Wednesday, June 4, 2008

What's Up With the Doc 14? - or The Definition of Tolerance


OK, I've talked to my Albuquerque oncologist friend (AOF) and processed all of the information from the last couple of weeks and I think I'm ready to recap for all of you breathlessly waiting. I can't believe I keep crying every time I talk to AOF. Maybe it's because he's on the phone and not in person and it's safe with him, I don't know.

Basically, the MSK guy said that for people responding to the Carbo/Taxol/Avastin (meaning tumor shrinkage, not just stable disease) his policy is to treat to tolerance. AOF concurs with this. But here's the reason I love AOF so very much. I asked him what the most number of treatments of Carbo/Taxol/Avastin he's ever administered and he said 10. Which made me whimper. And then he said, "But I never tell my patients I'm treating to tolerance. I tell them let's do 2 more and see where things stand." He said I have to live in the 2 cycle place in my head and then he asked me what problems I'm having with the chemotherapy. I said that it's those 3 or 4 days of pain after the chemotherapy that just really do me in. He responded that it should be better treated because the tolerance reasons to stop the chemotherapy are neuropathy, fatigue (as in can't get out of bed for more than a couple of hours a day) and weight loss. Everything else that I don't like should be treated as a nuisance side effect. He told me to take narcotics every night while the pain is bad and pump up my bowel regimen. He said what everyone else says about the neuropathy - that I'm not likely to get any of that back so not to let it go too far. I've started with a little numbness in my toes over the last couple of days and intermittent fingertip tingling. I don't want to let it get to the point of interfering with examining patients, writing, typing or playing the piano. As for the feet, I need not to let it get to the point of stumbling. The fatigue and weight loss are not issues for me so the neuropathy is likely to be the thing that determines just how many cycles I get as long as I keep responding.

Once we're done with this chemotherapy the MSK guy says that their policy is to start the Tarceva right away, not wait for disease progression and my oncologist agrees with that. That was new to AOF but he sees why they do it and would go ahead with it.

And then we got to the crying. Because, while the Tarceva doesn't sledgehammer the entire person like the Carbo/Taxol does, it has its own little issues (rash and diarrhea) and I would still be on the Avastin (bloody noses, bleeding hemorrhoids and a chronically nonhealing port wound). So, basically, I don't get my old self back. Ever. While treatments are working I have a chronic disease and get to live with the side effects of the medications. Once treatments stop working I get the effects of the illness and, pretty quickly, I lose the whole shooting match.

AOF told me to stop being a doctor and start being a patient. He said to try to live my life in 6-8 week increments (6 while I'm the C/T/A and getting scans after every other cycle and 8 once I'm on Tarceva and getting scans every two months). He reminded me to optimize the right now because it's all any of us really has. And he tipped his hat to me for keeping at the fight.

So today the pain is almost completely gone. Tomorrow I get to go see friends in Illinois. Saturday Emma comes home for a week. The sun is shining and life is good.


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