, or a direct consequence of my hyper medicalized childhood. Probably a mix of the two. I am definitely attuned to the value of life, and the value of health.
Everyday I cherish my luck, and I try to be worthy of it.
