finally some good news, thank God

Tim6003 said:

Joanna ...
I truly believe in miracles and if okay by you ...have just added you and your mother to my nightly prayers...

....now for my "thoughts and open talk only" because by no means am I qualified for more than that....

....?? If I read your bio correctly ..no chemo of any kind? I find that odd. I had radiation and Erbitux (Erbitux is a type of chemo that is newer ..it is not like the traditional platinum drugs...Erbitux is an "inhibitor ...it stops the cancer cells from spreading / spitting, somebody jump in here if I get anything wrong .....

..now I don't know how "new" Erbitux is in the Oral Cancer world ...but it seems like your dx in 2011 would have at least gotten your mother Erbitux treatments. ...but you also did not say in your bio if your mothers cancer was HPV positive ...

I do note with some curosity that your mom has had radiation 2X but I can't tell if the same side of the neck...but I would think they did overlap the same affected area based on what I read in the bio....

This board by all means is a great place ....so others will post I am sure ...you no doubt know about the the oralcancerfoundation.org as well. Be sure and go there and check out some good info.

Is your treatment facility an approved or accredited NCI facility? I don't know your location ...so check out your options in that area as well.

Prayer for you and mom Joanna....I think it's great the biopsies came back all clear ...and in my opinion I think it's a good sign if they want to do another scan ...just seems to me that shows they are prudent and want to give the best care ....but just my opinion...

Tim

Hi Tim
here are some answers: mom never had chemo, doctor spoke about it when she first got diagnosed but decided not go with with it since only one lymph node was involved. After second surgery all margins were negative and tumor was only 0.5 cm so no chemo again. Third time is now so she will get chemo together with radiation to right side of neck (first radiation was only on the left side) after brachytherapy to the tongue but we are still in process with that. They do not want to radiate the tongue since her last radiation to tonsil was not even 2 years ago. So NO, mom did not get radiation twice, only once. Second time is now planned but only to the neck and after brachytherapy if of course given. Her cancer is HPV negative. Trust me: every time the cancer returned we got more then one opinion and everyone always agreed on the type of treatment: These are the locations: everything from the beginning at Hackensack University Medical Center in NJ (one of the best 50 hospitals in America) second opinon always at Memorial Sloan Kettering in Basking Ridge NJ (one of the best) Now plannig brachytherapy and more rad at Beth Israel in Manhattan in NYC. I do know about Ertibux and she will probably get it this time. This has been a long process becasue of the scans and biopsy and now waiting for anotgher scan. It makes me nervous to wait that long but I guess we don't have a choice we must follow the doctors (they know better). Thanks for you answer and prayers. PET scan is planned for 6/7/12 only becasue she must heal after the biopsy which was quite agressive, 5 spots were tested, she had to be put under anastesia and she still has stiches. Hope I am clear enough, I was typing fast sorry for any mispelling.