Hello OCF patient forum members. I was diagnosed with SCC in the left tonsil and stillar area on 10-16-06 and I am to begin chemo treatments 11-27-06. They decided to give me a shot at a turkey dinner. I am being treated at Emory University Winship Cancer Institute. I am going to be in a trial study consisting of only chemo for now. They think the chemo will shrink the 2 nodes and tumor area to where I should not need to have radiation. Worst case scenerio is I start a radiation regimin if they don't shrink. It consist of 3 chemo treatments, 21 days apart with Docetaxel, Cisplatin, and 5fluorouracil. Has anyone been or going through this study? My doctors are very optimistic about this and from what little I can find out online there seems to be some sucess coming out of this. If nobody has gone through this study, does anyone have any input? I am going to beat this either way cause I have plans for the summer and this won't stop me.

Bill B,

Welcome to OCF. Sorry that you are here, but glad you've come to the right place. I hadn't heard of just chemo for the first treatment. I really hope it works for you. You are being treated at a really good treatment center.

Keep us posted. And welcome again.

Bill, eat a bunch from Thurs. thru Sunday and remember, summer isn't very far away. Best luck. Amy

Hi Bill -
You will be able to follow thru on your summer plans, I can tell. But let us know how the chemo-only treatment works for you. Please keep in touch with this OCF forum. Best of everything to you. JaneP

Hi Bill,

My best to you and eat away over Turkey Day. I'm new here also and have SCC at tongue base. I will begin chemo & radiation on 11/28. Will be getting a feeding on Monday 11/20 -- it's all so overwhelming and I starting to wonder will I be able to go through the treatments. Glad to have found this board, thanks everyone for the info.

To emagster, Welcome and I hope you eat alot over Turkey weekend also[we always plan for lots of leftovers at our house] I am in the "Yes to the feeding tube" camp, so I am glad to hear you will have that to rely on. Diagnosis and tx. is overwhelming, but as long as you have the energy to learn about what is happening, and research the wealth of information on this site, and keep posting your questions and concerns, you WILL get through the tx.It won't be a "walk in the park", but it is doable [keep reading] and sometimes scary. Do you have a support system? Please tell us more about you. Best luck to you. Amy

Hi Amy,
Thanks for your post. I have been reading these posts and definitely gaining more information than I have gotten from my doctors. I got my news on Nov. 2, and just been catch up in the medical maze since then. T2N0M0 = 7 weeks of radiation, 4 treatments of chemo (Cisplatin (Platinol); plus some thing called Amofostine. I am single and work full-time, Amy do you think I can still work or does one go on Disability? I have friends who have been great getting me to apptmts. but it's really hard to ask (or expect them to do so much). I'm in California and my sister from Florida said she would come out but my goodness, she has a family and job. Amy, thanks again and have a pleasant Thanksgiving.

Folks, I did not try to imply I was on a Sunday stroll and if that is how it came across I apologise. When my dr. approched my wife and I about this and he explained the study, he gave no promises of easy cure. I am still if I remember correctly a t2n2bmo and there are some risk. I was just wondering if any body else had been approached about this study. To Stoj and JAM I have read several of your postings and it seems you two are very active in this forum. I hope I can come here with questions or thoughts that we don't ask the drs. and I would love to find the support for my family as well as my wife here. From everything I have seen this is a pretty cool gig and I (we) would really like to be a part of it.To Emagster, I was set up for a PEG on 11-20 but this study prohibits the use of one. From everthing I have learned about it it seems like a GREAT back-up because of what the rad treatments will do to your throat. Weather or not you will be able to make the treatments email me and we can compare notes and talk about what is going on. You can make it through this because GOD won't put anymore on us than we can handle. From what I have seen here there is a boat load of support for just about any situation.

emagster,

It's best to start your own post so that full attention can be given to you personally and not mixed up with someone elses post. You will have a lot of questions to be answered as you continue on your journey but there are many people here that will help you greatly.

Thanks Bill and David,

David how do I start my own post - I'm sure it's somewhere here on the site? I do have a lot of questions; such as the doctors say don't use soap on the area being treated == does everyone just use warm water?

Thanks again.

emagster, go to the top of the page and click on the new topic box in the top center. I believe that is how I started. Good Luck and stay in touch.

Thanks Bill I will try it...

Bill,

You can ask anything you like...I for one didn't think you implied a stroll in the park. I just think it's funny (not Ha Ha) how the Tx differs from place to place. When I was 1st Dx I was advised to do both chemo and radiation. From everything I read I knew that once you get radiated you can't do it again. I'm a bit of a cautious man so I expressed to Drs that I wanted to hold something back just in case of recurr. That's when they gave me the kitchen sink speech, throw everything at it the 1st time.

Stay strong and keep on keeping on. Ask away.

Hi my name is Laura and Im new here as well. I am 38 years old and have 4 children. I have 3 boys ages 21,18,15 and a daughter who is 7 and has cystic fibrosis. I was recently diagnosed with small salivary gland cancer. I had surgery on Halloween to remove the tumor. They said the tumor was a little over 2cm and had clear margins all around. I had a few different biopsies prior to my surgery since I had seen an out of network oral surgeon to begin with. They had called it a T1 or T2 adenocarcinoma of the salivary gland. However, after surgery within my network provider they called it a T1- T2 mucoidepidermal carcinoma. With no lymph or metastisis. But they did find some perineural invasion within the tumor , so I was advised to see radiologist, etc for the tumor board.

The oral surgeon told me he would have to remove all of my molars because of the radiation treatments. I sat there crying because I took such good care of my teeth. Im also a non-smoker, and non_drinker. I looked next to me and seen a boy my son's age that lost his leg in the war and kicked myself in the butt for feeling bad over some teeth. I then seen the radiologist who felt in his opinion that I was probably already cured but would treat if the surgeon was nervous. I was also supposed to see an oncologist but that appointment ended up being cancelled while my daughter was in the hospital for her *tune_up* iv therapy.

After the tumor board met this past Thursday and we had just returned from the hospital with our daughter they called me to tell me they were recommending the radiation. Although the ENT surgeon said he was kinda on the fence with me as to treat or to watch me. He said if it were him that had the cancer he would treat.

This has all been overwhelming since Ive already got a chronic-progressive disease in my life with my daughter. But I need to be around to care for her so Im trying to make the best choices for my health. Ive read a little bit in your forums about the different types of radiation I guess Im a little confused as to how it works, what type I should recieve...as in radiate the entire mouth or just that area since I have clear margins and no lymph or metastisis. Is there anyone else on here with a similar diagnosis?

I hope all is going better for everyone in this club.

Take care,
LauraT

LauraT,
Welcome to the forum. Please start a new thread with all the above info in the Introduce Yourself section or answers to your specific questions will get lost amonst someone else's post. Go to the top os this section and click on 'New Topic' and try again.

You didn't say where you are being treated. Is it a CCC center? I tend to doubt it if they are recommending pulling perfectly healthy teeth because of radiation. They don't usualyy dothat anymore. I'd recommend going to get a second opinion or better yet treatment at a CCC center, but defintely get a second opinion on pulling those teeth.

Take care,
Eileen