Patient & Care Partner Spotlight: Matt & Stephanie McAvin, St Louis, Missouri, USA
Matt and Stephanie McAvin were recently featured in Genentech’s Biomarker Testing Campaign that was filmed during the ALK Summit in Nashville. We interviewed them about their story living with an ALK+ cancer diagnosis, juggling Matt’s diagnosis with caring for their family of three teenagers, and their advocacy in getting the word out on the importance of biomarker testing.
1) Tell us a little about yourselves - your personal and professional backgrounds - and your journey with ALK+ lung cancer so far from the patient and the care partner perspective.
Stephanie: Hi! My name is Stephanie McAvin and I am Matt’s care partner. We have been married 20 years, live in St Louis and have 3 fantastic boys. Ryan and Owen are 15-year-old twins, and we also have a 12-year-old named Luke. We spend a lot of time on the soccer fields and hockey rinks with them! Matt and I met post college when I was working as a nurse. Matt played soccer in college at St. Louis University and for a few years professionally after school. He has been working at World Wide Technology as a sales leader for the last 25 years. My nursing background encompasses all sorts of areas, but I have never worked in oncology, so this world is new to me. Definitely having the medical background is helpful though. Our twins were born at 28 weeks, and I have been home with them ever since. I do miss the nursing world but am grateful I get to do what I do! Matt’s diagnosis in August of 2022 threw us for a loop. He had noticed he was having trouble breathing as well as with exertion and wheezing. It ended up he had a collapsed lung from all the pleural fluid that had collected around his lung. A chest X-ray in the ER detected a lung mass and here we are 2 years later. It felt like those few months following, I was just getting through the days. Once a plan was in place, we could breathe a little bit and especially after that first scan when we knew the meds were working. And now, it’s not the first thing I think of in the morning and some days go by where it’s there but far in the background. We are very lucky that Matt overall tolerates his TKI fairly well. So our journey with ALK + lung cancer has been all the emotions, an experience you never dreamed would become a reality.
2) What do you know now that you wish you knew back when Matt was first diagnosed? What would you advise a newly diagnosed patient?
Stephanie: Stay off the internet! Ha! Easier said than done, I know. The things I read those first few days were devastating. I kept that to myself. It was hard to not share with Matt, but I didn’t want to worry him more than he already was. My advice looking back would be to focus on the day. The waiting is gut wrenching but the information you will get from the biomarker testing is so worth the wait! Those first 6 weeks Matt had no treatment in place and all I could think was, why are we not doing something. His wonderful oncologist felt strongly he was going to have a mutation because he was young and had no history of smoking, so we waited, and she was right! Secondly, it’s crazy to think back that 2 years later it has become our new normal. Life continues on and of course those scan days are hard, but with all the education on the ALK+ Facebook page and at the Summit, I now know that, even if and when we get the hard news, that there are options.
Matt: Stay off the internet unless it’s to search for ALK+ survival stories! It’s all a blur those first few days and weeks. I remember getting the call after 6 weeks of waiting after my biomarker testing and being told “good news, you have ALK!” to which I thought ok, great, I’ll take some good news. They proceeded to tell me I would be going on a TKI to treat the cancer to which I asked, “how long do people usually need to take the pills” and she replied that it varied but it could be a couple years, or it could be several years. I hung up, feeling good, texted some friends and told them I would be able to take some pills and should be “cured” sometime in the next several years. Stephanie quickly brought me back down to earth telling me that these meds weren’t to cure the cancer but were to treat the cancer. I’m a very optimistic person by nature and a dreamer, but the next couple of hours after that call were pretty rough for me as I really started to wrap my head around what I was battling, and from there I feel like I’ve been preparing my mind and my body for battle.
I’m so lucky to have Stephanie as a care partner who really focuses on the medical and science side of things while I focus on my mindset, my diet, my sleep and my exercise routine.
In the early days I threw myself into books. Some of my favorites are:
The Obstacle is the Way by Ryan Holiday (mindset)
Anti Cancer by David Servan (focuses on diet)
On Fire by John O’Leary (mindset and overcoming obstacles)
The Cancer Conquer by Greg Anderson (positive thinking)
In addition to reading, I’ve really tried to up my exercise and my sleep routine. I workout regularly. I think any sort of movement is better than no movement! I feel sleep and exercise have helped me fight off some of the side effects of my treatment which fortunately have been minimal, with the most noticeable one being fatigue.
3) You have three teenage boys, so presumably a full day-to-day life. How does this add to the challenge of navigating this diagnosis and how do you maintain a balance between being fully present for your family while still prioritizing your health?
Matt: With a stage 4 cancer diagnosis your perspective literally changes instantly, and I feel like there are many positive changes that come along with a diagnosis like this. While I’m far from perfect, I do feel like post diagnosis I’ve been more present and more appreciative of the little “boring” moments like driving a kid to school, telling someone I love them, putting the sunroof down on a nice day, making someone feel heard, etc. Unfortunately, people leave us every day and many of them unexpectedly, so in many ways I feel lucky that I’ve been put “on notice.” So, with the time I have left, I want to live my best life with the people that I love and at the same time I remain optimistic that I have many, many good years ahead of me.
I ran across this quote in the last 2 years and it really hit home:
“Every minute someone leaves this world behind. Age has nothing to do with it. We are all in “the line” without knowing it. We never know how many people are before us. We cannot move to the back of the line. We cannot step out of the line. We cannot avoid the line. So while we wait in line:
Make moments count
Make priorities
Make the time
Make your gifts known
Make a nobody feel like a somebody
Make your voice heard
Make the small things big
Make someone smile
Make the change
Make up
Make Peace
Make sure to tell your people they are loved
Make sure you have no regrets
Make sure you are ready…”
4) You have attended the last two Summits, in Philadelphia and Nashville. What would you say have been the biggest benefits to you of being there? What did you both personally get out of it?
Stephanie: We have both really enjoyed the Summits! I absolutely am in awe of the quality of the speakers that come and present. It is such a learning experience for me for what they are doing now to treat ALK + and what is in the pipeline. Personally, the connections made have been wonderful. It is nice to know you are not alone on this journey. Everyone there is so welcoming and supportive! The biggest takeaway though is hope for the future!
Matt: I’ve been SO impressed with the Summits and look forward to them. The event is first class and so much time is put into it by the ALK Board and planning Committee as well as the drug companies sponsoring and of course the physician community who take time away from work and families over the weekend to spend time with all of us. Walking into the networking reception the first night in Philadelphia was intimidating. Within minutes I was greeted by Frank from Omaha, a 10-year survivor who was about as welcoming as anyone could be. From there I met so many other wonderful and inspiring people, including Kirk Smith who I had found on the Internet when I finally decided to go back out and use Google. but this time I googled “ALK-positive survival stories” and found so many! For me, the reception is a place to go for hope and making connections and my goal is to be attending 10 years from now inspiring new patients.
5) You were recently featured as part of the Genentech Biomarker Testing Campaign. What inspired you to participate in this campaign and how do you hope your participation will help and/or inspire other patients?
We would do just about anything to get the word out about ALK and biomarker testing! It’s unbelievable to think that this testing isn’t offered to everyone after a lung cancer diagnosis. It’s such an important message and it really is a critical step for you and your doctor to come up with the best treatment plan for your particular type of cancer.
Interview by: Christina Weber
