T4N1MO
I am about to have the same surgery.
What was your rehab like and how much time before you do everyday chores?
Anyone who has had this surgery is welcome to respond.
Belmond

T4N1MO

I am facing the surgery of having my lower jaw replaced.

What is the surgery like and what is the rehab like.
How much time before you are operating as normal?

Belmond

This is my first experience with a message board. How helpful it has been for me. My 33 year old daughter was diagnosed with oral cancer one year ago and chose to go the "natural" route. Her suffering has been unbearable and she finally consented to go to the Mayo clinic in AZ as I write. Today they reccommended what MD Anderson did, only now it is removing the jaw and replacing it with a leg bone. They will also remove the tongue. They spent well over $50.000 in Mex. and on other treatments stateside. They have no ins., have sold their home and have very little left. She was saving enough to be buried. How much better to have had that little sore removed a year ago. I wonder if my two little grand sons will have a mommy long. They probably won't even remember her. Thanks again for your web site. I pray they will visit it also. Yes, we still are praying for a miracle!

Dear Coverup -
It must have been very difficult for you to write this, but we are grateful for your input in the forum. We are convinced that mainstream medicine is a person's best chance for survival from this insidious disease. Your daughter was so young to get oral cancer, and I too pray for that "miracle" that brings her through this. I am sorry they lost so much in their effort to combat the cancer. Thank you again for sharing this story with us and please keep adding your comments and updates to the forum. Hugs to you and your daughter and family....you are in great hands (Mayo) now, so with all the medical advances in treatment for this surgery, you can look at recovery with reasonably high hopes. JaneP

Dear Coverup, Oh my, I am so sorry to read your post, I will keep you and your daughter and her family in my prayers, hoping things work out. Love, Carol

Dear Coverup, I,also, am very distressed to read your post. I am sending hopeful thoughts to your daughter and family. But my PLEA to you is that you get on as many websites as possible and TALK about the dangers of not getting Real Medical[ie bonified trained Physicians] to diagnose and treat this cancer-or any cancer.You could make something good come out of this horrendous experience. Amy

Finally got the biopsy. Bottom line is that it is Base-of-toungue SCC. T3N2CM0.

The tumor is very pooly differentiated. On the MRI, it looks like egg-drop soup with little strands and islands combined with bigger hunks.

Surgery is out of the question (so much for the thread title). So is IMRT. So, tonight, I start cisplatin and Monday I'll start with full-face radiation. I'll post my experiences in the treatment topic.

Before I end, let me thank Brian for this service and everyone who has posted. There is no doubt that I was better prepared than I ever would have been and I am entering treatment feeling informed and as if I made good decisions. I hope to repay the favor many times in the future.

Clint

Clint,

I'm glad you finally got some certainty about the course of treatment. We'll be pulling for you as you go through this.

Cathy

Dear Clint,

I'm glad that you got the biopsy even though I wish all of us had gotten different results. At least you know where you stand. You have the same staging as my husband, his primary was tonsil but it had spread to the base of tongue, the soft palate, and 7 lymph nodes. His PEG tube was removed last month and he's starting to feel a whole lot better.

Good luck with the treatments. Jack had 4 cycles of cisplatin and 30 radiation treatments. To prevent nausea he took zofran with compazine for breakthrough, and emend of the days he had the actual chemo. He felt that taking it all the time whether he felt nauseaous or not made a difference. He actually didn't throw up until the last cycle -and he was taking amifostine shots as well so it worked for him.

Are they doing the cisplatin in 2 day doses every 21 days? Make sure that you stay hydrated - like 3 quarts a day - because that will decrease the side effects. Jack also had additional IV hydration on the evenings that he had the chemo. What did you decide to do about the PEG tube? If you didn't get one, just be real careful about the hydration and nutrition. Even if you have one, keep swallowing during the entire course of treatments, it will help you recover later on and prevent trismus.

If you notice any hearing loss let them know, Jack has a moderate high frequency loss that may be from either the cisplatin or the radiation but he still feels it was worth it. He told me to tell you he would do it again and to be strong, this too shall pass and you get through it.

Please let us know how you are doing. Feeling prepared was a large part of comfort level for us, I think it makes things bearable. Try not to second guess your decisions, it sounds like you are making good ones. All our best wishes go with you during your treatments. You're not alone.

Regards JoAnne