Hi all.. I just posted an "introduce myself" post elsewhere, but I'll repost some of it here. This is the forum where I will probably spend most of my time!

I just had treatment #13 out of 32 for Adenoid Cystic Carcenoma. I am 39, don't drink or smoke. I had part of the roof of my mouth(into my sinus cavity), 5 teeth and a section of jawbone removed in March. (was pregnant at that time, by the way) Margins are clear. Doing the radiation on my facial nerve, cuz this type of cancer is known to invade it. My side effects have just hit all of a sudden.

I am "lucky" in a way because they are just zapping the top of my mouth, so hopefully my lower mouth will remain mostly fine. They put a foam "popsicle" in my mouth before treatment to hold my lower jaw and tongue down and out of the treatment field. The back of my tonge gets it, so my sense of taste is already screwed up. My upper lip is swollen, sore, and feels horribly chapped inside and out. I know the roof of my mouth is in bad shape, but luckily my obtuator covers it, so I don't feel alot of that pain, because no food or anything touches that area. My gums are turning whitish, and I'm terrified about losing more teeth.

Hoping to find lots of support and information here from you folks also going through this. Thank you in advance, and good luck.

Hi Gretchen,

My name is Nathan, I am 27 and was diagnosed with tongue cancer and have surgery on September 16th to remove the tumor on the left side of my tongue. They are also performing a neck dissection on both sides to test my lymph nodes as a precaution. It has been a " growing pain " literally since day 1, with all the different med's they keep giving me all the crappy side effects ive never had before,

I am also on here for support and a few tricks of the trade on side effects or foods. Please take care of yourself, I need you all in my corner as well.

Nathan

Gretchen,

Did they mention the fluoride trays?

Gretchen and Nate, Good luck to you both and may the pain and discomfort be much less than you think it will be. OC is like other things in life, It all takes time . Lets just hope it is a short time .

[quote=davidcpa]Gretchen,

Did they mention the fluoride trays? [/quote]

No, never heard a thing about them, till I read about it here. I see the dr. tomorrow (always meet with him the first day of the treatment week). I'll ask about it, and also ask for something for the nasty blisters that have just appeared on the inside of my upper lip.

Gretchen,

Welcome to OCF and sorry you had to join our little club.

Did they give you any "magic mouthwash"? It is typically prescribe during RT to help with pain, blisters, etc. It is a compound liquid (a mixture of 3+ medications) and is typically a "swish & spit" (not to be swallowed). There was also topical medication they gave me for my skin/lips (cannot recall the name).

I�m in PA also � Allentown area. Where are you being treated?

Wishing you the best as you proceed with your treatment. If you have questions or concerns regarding the obturator feel free to ask. I likewise had a roof of the mouth tumor removed and now wear an obturator. I am just past the year mark and have learned the "new normal".

Susan, I had my surgery done at Hershey, by Dr. Goldenberg. I am getting Tx at the cancer center here in Carlisle.

I am going to ask about the mouthwash tomorrow. It was just this week that any side effects hit me. It's amazing what a week can do.

Sharon.. thanks. I am not minding the obturator too much. It's more the vain, cosmetic aspect that bothers me. I will get a new, "permanant" one after I finish radiation, but luckily this one fits comfortably, and matches my own teeth exactly. Right now I'm glad to have it, because it covers what's left of the roof of my mouth, and protects it from food, etc. while my mouth is sore. Were you able to wear yours throughout radiation, or did you get so sore you had to leave it out?? I NEVER leave mine out, and hope it doesn't come to that.

Gretchen, My Prothodontist had wanted me to take it out at night, ao the worst part was putting it in each morning. It would hurt so bad. I would try the magic mouth wash just to endure. Then I thought I would try and just sleep with it to avoid the morning pain. It only took one follow up visit with the Prothodontist to nix that idea. I was able to wear it the entire time. I had the temporary obturator until about 6 months, then I got the transitional one. I am suppose to start the process for the final one but am waiting on insurance approval.