My 18y/o niece was dx two yrs ago with(EHE)in the gums she had excessive growth of the gums covering her teeth this had been going on for five yrs before she was actually dx with EHE they could never detect it on the biopsys finally Baylor at dallas gave us the dx and we went to MD Anderson in houston in 2005 Dr Weber told us this type of ca doesnt respond to chemo we have to surgically remove it. We went into sx thinking we were only going to lose four teeth when she came out she had lost eight teeth, palate, partial sinus cavity and lymph. this was extremly hard to explain to a beautiful 16y/o when she woke up. Well this month she was going for what we thought would be her last 6 month checkup and then we would go to annual ones but to dismay the ca. had come back in both sides of neck in lymph and behind her left cheek. Our surgeon said we needed to remove asap we did the Pet scan and lymph and cheek needle biopsy which was positive he referred us over to the sarcoma dr. Ludiweg who recommended us try AVASTIN first before sx her panel of 25 drs. met and agreed to try this before sx in hopes the tumors would shrink or stay the same. This week has been a crazy roller coaster she is getting married March 3rd and we didnt send out invites until today due to we didnt know exactly what the plan was one day this the next day is a waiting game and then the next day is sit and look at the phone waiting for the drs. to call us. I am asking if anyone has ever heard of this type of ca due to rarity and especially in the oral cavity i am trying despartly to talk to someone who might give her a word of encouragment. We are terrified to leave the ca in there to see if this avastin works due we are afraid it will spread else where. They have told us that they will monitor after we start the med. 6 wks after to see if there is change in the tumors.I pray you will put us on your pray list I know there are alot of people out there who needs our prayers as well and we do pray for the Lord to allow our drs. and tech. to wipe out this terrible disease process. May God Bless Each and Everyone of You. Darla