Hello to everyone. I just found this site. Do to the fact that IMRT treatments start Tuesday 2-13-07 for 38 sessions, I am feeling the need to gather a support group. My SCC diagnosis was received on 12-29-06 with surgery (Right tonsil and lymph nodes) on 1-8-07. One tooth had to be removed because of the upcoming radiation.
I must confess that I can be a big wimp. I do not deal with pain too well. I can only assume that I am this way because I have never had to deal with it. Three months away from 50 years old and this diagnosis along with the surgery has been one heck of an orientation!
Keep in touch and take care.

David

Hi David -
You are most welcome, even tho we are sorry you have to be here. Tell us more about your staging and where you are being treated? My husband had his oral surgeries thru Shands in Gainesville. JaneP

I'm still trying to become "fluent" in this new language. I am Stage IV (T1 N2). My surgery was at St. Vincent's. Radiation treatments will be at First Coast Oncology in Jacksonville.
I've heard great things about Shands Gainesville. The first ENT I saw strongly recomended them but the distance was a big factor.
The main thing for me right now is that I do have much confidence in my care providers. I hope it is the same for your husband.

David - So glad you found this site! THere is so much good information here and encouragement and strength from caring individuals. I don't know what I would have done without help from OCF. It made a tremendous difference in being able to care for my son. Make use of all the OCF links and research. It can help you deal with what is ahead. Just knowing what you can expect makes it easier to get through it and less overwhelming. You CAN fight this!

Hello David,

I am glad you found this site.

Doctors have always told me I have a high threshold for pain so, I won't be much help to you there. I can tell you that you will get used to people doing things to your body that you never thought possible. Before cancer, I could not even watch a nurse draw blood without it making me quezy. Now I help them find the right vein for IV's etc.

Keep your sense of humor about you, ask us questions as needed, and most of all fight hard.

Jim

Thanks for all of the good words and support. I guess I may have exaggerated a bit about taking the pain. I can take it, but I guess I would rather not be in this position where it is a part of life. But, you know, life goes on thanks to a loving family and folks like all of you.
This morning I went into the oncology department for the final set up with the first treatment happening tomorrow morning. Laying on the table looking through my mask - it is beginning to really hit home.

Hi David-
I'm new to the board here and just finishing up my radiation for salivary gland cancer. Everyone's experience is different but I found that with the right painkillers there's not actually that much pain. They can wind it down to "discomfort". Then the other side effects suck of course (mucus and mouth problems).
But you will get through it! I found that since I was not working, it helped to have a lot of good movies or TV shows to watch to take my mind off things.
Take care
Melissa

Thanks Melissa. I have one quick question. Did you have radiation treatments only? No chemo? It seems as if most or many folks have chemo and rad. I'm kind of curious of the side effect possiblities with radiation only treatments. I certainly have empathy for those who have to endure both. One down and 37 to go!

Goodmorning David,
I welcome you to our "club". I had almost the same diagnosis as you, scc right tonsil one lymph node. My treatment plan was 33 IMRT 3 sessions of chemo and then modified neck dissection. My journey began in the Fall of 2005. I have to say the radiation was no picnic , however this is very doable. Today it does not seem like I was sick at all, but I do know how sick I was. You must get your head in the right place. Remember my friend you have cancer cancer does not have you. You will beat this thing, just keep in mind that every day is one closer to finishing treatment and getting on the road to recovery. I will not say that this is easy because it is not. A few pointers, if you do not have a PEG tube get one, take good care of your teeth etc. get as much nutrition as possible, and let people help, don't be a martyr. Your friends and family WANT to help, make them part of your recovery. Having a support network is crucial. I am the same age as you and live alone, I just gave my family and close friends keys to my apartment, The love and care from them helped more than can be expressed, let them do their thing. Fight the good fight. You will beat this thing then the cool part is that you are here and you will be reaching behind you to help those behind you climb this mountain. This is not easy but, you will find a way through. Hang in there , best of luck and may this journey go fast for you. One last thing relax with the taste and saliva issues, they will return.
Please contact me with any questions you might have.
Lenny

David,
I am also a member of the right tonsil survivors club and I couldn't take the pain - the good news is they have some pretty powerful pain meds and excellent pain management techniques (and they are a basic patient right). Just be sure to use to 0-10 scale in describing your pain, 0 being none and 10 being unbearable.

I also took anti-anxiety meds throughout treatment and slept through many of the radiation treatments.

It'll suck but you'll get through it.

So when might this wonderful stuff happen? The oncologist says around 3 weeks. Is he even close? I was really hoping to be able to work for the first 3 weeks of treatments. Wishful thinking? Or no problem. And what exactly are we talking about? Terrible sore throat? Teeth and jaws very sensitive? Just feeling bad all over?

Thanks for all of the great insight everyone. This is great community. A safe place.

Three weeks is about average. You might be able to work - some have. But after that it could get challenging. Once the mouth sores appear then you will need pain meds and powerful ones. The radiation keeps working for some weeks post Tx so be prepared mentally for that. Some think that "beam off" means instant start of recovery.

"Beam Off" day is somewhat akin to coming in out of the sun after you've been sunburnt; it hasn't peaked yet...

That's a great analogy Pete!