I found this board while looking for some treatments for my rather dry, red and scaly throat skin. My name is John, but my friends call me "Wudman" (Wood-Man). I was diagnosed in mid December with a T3 2Nb squamous cell cance at the very base of my tongue. In November my right submandular lymph node went on a growing spree, not stopping until it was the size of a grapefruit. Eventually the left side showed unacceptable growth as well. There was a tumor at the base of my tongue, approximately 12cc that was visible via endoscopy. All tests showed the Cancer had not spread to other parts and most of the base of the tongue tumor was on the surface, blocking my epiglottis.

On January 5th 2005, I started a regime called RADPLAT, which called for 4 Supra transfusions of Cisplatin while inpatient and 35 concurrent radiation treatments over a seven week period. "Supra" means that up to 5 times the normal full body Chemo is delivered directly to the tumor arterialy. The RADPLAT regime called for a Tue-Thur hospital stay so I could be hydrated prior having my Chemo delivered via intra-arterial catheter to the artery supplying the tumor. Another substance called Sodium Thisulfate was delivered right before the Cisplatin via a central port. That binds up the Cisplatin once it had one pass at the tumor and neutralizes the platinum's effect on other organs before passing it through the kidneys. I was also told that the option would have been a rather drastic surgery that would have been "grossly deforming" and leave me with some long term issue when it came to speech and swallowing.

I will have to admit when this started, I was pretty bummed. Not so much that I had Cancer or that it wasn't something I was supposedly at risk for. I was bummed that to get this treatment I would have to commute 90 miles one way. I had Cancer and that wasn't going to change, so my attitude was to get through the treatment and educate myself so I would be able to ask questions and monitor all aspects of my treatment.

Other than my new "friend" tinnitus and some high frequency hearing loss, I weathered the Chemo part well. Around the third week I opted to start a liquid diet because I was losing weight to fast attempting to eat normal food which by now tasted like cardboard and hurt going down. Vanilla Boost+ and Ensure+ have help me stabilized my weight loss after I dumped 23 lbs. I was at 124% of my ideal body weight when I began.

I have 7 of the 35 radiation treatments left and they are getting narrower in their targeting. The skin on my neck is the most visible sign that this has been rough at times. I can still swallow, have kept most of the Mucositus at bay through diligent mouth care. Having spent a lot of money on my teeth and having good oral care practices prior to the diagnosis, I kept all my teeth as well. I will have to see if that was a wise decision in the long run.

Right now the issues are the soreness in the far back of the mouth which seems to peak in the mornings. I keep my little "spittoon" handy wherever I am because my saliva is pretty thick right now. There was some yeast developing, but a swish I was given seemed to put that down pretty quick. Other than three surface sores, there isn't a lot of trashing visible in the mouth, but it is still sore. I think most of that is from the occasional gag reflex generated by thick mucous spit hanging down in the throat and the guttural flexing of the region sometimes needed to evacuate it forward.

The one lesson I learned from this that I think is the most important is to become very educated about what your Cancer is, who is treating it and what the regime is going to consist of. By asking questions, taking notes and insisting on being completely informed, I was able to "guide" how I was treated, not only medically, but as a patient and a human being. It also helped me build allies in the various areas that I was treated in from Radiation Oncology to Angioplasty to the nurses on the floor. It also seemed to earn me some respect with the team that is leading my treatment. What I mean by that is that I never got brushed off by a doctor, no matter how many questions I asked. They seemed to be prepared to explain minute details if I asked. I not only asked questions but at times needed to make a critical analysis of what went right and what seemed to be sloppy. The bottom line is that when it comes to your welfare, you better not just sit back and hope that others will be 100% diligent to your case. The more information you have, the better your chances are to maintain some quality of life during the initial treatment stages.

So now I am on the downhill of my radiation treatments. The tumor in my throat is not visible and the lymph nodes have completely melted away to the touch. That is a long way from January when my jaw was grapefruit sized and I had a mass in my throat that was interfering with swallowing.

I will have to admit there were times I thought this would not be something I could see through. There have been short moments bordering on the edge of terror, induced by the descriptions given by doctors and other health care givers of what was going to happen during treatment. That was especially the case every time I was wheeled into the Angioplasty room to get a catheter threaded up from my groin, to my throat so they could deliver the chemotherapy. The fatigue during the firsts four weeks was oppressive and caused some depression, but keeping myself hydrated seemed to reduce that. My mouth is a pretty miserable place right now and I sure do miss eating normal food, but overall, I know I will survive this.

So to you who are in treatment, I say what my Grandmother used to tell me, "keep your plow on your shoulder". That means you have to push on and be your own best friend. Let others help but remember that your Cancer will impact them as well. Do whatever it takes to reduce the impact of the side effects. You have to be a diligent, especially about mouth care to reduce the well documented side effects. It doesn't always work and I am sure there will always be some kind of PAI (okay PIT pain -in-the-throat) to manage, but it gives you something to do other than feel bad about the cards you have been dealt.

I have been fortunate that family has traveled from as far away as California to drive me the 3 hour round trip to radiation and local friends are available to fill in occasionally. I have been blessed that my significant other let me move into her house to bring me 45 (one-way) minutes closer to treatment. I have many people to thank for the prayers and well-wishes, some I know, some I have never met.

Cancer is ugly, but you have to get past the diagnosis and thoughts of your own mortality to find away to live with it. I figure once you have it and even if you get it out of your system, you will live with it or it's legacy. Accepting that is a step towards a better quality of life.

My greeting probably went a bit long, so I apologize for my inability to just say "hello". Best wishes to all that are either recently diagnoised, in treatment, surviving and those who are supporting those who are. I wish the best results for you!