hi All - havent been here for a little while - have been busy with JC and his IMRT appointments. all is going well - we are leaving week 4 behind us today. his PEG tube issues have become a thing of the past, altho home health care is coming out tomorrow to show us how to use it for feeding, as he has lost 5 lbs these past couple of weeks. yep, his taste buds have gone on vacation, so everything is tasting like "cardboard" as i have read about, so food is becoming an issue at this point in time, tho he is not having problems with eating, but with tasting!! his spirits are up, but the fatigue is slowly creeping up on him. his sleeping hours are getting completely turned around - but i figure that by the time this is over and done with they will have come around again (i hope). dont really have any questions right now, just an update on how JC is doing - tho i figure that i will be full of questions here shortly when the radiation really kicks in -
thanx for being here....

Robin

It sounds like he is right on track with things, right symptoms at the right time. He will get more sluggish, and there will be other issues down the road, but at this stage of things your report sounds like he is responding normally (if that word can be used for what these treatments cause) to what is going through. Good luck, and lets hope that IMRT makes this an easier path for him than regular radiation.

Sounds like he is doing quite well! Only 5 pounds that is pretty good. The taste thing is odd isn't it? I found that the radiation takes away the appetite besides making every thing taste flat (a double whammy). Don't be afraid to try herbs that aren't spicy hot in his food. Kick it up a notch! Because the sense of taste is so changed try lots of combinations. I found I liked the taste of things I previously hated (go figure) The important thing is to get that nutrition in. A cup of soup in between meals, a heavy gravy, it all helps.

take care

Robin and JC.......Thanks for the update. Good to hear that JC is handling RAD as well as he is and a 5lb weight loss isn't bad at all. Hang tight, it's almost over. Sincerely, Donna

the doc gave JC an oncology mouthrinse - it has lidocaine, benedryl, and maalox all in a bottle - he tried it and it numbed his throat for about 20 minutes so that he could eat if he was having problems. he isnt sure if he likes it or not - i think he is afraid of not being able to feel if he has chewed the food enough and choking - has anyone tried this mouthrinse? any problems with it? (tho it doesnt help the taste, or nontaste of the food any - drat!!)

I tried the mouthrinse and tossed every time I used it when I swallowed it. Swish and spit, I was ok but that doesn't numb the back of your thoat. After I got sick, then I would eat some liquid protein drink real quick before it wore off. They also gave me a spray with a thin stainless steel tube applicator and I used it once - burned like hell for about 30 seconds - pure torture!
I had lost at least 10 lbs by week 4 for so it sounds like jc is doing really well. Is he getting chemo too? In my case the chemo made everything a lot worse. I am 57 days out out treatment and my taste buds are coming back really fast. Sleep is fairly normal and energy is returning. I'm out of bed almost everyday now.

hey gary - sounds like you are doing really well and only 57 days out of treatment!! that is so encourging! no, jc is not doing chemo, just the imrt. and initially they had planned on 35 treatments but have backed it up to 33! he tried gargling with the mouth rinse which seems to get it more into the throat as opposed to just around his mouth, but still has the fear of choking and i cant blame him on that one.
each day and week seems to bring something new and different to overcome, but overcome we will. his spirits and sense of humor remain intact and for that i am thankful!!
congrats on your taste buds coming back, along with your energy levels - i know that you went thru imrt also and will steer clear of the little stainless steel tube thing!! more "torture" is not needed here!! thanx, gary!

Robin

Robin,
I also tried a little trick that worked pretty well with the Pink Magic stuff. I tried my best to swallow it on the side of my throat where the pain was (the tumor was on the right tonsil), hence not numbing my entire throat or mouth. I would do this using a spoon to deposit the stuff in the back of my mouth, on the right side. I was able to detect the food I was chewing - but most of the food I was having then were shakes and liquid protein drinks anyway -not much to chew. But painful to swallow. The pink stuff interferes with the gag reflex and it is easier to swallow down the wrong pipe. The pain is diminishing at a steady rate. I am very glad I had IMRT.

Gary
SCC, Stage III, Right Tonsil
Treatment began Jan 27, 2003
Treatment ended Mar 20, 2003

well, home health care just came and went - JC is now attached to a gravity feed bag, tho he will still be eating what he can, i feel a little better about him getting what he needs now nutrition wise!!
i have heard nothing but positive things about the IMRT and am glad to hear that from you too gary. and the fact that your taste is coming back fairly fast is really encouraging.
when they did the neck dissection on jc they also removed his right tonsil (tho it came back clean) and that was the hardest part of the whole surgery was the removal of the one tonsil, and the most painful for him. (personally mine were removed when i was 6 and that was soooo long ago i dont remember it now - plus it is alot easier at a young and tender age)
i know there are going to be ALOT of other issues in the next few months to come - thank you all of being here...your angels from above!!!!

Robin

Funny you mention that. I had tonsillitus so often as a child that they could never find a window of opportunity to yank them out! It figures that the SOB's would wait until I'm 55 to try and kill me! LOL They just melted they puppies into oblivion with the radiation. But I have had nightmares about adult tonsillectomy - I hear it really hurts. But that's what they have pain management for! I would be screaming at the doctors for relief if this is still hurting him (or amy thing else for that matter). Pain management is part of the cure.

oh they had him on some pretty good meds for his tonsil - liquid oxycodone. but he really isnt one for pain meds unless really needed, and i already know he is going to need them. but at this point in time he isnt using them yet. the docs have been really good about offering them to him. he did ask for, and got, something to help him sleep right now - ambien and he is only taking half of one right now.
we also requested, and got, a note from the doc for the seatbelt issue. it seems the seatbealt goes right over one of the "starting to get tender" places on his shoulder/neck area, plus the lap part where the shoulder part meets puts the PEG in a pretty vulnerable position. tho i am not happy about him not wearing a seat belt, i do understand that it bothers him and will only get worse in the near future. and i do keep asking him if he is in any pain, but so far so good - trust me, the minute is does have any pain, i will be getting pain meds for him!!
believe it or not, he has taken to the PEG tube feedings like a duck to water - he thinks its great and is soooo happy that we had the PEG put in place before he got to this point in time, even tho we did have a couple rough weeks when he first got it, he said it was well worth it now!
am hoping for a few smooth days this week for him before the side effects of this start kicking in - he could use it! when did your mucous start getting thick? i know that is the next obsticle to over come.
Robin

I hated the pain meds too, partly because they didn't last very long and mostly because of what they did to the digestive tract. The difficuly with constipation out weighed the oral pain.

As far as the mucous problem people talk about, I'm happy to say I never had that problem. Perhaps you will be lucky too.

The single most painful part of all my treatments was the tonsillectomy. I just wish my ENT had taken them both out.

hey mark -
yeah, that is one of the things that i really didnt understand is why only remove one. i had mine out when i was 6 and have successfully lived with them for 40 years so far. there was a time when they removed them and then they quit - i know my brother has had tonsilitis all his life! but i guess they only remove the necessary parts. i just pray that they never have to go and take the other one after what he went thru with the first one - but that still doesnt help my not understanding why they didnt take both of them while they were there, to me it would be logical to do that....but then i'm not the doc and havent gone thru years of medical school either! (tho right now i am truly getting quite an education that i had never imagined!)
has anyone that has had the PEG tube experienced a "lowgie" feeling (thats a jc word meaning sluggish i think) after feeding? is that normal? he is very sleepy and tired after feeding (i already know he has to sit up for an hour after feeding)
Robin

Hi Robin. As far as JC's sluggish feeling, by the time I was where he is in his treatments, I was pretty tired most of the time, so I think what he is experiencing is normal. Also, now that you have begun feeding PEG, he is probably getting more food in his stomach to digest than he has had in a couple of weeks, so that will make him feel like one can after Thanksgiving or any big meal. As he becomes accustomed to more food, he should not notice anything more than usual tiredness. All in all, I don't think this is a problem. Hang in there!
Joanna

ahhhhh JoAnna - thank you soooo much - i didnt even think about how much food (or lack of food) that he has been consuming the past couple of weeks - i am sure that is what is happening right now - they told us to wait 4 hours between feedings - so it seems like he is hooked up all the time - maybe i should cut back one can and work our way into it??? it takes about 2 hours for 2 cans.....
we are hanging in there - each day brings something new - but then each day we over come something too! i guess it balances out somewhat!!
thanx,
Robin