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After seeing Dr. Shapiro on Wednesday (Dallas Presby) and before seeing Dr. Eng on Thursday (MDAnderson), the two of them had chatted and figured the chemo I needed to take next is Erbitux+irinotecan. Erbitux (a.k.a. cetuximab) is the drug that landed Martha Stewart in prison relating to its FDA approval and resultant effect on stock price. With FDA disapproval, the stock price was supposed to fall. The next year it was actually approved because of how well it works. "It works" in the area of cancer is not the same as in electrical engineering - I think around 10-15% of patients see response. One great thing about Erbitux is that it seems to "reinvigorate" irinotecan when used in combination - giving irinotecan a new chance to work when by itself it had stopped doing so.
I was not too happy about this decision - I was not ready to give up on one or both of the previous chemo protocols I have taken. So I started asking some hard questions about this in my meeting with Dr. Eng. You might say I argued. Hard, even. Christine was shocked. I think I was, too.
But what is taboo when your life is at stake? And what harm are questions seeking understanding anyway? The way I learn and enjoy discussion with many of my friends and coworkers is to ask hard questions, often playing devil's advocate. To me, it is a sign of respect. And it seems to generate the best overall ideas. But not everyone likes it. Some people hear it as disrespect. Or a waste of time. But like I said, when life is at stake...
To my pleasant surprise, Dr. Eng was not taken aback at all. She took all the time I needed - and she listened well, as evidenced by her restating my questions better than I could express and the fact that her answers directly addressed these questions. I expect and pay for medical treatment. But I considered this engagement a bonus.
This is not to say she did not counter me. She said that the model for understanding how chemo works is that when you have finished its prescribed course, and the remission is short (in my case, really only 4 months), then you consider that it is losing its effectiveness and you need to move on to another drug. Back and forth we continued in this surreal interchange. And then, as surprised as I was that the debate was even taking place, I was more surprised that she began to reconsider. She even began to agree.
"Wait, wait," I protested. "You're the expert! I have no idea what even I've talking about." Surely the instincts of Dr. Shaprio and Dr. Eng have more validity than my novice way of thinking. On the other hand, we are all humans. I have been following one case for three years, thinking about it daily. They had to digest a ream of my records in a short time while treating dozens (hundreds?) of patients.
In the end, Dr. Eng did not simply say "ok". She took my concerns and fashioned a counter-offer. I was thinking along the lines of the more recent protocol, which kept the lung nodules out of the CT scan for the many months I took it. She thought we should instead go with the original 2003 protocol: 5FU + irinotecan ("FOLFIRI" in oncolingo). Maybe there was still some oomph left in the irinotecan. And she wanted to go with intravenous 5FU - it will be easier on my liver than the oral form. So maybe I won't have to discontinue it as I had to do with the Xeloda in Spring 2004 for that reason. I asked her several questions trying to discern whether this new plan was some sort of appeasement (i.e. let the crazy guy do what he wants). That's not it, she responded. She thought this was a good plan and drew it out in a flowchart that reminded me of a DLP system diagram. So I was convinced.
Here is the custom protocol: 8 straight weeks of FOLFIRI in 14 day cycles, immediately followed by a CT scan. If the nodules remain stable or reduce(!), keep the chemo coming. If not, we haven't wasted too much time and can try the Martha Stewart recipe. Dr. Eng seemed eager about the plan. I was encouraged myself, as odd as that may sound considering the overall bad news. It was a good thing.
I then spent an hour at Salento – a coffeeshop in the Village with wireless – while Christine walked around. As the live jazz guitarist played, I poured over my blog, which is becoming a great tool as my memory refresher. As I read, I became even more convinced this is a worthy plan. Irinotecan, I was reminded, was involved in the dramatic destruction of my tumors back in 2003. Again I was reminded how far we have come. In just 2 rounds, my primary tumor was found with surgery to be reduced to 20% viability (translate: 80% dead). And in 3 more rounds, my huge liver tumor had shrunk so much that my surgeon said “stop the chemo, this man is surprisingly fit for surgery”. Following the liver resection, Dr. Hoff took me off the irinotecan because it had done its job. He instead had me take the Xeloda alone to prevent further tumors. So maybe that irinotecan was pulled from the lineup with some hits left to give. Time to pinch hit. (Replaying a batter after being pulled is not against the rules. In fact, I’m figuring out there aren't really any rules here). I'm hoping irinotecan will be my Kirk Gibson.
Yesterday, I took the irinotecan at Dallas Presbyterian. Today I am reclining at home connected to the 48hour fanny-pack pump of 5FU. Dr. Shapiro stopped by my chemo chair yesterday during the irinotecan drip to chat. Apparently he and Dr. Eng have been talking. "Is Dr. Eng just appeasing me here?" I asked. "No, he assured me. We actually like the feisty patients". Cool.
Posted by Greg at April 11, 2006 10:17 AM | Comments (17)