Hello friends,
I was diagnosed in February of '06 with Stage 2/3 SCC of the lateral/base of the tongue. I soon thereafter found this web site and starting reading and asking questions. It was a great source of encouragement and information. At the end of March I started treatment - 35 IMRT days and 3 rounds of Cisplatin.
Once I got into the treatment I was so sick and out of it that I kind of 'fell off' the OCF forum - I usually just didn't feel like getting on the computer and frankly I didn't even have the desire to be on the site any more. Despite being able to read about, and communicate with, others going through the same thing, it still felt very lonely at home in bed while my wife was as work and kids were at school. I was just kind of in a bad fog, kind of cutting myself off from the world, which, I felt was going on without me.

I could never have imagined all the 'side challenges' that come with this disease and treatment - the medication problems, the trips to the ER, the infections - there's so much that is specific to the individual and I don't see how anybody could have warned me about all those challenges. It was kind of like - treatment was hard enough, and then on top of that you have these problems that arise 'as a result of' treatment. Wow, it's been a ride.

I finished treatment in late May. I found, as many others have said, that I didn't hit bottom physically until sometime in June. There was some part of me that was convinced the day I ended treatment I'd start feeling better - but you guys were right, that's just not realistic. By mid-June I was at the lowest point I've ever been in my life. I truly felt like I couldn't go on. Honestly I considered NOT going on.

But I got through and within a couple of months I started feeling like I was on the upswing. I was still on a PEG tube because everything tasted so horrible.

In early October I finally started eating - I found some things I could eat that tasted ok - not good but ok. I had a PET scan about three weeks ago to determine the success of treatment. It came back suspicous. So, I had a biopsy last week and my follow-up was yesterday.
No sign of cancer!! I'm in remission!!

I know this is still just the beginning of the journey and nobody knows what tomorrow holds, but for now I consider my treatment a success and I'm living strong. I had them pull the PEG tube out - that was a huge OOWWEEE but it was worth it to have the thing out after all those months.

I'll still be around. Since like many of you I'll be tied at the hip to my doc for the next five years at least, I'm still one of you and I'll be lurking on the boards...trying to help when I can.

I just wanted to thank you folks for the replies I've gotten to questions and frustrations - and to all the good information and most of all, caring, that resides in this forum. It has been a huge source of encouragement to my wife and I both.

thanks
Steve

LIVESTRONG!!

Steve,

Glad to hear the good news. Loved your story. I think I felt the same way going through it all.
I had my peg removed after nine months after it was put in. I was glad to get rid of too. I kept until I knew I could eat OK. Yes it does smart some!! Ha ha!!

So glad things are starting on the up and up. I was at 3 months when I started to feel some improvements. I still run into a bump or two but doing better. So Happy for you !

Take care,
Diane

Great News and welcome back

Steve-good for you and please remember how much you can share [and help] with people who are just starting this journey. Amy

Hi Steve,

You and Jack were on the same treatment timetable and I remember those low points all too well with him. Getting the PEG tube out and starting to eat is a big step forward so congratulations on that. Jack continues to supplement his calories with the leftover cans of formula and flavored syrup added, but he's adding new foods to the "this will work" list every week.

The dry mouth seems to be his biggest problem and truthfully it's too early to tell what the final status of that will be. I think Gary said his came back after 18 months. They're trying acupuncture with Jack to see if that will stimulate saliva, which is a little weird but not the dumbest thing we've done with this.

You're right that no one can really prepare you for the "result of the treatment" side effects but it sure helps to be able to do a search on the home page or forum to know you're not the only one going through it. Considering that the rule of thumb is a month of recovery for every week of radiation I'd say you're doing well.

Amy is right about being able to use your experience to help people who are just starting out. Jack and I cannot believe the difference in where we are now versus those early "you've got to be (expletive deleted) me" days. Time has a way of helping you put things into a better perspective and I can honestly say we are feeling that new normal that everyone told us about but I didn't actually believe in the beginning. It's encouraging to know that we are all capable of making adjustments - particularly when there's no other meaningful choice.

Your story is great and very representative of most of us. Welcome back and good for you for getting here.

Regards JoAnne

Hi. I'm new to all this but just reviewing the blobs I'm getting alot of information. Not necessarily what i want to hear or have heard - but I prefer to plan for the worst and hope for the best.

Thanks for sharing!

Mp,

Here you get the the truth...the good, the bad and the ugly.

Have you started your own post under introduce yourself? If not tell us your story.