greetings,

i am newly diagnosed with stage 3 oral cancer, and in a month i will have half of my tongue removed as well as a series of lymph nodes removed. as part of my treatment i will also undergo radiation therapy and chemo (being treated with cisplatin).
i have 2 main concerns. the first deals with nausea and vomiting. i am very afraid of vomiting over my new tongue. i will have a feeding tube in place for a while, and wanted to know if the doctors make and extra effort to prevent patients like me from feeling sick.
i also have permanent retainers behind my front teeth. will these have to be removed? the reason i am concered is because my stupid braces (along with ignorant dental professionals) most likely caused my cancer, and i really don't want to have to give up any results from the braces because of the cancer. i know that sounds vain, but i went through a lot of pain and discomfort while i had the braces on, and now to be facing cancer because of them makes me very angry. it's kind of ironic that for the first time in my life i finally have my top and lower jaws lined up so that my teeth meet together, and now it's all going to get messed up again. (sorry....a little angry about this situation).

i'd really appreciate it if anyone who underwent something similar could respond. i'm scared out of my mind, and have exactly one month until this all happens.

thanks

You have every right in this world to be mad and scared. I know I was, and I had to wait 2 months until my surgery could be performed. While you are mad at the dental community, I was very mad at myself. I smoked and drank and was told in 1990 to stop both or I could be facing oral cancer. Guess what, I didn't and I had oral cancer. It has been almost two years and I still get angry at times.

I had 1/3 of my tongue removed, the bottom of my mouth removed and rebuilt and a modified radical neck dissection. I was very lucky as my lymph nodes had no sign of cancer, consequently I did not have RAD or Chemo.

Please feel free to email if you have questions or just want to vent.

Anne.

There are going to be some very trying times coming up; but, you can count on all of us that participate in this forum to keep you going.

Anti-nausea drugs are prescribed liberally to those going through treatment. Although I must add that for me their effect was only partial. Towards the ends of my treatments, the nausea and fatigue were very pronounced. But this period of real discomfort with it only lasted for about 4 weeks. I have responded to your other posting regarding the dental professionals causing your oral cancer, and I think that you are wrong. While I have my own beef with the dental professional community for not doing screenings and catching things at early enough stages, I completely disagree with you regarding orthodontists being the cause of oral cancer, yours or anyone else

I can tell you about cisplatin, having just come off dose one of three. First, prepare to be hydrated. One liter before, one with drugs, and one after, and nurse calling to check in/out for three days after. In my case, pharmacist handed me 6-day plan consisting of many little pills, some q4 and most q6. Prevented the nausea (cisplatin is rated as level 5 nausea drug) but put me over the moon, e.g., I cannot remember yesterday at all. Last night skipped the drugs all together and finally feel real again, although tired. That is cisplatin, Evil Cell Killer Extreme! Don't worry about nausea. I only used two levels of drugs, and was offered four. If you don't mind being out of it, you need not vomit. Good Luck!

Joanna

More about Cisplatin.

Hot Tip: When tongue has metallic taste that makes even the necessary water taste yucky, pop a honey lemon cough drop and filter the water through that. Works like a charm! :p

About nausea and Cisplatin ...I had two rounds of Cisplatin at the same time as the radiation treatment was going on. I didn't ever throw up due to nausea, thanks to the antinausea pills they give you plus the steriods they give you to make the antinausea medicine work. I must say I didn't care for the steriods because I couldn't sit still and felt 'weird'. For me, five minutes seemed like an hour. I did have a gagging problem because of the thick mucous gunk in the back of my throat. If I'd been proactive, I would have drank all the time to keep that stuff washed down. Of course I wouldn't, so I ended up making myself vomit after repeated gagging episodes. Good Luck.

About fear .... I remember being so afraid in the beginning cuz I read stories on the internet that sounded too scary. One night my heart was pounding and my teeth chattering. After that, I stayed off the internet (too bad I didn't know about this site). As it ended up, the bad things I read about didn't happen to me. For example, the doctors said that I'd get a terrible sore throat that would need morphine. Boy was I scared. And that never happened! I learned to only worry about today. If radiation was scheduled tomorrow at 9 AM, I waited until tomorrow to worry about getting ready. (I was really quite lazy!) God Bless You.