CancerCompass message board discussion started by SherG on 5/7/2008 http://www.cancercompass.com/message-board/message/all,23813,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Well I feel like we have hit the wall, 2 days ago he wanted the peg then the nurse told him to swish the magic mouthwash in his mouth right before he ate.  Thst seemed to work and I thought we wwere good to go for a while but this morning he says he feels terrible and is having a hard time with water. When I told him to try the mouthwash he just didn't want to hear it from me. I see the grouchiness now more and more. Reading these posts have been so helpful because I can relate to everything people are saying.HE hasn't really been taking alot of the pain killers and I am wondering if he should just keep himself medicated more.He also has never used the Carafate prescription he was given.He is on Erbutux and the only reaction has been some pimples but nothing severe,He was not able to take the Amisfostine because he got a rash but he is taking Pilocarpine pills 3 X a day.I really don't want him to get the peg because from the posts it looks like that is one more thing to deal with. His nurse has really encouraged him that 60% don't use it and that she would want him to keep swallowing anyway to keep those muscles working.I am getting discouraged after reading that it gets worse after the last treatments for another few weeks and we still have 15 treatments to go.Woudn't it be nice if we could be put in a coma and have all treatments done and just have them wake us up when it is all over.!!!Thanks everyone for all the information and support.   SherG Wed, 07 May 2008 00:00:00 GMT my boyfriend did not want the peg at first but after some education from his oncology nurse he felt it would be a good decision.  he started to use it at about 2 1/2 weeks.  he feels it is the best thing he did. he is able to stay hydrated and not lose too much weight.  he continues to swallow water and most pills.  he also has gone to speech therapy and has jaw exercises that he does everyday.  he was told he will heal more quickly if he is well nourished.he finished treatment 15 days ago.  the mucous is still awful and he is still using a fentanyl patch (100mc) along with oxycodone as needed.  the pain meds do really knock him out so he has seemed comatose at times!  yesterday he was feeling a little better and even came with me to run some errands...he mostly waited in the car but he said it felt great to be out in the world.this is a tough treatment...but you both will get through it.  ~meesh meesh Wed, 07 May 2008 00:00:00 GMT My Surgeon, point blank, told me that I would be getting a PEG tube as I was having a neck disection and treachea. He didn't want me to have swelling of the throat and my airway close. I'm glad I had it from the get go, of course each situation is different. I only had the Radiation as the Surgeon and Oncologist stated that they wanted to keep Chemo as a back-up down the road, just in case.First couple of weeks into Radiation, I was fine, using the Salt and Baking Soda with water gargle method. The Treachea tube had been out and my neck had healed pretty good before the Radiation treatments. I was able to keep my weight up pretty good by using the PEG tube with Nutrin 1.5 .You have to flush the tube with water, so you hydrate yourself that way also. The only trouble I had with the tube was, it got a little irratated and it took a little while for it to clear up. After I was able to get more food in me, I did want it out, so I could get back to my normal routines again. He is half way there, but things are only going to get rougher at this stage and even after the radation, there will be about a 2-3 week period that the Rad's and Chemo still cook as someone put it in another post.The main thing is, HE has to take care of himself, you can only help if he asks for some help. I know, I took care of myself and made sure I did what the Doctors told me, I even over did it and I feel my recovery was better than most that I talked with in the Hospital. My wife, bless her, made sure I had everything I needed before she went to work. The patient has to have the mind set that they have control of the cancer, not the cancer having control of them. You can see that in many posts here. The survivors, they have that mind set, okay, cancer, you may have knocked me down, but I have dusted myself off and I'm back. Your in a fight, but don't quit. Keep going My Best to Everyone here Pop-Pop Wed, 07 May 2008 00:00:00 GMT I would absolutely try to control the pain. Less pain=more eating. I would also go for the PEG tube, it can be a life saver.My oncologist did not give me an option on the PEG tube. They simply told me I was getting it and that was that. That being said--I did not need to use the PEG afterall. But---you never know which way this kind of treatment is going to go.Caring for the PEG tube is really not a big deal. You can shower with it, no problem. If you are not using it for nutrition, you just need to rine water through it once a day.If he does get the PEG, he still must try to swallow something everyday to keep the muscles working. Girlcat36 Wed, 07 May 2008 00:00:00 GMT Personally, I don't think anyone should be discouraged from having a PEG. And for me, my rad oncologist pretty much talked me into it-in his 19 year experience it was needed and used regularly. He was fanatical about keeping weight and nutrition up to keep your body effectively fighting this cancer. Makes sense! It was a lifesaver for me, for sure. I still lost weight; and had dyhyration issues-but I kept swallowing water. I hated the thing (vanity and probably a control issue) but I would highly recommend it One less thing to worry about, really. I had mine for 5 mos. Hang in there! Gayle  gayleann Wed, 07 May 2008 00:00:00 GMT My hubby has the PEG tube and we are now half way through week 4 (just had his 17th treatment today) and he has to date not used the tube for food.  He is living on scrambled eggs, chicken soup and some ensures here and there.  So far he has only lost 4 lbs so we are not doing too badly there.  He HAS used the tube for his hydrocodone becasue it burns his mouth otherwise (full of sores either from the erbitux, rad, or both I guess)  I guess we are in the same boat!  I have to pretty much fight with my honey to get him to take any pain medecine and he pretty much lives in the shower.  He is hating life right now, as am I but I keep trying to tell myself that one more day of misery down means I am one day closer to the end of this.He starts double treatments rad treatments tomorrow until the end, only 2 1/2 weeks to go!!  Is this going to be a whole different ballgame?Toodles for now Brandi g8orgal79 Wed, 07 May 2008 00:00:00 GMT PEG tube should be considered. My head and neck required tooth extraction, PEG Tube, Chest Port, Chemo and radiation. Always thin, I went from 152 lbs at 5' 10" down to 136 lbs in January. The PEG tube saved me from physical ruin. After mid month, I'll finish with radiation, but it is a trial. Getting extra water with the PEG tube as well as using Jevity nutrition mixed with protein powder and liquid vitamins.As the previous responder mentioned, it is up to your husband to make the mental adjustment to own his current condition and state. I accepted my status the day of the diagnosis and decided to fight like a wet hornet. Sure, there are days when I am beat down, but I am not giving up-period. If this skinny guy can do it, your husband can for sure. Turn that emotional state into a 'fighter' state-gives him control and redirects the energy into being active and in control of his cancer.You can read more about my battle with cancer at my blog called Psiplex.http://www.psiplex.com Hope this helps!One Love  psiplex Wed, 07 May 2008 00:00:00 GMT My oncologist did not give me the option either. They just flat out wouldnt start treatment until the tube was in place. They did it that way so as not to have a surgical procedure during treatment when my immune system was weakened so that I couldnt fight any infection.If he has pain meds, get him to use them. The pain can wear you down just as much as the treatments themselves. The peg tube isnt that big of a deal to care for, I just changed the dressing every day when I showered, and made sure I flushed it with a little water twice a day. Some people sail right through without needing it and some are still on it long after treatment is done. Better to have it and not need it than need it and not have it. I used mine for about 2 months or so.Dont feel bad because he's grouchy, he feels like hell and it's going to get worse. The pain meds will help that a little. All you caregivers that put up with our (patient's) crabbiness to to care of us are saints. Best wishes.Mike  micromisterphone Wed, 07 May 2008 00:00:00 GMT Everybody has pretty much covered it. The fact is, this time just plane sucks and is very hard to get through. But he and you will manage like everyone else, and there are plenty of us out there. Just don't let his attitude get to you, I feel as bad for you caregivers as I do for us patients. It's just hell for all of us.All the advice given is right on track, I'll just reiterate the big need to stay on top of the pain no matter what. If the pills are to be taken every 6 hours, take them every 4 to 5. He will not get addicted. As soon as I didn't need them, I stopped. But I sure took them often. This is no time to be a hero stud.Don't get down that you are only at day 17, yes, it does get worse. But before you know it, it will be over and recovery begins. My last treatment was February 25th and I am almost 100%. I actually feel better today then I did before hand becuase I now realize the need to take care of myself better w/ eating right, yoga, excercise, and a renewed faith in Jesus Christ. I'm almost glad I went through it (ok, almost!!). I just have a little scare going on right now under my tongue but if it turns out to be nothing in 3 more weeks, then I'm good to go, and he will be good to go soon enough.Be strong, we are all here for eachother. Patients and caregivers. It's a mighty big bed we are all in.God bless.Rick rick51 Wed, 07 May 2008 00:00:00 GMT Hi Sheri,I am new to this board and just read your postI am going into my last week of radiation for Stage III tonsil cancer.I had my PEG put in from the very begging of my treatments and I find it to be one of the best things I did.Putting it in was an easy and it is not at all hard to use You have to work hard on keeping your ability to swallow everyday That is important, but I feel the PEG allows you to keep up the nutrition and hydration as well. My Dr. really did not give me a choice on it I guess that I could of said NO and no one can make you have an operation, but I Really trusted my Dr. and the idea made sense to me to be safe rather than sorry if I needed it I was told that it would be a tougher operation and recovery so I did, but i could be done.   mtkjohn1 Sun, 11 May 2008 00:00:00 GMT