In the last of my fall commitments I travelled to Halifax for the CCRC (Canadian Cancer Research Conference.) Before I left though I had a meeting with my oncologist. This time I didn't get the expected "remarkably unremarkable" comment from him.
Progression is too strong a word for the news that I got. I have a small enlargement - mere millimetres -in a lymph node near the root of my right lung. My initial treatment targeted this area. When the oncologist compared it back to my scan from March there was some growth. After laying out the implications for me, the first step is investigate. I have known (and hoped would be available) that re-biopsy would be the next step all along. He gave me a requisition for a serum test for an additional mutation (T790M) that occurs in 60% of EGFR patients. The serum test is not exactly the gold standard. Even if it is negative, it won't mean that I don't have the mutation. Hence the main reason to get some tissue. That will happen via an ultrasound guided endoscopy on November 24th.
There are other reasons and possibilities. The growth could be benign - an enlargement from infection. This isn't likely as it has been slowly growing since March. It could be metastasis from my breast cancer, or it could be mutated lung cancer. The possibilities for treatment here would be osimertinib if the T790M mutation is present. If it is not I would move to an induction phase of chemo (carboplatin and pemetrexed) every three weeks for six cycles. Then I would be on maintenance pemtrexed like a few of my fellow travelers. Vitamin B12 and Folic Acid were prescribed to prepare me for the chemo if it becomes necessary. Because of the previous radiation in the area it is unlikely that we will try it again.
The worst case is that there is transformation to SCLC (small cell lung cancer.) This is a nasty neuro-endocrine version of lung cancer that is quite difficult to treat. I have seen how fast it moves in a few of my travelling companions. The good news is that this transformation is rare - less than half a percent of EGFR patients see it.
There is immense irony in a request I received the day before. The organizers for WCLC 2024 (World Conference on Lung Cancer) in San Diego in September asked me to provide a patient perspective talk . The topic? "Chemotherapy in EGFR Patients." I didn't need the personal experience to speak on it but it looks like I may get it.
I went home, notified a few close friends and family, and then packed my bags for Halifax. I won't say I was completely successful in putting it out of my mind for the conference but largely I was.
Part of the reason for my travels were to spend time with my youngest son who is stationed out here. He lives in Kentville, just west of Halifax in the Annapolis Valley. I had the immense privilege of seeing him in his dress uniform. It was the first time after his twelve years in the Canadian Forces. While it was the coldest Remembrance Day service I can remember, the hymns, prayers and pipes stirred my soul as usual.
I won't bore you with the nit-picky details of CCRC. There were some real highlights for me though. Lung cancer is moving to front and centre in the cancer research realm. The opening plenary on liquid biopsy had two of five talks based on lung cancer. Then the closing plenary had one talk of three focused on lung cancer and radon. The CCS (Canadian Cancer Society) Breakthrough Grant was mentioned repeatedly in other sessions as well. Fund agencies are moving to an awareness of the need to fund research in lung cancer. That research isn't focused on prevention (ie anti-smoking campaigns.) It is expanding to treatment and early diagnosis (screening). Now to get them to pay attention to basic biology and survivorship.
A second highlight was being asked at the last minute to co-chair a session. The topic was Advances in Immunotherapy with Dr Tak Mak. Participants packed the session as he is a rock star of the immunotherapy research world. For me the amazing thing was that he made this complex world understandable for a lay listener. He used simple metaphors and personal anecdotes. His stories of being told "no" and persevering anyway were inspiring to say the least. And the name dropping of Nobel Laureates made it all seem like fantasy.
The final highlight came with a clear plan forward for a pet project of mine. Establishing patient research priorities is a natural outcome of the work I have been doing. Meeting Ambreen Sayani in Singapore and again at the Equity Measurement forum started this crystallization process. She presented several abstracts and posters at CCRC around equity in lung cancer screening. The equity piece is fascinating work on its own. But her broad connections and passion for the patient priority project bode well for making it happen. I discovered another organization (Multiple Myeloma Canada) used the JLA ( James Lind Alliance) process to develop strategic priorities. The JLA provides a clear call to research action and funding. I will let you know more as the details and commitments emerge.
There were so many little conversations that were encouraging as well:
- Being introduced as "the bad boy of patient advocates." I think I'm making an impact.
- Researcher after researcher coming up and thanking me for my openness and my advocacy.
- Seeing fellow advocates coming into their own as they co-chaired sessions and presented posters and talks.
- Diving into the deep details of research and seeing the links from breast to lung cancer (prolactin - looking at you.)
- Fascinating discussion on the ethics of patient advocacy and research.
- Meeting many many people that I have only met on zoom face to face.
One of the poignant joys of my trip is the opportunity to spend some time with a fellow mentor. He is from CancerConnection and is coming to the end of his journey. His story is not mine to tell to but in this instant it has intersected with mine in powerful ways. Someone asked what we talked about. Donairs and the Nova Scotia history; MAID and quality of life - cause I get it; cheese curds in poutine; and why he doesn't want his granddaughter's memories of him to be like his of his grandfather were a few of the wide ranging topics. A mixture of pathos and laughter - heavily weighted to laughter - it is such a privilege to spend time with him. Thank you.
Centring the deadly nature of lung cancer and cancer in general has been the theme of this trip. Talking to a fellow advocate before the meeting, she described me as vibrant and articulate. I still have trouble seeing myself that way but I know that I have little to lose in speaking up and making my voice heard. My prayer is that I will say things that remove the stigma around this disease and start saving lives.