Gary,
I have not been on this forum in a while and I am very sorry to hear of your difficulties. I am now over 12 years out and had a bad episode last year that I now also believe was aspiration pneumonia. The swallow studies do show that I aspirate thin liquids and it was suggested that I use thickener, which I do when I drink Boost. About the only other liquid that I ingest is water, which I was told is generally not too harmful if it reaches the lungs. I am told that, since I cannot swallow without drinking water, the real danger comes from small bits of food which can flow into the lungs along with the water. The therapists at MDACC suggested that I enroll in their "swallowing boot camp" to improve my swallowing, but as I am still able to eat most any non-spicy food, and only have had a one day fever episode in the last year and a half, I have not followed through.
Your posts and those of others are causing me to re-think that decision. I did have a feeding tube during treatment and I do not want to return to that. As some may recall, I am also dealing with osteonecrosis issues in my jaw, where the skin has never quite grown back in the gum after a molar came out 2 years ago. My dental oncologist keeps trying things and I see him often, and so far no need for jaw replacement.
I have been very fortunate for the last 10 years or so and have no real complaints, especially compared to the hard times and suffering that many of you have experienced. We are lucky to be around 11 plus years later but it looks like bad stuff just comes with long term survivorship.
I wish all of you the best.

Danny



Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.