Newaround here...

Hi,
My name is Kylie- I live in Maumelle, Arkansas (just north of Little Rock) and I was diagnosed with a stage 3 Sarcoma in my right maxillary sinus on June 29, 2012.

I feel blessed that several circumstances came together and I was seen by the Chairman of the department of otolaryngology- head and neck surgery-at the University or Arkansas for Medical Science (AKA- UAMS, where i am an employee) Dr. James Suen on July 2, and had surgery to remove said tumor on July 5th. Per Dr Suen, he got it all, clean margins, etc...(although the path report notes that one edge was questionable)

My tumor was very large- it had started eroding the bone in the bottom of my eye socket, it got the bone in front of my sinus, between my eye and my mouth, it infulltrated my nose and went all the way across to the outside edge of my cheek under the outside corner of my eye... I think if I had not had surgery when I did I might very well have lost my eye. I managed to keep my cheek bone so the shape of my face remains intact- something I was worried about if I have to admit it- and he managed to save a couple teeth on the right upper jaw so that one day I have a decent place to anchor some kind of dental partial to. Currently i have to wear an obturator so that i can speak normally and eat as i have a hole in my palate that opens into my sinus.

My Oncologist was not quite sure what to do with me- in the end we decided to go with what she called a "limb sparing" kind of protocol, usually something they would do for a sarcoma prior to surgery but she felt it would be the best choice when considering the overall impact on me and the benefits vs. the risks. I actually have my last chemo tomorrow, the second chemo day in the third of 3 two week sets. First week is Gemzar and the second week is Gemzar and Taxotere, and those two weeks are repeated three weeks apart- for a total of 3 sets. In between I am doing daily radiation. And- i would choose chemo over radiation anyday!!! As i said- my last chemo is tomorrow, and then i only have 7 readiation sessions left (out of 30).

I have had a lot of mouth issues, I have not had any solid food in about 4-6 weeks (i didn't keep track of exactly when i stoppd solids altogether) I am lucky that the radiation is aimed at my sinus- so although my mouth is involved- i have had no difficulty with actual swallowing. I have had thrush on top of all the blisters and ulcers, thankfully we took care of that and it hasn't been back. In addition to the mouth sores, I have also got blisters in my nose and i have to irrigate my nose several times a day with the same salt and soda mixture i usee to rinse my mouth. I am finally *really* feeling the pain in my mouth and my ENT- Dr Suen- prescribed the fentanyl patch for me yesterday, so far so good- better than just the percoset.

I've been a bit chatty- sorry about that- but i am just so glad to have found this discussion board. I have not had a chance to really share with folks that understand- although i have had excellent medical care- there are not that many options for local support groups. I have read through several posts/threads and have learned quite a bit already. Again- so glad that i finally found time to check out the threads and post, i have been so impressed with the positive support and feedback in everything i have read so far, i look forward to participating and helping support others.

Kylie