Linda, I absolutely love your attitude. Once you are through with treatment and back to "normal", you should really volunteer somewhere working with cancer patients going thru treatment. You would be an uplifting support for all who come into contact with you! Think about it, huh? Your encouragement would be "just what the doctor ordered" Thanks! JaneP
P.S. Have a wonderful visit with your sister

Linda,
I used to volunteer at CanCare which is located in Houston. They match you up with new patients who have a similar diagnosis for the purpose of giving you support and understanding. One of the reasons that I volunteered is that when my radiation treatments ended (sorry Linda...but it usually gets a little worse after the end of treatments before things begin to get better) I needed a little support and CanCare did not have enough oral cancer veterans to refer me a volunteer who had gone through the same thing. It seems like most men get prostate cancer and most women get breast cancer!
Linda, once you get to feeling better, you might want to consider vounteering at CanCare.(For that matter, you could call them and ask for a volunteer to help you if you ever feel the need.) I also think that you are doing fine. Just keep up those tube feedings and you will get plenty of nutrition. Eating is overrated anyway!!

Take care,
Danny G.
(sadly the only Danny left on OCF these days)

OK lets be honest here...My throat hurts like hell its hard to swallow everything including water!!! Third week, im sure ya'll can guess, this is when it kicks in huh? Must be, considering my Doctor prescribed all this pain medicine (patches) Fentanyl 25mcg. and Hydrocodone for break through? She said its going to be a long weekend and she thought i might need some of this for it...Wow what a way to celebrate Labor Day, haha. The sore throat and the eating, suck! I can so live with the sore throat, but nothing and i mean nothing taste good ( is this when the feeding tube needs to be inserted ) So far 12 days and into treatment and i have lost 6 pounds, is that good or bad? That in itself can be argued... i think it is great, but my tech doesnt think so, the mask is getting a little loose at the neck, much more and he said they will have to refigure the whatever...technical stuff they pay him to do! Ok, Ok, i hear you ( i wanted to tell him, lets see him swallow with a half fried throat! ) but i figured maybe not, since him and i bond for another 18 days. So any suggestions on what to eat, that doesnt taste like metal, im all ears!!! I hate anything sweet, grosses me out, makes me want to, well never mind, I hate meat...oh yuck!!! Spicey is bad too, kinda burns the throat It's so easy, if you dont swallow liguid or eat, then think about it...it doesnt hurt! BUTTTTT i know we need water and food or at least nutrition to survive, i was just making a statement, I know what i have to do, here, after all im a whining 46 yr. old woman. I HAVE TO EAT AND DRINK!!! hEY, but on the positive side of this...my skin looks good, only one power nap once a day, NO sores in my mouth, Thanks to the L-Lysine and the DGL the spit is alot better too, been using (L-Glutamine) nausea is gone, the crying is gone ( but not the whining) I am entitled to something after all! Ohhh, the lips are chapped, why i dont know? But got something for that too! So all is pretty good here, cant complain alot about this whole thing, i would much rather be doing this than having this cancer, so when i look at it that way...this is a minor thing i will go through for a short time, to get rid of this, so enough whining and lets move on! I WILL SURVIVE THIS, I AM STRONG !!! (of course with all of you, i am)

Hi Linda- You're right, you WILL survive this! For what it's worth:
I got through it without a PEG, but my son had to drive me to the MO every day for two weeks for IV hydration. This was further along than you are, though, about a month into radiation. The mucositis started about then but only lasted for two weeks. The lidocaine, lortab elixir and finally the Fentanyl patches controlled it.

I started out about 25 pounds overweight and lost 30 pounds. Over three months out from radiation now and still not eating; living on liquids (barf!) but maintaining weight. My energy level is low, however.

Keep on keepin' on, Linda. Every day is a day closer to the end of treatment and the beginning of recovery.

Riley

Well, I am probably going to step on some toes here[I don't mean too, and I will apologise ahead of time] but Riley's statement about managing to get through the treatment without a peg because his son was available to drive him to the MO everyday for 2 weeks for IV hydration struck a nerve. What if his son had not been available? What if the MO and the IV's were several hours drive away? What if he had gotten dangerously dehydrated in a short period of time-say over a weekend or holiday? If your Doc offers you a peg, I think you should do it. If the Doc does not, I think you should ask why not? And on both counts, you should assess very carefully what caregivers you have in place and how they feel about it. Amy

Linda,
After a couple of weeks of radiation I too lost my sense of taste and by the third week could barely swallow and got my PEG. I am one of the many here who is a big believer in the PEG tube and see nothing heroic or beneficial in foregoing the PEG. I never once had to go to MDACC for hydration or related problems. Since I kept a PEG for 10 months, I did change it out for a new one once.
I also got the 25mcg patch to start, but shortly thereafter moved up to a 50 and eventually 75. After treatment ended and the pain began to lessen, I moved back downward and eventually weaned myself from the patches.

Make it easy on yourself.

Danny G.

Linda, I am grateful to my docs for many things, but especially for just ordering a PEG - no discussion. I was not convinced it was necessary until I got to where you are. I was able to get the nutrition I needed to keep my energy level up and to heal, as well as get the absolutely critical hydration. When I needed meds, that was a quick way also. I had no problems with it and think I would have had a much worse time without. Give this some serious thought. No reason you should be any more uncomfortable than necessary.

Thanks to all who are concerned about me I have already given permission for the PEG. Did that when the treatment first started! Anytime she thought, it would be time to do it, im ready! Hey, doctors know best, and thank god i am not experienced in this, so i will trust her totally.(I bet she wants to do it next week) I went in today and lost another 2lbs. ( that makes 8lbs in less than 3 weeks) She only gave me 10lbs. cause of the mask getting loose. So im sure it will be coming sooner than later. But, seriously, im ok with it. I cant wait until this week is over with...2 more days, YIPEE! I get a long weekend too, no treatment on Monday will be a nice break from it all. So again thanks to all of you, i do listen to you, trust me, i wouldnt have made it this far without all the suggestions!

Linda, Please try as hard as you can to stay hydrated until you get the PEG. It is really critical, perhaps even more so than the calories you consume. Before I went fully on the PEG, I went in for extra hydration through my port several times before the daily amifostine and radaition, my MO's office ws really on top of that. If you aren't doing that you need to be pouring fluids down in large amounts, whether it hurts or not.

Nelie

YIPEE!!! Half way through treatment! I was soooo sooo glad to see this day come. 3 more weeks or 15 more days and im done, well that is with treatment, but hey that is a start to recovery!!! The only problem i am having is the eating, sorry guys, everything you tell me to try, its so yuck!!! I have lost another 2 pds. so im sure this coming week the tube will be put in place, (you know, i really do welcome it) nothing, and i do mean nothing...taste good! It all taste like metal, i cant stand it. Other than that, yea my throat is a little sore, but nothing i cant live with, my skin is red, but doesnt hurt, so that is livable. YES, YES, this thick spit is driving me nuts...I hate that too. Im still drinking tons of water a day, no problem with dehydration. Oh, i do have a question though...has anyone ever had problems with their stint this late in the game? Everytime i put it in now, i gag, its like a mental thing or something, it makes me so mad, but i have to really put my mind in it, then after 5 or 6 tries, it goes in, and the tech. knows he has to hurry and get that mask on and start zappin! He is very patient with me, and has told me, this normally starts happening, but i have never read anything on here about that? So if anyone has any suggestions PLEASE HELP ME! I want to stay best buds with my tech. and not drive him crazy, haha! Its a long weekend and i have Monday off too, which is soooooo welcomed. My sister has been here, and it has been great, kept my mind off of it, sorry to say i take her to the airport Sunday, and she is off to AZ. Well, that is my update, so everyone enjoy "Labor Day Weekend" and you will hear from me next week! YIPEE, HALF WAY THROUGH!!!