Sitting listening to Celine Dion "O Holy Night," I'm reminded what an incredible season this is. Singing the choir Christmas cantata this morning (https://www.youtube.com/live/D_K27cW6fiQ?si=MrgjArbvNkhnclys&t=3180) raised chills on the back of my neck several times. What a blessing music is in my life! I'm here singing when so many others in my lung cancer world are no longer here or are struggling with shortness of breath.
The last few weeks have been a roller coaster. I don't usually withdraw or find myself "pensativo" (thoughtful) as I have recently. I wrote my last blog post in a coffee shop over in Maple Ridge,and then I drove home. I met online with the BC Lung Cancer Support group run by Lung Cancer Canada. I headed over to let the lab have another blood sample in preparation for meeting with my oncologist. As I walked back in the door to my apartment, my phone rang.
"Hello, is this Mr Pratt? Can you talk?" It wasn't the change of appointment that I was expecting when I saw BC Cancer on the phone ID. It was my oncologist. "I have good news, your T790 was positive." Tears filled my eyes. I'm thankful that I have an oncologist who picks up the phone when he has good news. And more importantly, grateful that I have the extra mutation that means I can move to osimertinib (Tagriso.)
He wanted me to stop taking the daily afatinib pill that in four and a half years I have missed taking only once. Of course I calculated it - 1,730 pills. With a half life of 37 hours, the drug needs time to wash out of my system so that I could begin the next one.
I felt odd waking up at my normal 4:00am and only take the synthroid that is a result of a previous treatment. A phone call with both the pharmacist and oncologist the next day sorted out the logistics of starting the new drug. There were preliminary tests, training and followups to set up. This is a benefit of the new team-based approach that BC Cancer has recently adopted. No back and forth, it was all coordinated in one call.
I'll start osimertinib on Boxing Day. For those who may not be aware or remember this is the better drug that I was denied four and a half years ago. BC Cancer approved the funding for osimertinib as standard of care. But they put a rule in place that said "Any one who had been on afatinib for more than six months would continue on it." I had been on it for eight months... this launched my journey with advocacy. Contacting various agencies and Astrazeneca taught me the economics and complexity of drug approval and funding in Canada.
A few years ago Astrazenca contacted me to help them celebrate the 500,000th person receiving the drug. When I explained that I wasn't on the drug, my contact told me that was exactly why they wanted me there. My purpose was to remind the sales force that there were still people who should be on the drug who were not. Now I am (or will be on Boxing Day.)
There were some baseline tests required before I actually began the new drug. Organizing an appointment for the blood tests wasn't hard. I love being able to do that online. The ECG I needed was a wee bit trickier. By the time I got to the Cardiology unit at Surrey Memorial Hospital, they had closed. A knowledgeable clerk directed me to Jim Pattison Outpatient Clinic. I got there just as they were closing, but they fit me in.
I had to chuckle when the ECG student trainee asked me to pull up my shirt to attach the electrical leads. She got a wide eyed look of surprise when she realized I had no nipples to landmark for lead attachment. "Breast cancer will do that to you." I said, and that started the whole "men can get breast cancer" conversation.
I have been doing a lot of work recently on the administrative burden faced by physicians. I have a lot of stories about the challenge that electronic health records pose. When the pharmacist asked me to bring a physical copy of the ECG with me to the planned training session, I wasn't surprised. What surprised me though was that there was no way for me to get a copy. The whole thing was digital and when the clerk went to pull it up she got a message that it was still "processing." I would need to go to health records and fill in the paperwork to request a copy. And then she dismissed me with "the pharmacist will be able to access it online."
At my "chemo teach" session (he apologized for the name - acronyms haven't caught up to the shift in treatments.) The next morning, the pharmacist laughed and told me that he didn't actually have access to it. Fortunately my oncologist had been able to access an older one the day before. On the basis of that he had approved the treatment. The pharmacist suggested that might be something to check in my next oncology appointment.
My session was a lot of fun. About half way through he said, "these are definitely some of the more interesting questions I have had." At one point he said, "you might know more about this than me." Several times he had to turn to "Dr Google" to get an answer. I did let him know that there was a great podcast on IASLC on the chronic toxicities. (https://www.iaslc.org/iaslc-news/lung-cancer-considered/chronic-toxicity-targeted-therapy .) This is a new field of study since the drug has only been approved for five years now.
I got a solid answer about why I need to stay away from grapefruit. Furanocoumarins slow down the drug breakdown in the body leading to a potentially dangerous build up of the drug in the body. And there are other fruits included in this ban - starfruit and two of my favorites, pomelo and Seville orange. (https://www.cancercenter.com/community/blog/2019/08/whats-the-deal-with-grapefruit-juice-and-certain-medications)
So, in my medication holiday I'm bingeing on them as they were always one of my favorite Christmas breakfasts. I bought a pomelo too, just for fun. I also learned that raw fruits and vegetables due to their high fiber can also be a problem. And I'm back to my old mantra - Variety and Moderation.
All in all I'm pretty excited. I'm enjoying the brief relief from acne/rash and diarrhea that the washout period is giving me. Of course I will have to see how my body tolerates the new regime.
There was a funny conversation around prognosis with my oncologist. Osimertinib became standard of care quickly. So there are not a lot of people in my situation and the research is scarce on moving from one TKI (tyrosine kinase inhibitor - the class of drugs these belong to) to one that is effective against T790M mutation. Dr Tony Mok, an oncologist I heard in Singapore, turns out to be the Principal Investigator in AURA3 (a small study investigating this transition) which showed that the median tumour progression for patients on second line osimertinib with a T790M mutation was 10.1 months as opposed 3.4 months on the chemo combo.
Given the excellent results that I had on afatinib, the expectation is that I will respond well here as well. So, I keep up the runnning and exercise, the careful diet, and getting lots of sleep and I'm hoping to do well.
I've had a few of the "you 'must be sticking around for a reason' conversations." I'm grateful for the reprieves I've had. I do have to chuckle though, this is the second time I have seen progression after buying a new computer. As I have pointed out "correlation not causation."
This news has been an excellent Christmas gift. While not seeing progression at all would have been the best, for my journey, this is the best outcome I could have hoped for. I'm excited to see what the future holds for me.