Hello, all!
I've been jumping around, reading posts for much of the afternoon and I've learned so much! I've also laughed a lot, which is a very important part of dealing with cancer.

My husband, Tom was diagnosed with squamous cell cancer in May, after finding a lump in his neck. A PET scan showed cancer in the lump and it was completely removed--it was a mass of lymph nodes. But, we had no primary, and the ENT and the radiation oncologist (RO) painted a grim picture of treatment. The RO pushed for a second PET scan just one month after the first, hoping that something else would "light up." Oh happy day, the right tonsil presented as the primary! He had his tonsils removed and our course was set: The RO said 33 radiation treatments and the MO said cisplatin every three weeks in conjunction with weekly erbitux. The MO had to push the insurance co. (a big one that should know better) to get approval for Erbitux. Tom is the first patient in our town to get Erbitux for oral cancer.

He started radiation on July 19; chemo on July 20. So far, the biggest issues have been hiccups and sour, dry mouth. We know we are just at the beginning of a long road and are taking it one day at a time. I am grateful to find a such a great source of information, support and inspiration. Thank you, Brian, for giving us this resource!

Tom is a web designer and has a site to keep family and friends posted, and to provide information to others coping with tonsil cancer. For his perspective, visit www.howstom.com

Joyce, aka Tomswife

Hi Joyce, Tom,

I also had the lump in the neck, but mine was at the base of the tongue. It will be tough for Tom & you for a while, but it can be done. I'm close to two years from diagnosis and doing well. No dry mouth, neck has ehaled from disection.

This site will help a lot. I wish I had found it before my treatmetn was finished. If you have questions, please ask. We all want to help.

Steve

Hi, Joyce and Tom. Just finished reading Tom's website. You both have been really busy! I was interested to read about the Erbitux and insurance issues. John just had his 3rd tx. and so far, we haven't heard from the Ins. Co. He has a full fledged rash- his face is awful looking, it's in his ears, on chest, back and upper arms. Hope Tom's won't get that bad. I would encourage you to talk more about the peg tube. It has kept John alive during these treatments. Best luck to both of you-by the way, your job sounds interesting. Amy

Thanks for the warm welcomes!

Steve, did you have a PEG tube?

Amy, I replied to your response to my question about sour mouth before I read this. I'm glad that John is tolerating the Erbitux well. What are they recommending for the rash? I've read ZendaT's posts here and we have switched to a dark-colored pillowcase! Tom's rash seems to get much worse if he is out in the sun for any amount of time--and I am vigilant about his wearing sunscreen! I'm curious to know where you are in Arkansas. Tom is originally from Springfield, MO and I tease him that he's from "almost Arkansas!"

Joyce,
I read Tom's website. Does this move mean that you have to give up pulling for the Cardinals
(nemesis to the Astros) and start pulling for the unlucky Cubs?

Danny G.

Tomswife
In my dealing with sun issues, I found that childrens complete sunblock with as high a rating as I could find worked for me (not I may add for the same reasons as Tom) Hope this helps.
Sunshine.. love and hugs
Helen

Hey, Joyce and Tom. Didn't tell you before, but Springfied, Mo. was my hometown from 1972 until 1992, then we moved to Cherokee Village, AR. I kept wondering while I read Tom's web page if I had ever run into his Mom. As to the rash-Keep Tom OUT of the sun-no kidding-no moter cycle- it EXACERBATES the rash. I put neosporin or some kind of hydrocortisone\anti itch cream on John at least twice a day. This rash is really ugly-big hard bumps on his face, small red ones everywhere else.[ they kinda remind me of measles]He also has a bad case of thrush right now. Since Erbitux is new, I guess we will have to build our own information about what works and doesn't work to counter the side effects. [I have gotten the impression that John's Chemo Doc is "feeling his way" with the Erbitux also, which is scary] The other "side effect" we are encountering is that John is still losing weight, even tho he is consuming more calories. I know this has to be hard for you with the traveling you have to do. Hope you can find time to keep posting. Amy

Thanks for the neosporin tip. I was wondering any of the anti-itch sprays would be OK--like the stuff you can use for sunburn? I'm going to have him ask when he goes for chemo Thursday.

Erbitux is new to oral cancer, but our hospital has experience with it from use in treating colorectal cancer, so they are somewhat familiar. They have recommended Udder Cream for the rash and it does help soothe and reduce the redness. Don't worry, Tom hasn't ridden the bike for weeks. He's really Mr. Safety when it comes to that.

Does John have a PEG tube? That's our next big decision.

You know, I had a feeling you were one of those nice Springfield folks! Tom's mom was a teacher at Rountree Elementary for many years and his dad was a teacher and coach at Parkwood.

Hi Joyce -
I just read Tom's site and am very impressed with his terrific attitude. Keep it positive - it will get you both through some tough times. It is difficult to watch you husband go through such grueling treatments.

Regarding the PEG Tube -- do it now! With Ken the delays in surgery & treatment caused significant problems. In the end he had to have a "J-tube" -- like a peg tube,but in the small intenstines and a much more complicated surgery. The feeding tube helped save Ken's life - no doubt about it.

Regarding the rash, I am have serious problems with hives -- not exactly the same, but boy Tom has my sympathy on this one. Just makes you feel worse. I usually end up with Cortizone shots - I wonder if there isn't something they can do to help ease the rash.

Hang in there Joyce -- and visit often.
Carol

Joyce and Tom, I also would encourage Tom to get the peg tube [ if he doesn't have to use it, then he'll just have 2 belly buttons and can use that as an icebreaker at dull parties- John will have 3 if he gets this tube out] We started off in the Glendale school district, but moved to a farm in Rogersville when my daughter started 7th grade. I'll bet I know folks who knew your folks. Glad to hear Tom is off the bike for awhile. By the way, the Erbitux has shrunk John's exterior tumon by 2\3rds. We are very hopeful that it is doing the same to the internal one. As we all are prone to say here-"One day at a time" Amy

Amy that is GREAT news about the effects of the Erbitux on John's tumor. You and John certainly need that kind of encouragement at this point. I'm thinking of you.....

Nelie

Joyce and Tom,
Welcome to the forum. Your journey has begun much the same as ours--Tom also had a lump in his neck, three rounds of antibiotics later the PA sent him for an MRI. Hello cancer...The great news is that my Tom is nearly three years post treatment and doing very well. Sense of taste has not really returned and the PEG tube is a lifeline. Keep up the positive attitude and stay in touch!
Charlotte

Thanks, Charlotte! What great news about your Tom! We are hoping for the best as well. The news that your Tom's taste has not returned is a little disconcerting--what taste has been affected the most or is it everything? Tom is supposed to get his tube next week. About the only thing he can taste now is salt--Campbell's chicken noodle soup is his diet!

Joyce

Joyce, just read the "chicken noodle soup" is his diet- that won't cut it Between now and the peg, he needs to be getting everything down he can- taste or no taste. Whatever he can swallow should go down his throat. Calories and hydration are the most important thing. When you have time, do a Yahoo search on " Hi Calorie Liquid Diets"- you will get some good info there. Amy

Amy,
I just got home from a weekend at my mom's in Pittsburgh, PA. My mom has pancreatic cancer. She's holding steady 10 weeks after her diagnosis.

We have a consult with the gastroenterologist on Tuesday and we're hoping (yes, now he's looking forward to it) for the PEG before the end of the week. Radiation side effects have hit all at once. Tom's throat feels "raw" and even worse than no taste are things that taste bad. He is trying. In fact, he's eating some very soupy, very sugared oatmeal right now. My mom sent me home with some Boost for him to try. It's really been good for her.

Thursday was Erbitux #3 and his MO said he'll only have one more dose of Cisplatin. That will be in two weeks.

I read that you are off to San Antonio to help your daughter move. Good luck and don't work too hard--hahaha.

Joyce

Joyce, I can't believe you are dealing with 2 cancers at the same time What are YOU taking?
Here are some staples in my pantry\frig that will help Tom [with or without the peg]
Benefiber-for stool regularity- buy at Walmart,
NatureAid- weight gain-1500 cals. per 16 oz milk or water-buy at a natural foods store
EggBeaters and powdered[dry] milk- add to other foods
Lots of canned soups ato puree
Ensure Plus & Boost: Suppliments [OCF coupon}
Swansons chicken stock, beef stock, veggie stock
Whipping cream or whole milk-add to soups
Clamato juice, Welches Grape juice, Gatoraide
Pepsid
Pill crusher-Walmart-[really handy] don't buy Gelcap anything]
Plastic measuring cups- 1 cup and 2 cup- helps keep up with intake amount and are easy to pour from.
Liquid tylenol [in case of a surprise temp]
Peroxide-for cleaning around peg insert
Hydrocortisone Cream for the Erbitux rash
You know- OCF should open it's own "multi purpose" store! Keep us up to date on what is going on. Amy

Amy, I am coping. Work is my "therapy." At least there I can control things!
Tom and I saw the GI doc this morning. He'll get his PEG tube on Friday, not a moment too soon. It hurts him to swallow his spit at this point. Also, today after his radiation, he was going to go upstairs to the MO department to get a fluid IV. They told him he could do that anytime--a good tip.
Thanks for the pantry list! There should be a place on this site for such things. It would be helpful to all of us.

Joyce