Dear Katie, Have you discussed trying Erbitux with your Docs? It is palliative treatment, but in some cases,including my husband,it slows down the growth of the tumors - and gave us time to get some final affairs in order- in our case, an additional 7 to 8 months. One hard choice for us was that if John had wished to enter into Hospice, he could not continue the Erbitux. We elected to have him stay at home and take Erbitux until it was no longer effective, at which point we concentrated on pain control and best comfort procedures for him. Do you have family to help in making these decisions? Amy in the OzaRKS

Thank you all for responding back.
Katie, I am so sorry to hear what you are going through. My prayers and thoughts are with you.
Have you gotten a second opinion??? I would surely consider that.
I know this is a horrible disease. I lost my 71 yr old mother in 11/06 and know my 41yr old brother is in the fight for his life with this horrible disease. Tongue cancer and in 1 lymph node.

Jordan, Hi I have been thinking about you lately.
How are things going for you???

I just wanted to give update on my brother's treatment process.

He goes this friday for the final run (or whatever you call it) for his radiation.

He is starting treatment this Monday 6/25th.
He is stage 4.
He will be having IMRT treatments for 7 wks.
Cistplatin 1st and 4th week along with 5fu.
He will be staying in the hospital all week because they have to run the 5fu for 96hrs.
They will be running it through his vein.

I'm kinda glad he will be there all week and get his radiation daily that week also. The cancer center is about 1hr 15min away. Long hike but he is at a CCC and I feel this is the best place for him.
Also my father who has an abdominal aneurysm will be having his 3hr operation that monday as well.
I am so ready for my brother to get started with treatment and get things going. He does have peg tube which we haven't used yet. Just flushing daily and giving some pills through it.
He is drinking liquids only, can't swallow anything else at this time. I noticed he is having a harder time talking. So we need to get this treatment started. He had his pet scan done last week. We haven't heard anything about it so I guess it was ok. I think they would have called if there was any problem.
Don't they use the pet scans to help with the planning of treatment???
When he goes this friday he will ask about the results.
He is drinking boost and the carnation 560calorie cans and liquids soups etc.

I just hope this chemo/radiation works in the next couple weeks and shrinks the tumor on his tongue so he can speak a little better.
And I hope it destroys this beast.

I will keep you updated.
You are all in my thoughts and prayers.
Michelle

Michelle,

Sounds like he will be in good hands and I'm sure things will start to improve but just don't look for fast miracles and tell him to stay tough and do everything he's told to do.

David,
Thanks for the encouraging words. I'm sure I will be asking many questions as we get started.
I am so scared for my brother, but at the same time am so ready to get this treatment started and kill this beast.
I get overwhelmed at times when I think about what my mother went through and how she lost her battle with this disease and it scares me so much.
But I decided that I have to stay strong for my brother and help him fight this. I know he is scared and still grieving over my mother.
As we all are.
I read success stories (such as yours)
and then I read not so good ones,
And I lived through a nightmare.
I'm just venting. Thanks for listening.

I am just focusing on one day at a time.

Michelle

i am doing cisplatin toxetere once every three weeks for three times along with 5 fu that is on a fanny pak for five days. my tumor was 4.5 cm and now i can barly find it.

I don't know much about oral cancer, though I had it myself. I just wanted you to know that I'm so sorry to hear your story and all that's going on with your family. I will do what I do best and pray for you and keep you close in my thoughts. Most of all be sure to take very good care of yourself. It's important that you eat properly and take some time out for you during this time.

All my best,
Donna