Tongue primary vs. tonsils and feeding tubes

tnsilcncer said:

Tonsil...
Wow! Everyone's advice is so good! I was diagnosed with SCC, primary tumor growing from my right tonsil on December 1st, 2010. By the time they actually decided there was a problem and sent me to Ear, Nose and throat, the cancer had spread to all my lymph nodes in my right side, my left tonsil and the lymph node right off of my left tonsil. I'm done with radiation (33 of them) and had chemo (only 2 Cysplatin as it affected my hearing a little bit and they felt that the benefits of doing the last one were less than the risks). The sore throat hit around 3 weeks into treatment, right after my first chemo. The PEG tube was a life saver. I could take nothing but small sips of water by mouth for about 6 weeks of treatment but I only lost about 25 lbs so the tube worked exactly like it was supposed to. I had a PEG tube placed a week and a half before treatment started (at my oncologists reccomendation) and I'm glad that I did as my body was so tired from everything else going on that it would have been harder to do it during. It's a minor procedure, small incision, worth it. I think that you could probably eat through the pain, but the combination of pain, no saliva, and no taste makes it almost impossible. The only way I can think to describe it would be to look at a picture of a turkey dinner in a magazine, tear it out and eat it. Same effect. I only lost hair from the radiation line (the back of my neck up to the tops of my ears), and my neck got VERY red, but they can give you zinc oxide cream to use as well as some over the counter creams (Aquaphor works GREAT) to help with it. Make sure you use them exactly as the doctor says so your skin doesn't break. Mine didn't. Mucus was a problem, but I was able to control it with constant sips of water. Mine was more disgusting than anything, didn't really choke me or anything like that. Herbal teas were great. Couldn't taste them but could smell them and that satisfies somewhat. I'm now 11 weeks out from radiation, my taste is about 75% back with sweet still being the missing one. About 2 weeks after I finished radiation, I started getting radiation blisters in my throat and on my tongue. I understand that this goes on for about 6 to 8 weeks normally, I'm still dealing with them but I guess I'm a lucky rare one . The magic mouthwash is great stuff, I've also found that once the blisters go away off of your tongue and they're just on your throat, put the mouthwash in a spray bottle (I emptied a chloroseptic one and filled it with it) and that way you can spray it directly onto your throat and miss your tongue (once you can actually start tasting again, you don't wanna numb those taste buds!) The most important thing is try to keep your spirits up, laugh as much as you can, try to keep your routine as normal as possible. Sleep when your body tells you to but not all day because then you're up all night, try to stay as active as possible. If you want to cry, do. It's ok to have a feel sorry for yourself moment, cancer sucks and it sucks that we have it,we don't deserve it. But we do have it, and after you get done feeling sorry for yourself, smile, and be thankful for all the good things that you have in your life that bless you. I listened to Christian music every morning before radiation so that while I was on that table in my "mask", I would have something running through my head to calm me so I wasn't focused on being strapped down. (The mask is a plastic mold they make of your head and neck that goes from the top of your head to the tops of your shoulders-it has lots of little holes in it and they make nose holes so you can breathe but you have a piece that goes into your mouth and it can be very confining. They put it over you and clamp it to the table during radiation so that you are in the exact same position and the beams are hitting the exact same spot every time). That's about all the advice I can give at this point. I have surgery May 17th so technically I'm still in treatment. If you have any other questions, please feel free to ask.....and I'll keep you in my prayers! Good luck!

Skiffin16 said:

SUCKS...
I dunno, I use to think it sucked, and it is a rough diet for sure....and maybe it's just because I haven't went through it for almost two years now.

But in reality, it didn't really suck...it just is what it is. Something you have to go through to get to where you wanna be....mainly healthy (or somewhat) and alive.

It's definitely better than the alternative, so in that perspective, it REALLY doesn't suck so much.

Anyways, ya it's tough, but you can get through...many of us have....just so we can stay on here and give you a little hope, some of our experiences, and tell you....

I still go to work everyday, fish nearly every weekend, do everything I did before minus a little saliva mainly at night, and taste that isn't quite what it was before...but you just adjust to the things that you like more now.

It doesn't really suck that bad, for everyone.

Best,
John

bunnymuffin said:

also forgot
You might be prepared for the burns you may get on your skin at the radiation site...plus some hair loss if you dont get it from the chemo..My chemo didnt have that result, but I lsot some hair on the back of my head about 2 inches up from the origional hair line....they should have plenty of meds and wrpas to help sooth any pain and peeling...my burns were 2nd degree, with some peeling...and lots of blisters.....not trying to scare you..but its something you should know about! My burns didnt appear til the last 2 weeks of treatments....and just becuae treatments end, the side effects wont..You will continue to cook for weeks after the last radiation...Noone told me about that, or maybe they did and I was too drugged to remember? either way....hang in there!!!! XOXO