Updated: Oct 26, 2018
Written and submitted by: Scott MacDonald
My wife Tricia recently passed away. She was diagnosed with stage 4 lung cancer six years ago. People look at me and my four children and wonder how we can be brave and poised in the face of such a devastating loss. The answer has a lot to do with our perspective. I look at it like this – if you were playing the odds based on the history, Tricia should have lasted about one year. At the time of her diagnosis we felt far from brave and poised. We were scared and distraught, but the exceptional scientific and medical breakthroughs in lung cancer treatment enabled our family to live and thrive together for an extraordinary six more years. Here is Tricia’s amazing story.
In the summer of 2012, Tricia developed lower back pain – she thought, from trail running in the woods behind our home. After a couple of months of physical therapy failing to alleviate any of the pain, a scan showed a tumor in her tail bone. A subsequent chest scan revealed a mass in her lung. A biopsy of that mass confirmed that Tricia had lung cancer – stage 4 lung cancer at the age of 44.
We didn’t expect that someone could get lung cancer if he or she never smoked. We didn’t know the prognosis for someone with stage 4 lung cancer. An internet search revealed a 5 year survival rate of 2% and a high probability that if her course followed the typical path, she would be looking at around 12 months left of life.
With four children 8, 10, 12 and 16, this was the scariest moment of our lives. All of sudden Tricia was left contemplating how many more of the children’s milestones she would be around for, how she could prepare the children quickly for loss of their mother, how much she would suffer from the disease and the side effects of the treatments. It was frighteningly real.
Fortunately, the first oncologist Tricia saw in our town had just finished her fellowship at Mass General Hospital (MGH) and Dana-Farber Cancer Institute. She knew of the ground breaking work the thoracic team at MGH was involved in, particularly with respect to women, non-smokers diagnosed with lung cancer. The more experienced doctors in her practice suggested that Tricia start radiation immediately. It was not well understood in the medical community yet that Tricia’s condition was likely to fall into the generally rare case that her cancer was being caused by an identifiable and treatable molecular mutation. The young oncologist referred Tricia to MGH and expressed “she had a good feeling” about Tricia. In her fellowship she had seen the amazing successes new targeted drug therapies were having in the fight against cancer.
We met the team at MGH in Boston. They explained the tumor tissue was undergoing molecular testing to see if there were identifiable markers that could be treated with targeted drugs. Somewhat counter-intuitively to us, we were asked to wait about 6 weeks until the results came back. In the meantime, Tricia got radiation on the tumor in her sacrum to relieve the immediate back pain. When the molecular test results came back, it turned out she had the most likely driver for her situation, an EGFR mutation. This was good news. There was already an FDA approved drug called Tarceva that was effective in inhibiting the EGFR mutation. Tricia’s first scan after a month on Tarceva showed that the tumor in her lung had shrunk about 50%. A remarkable result, considering the side effects were limited to upset stomachs and occasional skin rash, both of which were manageable and allowed Tricia to continue with her normal life.
Then about 10 months later, scans showed the tumor in her lung was growing again. Fortunately, there were no other signs of tumors anywhere else. The oncologists believed that it was likely Tarceva was still working generally although the tumor in her lung had developed resistance. They agreed that Tricia should undergo surgery to remove the tumor which was done successfully through a lobectomy in December 2013.
The tissue from the tumor that was extracted was tested again and showed that the cancer had found another path to mutate called T790M. Again this was good news. A trial for a new targeted drug had started, AZD9291 which targeted T790M as well as Tricia’s initial EGFR mutation. This gave Tricia’s oncologists another quiver to try if and when the Tarceva was no longer working sufficiently. That moment came in June 2014 when scans showed that Tricia had developed a tumor in her liver. Tricia entered the AZD9291 trial and her first scans showed about a 50% decrease in her liver tumor. AZD9291 was working. With minimal side effects, Tricia was able to live a normal life, including international travel, family vacations, and everyday activities to support the children growing up.
Lung cancer can be incredibly complex. Tricia’s cancer was looking to mutate to find another path to grow while the scientist and researchers were trying to understand how and what could stop it. About a year later scans showed a tumor in Tricia’s lung that was growing very close to her heart. The tumor in her liver was not growing, and like before, there were no new tumors. It appeared yet again that the targeted drug was generally blocking the EGFR and T790M even though this one spot had developed resistance. Surgery was not considered viable. Chemotherapy and extremely precise, high dose radiation was the best option. Because Tricia was in a trial, it was not possible for her to stay on the AZD9291 targeted drug.
Thankfully, the chemotherapy treatment and radiation was successful in shrinking the tumor in her lung. She remained on a maintenance chemo treatment called Alimta which worked well to contain the growth of the tumor in her lung. However, without the T790M inhibitor, the tumor in Tricia’s liver started growing again in June of 2016. Tricia’s primary oncologist, Dr. Zosia Piotrowska, had recently authored a ground breaking paper that showed EGFR could mutate in multiple ways at the same time and pointed to potential benefits of combination treatments. At the same time, the drug that had previously worked to shrink Tricia’s liver tumor had won fast track approval from the FDA and had recently launched commercially as Tagrisso. Dr. Piotrowska and the team at MGH agreed that a very viable option would be to allow Tricia to remain on the Alimta and restart AZD9291, now Tagrisso. The results were once again amazing and Tricia’s tumor shrunk. For the next year and a half, Tricia was able to remain on the combination of Tagrisso daily and Alimta every few weeks and continue living a normal, high quality life, nurturing her children into young adults.
In February 2018, the tumor in the lung was growing again. Because the Tagrisso appeared to be successfully suppressing the cancer in other areas, Tricia remained on the targeted drug but had to switch to a different chemo treatment, one that proved far less successful than the Alimta in controlling the cancer in her lung. A biopsy indicated that the tumor had mutated. Notably, the biopsy showed presence of MET amplification, another pathway that the cancer had found to grow around the targeted inhibitors. Because of the proximity to her heart and indications that the tumor had already invaded the sac around her heart, Tricia underwent precise, high dose radiation again on the tumor. During the first half of 2018, Tricia was hospitalized 3 times because of complications from the cancer and the treatments. Her scans showed the tumor in her liver was starting to grow. In May, the cancer spread throughout the air sacs in her lungs, making her condition extremely serious. She had already been preparing to enter a new trial at MGH that combined Tagrisso with a new drug that worked as a MET inhibitor. Unfortunately, there was no time to wait, so Tricia was put on Xalkori, a drug that Dr. Alice Shaw at MGH was instrumental in developing for fighting cancer caused by ALK mutation that also worked as a MET Inhibitor. Miraculously, the cancer throughout her lungs cleared up. As it turned out, the Xalkori allowed Tricia to have one more summer – making 2 trips to DC for our son who was beginning college in the fall.
Tricia’s lung cancer journey was on the frontier of cancer science. Throughout the process we anxiously awaited the next breakthrough that would allow Tricia to live. Fortunately there were many key breakthroughs for Tricia, however, in the end her cancer outran the science. For people diagnosed today, the outlook is brighter. With targeted drug therapies and immunotherapies along with conventional techniques, people are living longer with much higher quality lives. The fundamental knowledge and technology is in place. It is only a matter of time and money before science will make lung cancer a manageable and in some cases curable disease. My family is so grateful for the dedicated scientist and doctors that have devoted their lives to this mission and to the organizations like Lungstrong that are absolutely necessary to fund and accelerate their progress.