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!

a big welcome woodman, thanks for sharing your experience with us you sound so positive and strong,keep up the good work god bless, and take care regards maz

Welcome! Keep that positive chin up bub! The last week of rad & few weeks after we're the worst for me, but you will handle it fine! Don't set that plow down! Just push on through! Your friend, Erik

John, welcome to the site. Sorry you had to find us. Thank you for the in-depth description of your treatment. You certainly have "seen the elephant" as we used to say in the Army. As Eric noted, the next month or so may be the hardest part of treatment, but with your positive attitude, I'm sure you'll make it through. Are you anticipating surgery to get out the tumor areas after treatment? Were you on the peg to get your nutrition or able to eat by mouth? Hope all goes well for you as you finish up treatment and will add you to my prayer list.

Hello John; However you found this site it is great, both for you and for us. To deal with a vigorous and nasty form of cancer such as we have takes all the strength in numbers we can muster.
You are very knowledgeable about your treatment and that is a gift you bring to the group.
Hope we will continue to read your very informative posts, and I do pray for a good and lasting recovery for you.
I agree about the wonder of strong helpers! My sister was my personal nurse all through my latest surgical adventure. People like that have halos dripping off them and according to them, their best reward is our recovery.
Keep us up to speed with your return to regular living, in the meantime God Bless,
Fran B.

WOW! Welcome Wudman. Thanks for the detailed description of your treatment. Many here can relate all too well to where you've been, and where you're headed. Your positive attitude comes through loud and clear. I strongly believe that a positive attitude, and active participation in one's treatment are critical to success. It would seem you are on top of it.

Keep us informed as you progress.

Good Health

Chuck

KirkGeorgia and to anyone else that is interested:
No PEG here and they told me if I maintained my weight, it is unlikely they would do one the last week of radiation. Then again, I would have to allow that to happen since ultimately I would have to authorize the procedure. In any case, taking 5 Ensure+ or Boost+ by mouth has kept my weight steady as long as I drink enough water. There is some stinging deep in the throat, but washing down a glass of water cancels that minor discomfort. Actually the Ensure+/Boost+ regime goes down pretty smooth at room temperature. Still I miss eating, but maintain some sanity by continuing to cook for the rest of the household.

They are also not expecting to have to do surgery, though that will be determined around the 8th week. Even if there is surgery, they think it will be minor to remove what is left of the submandular lymph nodes.

Thanks for the good words shared. My thoughts and prayers go out to all those who are traveling similar paths.

Hello Wudman,
What a marvelous post. Welcome to the forum. Keep that positive attitude. If the radiation burns are not open, you might try a cream called Biafine which worked for me. The last few treatments fried me so badly, I coudn't turn my head. I found this cream much better than the aquaphor. Actually the instructions say you are supposed to start using it before rad starts to help prevent the burns. It was very new, back in the dark ages when I had rad, so didn't get it until the end. Keep your positive attitude.

Take care,
Eileen

Hello Wudman and thankyou for sharing your story of hope and courage. I am very interested in the method of your treatment and how successful it appears to have been.

I'm sure your attitude and the wonderful support of your family and friends has helped you respond so well to treatment.

Please let us know how you are progressing, love and light from Helen

Hello Wudman,

I read your story and I wanted to thank you for taking the time to share your story with us here. You appear to be so strong and that is what I am struggling with taking care of my mother. So, I thank you for that. Wanted to wish you also God's blessings and strength through the rest of your treatment. I am also inspired by your wonderful attitude through all of this. Welcome and thank you.
God Bless.
Stephany