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still stable--the hard way!


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This has a happy ending, but I'm going to tell the whole story anyway. I went for my regular CT scan today, to be followed by a visit with the pulmonologist to see if we could figure out why I've had a persistent cough (didn't appear to be cancer-related). The pulmonologist came in, asked some questions, examined me, and then told me he thought the cough was due to GERD, which had come back due to my giving up Prilosec so as to give me the best shot at absorbing Tarceva.

However, he also told me this his eyeballing of my scan seemed to show significant progression of the cancer in lymph nodes in the chest. Since my oncologist was seeing patients just across the hall, he went over to consult with him. After an hour, the oncologist's resident came in, said he'd heard there was apparently significant progression, and that we needed to discuss the next treatment. I was, of course, ready to present my Cisplatin/Gemzar/Avastin plan with all of the rationale for it. He listened, rebutted some of it, and then came up with the closing arguments that "We don't do things like this outside of a clinical trial, it's not good for advancing science to do one-person clinical trials, and (the topper!), I can't imagine your insurance company would pay for that." He told me my main options were Alimta (the only FDA-approved treatment I haven't had) or a clinical trial (and he suggested the latter might make more sense since there was something to be said for a more aggressive treatment in my situation). He then when to find his boss.

When the two of them returned, the oncologist threw my written argument (I'd sketched it out in the hour I had waited) on the desk, and said, "Why would you want me to put you on this dangerous combination of drugs when you're stable?" I was flabbergasted. He told me that he and the resident had just measured everything out, and that had then confirmed their measurements with the independent findings of the radiologist. Everything was stable, except that an area of ground glass opacity in the right upper lobe had grown from 5mm in August to 7 mm today. We decided I could live with that, cancelled next week's appointment to get the results, and we will rescan in mid-January.

In the car on the way home, it suddenly hit me that the 5mm/7mm thing wasn't the whole picture. It was 5mm in August and thought to be probably inflammation. It was 10 mm in September and thought to be maybe inflammation, maybe metastatic. Thus, it actually shrunk from September!

Sorry for the long-winded story. It was quite a roller-coaster day.--Neil

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