I am glad to have found this sight. My name is Gary and I was diagnosed with cancer on Feb. 2,2006. Diagnosis was made while having a biopsey of the lymph nodes. At the time my Dr. suspected Lymphoma. Unfortunately it turned out that I had cancer in the lymph node, but this was not where the cancer originated. I was sent to another Dr. and he scheduled me for a radical neck disection on March 2, 2006. The surgery found that my right tonsil was where the cancer had originated. In addition one of the lymph nodes that was taken out had cancer. Since the cancer had spread to two lymph nodes I will be having chemo and radiation treatments. My first erbitux treatment was on Monday, March 17th. I am going to begin IMRT radiation treatments next week.
I am interested in finding anyone who has been on a similar journey to mine. Thanks for letting me share.

Hello Gary, you and I share many similar "stones in the path". Ask questions when you need to and we will answer them as best we can.

take care

Hi Gary,
and welcome to the forum. My journey is similar to yours, with the exception of the lymph nodes. I also didn't have Erbitux. My specs are below. Keep us in the loop - we will help you in any way we can.

Welcome Gary,

You and my father are at the same place, he starts chemo and radiation next week.

Wishing you well,

Scott

Hello Gary,
My case is somewhat similar to yours and I am not that far ahead of you. I had a lymph node pop out and it was biopsied in sept. of last year and was told that it was SCC but they did not know the origin, they did several biopsies in my mouth to find the origin and it turned out to be my right tonsil(which they removed). I then had 33 IMRT treatments along with 3 rounds of chemo, after that I then had a neck dissection. They found that there was still some cancer in the lymph node that they diagnosed in Sept. but in no others, at least in the 22 that they took out. I am doing pretty good now considering, however that being said I am having some problems with my mouth and was told that I now have ORN (osteoradioncrosis)from the radiation and will be starting HBO treatments next week. AHHHHHH if it ain't one thing it is another. There is no choice but to soldier on and carry on the fight. That is what you have to do Gary is carry on the fight many of us are in the same boat yet have to follow our own path, each one of us can offer one another some guidance, so welcome aboard and lean on us when you need to.
lenny

Gary, Many of us here have had experiences like yours - each unique of course, but many similarities. My primary was in my tongue, but it had spread to lymph nodes in my neck. I am just past my three year anniversary and doing great.

Your experience will be uniquely your own, but there will be many issues that many here can help you with. There are NO stupid questions about cancer. Ask away. Anyone with any sense at all is afraid of cancer - for good reason. Share your fears here too. Many knowing hands will reach out to you. Sorry to have you among us, but welcome. Be strong. Tom

Hi Gary,

My husband also has SCC of the right tonsil that had spread to the soft palate, the base of his tongue and 7 lymph nodes. He had 2 surgeries in Feb to remove the cancer plus 80 lymph nodes and began 35 IMRT treatments March 27th so we are not very far ahead of you.

Jack has just completed his 2nd cycle of chemo (cisplatin). He has a peg tube that we are finding has been extremely helpful in maintaining nutrition and hydration. One of the things that I learned from postings on this site is that if you can stay hydrated and take in enough calories during radiation and chemo you have less difficulties with side effects. That seems to be true in Jack's case. He's still getting the typical side effects but so far not as severe as they could be, and for that we are grateful.

I don't know what side effects, if any, Erbitux has but radiation has several that kicked in on week 3 for us. Jack is doing reasonably well all things considered because we were prepared for what was likely to happen and we were able to be proactive in planning with our RO and MO on how to handle each side effect. The cancer was a surprise, what to expect during treatment and the comfort measures to take shouldn't be.

The mask is a challenge for Jack because he's a little claustrophic so he takes Ativan before his treatments. He is getting amifostine subcu injections to try to preserve his salivary gland functions. That's apparently controversial in whether or not it actually works and there can be really bad nausea as a side effect. Jack is using zofran daily with compazine for breakthrough which seems keep the nausea managable and so far he isn't having horrible mucositis so we think the shot is working. He has found aquaphor and aveeno cream have helped the burned skin. Biotene toothpaste has been good and he's keeping up with his flouride treatments daily.

He has mouth pain and sores right now and is rinsing with baking soda and salt, and using lidocaine solution. Sometimes that helps and sometimes it doesn't so he also uses oxycodene when he needs to. He has trismus and uses a therabite exerciser to keep the muscles stretching. I have also heard from other members here that continuing to swallow during the radiaiton treatments is important, even though he is using the peg tube, so he is doing that as well.

Every case is unique and your experience may be totally different from ours but it's good to talk to other people who have or are going through this. The treatment is hard but doable, and I have found a great deal of hope and encouragement from this site. We've benefited from the frank discussions and the experiences of the other members and we are using some of their suggestions to get through this. Navigate around the site, there's lots of good stuff.

For us the shock is wearing off and we're trying to get information to understand what we are doing. I have found that there are many opinions among doctors and cancer centers that are presented very strongly so you need to do your own research and advocate for what you want.

Good luck in beginning your treatments next week, I hope all goes well for you.

Regards JoAnne

Gary
My father is just a few weeks ahead of you. He had his neck dissection on Feb. 10th. Cancer was in lymph nodes but with my father they were unable to find the primary tumor. They also removed both of his tonsils during surgery. He began rad/chemo treatments in March and we are due to finish 2nd week of May. JoAnne speaks to most of the same issues we have faced. My father is taking Erbitux so his chemo has not been as bad as some of the others on the forum. He is also tolerating the Amifostine shots well by taking compazine every day prior to his shot. The only side effect he has suffered from Erbitux is the acne rash and it was pretty bad but after the first few weeks the MO treated it with antibiotics and it is much better now. The first dose of Erbitux for my father was administered one week prior to beginning radiation treatments. This dose was a double dose. He will have a total of 8 weekly doses of Erbitux. Only the first one was double the rest have been single doses. This treatment is very doable Gary, tough but doable. I would be happy to share any specific details of my Father's treatment so please feel free to ask. This forum and website have been invaluable to me during our experience. I would be happy to return the favor.

Welcome Gary,

I also had right tonsil primary with cut, burn and poison all thrown in. Ask any question you can think of and someone with similier treatment will respond.
I also had IMRT with no side effects at all???
I started wondering if the machine was actualy on!!

Hope your treatment goes well. Keep us posted as you travel one rocky road!!. Some fare much worse. We really can't say for sure until you go through it.

Danny Boy

Hi Danny,
I can imagine why you would wonder but LINACS have dose monitoring devices that would interlock the machine out if the dose rate is too high or too low.

Hey Gary,

My name is Robert. I had the same cancer and was diagnosed the same way (through Surgery) as well.
I recieved the same treatment with Iressa instead of Erbitux. I only had one node but was still stage IV.

It was a rough ride but all is well now. i just got my two year and all clear. I had nobody to go throught this with until I discovered this site.

It really helped.

Ask anything, any time. everybody out here wants to help.

Talk to you soon.
-rh

Gary,

I was wondering due to the fact I had no side efects. Had no mouth sores, etc.

Dan

Hi Gary. I am caregiver to my husband who had almost the same diagnosis as you. You have come to a wonderful site. I don't know how I would have managed without it. Hang in there and please let me know if I can help in any way.