Friends and Family,
For the past month or more it has become increasingly difficult to breath, which has been a major concern for both Genevieve and me. My pace on our daily hill walks is much slower, and our mild yoga workouts seem more like cardio boot camp lately. I wanted this to be anything other than progression.
Leading up to last week’s CT and appointment with my oncologist, I tested myself for Covid, hoping to find an alternate culprit. No dice. Next, I looked up symptoms for RSV, but that wasn’t a fit either. Genevieve and I both were losing sleep, but held out some hope, even if we couldn’t think of what else it might be.
Our worst fears made it easier when my oncologist told us the scan results were unclear. None of the cancer spots had grown, and one in the liver had shrunk. On the other hand, some fluid has built up in my lungs. But the biggest puzzle was a cloudy haze on the scan that looked a little like the Milky Way.
It could be cancer, but it could also be inflammation caused by the amivantamab. If it is inflammation and I were to get another amivantamab injection, it could cause a lethal pneumonitis. Either cancer progression or inflammation would mean I was done with this clinical trial. But there is a third option. It could be some kind of infection, possibly bacterial. That would be treatable, and I could stay on amivantamab.
I was in the first generation whose parents discovered that television made a great babysitter, which is probably why I watch so much TV now. I grew up watching Let’s Make a Deal. I want to play that game now and say, “I’ll take Door Number Three, Monty.”
Except I don’t get to choose which door opens. For that, I will have a bronchoscopy this Wednesday and we will wait for the results.
But not everything is out of my control. Since I can’t have amivantamab as scheduled, the cancer will be growing until this is resolved. I prodded my oncologist to take a liquid biopsy sample last week and send it out for genetic testing immediately.
If I do need to find a new treatment, last week’s biopsy will shorten the time I am without cancer meds by about two weeks, which will limit the chance that the cancer will flare out of control. I share this part of the story with you because it is so important to take every opportunity to take fate into your own hands and be your own advocate. Sometimes, like needing to find a new oncologist, the need to do something can be obvious. Other times you have to think through every angle and see if there is more that can be done.
Here’s another one. The trial has a rule that makes sense from a bureaucratic perspective but is clinical lunacy. If you miss an injection date by a week, you must skip a cycle and wait until the next month. I’ll miss this window., but I wondered. If being a week late is OK, could I be a week early? I would be untreated one less week, assuming I can restart the treatment at all. I asked my trial nurse if we can schedule a tentative appointment a week early and cancel if I can’t stay on the meds. No word back yet, but this is just one more way to fight for my own health.
I hope those of you with cancer or other health problems will take heart, and that if you don’t have health problems, you keep it in mind. Everyone has health issues at some point.
Love,
Dann
