Hi. I am Sue and have been a member since Oct. Many many thanks to Brian for creating this site and thanks to all who have contributed. I was dx with scc r maxilla. Had R partial maxillectomy 9/25. And must wear an obturator. Surg report stated unclean margins and perineural involvement. Stage 2 "T4NXMX invades cortical bone". Had 15hrs brachytherapy @ Temple 12/7. 28imrt started 12/27. Erbitux started 12/22. Unable to tolerate amifostine. Am already experiencing a sore, burning tongue and no taste. Thought I was prepared with all the researching I did on this site, but was almost in tears this morning. Am looking forward to your replies. Thanks in advance!

Hang in there, you've come a long way already. I thought I was prepared too, but it's different when you are going through it. Do you have any thing specific that you would like a reply to?

Hello, Sue. First off- tears, tamtrums, whatever relieves the pressure are O.K. Since you've been researching, I won't repeat "stuff" you may have already read. However, when you have specific questions about Erbitux[ my husband has been on it since last July] or IMRT, there are many here who can respond to you. You are going through a very tough time and we all hope you can stay strong. Do you have a good support system in place? Amy

Hi Sue. I was diagnosed in October and started IMRT on 12/27 too. 7 days tx so far and taste is just about caput all together, sometimes getting sharp,shooting pains (sometimes burning) through my tongue, and mouth is beginning to become a bit stiff like it was after surgery. My last day of tx will be Feb 8th if I don't skip or miss any appts. Im looking forward to the end of tx and the beginning of recovery....23 more to go. Hang in there!

Sue-glad to see that you have introduced yourself here. I think that you have come to the right place for answers to your specific questions about the radiation treatments and the adjunct medicinal therapies. There is simply NO reason to go through this alone. You guys and girls who go through this difficult treatment procedure are my heroes!!!

Sue,

There are many of us that have recently completed IMRT and would be more than willing to share the details of our journey through the Dark Tunnel as I called it. Just ask and the responces will flow.

Just keep one very important point in mind...you will emerge from the Tunnel and you will feel much better around the 15th of Feb assuming you don't miss any Tx days. Mark that date on your calendar.

Sue, There is a light at the end of the dark Tunnel. Tomorrow will be exactly three weeks post treatment for my son, and already we've seen a positive upturn! Not as much pain and the beginnings of an appetite coming back. Each small step rates a celebration! So hang in there and keep in touch. You can do it!

Sue,

Hi there girl! I know that right now everything seems to be hurting. Just know that we are all here for you.

When I was in treatment I was away from home and had no computer. It would have been nice to be able to communicate here. So make sure you do. OK? I also only thought about one day or week at a time. It was to hard for me to think beyond that. (it seemed to far away)

Toward the end of my treatment and a good month after I did a lot of sleeping. I welcomed it with open arms, I did not have to feel or think.
Keep posting it will help you.

Take care.
Diane

Hi Sue,

Glad to see that you have made it to the Forum. I have been getting updates from Colleen and I am here if you need anything.

You will be getting some great advice from the members that have been through similar treatment. Just the support alone, is well worth the visits. Keep checking back as often as you feel up to it.

I might add that when you can, fill in the "Signature" section of your profile so that whenever you post, everyone will be able to see your diagnosis, treatment etc..

Jerry