2016 July 31

Interview with Cyril

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Cyril the salamander takes notes during our interview.

I know people have been waiting for an update, so I agreed to an interview by my good friend Cyril the salamander. Normally Cyril hangs out on my work computer, but he's come home to look after me while I recover.

CYRIL:
So Elliot, how are you feeling?
ELLIOT:
Thanks for asking, Cyril. It's been two weeks since my gall bladder surgery on July 16, and I'm doing very well. Discomfort is minimal, and even the hiccups I occasionally get don't hurt they way they used to. I'll be transitioning from Percocet to ibuprofen this week, so I should be able to drive again soon.
CYRIL:
That's all good news! Any issues at all with recovery from the surgery?
ELLIOT:
Not really. I'm getting my appetite back and enjoying Indian, Peruvian, and Middle Eastern dishes. My doctors want me to start fattening up, since I have lost a lot of weight (about 14 kilos). The incisions are healing properly, and I'm sleeping well.
CYRIL:
What about that itching?
ELLIOT:
That was my one concern, because the whole point of removing the gall bladder was to stop bile from leaking into my bloodstream and irritating the nerves, which caused the itching. But post-surgery, my bilirubin levels were still ridiculously high. When I was first diagnosed, the total bilirubin count was 13—normal is in the range of 0.3 to 1.0! It dropped to 12, and the surgeon released me from the hospital when it fell to 9. But they wanted to keep tracking it, because if it didn't continue to drop I might need another procedure to drain the bile. I certainly didn't want to check back into the hospital, have another procedure, and possibly delay cancer treatment. Thankfully blood work on July 27 showed I was down to 5, so it looks like none of that will be necessary.
CYRIL:
What a relief!
ELLIOT:
You said it.
CYRIL:
So what are the next steps?
ELLIOT:
Once I've more or less fully recovered in another 10 days or so, we'll start cancer treatment.
CYRIL:
And what's that going to be?
ELLIOT:
Good question. We had our first oncology meeting July 29 with a George Washington University Hospital doctor. He confirmed the recommendation from the NCI researcher my NCCIH colleagues connected me with. Apparently pancreatic cancer responds best to chemotherapy, not radiation or immunotherapy. Recent clinical trial results of a four-drug regimen called FOLFIRINOX have been so promising that we'll only explore an experimental treatment if I don't respond to this standard treatment.
CYRIL:
How does this treatment work? I mean, what's the process like?
ELLIOT:
It's a six-month regimen, with drug infusions every two weeks or so. I'll be getting a “port” for the drugs, much like your car has a fuel line for gasoline. Larger doses will be infused over the course of two days using a small pump that hooks on to my belt.
CYRIL:
Any side effects?
ELLIOT:
Quite possibly—anything from nausea to diarrhea or neuropathy (numbness or tingling in the extremities). But the doctors say that treatment has improved greatly just in the last few years. Most of these possible side effects are “unacceptable” and easily treatable with medication. And my relative youth and good health suggest I should respond well.
CYRIL:
Glad to hear that. And now the $64,000 question: What's your prognosis?
ELLIOT:
Of course, it's impossible to say. We'll know after a few months how well I respond to chemo. The doctor describes the drugs' effectiveness as akin to the half-life decay of some unstable elements: Basically, the first batch of doses is expected to kill 90% of the cancerous cells. The second batch is expected to kill 90% of the remaining cells, and the third batch 90% of what's left of what's left. So really, we'll have a good idea of success after the first batch.
CYRIL:
I see.
ELLIOT:
The numbers are sobering. With this treatment, median survival is 11 to 12 months. That means only half of patients survive a year. The doctor did point out that many who do not survive are older (in their seventies) and/or heavy smokers or have other health problems. So there again my prospects are perhaps better than most. Assuming everything goes as well as possible, I still won't be “cured”. The best to hope for is to live with the cancer in remission. Remember, apart from the bile issue it's not actually affecting me right now. If we can just keep things status quo, I can conceivably live with a cherry-size tumor indefinitely. Also, we have a second oncology appointment with the Lombardi Cancer Center on August 10. We'll see if they have anything different to say.
CYRIL:
I guess that covers everything. Thanks for the update!
ELLIOT:
My pleasure. Thanks to you and all my supporters out there!