Hello, Everyone,
I am helping my husband get through the first wave of fatigue from his first chemo session on Wednesday. In searching the web for information on how to be a caregiver, I found this site and I can tell already that it will be a help. After noticing a lump on his neck that did not feel right,Tom was diagnosed with SCC of unknown primary on June 25. Subsequent biopsies nailed it as originating in the right tonsil. He has begun what is planned as 3 or 4 3-week courses of chemo (Cisplatin, Xeloda) and then 7 weeks of radiation, followed by surgery to remove the lymph nodes. We have had no experience with a major illness, and are finding this hard to deal with - esp. since Tom is a very healthy and active 55 yr old....never sick! I have never participated in any groups like this, but hope to be able to get good information from all of you. My MAJOR CONCERN is his weight! He is 5'10 and his weight is already down from 157 to about 150. I've read enough to know that eating is going to be a challenge, esp. with the radiation. Any and all hints on helping him will be appreciated. ALSO, tips on keeping his attitude/focus on track......he is a 5th degree black belt so I know he can focus, but he's never had to face anything as daunting as this.
God bless you all, and thank you.

Hi Nicki
Sorry you are both on this journey, but glad that you have found us, you have some work to do here girl... as much as you can go back over some of the old posts, use the search, I hope you can find some answers, I cannot help with your qusestions, BUT I'm sure someone can, you look after your self, being a carer is hard in it's own way..
Sunshine... love and hugs
Helen

Welcome Nicki,
In December of 2002, we were also beginning this process, as you are now. Like your husband, my husband discovered a lump on his neck which turned out to be SCC - occult primary later found to be tonsil. He didn't have the induction chemo, he actually had chemo at the same time as the radiation. But I want to tell you that he is back to his formaer active self now, at about 16 months post treatment. But, as you suspect, the weight issue is a big one. It will become tougher as treatment progresses. My husband was down to about 120 pounds before he was finally talked into as PEG (feeding) tube. In retrospect, we wish he would have gotten it sooner - it really helped with the nutrition issues. Even now though, he is skinny as a rail and having trouble getting back to his former weight. But other than that, life is good - and, as the road gets rocky, try to remember that it does get better.

Warmest wishes,
Anita

Hello Nicki,

Welcome to the club nobody wants to join. I take pleasure in seeing your member number. (1500)
When I joined in July 03, I was member number #853. The foundation has grown to help many people.
You and your husband are in for a bumpy ride. You as a caregiver have a most important job. Sometimes we don't show it but we love you none the less.
Is your husband able to eat or does he have a feeding tube. I lost 25 lbs in two weeks but gained it all back in 6 weeks. I had a feeding tube. It's important for him to intake enough calories and nutrients to maintain his current weight and also heal from the treatments.

My cancer also was on my right tonsil. They removed it with surgery and followed that up with radiation.

Welcome again Nicki, I wish you and your husband the best.

Your Friend, Danny Boy

Nicki:
To Peg or not to Peg, etc... Good advice, consult with a Gastroenterologist, preferably one from a large practice with many partners, prior to or shorly in to radiation traetment. Explain to he/she that you are an oral cancer patient and wish to reserve his/her services for a PEG tube at an undisclosed date. I did this and when it came time for my PEG, I only had to wait 24hrs to git-r-done. Eleven weeks out of treatment, I still cannot eat solid food and rely on my Peg daily..
Darrell

Dear Nicki

Welcome to the board. You and your husband will find the people here so helpful and supportive. I'm so pleased that the internet's information has been available to me during my journey.

I had a very similar cancer to your husband at the same age. I am now cancer-free and intend to stay that way. I did not use a feeding tube. I did lose a lot of weight but was able to get through because I was 'cuddly' to start with.

I wish you well during the treatment.

From Helen, with love

Hi Nicki, welcome to this big family especially the tonsil group.Like your husband, most of us have never had anything so traumatic before the cancer diagnosis in our life.Attitude is everything and so both of you have to adopt a very positive one in fighting this battle. As regards treatment, I too had chemo and radiation at the same time, not one after the other. So you may ask the doctor about the effects of different treatments on shrinking the tumor. I am very lucky that after the treatment I didn't need any surgery since the tumors on my left tonsil and the neck (size of a goose egg) have completely disappeared. As for the eating issue,I am of the minority group here without a feeding tube and lost about 16 lbs. I gained back all my lost weight in 6 months post treatment and was back to my full time teaching job in 7 months. Now I have my new normal life which is even more energetic and healthier. Your road ahead will be full of hurdles and with a strong will, I am sure you can pass over them and be the winner. We are all here to give you full support.

Karen.

Hi, Nicki,
I'm sorry you have to join us, but glad you found us. This is where I found most of what I know about oral cancer, I search here so that I know what to ask the doctors. I can't imagine what it would be like without this group of people - there are so many things the doctors just forget to mention.

It is going to be hard. The best thing is to take things one day at a time, and enjoy the good moments when you have them (easy to say). Study the old posts, so you know what to expect, but try not to let them scare you - most likely you will have to deal with many of the unpleasant things, but not all of them.

I had surgery first, then radiation - radiation was by far the worst. I lost 30 lb, but since I was that much overweight to begin with, it wasn't too bad. I did not have a PEG. It sounds to me like your husband should consider getting one, since he does not need to lose any more weight. Eating will be a problem for a while - I am still pretty much on a liquid or semi-liquid diet.

My husband's support was the one thing that kept me going - I knew how important my recovery is for him, and that helps a lot. One thing you have to remember: take care of yourself. You need time for yourself, out of the house and away from him, every now and then. Go out and eat something good where he does not have to watch!
Good luck, Leena

Thank you all for responding! I printed everyone's replies for my husband and he was overwhelmed! He is thankful I found you all; he'd never have gone looking. Karen, your post is really awesome! We don't know if we are kidding ourselves, but we both think his tumor has already shrunk! Can that happen after one IV of cisplatin and 3 days worth of Xeloda??? It was measuring 6+ c last week....just seems smaller tonight
We believe strongly in prayer, and can't help but think maybe that is working, too!
Anita and Darrel, Tom's radiation doctor told him up front that he would not do the radiation without the feeding tube, so we are mentally preparing for that. Funny thing about this is that in May 2003, I went on Atkins to lose my extra weight (I could be called 'cuddly,' too!)Tom was preparing for a karate promotion
at the time and felt he would be faster with a few less pounds. Naturally, he lost quicker than I, and he has kept it all off.....although he had a great promotion, I wish he had those extra 20 pounds today!
I will look into the archive here tomorrow to see if I can find any good tips.....I got him to eat a bit of a pot pie tonight, so I am happy.
Good night, all.

Hi Nicki,
Your husbands radiation doctor is a practical man. My doctor put my Peg tube in during my surgery and there was never a question of me having one or not. After surgery, when I was up and around and waiting to start radiation I begged him to take it out. Felt like I didn't need it. I am very thankful I had it for radiation and for the months afterwards. Yes, I could have gotten through radiation without it but why suffer more then we need to? I equate it with the epidurals they give during childbirth that block out the pain without affecting the baby. Why would any woman refuse one??? The Peg allows you to obtain nutrition easier, therefore keeping you stronger. Have your husband continue to drink water and eat what he can during radiation so that he makes use of his swallowing and throat muscles.
We're here for both of you.
Minnie