To say Isabella de la Houssaye is an overachiever, would be minimizing what she is—a triathlete, a climber, a marathoner, a long-distance runner, a mother, wife and business owner, she epitomizes a success story. To that, in 2018, she added a Stage IV EGFR+ lung cancer diagnosis. For anyone else, this would have been a devastating blow but for Isabella, it was her motivation. According to the American Cancer Society (ASC), the overall five-year survival rate for distant stage lung cancer or stage IV NSCLC (non-small cell lung cancer) is seven percent.
Isabella decided to beat the odds—given her extremely active lifestyle, access to excellent healthcare, and her non-smoking, teetotalling eating and drinking habits. She decided that in her fifties when she had assumed she would live a long life, that she would actively engage in her cancer treatment but also, not take anything for granted. She decided to create memories with each one of her five children, whether it was climbing Aconcagua with her daughter, hiking 500 miles of the Camino de Santiago trail with her son, an ironman triathlon with another son and an 80-mile ultramarathon with her husband and three children in Kazakhstan, all in the year of her diagnosis. Did I say she is an overachiever? Yes, but for Isabella, this is who she is—living mindfully, hyperaware of her mortality and creating memories with her family whilst living the best way she can with her diagnosis.
It was an honor to chat with Isabella and to hear her journey, her determined focus to actively work on her treatment options and how cancer has not held her down in any form. Here is a brief conversation with her.
Madhushree Ghosh: Tell us your life before diagnosis and your initial few months, post-diagnosis. I don’t think we talk much about the shock, disbelief and then the regrouping of families when a diagnosis of cancer hits a member.
Isabella de la Houssaye: I’m a 58-year old mother of five, business owner, and endurance athlete. In January four years ago. , I was diagnosed with EGFR+ Stage IV lung cancer. I had never smoked, didn’t drink alcohol, and lived a healthy and active lifestyle. I had an annual health checkup several months prior to my diagnosis and was told I was the picture of health. It took me 5 months from onset of pain in my sacrum to get a proper diagnosis in part because there is no screening for non-smokers. By the time my cancer was diagnosed, it had spread from my lungs into my pelvis, spine, brain, sacrum and adrenal gland. It was finally diagnosed with an MRI that was ordered for what was believed to be a sports injury. Following my diagnosis, I had mutation testing to determine my treatment options. The first month following diagnosis was particularly difficult as I was deteriorating daily as the cancer progressed yet the doctors were reluctant to start me on a treatment until they had the results of the mutation testing. The tissue testing was taking so long that I finally had a liquid biopsy test and received the results more quickly which enabled me to start treatment. Both the tissue biopsy and liquid biopsy identified that I had the EGFR mutation which was instrumental in determining my treatment. Once I started treatment (a trial that combined the targeted therapy, Tagrisso with Bevacizumab) I felt better within days and by April 2018, I was able to complete a marathon with the assistance of walking poles. By June, I was running again and able to complete a marathon without needing the support of the poles.
MG: How did the family take the diagnosis and tell us how you handled it?
IH: The few months leading up to my diagnosis were incredibly stressful--my daughter had broken her neck in December and my son was rowing solo and unsupported across the Atlantic Ocean from December-January. The diagnosis was just one more stressful event and I was reluctant to burden my family with it. I didn't want to share the news till I had a treatment plan and could reassure everyone that I would be fine. I had to regroup and move on pretty quickly to continue to support my family. The trick to doing that was telling myself that sadness and dwelling on what I had lost would not help me so that I needed to focus on being alive in the moment and take full advantage of the time I had left. Prior to being diagnosed, I had embraced yoga, meditation and mindfulness practices to help navigate my life. Those were the tools I used to move beyond the fear and shock and get to a place of acceptance and finding joy in the moments I had left. Those practices have been instrumental in helping me accept and make the most of my new life with cancer.
MG: In 2018, you decided to make memories with your children, with a “last” trip to Mount Aconcagua with Bella, your 22-year old daughter. You’ve also participated in 20 Ironmans, run marathons in 50 states, and walked the Camino de Santiago (500 miles) twice. A very straightforward question—why? And what memories have you created that you wouldn’t have otherwise?
IH: I have always cherished outdoor adventures with my children because they forced us to be disconnected from technology and other distractions and we could focus on each other and nature. I’ve always believed that we can learn so much for being in nature and that it brings us back to the present and our own small piece of the larger world. Climbing mountains with my children, walking the Camino—these were all done in an effort to both teach them skills such as patience, focus, perseverance as well as an appreciation for nature. Those excursions also provided time to talk and get to know each other without interruption. There are certainly mindfulness lessons to be learned in nature and much of surviving in nature is in itself about being mindful. I started walking marathons with them as a way to learn to settle in and take one step at a time. To climb mountains or really do anything over a long period of time you have to learn to stay in the moment and not let yourself be overwhelmed by the totality of the situation.
Prior to diagnosis I, like most people, assumed I would lead a long life. When I turned 50 I thought I was half way through :). The diagnosis brought home to me that tomorrow is never guaranteed and made me more aware of all the things I wanted to share with my children and teach them before I died. So, the diagnosis really just sped up a process of teaching and making memories I had started years earlier.
MG: 'The mountains always have a way of making me cry,' you told The New York Times in 2019. Tell us about your journey of outdoor adventures and how you’ve been focused on clean eating and mindfulness. How does that help in your own cancer journey?
IH: Prior to diagnosis I did try to eat healthily and maintain a healthy weight. Looking back, I could have been much better at that and eaten even more fruits and vegetables and certainly less sugar. The issue for me and healthy eating since I’ve been sick is that the treatments I’ve been on have made it very difficult to eat--the targeted treatments come with mouth ulcers that make eating painful and the chemo's come with nausea and change the way food tastes. I realize now what a blessing it is to have an appetite and be able to choose what you eat. My current treatment makes me so nauseous that I struggle to keep my weight stable at about 95 pounds. My doctors advise me to eat whatever I can keep down to keep the weight on. Eating has become an ordeal rather than a pleasure. I never would have imagined that could be possible.
MG: What is the role of mindfulness in your journey?
IH: Mindfulness in the cancer journey is helpful in many ways. By staying in the moment, I don’t think too much about my diagnosis but rather that I’m alive in the moment and need to make the most of it. None of us is guaranteed tomorrow so this moment is all we have. Mindfulness also helps me not worry about what I cannot control in my life so that I don’t waste energy in that way and can put that energy to healing and finding joy. It also helps me recognize when I’m experiencing negative feelings so that I can let the negativity go and focus more on the positive.
Becoming “mindful” is a lifelong process that takes daily practice and work. I did not discover “mindfulness” until midlife when I was trying to raise 5 teenagers, work a full-time job, etc and needed coping strategies. I started the practice then and have continued and it has saved my life and sanity multiple times over.
MG: How have your five children and husband handled the diagnosis?
IH: For better or worse, when we went around the dining table this thanksgiving and everyone was asked to speak about their high and low of the year, despite the fact that I had nearly died 3 times in the year, not one of them mentioned my health in their comments. I think that’s a very positive sign and exactly what I would want. I don’t want these years of me living with cancer to define their lives. I certainly don’t mind that they are nicer to me perhaps than before my diagnosis and that there’s a bit of a recognition that you have to appreciate the time you have on this earth!
It’s been a good wake up call for everyone and has helped all of us appreciate the importance of living in the moment.
MG: Tell us about the experimental trials and treatments that have helped you and what would you recommend patients do when they get a diagnosis such as yours?
IH:
February 2018-May 2020 Tagrisso Avastin then just Tagrisso (phase 1 trial)
June 2020-September 2020 Tagrisso + Dacomitinib
October 2020-January 2021 Cisplatin Alimta
February-March 2021 TIL Trial--lymphodepleting chemo, keytruda, interfuron 2 (phase 1 trial)
June 2021-U3 1402 (phase 2 trial)
Radiation to the sternum
Radiation to the brain
I was diagnosed in January 2018 and have been in trials or using cutting edge treatments from the start. My first trial was a combination of Tagrisso and Avastin. I was on that for eighteen months until my kidneys couldn’t tolerate the Avastin any longer. Then I just took the Tagrisso for a few months.
At about 20 months, Tagrisso plus radiation didn’t stop the growth. At year 2, a blood biopsy showed c797s mutation though that mutation did not appear in my tissue biopsy. At that point, since the oncologist wanted the mutation to show up in the tissue test, I was excluded from what I considered the best treatment option even though we knew from the blood biopsy it existed. I was put on a combination of dacomitinib and tagrisso for another 5 months--until the side effects were intolerable and it was clear that the cancer was progressing.
I was put on cisplatin/Alimta because all other trials required that I have chemo. That chemo stopped progression for about three months but had massive side effects like blood clots and very low white blood counts. I decided to try to qualify for a TIL or Car t cell trial and go for cure before my body became so wrecked that I would no longer qualify.
I did a TIL trial—one of the first EGFR + patients to do the trial. It did not work on me and left me physically and emotionally wrecked. The doctors had told me it was not for the faint of heart and they were absolutely right. It led to massive brain swelling and triggered growth in the 6 brain tumors that had been dormant for several years.
The next trial that all doctors agreed would be my best option rejected me because I had had a dose of Keytruda during the TIL trial. I did qualify for my current trial though-U3 1402 and I’ve been on that since July 2021. I’ve had progression on it for the past few months but not enough to have to leave the trial. I’m hoping to get a few more months on that drug since there is not an obvious next step for me. I’m having another liquid biopsy test done soon along with scans which will guide my next steps.
MG: What would you recommend other patients with your diagnosis?
IH:
- Insist on a blood biopsy
- Get a second opinion from a major cancer center
- If EGFR+, then make sure you get a second opinion from an EGFR specialist
- Understand the side effects of radiation treatments and make informed treatment decisions
- Connect to online patient sites with your type of lung cancer
- Get as much exercise as possible; walking helps rebuild bones with cancer
MG: How was your medical team’s attitude toward your diagnosis and subsequent treatment and what would you recommend they do better?
IH: I have a treatment team at MSK where I have received all my treatments but I also have a team at UPenn where I get my second opinions as well as at Yale where I also get second opinions and at Mass General. They have worked collaboratively regarding my treatment which has been wonderful. I feel like all of them have my best interests in mind.
MG: For Neo, as patient care and diagnostics is top priority in terms of our mission, we look for ways to improve ourselves and what we provide. As a patient, what could biomarker testing and trials companies such as ours, keep doing and/or do better?
IH: A diagnostic company like Neo and as a patient like me, we need to be aligned. For someone like me in my mid-fifties, no one talks about the side effects of treatment—sores, brain swelling, the high risk of blood clots. Companies like NeoGenomics Laboratories, Inc. should highlight the patient ask, as much as advocate for better diagnostics—I am a huge believer in liquid biopsy testing to guide treatment. And also, you can’t fight the disease if you aren’t in touch with it—which is why I believe pain killers need to be used sparingly. While it is too late for me, a major issue today is lung cancer diagnostics—you have to be over 55 and have a history of smoking to qualify for screening—the screening guidelines exclude me and the 65% of newly diagnosed lung cancer patients who are never smokers. That is just not acceptable. Companies like Neo can highlight our predicament and provide the diagnostics that can lead to disease detection and progression management quicker.
