Hello,
I'm brand new to this, having just recently been diagnosed with stage 2 Oral SCC. Not sure whether this is the best place to post just to say hello.
I'm 38 yr old male and very active. For about seven years I had battled with erosive oral lichen planus. For anybody who hasn't heard of that, basically it's an auto-immune thing they have no cure for and it just eats away at the tissues of the tongue and mouth. I'd had three previous biopsies done and they were all clear. The condition would come and go in 'waves', getting better, then worse, then better.
Last summer it got pretty bad and into the fall/winter it was worse than I'd ever had it. In February I went back in and they did another biopsy - this time, bad news.
Further scans and diagnosis revealed I had a 4cm x 2cm x 2cm tumor in the base of my tongue, it had not yet gotten into my lymph nodes and everything else looked ok.
My doc determined that the tumor is too big to remove surgically (with a margin) without doing significant damage to my ability to speak, swallow, etc.
So, I am scheduled to start radiation and chemo in about a week. I had a PEG tube installed last week, with some complications. It became infected and I wound up in the ER over the weekend in intense pain. Three shots of morphine and I was still crying for my mama. They put me on heavy antibiotics and things are now improving about 48 hrs later.
I hate to bring that up and scare anybody about the PEG tube. I know it's typically an easy thing and I'd never even heard of anybody having trouble. I did everything for after-care they told me too, so who knows. I could have been pysically pre-disposed to an infection. I did have a slight fever the day of 'install' (99.1F) but they did it anyhow.

Next week I am scheduled to begin radiation and chemo. I met my radiology oncologist last week and am meeting my medical oncologist tomorrow. I feel confident that I am in capable, skilled hands at an excellent facility. Still I find myself pretty apprehensive about what's coming.

They want to try me with the Amifostine. I understand the benefits but it sure sounds like people struggle with it. I will give it my best to tolerate it.

I've been reading through the posts and it sounds like most of you have already gone down the road I'm about to - or similar ones. It's amazing how much you learn in the weeks following those words, "you have cancer". I've read everything I can get my hands on - medical info, etc. But I have found the personal stories on this site, from people who have actually had oral cancer, to be the most informative. Any words of widsom for somebody who's only a week away from beginning treatments would be appreciated.

Thanks for letting me join the forum.

-Steve

Welcome to the Club, Brother...
You have found the right place for information of any kind regarding head and neck cancer (Oral Cancer).
Your caregivers have put you on the right track.
In the immortal words of Bette Davis "Fasten your seatbelts, it's gonna be a bumpy ride."
It isn't a piece of cake but it is better than the alternative.
Feel free to contact any of us personally if you need questions answered.
Darrell

Welcome to OFC and sorry to have you amongst us.

The tube is a very good option as you will find that hydration and food intake are critical during the chemoradiation process.

Likewise with amiphostine, hydration is very important before the shots are given. Some people are able to tolerate amiphostine and other not so well. We had to stop after the 7th treatment. A skin reaction apperaed at the points of injection and that was the sign to stop.

Even though you mention you are seeking treatment at an excellent facility you may also want to consider a second opinion from another CCC to see if there is concurrence on the treatment approach. Also please take notes and ask lots of questions.

Steve, hope you are able to eat well now- please eat as much good stuff as you can to bulk up a little. Do you hae a support system in place,in case you need help over the next few months? It will be hard for you to do this alone. Are you keeping some kind of notebook where you can write questions to ask Docs or nurses, etc. when you think of them-also write down their answers- people here will prop you up as need be, so stay with us. Best luck. Amy

Hi Steve,

Been there before and ditto to what the other have posted. Your proposed treatmetn plan is almost the same I went through. The tube will not stop you from doing anything. I played golf, worked out, etc. until I became too weak. Actually, I still played golf, but hit from the womens tees. It was mainly to get out doors and some exercise. Stay as active as you can. The treatment is no picnic, but it is tolerable with pain meds. You will need a support system. I could not have done it on my own.

If you want to talk, email me at [email protected] I'll give you my number and we can chat. I have talked with many local patients since I completed my treatment in Dec. 04.

Steve Daib

Steve,
My Dad just began treatments last week and I ditto what everyone says above. Chemo and radiation together are tough but very doable is what we have been told - hang in there - this website will be very valuable to you.

Hi Steve, sorry to hear of your most recent diagnosis. I had SCC Stage 2 of the left lateral tongue and I went through a similar treatment plan finishing up in Feb of 05. Like everyone has said before me, it is a rough road but you can get through it. Just take one day at a time. Also, the PEG tube is vital to keep up your nutrition but they are also no fun. Keep your chin up and surround yourself with a great support system because you do not want to go through all of this alone. Take care.