Hi, I'm Debbie in Texas and I found out I have oral and neck cancer about a month ago. It's stage 4 and aggressive BUT I'm being told it hasn't spread and I'm treatable. I have a tumor on the roof of my mouth. They are moving fast with me and I had all my teeth pulled out last week and will start radiation and chemo soon. I'm still in the shocked, scared, and worried stage and I'm looking for support because I need to move on to a fighter asap! I'm still trying not to be so shocked that I now look like my grandmother did when she didn't have her teeth in and I'm trying to figure out what and how to eat! I thought it might help to hear from folks that know what I'm going through so any advice or encouragement your willing to share will be appreciated.

Debbie, welcome to OCF. My cancer was the top of my mouth too and also in my cheek, 2 seperate spots at the same time. Not too many people om here have it in that location. Im glad you found OCF for help and a place for guidance.

My teeth werent removed before treatment started and they didnt make it thru radiation. I had alot of problems with them and could barely eat. You are lucky to have yours pulled first. I know right now you dont feel lucky at all but its much better to have them out now than later. Its sometimes embarrassing having no teeth, but you gotta look at the bright side, its only a temporary thing.

I just posted a long list of easy foods under the Eating/speech/swallowing/PEG heading. I think that will help you alot. How old are you? Do you have family and friend around to help you? When does treatment start? Not trying to bombard you with questions, just trying to help. Take a couple minutes to add a signature to your profile so its easier to understand your situation.

Welcome again, and best of luck.

Well Debbie strap on in and get comfortable because it's going to be a long ride. Your dr.s should discuss getting a PEG tube put in and that should be done ASAP. Just remember that the only things that you can control is your attitude and nutrition and both are very important when facing this battle.

Welcome to OCF, you'll find very helpful people here to answer just about any question you can throw at them...and don't hesitate to ask. You can beat this thing!

Debbie, it seems that for now, your main questions concern teeth and radiation....very valid concerns, for sure! I suppose that your surgery will be a palatectomy. I had a partial maxillectomy and a partial palatectomy, and I now wear an obturator appliance to close my palate. If you are interested in the details of my experience, search for posts by me, under the name "August." I didn't have radiation or chemo, so I can't help you there. Good luck!

Hi Debbie,

I know this must be a huge shock. I'm glad that the cancer is treatable. Once you get throught he treatments you can get dentures and a obturator and you will adapt to a different lifestyle.

This is a difficult cancer in how it effects the basics in life-- eating talking swallowing etc. You have a wonderful support system here. Reach out to family and friends. They will want to help and you will need a shoulder to lean on.

LOTS OF LOVE AND HUGS TO YOU!!!!

Pretend like you are going to battle. This cancer is the enemy!

XOXOXO Kate

Thanks for replying. I added a signature which should answer most of the questions. I'm 48 and my son and daughter-in-law are trying to help me. I went to a surgeon but surgery would be too radical at this point so we need to try radiation and chemo first then re-evaluate any surgery options.

Did you have both radiation and chemo? My doctor said radiation in the mouth is very painful after a couple of weeks. Is it as bad as I am thinking it will be?

I know I shouldn't be embarrassed about having all my teeth pulled because it's something I have to do to save my life, but right now I can't help but feel that way because I look so different.

I'm having to finish my last week of classes on a university campus with no teeth and I don't know how I'm going to go back to work looking this way. I know I have to turn into a fighter and not care how it looks. It's just so much so fast.

I appreciate your help...

Debbie, losing all your teeth is a huge thing. Only someone who has gone thru it can really understand how humiliating it is. I was scared to go to work without teeth too, but I did it and saw the good side of alot of people which made it easier. Ive been without teeth for almost 2 months now and have several more to go before Im allowed to get dentures. Thats the bad side of having teeth removed after radiation.

Its ok to be scared of the chemo and radiation, I did both. My situation was the same as yours but I also had a tumor in my cheek. It would have been a huge surgery even though I was only a Stage 1 in both spots. The chemo and radiation eliminated the cancer and for 7 months I was cancer free. There must have been a itty bitty cell hiding cuz it came back. Then I had surgery and it was only my cheek and was removed easily, not the radical surgery first discussed.

To be honest, radiation of your mouth isnt easy. It gradually builds up and even keeps working after you finish treatments. A couple things to remember is keep swallowing a few times per day and stretch your mouth open as wide as possible. No matter how difficult it gets doing these things will greatly help your recovery.

Its not fun having a port or PEG tube, but its worth it. They can both be placed during one surgery and it will make it so much easier to keep your weight stable. Thats very important even if you are overweight. Your body needs lots of extra nutrition and hydration to get thru this. Minimum 2500+ calories and 48 oz water daily. At one point my intake cuz of my milkshakes was over 6000 calories per day and that was for a few weeks. I still didnt gain an ounce cuz my body needed it to heal. Please dont feel ashamed about having something like this. It really is something you will need to get thru it. I have lots of tips for you about both if you need it.

Are you being treated at a cancer center? Did you get any other opinions? Keep the questions coming, we can help. Best part is we are here 24/7 and you get lots of opinions and different perspectives.

Debbie, I have been where you are heading and pratically in the same order. THe main difference is I had surgery at Ohio State James Cancer Center. My Oncologist came into my room and told me, that he had gotten all of my cancer and I wouldn't need rads or chemo. Well, it wasn't long and I was being taken to the OR again and again for more tongue removal and biopsies. THis was began on Aug 3rd of 2007 after having been biopsied at 2 hosptals in Wheeling, Wva and at WVUniversity Hospitl in Morgantown , WVa..I had seen an Oncologist at Wheeling Hospital Park Hospital and he is the Dr that told me I should have rads and chemo before surgery. He was right on. I was sent to him from OSU for the rest of my surgeries and rads and chemo. The Dr told me his lineup and my schedule. First thing was to have myh teeth all removed , the rads and Erbitux before going to surgery for radiation seed tongue implants. We completed that part of the schedule on ,no implants yet, on Feb 25th , I think, and admitted me on Feb 29th for implants. I was old I would be isolated for 3 days and surrounded by lead shields. Well , the 3 days turned into 6 and I wouldn't wake up. Arrangements were made to transfer me to a rest home, bt late in the afternoon the day before, I woke up to find my Dr sitting by my bed. I heard him say, Jim you are my miracle patient. I asked why and got the same anwer I still hear. Because yu just are. I guess I was spaced out and didn't want to come around. I can tell you, if you experience any of this, it won't be fun but a lot of pain daily, bt you can learn t o live with it. I still have a lot of pain and just put it on the shelf each morning as best I can. I have pain meds which I never take as ordered and am used to much of the pain part. Your body can adapt to some strange things. Anyway, put some weight on and eat as much as possible for now. I lost 70 lbs and look like a poor fish that has lost it's water surce for a couple of weeks. I am alive and living so I have accepted life as it is. As for food, gt a blender that is tough and liquify anything that sounds feasible and don't worry about the taste, the only bite you will taste is the 1st one. After that one, it is burn and eat anyway. This yu get used to also. Christine has been there too and has some good ideas for food too. I just imagine a meal and try it. Lots of cream of wheat, coco wheats, oatmeal, tomato soup over heavily butter bread, forget meat or anything that needs chewed. You are going to make it thru this stuff and be a long term survivor. If you need to ask me anything, just go for ir. My email is posted in my profile. I could add more, but you and anyone reading this has to be bleary eyed by now.... LOL Jim

Debbie,

When do you start Tx?

My husband, Justin is 60. DX April 10. He and I are waiting in limbo for tx to start. The Doctor called Tuesday and said they do not have to pull his teeth. Thank God. But they are making appointment for dentists to make dental trays for floride tx.
They are going to use Erbitux and Platinum Chemo with radiation. The treatment is for 7 weeks minimum. This was told to us by the ENT after his meeting with the oncologists/ radiologists. We have not seen those Docs yet? The ENT is the one that make DX. He told us that we would be called for an appointmnet to have a port and feeding tube soon. We have been waiting since Tuesday to hear from someone. He also has to go to the Dentist. They would call us to make the appointment.
We are in the VA system of medicine. No private insurance. So we are at their mercy. They seem to be caring and knowledgeable.
Justin has BOT, SCC Stage4, metasized to the lymph glands and spine. Probably Agent Orange we were told.

Is this curable or palllative treatment?

The waiting is the hardest. He is not loosing too much weight . Maybe about 10 pounds He eats good. However, he does not want to go anywhere or talk to anyone. No going to church or visitors. He likes to play poker. He seems happy when he does that. This is a huge poker room. No friends for him. I do not play poker or feel we have the money to do this but I also think he should do something he likes. He cannot hear good. I have to handle all phone calls, emails and faxes. I ask him to go with me to see my mama (82 years old) and he told me to go without him. Am I complaining? I do not want to go with out him 6 hour drive away...or feel that I should. I am getting so frustrated. I am doing all I can to make him happy, but this is hard for me too. Forgive me for being so selfish and complaining. I do not know what it feels like to walk in his shoes. Any ideas for caregivers. What lines do we draw? Or do we? Now I am sitting here alone with noone to talk to....glalaryan