Well,

Yesterday they explained that they are pretty much on the fence about giving me chemo and radiation at the same time. They say they would like to do 3 rounds of Cisplatin if they do decide to go that route, and to come to the hospital next wednsday prepared to be admitted, but still might not be. I am just assuming I will be and it will be 3 Cisplatin with approx. 35 rads. They said I would be asmitted for each round of Cisplatin and explained all the possibilities. I guess here are my questions...

I have had a pretty normal life the last 2 weeks, not thinking of cancer, eating whatever I could possibly eat, walking , laughing,talking and just enjoying my friends and family. So do I expect that world to vanish for a few months because that is what I am prepared for. Do I just asl for the PEG tube because it is inevitable or listen to the doc who says he doesnt want to unless it is absolutely needed. I am 27, pretty active except for a few lazy days lately and just curious. It sounds like the magic response is " everyone handles it differently due to age, gender, and stage and so on"> Any inspiration or influence is welcomed. I really need some expert opinions.

They will be doing my TSH level checks and so on as well as had my mouth trays made. I have had hearing problems in the past but am prepared for that as well. Or am I really prepared? At times I feel I am just about to get laughed at from the doctors who seem to have the expression, I wouldnt be smiling so much if I was you buddy. I catch the drift that I am about to walk through hell with a gasoline can. true?


Your Friend,
Nathan

Hey Nathan,
My sister just completed treatment on Monday. She had 30 rads and 4 infusions of Erbitux(a new form of chemo). She had a bad reaction from the Erbitux which made the sores in her mouth worse which caused thrush. She also developed a severe rash from the Erbitux. I believe that if she choose not to do this drug she would have went through radiation much easier. She also started without a PEG tube and ended up with it 3.5 weeks in. They also had to give her a week break from radiation and hospitalized her because she was dehydrated.
I must say that even though she has these side effects she still walked everyday, went for a weekend vacation. She also drank a half a cup of water everyday and opened her mouth all the way everyday. She is in the hospital again this week fir dehydration but from what I have read she hasn't done so bad.
My sister was always skinny(never over 130 at 5,6") so she really doesn't have much room to lose weight and thy don't want her to. Through everything she is down to about 115 so the dr's admit her to hydrate her they do not want her losing anymore weight. I am sure that if she saw what I have wrote to you in this she would tell me it was worse then I have explained but my take is she didn't do to bad. She was never in bed for a full day.
Like everyone says I am sure everyone is different. To me it sounds like you have recovered fairly well from surgery as she has. So I do believe you will do ok with radiation. Believe me it does seem much worse pain wise then surgery because it gets worse then better where surgery you just heal. I would also ask for the Peg before. Everyone told my sister but she didn't get it. Instead she had to have a week off from dehydration and to put it in. It just prolonged the pain of radiation.
I wish u the best during this part of the battle. Your positive attitude and willpower will get you through. You are one tough guy.

Hi Nathan,

I have just finished 34 IMRT and 3 Rounds of Cisplatin - 5 weeks now. I did not have of PEG. I have to admit it was very hard but i managed. I ate in the bathroom (and still do!!) with a glass of water in one hand. Basically quickly get a few mouthfuls of food down before it starts to sting and quickly rinsing my mouth with water. I then rest for a few mins and repeat the process until the food is done. At times i was on my knees crying from the pain but i persisted and lost about 6kg at the end of the treatment. PEG wasnt even offered to me so i didnt even know about it until i joined this forum!

You sound like a strong and determined kind of person so i think you will do fine with the treatment. The first few weeks arent so bad, like my ENT said "its the last 2 weeks of treatment and the 3 weeks after treatment that is the worse". Physically i've been doing great and only had about 3 weeks of feeling really bad. I'm now only having trouble dealing with the "mental" side of things.

Good luck with with treatment. I'm sure you will do fine!!

Minb

Nathan,

There are some of us that went thru the Tx w/o the PEG so it is doable but that decision is best left between you and your docs. IMO it would be better to do w/o the PEG as long as you can make it w/o loosing to much weight but again talk it through with your docs. The key is getting all the calories and hydration that they want you to get every day. sounds simple enough but that can get tough as you get to the last couple of weeks of the rad especially if you do get the Cisplatin and especially so if you are given the 3 dose method. Even if you do get the PEG you must continue to swallow every day. My docs didn't want me to get the PEG but he worried that I didn't have any weight to spare loosing. I proved him wrong as I lost 30 pounds. lol

If you are like the majority of us you won't start to have a bad reaction until about your 4th week and it will continue to worsen until about 3 weeks post Tx so really you "only" have to deal with the worse crap for about 7 weeks.

Do be careful with the 3 dose regimen of Cis as it can cause permanent hearing loss (did for me). I would ask your docs about the 6 weekly bags of Cis as most that got it that way reported less adverse side effects than those of us that got the standard 3 bag approach. If they are on the bubble about chemo at all, maybe that would be an acceptable alternative.

Nate, you WILL get thru this - we are all in your corner. Stick with us, young man : )

Hi Nathan:

Please keep your chin up. I finished treatment in Aug of this year nad am doing well now. There will be a few hard weeks, but they will pass. I think it's important that you keep a positive attitude... sometimes things are just what they are, so focus on the positive and in no time you'll be on the road to recovery.


Wishing you all the best and a quick recovery.

D.

Since you already have hearing loss, make certain your chemo doctor is aware of this. I would also ask about having Carboplatin rather than Cisplatin. Supposed to be as good without the awful side effects. Having had neither, I cannot comment other than what I have read here.

As to the peg, I too made it through without one. It was rough, but I percervered. Since your doctor doesn't think you will need one immediately, I'd wait and see. Just don't let yourself get dehydrated or lose more than 10% of your weight.


Take care,
Eileen

You are all so wonderful! I know it is the weekend and I wont get too much more response on the topic but the days are counting down until the final round of this championship bout. I have to beat this, I have had many dreams and nightmares of all sorts of weird things and I am not on any medication at the moment. I have never had so many dreams in my life, some inspiring and some way to close for comfort. But here is my deal, will this keep me in captivity or should I just keep trucking, But I can be a major germophobe and hear it easy to get sick from other people so I may be a hermit for a while. I also have a very very personal question and would like an opinion but will not post that here, Please private message me and I will be glad to share it.

And my motivation as of late has been compiling a full length compilation album I would like to name after OCF as well as donate 50 % of the earnings to OCF, do I just contact Brian for that? Thank you family, I love you guys.

Your Friend,
Nathan

Well Nathan, I have been following you (both in writing and treatment) since mid-September. I, too had SCC on my left tongue, had the surgery (they planned on doing the radial arm flap but didn't need to!) and am healing...until they noted that I really needed radiation as well to make sure everything was gone. I have been watching for your posts to see how you are doing but I guess we may be going through it together. :o) I go to the local cancer center here in town (5-10 min. away) and will do my treatments there.

I have an appointment on Monday to meet the Dr., get the history taken, etc. and when I leave Monday I will have appointments for mask and trial/sim treatment so I am hoping I will start the next week. I want to get it over before Christmas.

I am 53, a non-smoker, non-drinker - and while it hasn't been confirmed yet, I believe I am HPV+.

Like you said, we are recovering and really hate to throw ourselves back into the pain and trouble. I am not eating chips and sharp stuff, but otherwise it all goes in and gets chewed like before!

I hope I can come out the other side of that 7 weeks with no peg and no cancer, and hopefully no hospitalization.

Shall we both post so we can see how we are doing? I will keep up the fight if you will! :o)

Michele in IL

Nate
I am strong advocate of getting the PEG, but where I was treated it wasn't an option.

Think of it as just another weapon in the battle and having it ready means you can use it if and when needed without having to do a retreat. Sick and starving soldiers don't win wars.

Even with a PEG I had trouble the last week keeping anything down and needed a couple IV's to stay hydrated. Dehydration and excessive weight loss are bad. Interruptions in treatment are not good and can lead to poorer outcomes.

The PEG is good to have once the taste buds go and it's hard to eat once the mouth sore come. I found it a lot easier to just dump the stuff down the tube, take a nice walk and not worry about my weight.

Even with a PEG, your CCC team will require you eat and drink a little to keep the throat muscles working. I drank juice and ate a couple pudding cups a day.

Remember it usually takes a couple months before food tastes anywhere near decent again, and you have to maintain your weight during and after treatment to come back fast and strong.

It's great for med too!