I'm not trying to depress everyone and I'm not necessarily giving up , but it's been a long year for me. In 2003, I had about 1/2 of a huge (approx. 6cm by 5cm by 4cm) non-malingnant tumor (oligodendroglioma) surgically removed. I deferred radiation at that time and went back to work. The brain tumor was quiet until this year, when it resumed growing. I underwent 31 radiation treatments in February and March, and resumed working. Actually, I was working that whole time when I wasn't at the Rx or hospital. I was also taking Temodar during/after radiation. In May, I had an X-ray because I couldn't shake a cough. I figured it was pneumonia. Nope. 7cm and 3.5cm adenocarcinoma tumors and into the lymph nodes. Staged at IIIB. Started radiation late May, finally stopped working June 16, and finished radiation in July (38 radiation treatments on the lungs, 69 total for the year).
I started chemo about 6 weeks later and was supposed to have 3 sessions w/ massive doses of taxol and carboplatin. I got through 2 no problem except the cough kept getting worse and the chest x-rays were completely cloudy. Discontinued chemo. We tried a couple of antibiotics and now I've been taking prednisone( a steroid) for four weeks. The x-ray earlier this week showed 2 small (less than 1 cm) brain mets, but one of them is on the brain stem. We're in wait and see mode right now, to try to get the lung stuff under control. It's been a long year.
My object is not to see how long I can live under any circumstances. I therefore don't think the cyberknife is a very realistic possibility given the location of the tumor and the implcations it could have even if "successful") such as personality changes. I don't believe that Temodar really did any good. My brain can't take any more radiation. That leaves chemo. Tarceva appears to have more side effects than I'm willing to tolerate for the minimal benefit gained. Frankly, I can endure the pain (I have a relatively high pain threshhold) but I'm tired of feeling like crap, tired of doctors, tired of hospitals, tired.