Danny,
My husband never got a PEG tube. By the time we realized it probably would have been a good idea the doctors basically said it was too late. All the way through treatments he was able to eat, but very very painfully. He was given pain meds. and a mouthwash they called "Miracle Mouthwash" It was a prescription and had something to numb the mouth. He swished it around the mouth about 1/2 hour before eating. His treatments ended Aug 28 and only within the last week have we seen a positive sign of weight gain -- about 2 months after treatments. He's been living on milkshakes (fortified with some muscle and weight gaining powder you can find in healthfood stores), tons of those really tiny pastas called Pastina, pureed chicken with gravy, tapioca pudding, scrambled eggs and even cheesecake. There is also a product from Nestles called Additions that we add to his eggs and warm food. It is a favorless calorie enhancer we got from the hospital. For product information, you can call 1-800-422-2752 or go to www.nestleclinicalnutrition.com. Basically we have been trying to pack on the calories any which way we can, from extra butter to powdered supplements. Thankfully we can see the end of the tunnel, but we really feel your pain. It has not been easy.

Judy,
If you are contemplating chemo and radiation, my husband had carboplatin, which I believe is a milder form of another type of chemo. It was explained to us that this helps to boost the effects of the radiation, almost like shining a flashlight on the bad cells so the radiation can attack it better. It was given once a week. He also had amiphostine to help with the salivary glands. That was given every day 1/2 hour before the radiation. It is suppose to help "save" the salivary glands from being completely destroyed. He was able to tolerate both fairly well. Truthfully it is difficult to tell how much it helped, but his mouth is not critically dry. If you are not going to do surgery, then I would assume the radiation/chemo may be longer in duration than my husbands. Remeber that radiation is cummulative. You don't start to feel the effects until at least 2 weeks after the actual treatment. By the 6th week it really begins to pack a whallop. I would very seriously consider a PEG tube in this case. Talk to your doctors.

Best of luck to you. BC

BC,
I am impressed with anyone who can go through with radiation and continue to swallow food throughout. Today I tried a bite of apple sauce and later, a bite or two of vanilla ice cream, and I just could not eat the stuff. I also have local pain mouth wash, but never thought of taking a dose of that and then forcing down some food. Sooner or later I guess that I must begin eating something, but just don't feel ready yet...dependent on the PEG for now I guess. Thanks for the information on the supplements. I need at least to put some of that stuff in my feeding tube.

Best of luck with all this,

Danny

All of your stories sound familiar. My husband had his last RAD for tonsil cancer at the end of August. He also decided not have a PEG. He survived on Ensure, lost 50 pounds (fortunatly he started out at 240). He had a modified radical neck dissection On Oct. 9.
The doc's are very satisfied that the Cancer is also gone at this point. This weekend he decided it was time to eat, and he did. Last night he ate meat loaf and noodles. He is my hero, he has been so strong and in such good spirits that it has enabled me to be a supportive and strong caregiver. I am impressed with everyone who has shared their stories in this forum. God Bless LM

Just understand, we all face personal battles, but still here for each other..........Prayers

JudyB, I am so glad you came here. You will find answers to anything you ask from someone who has been there and done that, which is invaluable. I am finished with surgery, radiation and chemo and cannot stess strongly enough the benefits of a PEG tube. Do a search of this forum for PEG to find lots of information. Know for sure that it does not hurt when inserted or when it is in, and can save a patient from the added problems of trying to heal while being seriously underweight. It does not have an odor, it does not leak, and it is easily hidden under clothing. I cannot think of a good reason for not having one. Okay, off that soapbox. You and your family will be in the thoughts and prayers of very many of us until you are through this, and make no mistake, you WILL get though it!
Joanna

Danny,
My husband couldn't tolerate apple sauce either and perhaps the ice cream is too cold. Think of bland, barely warm or room temperature stuff. He even has to let the milk shake warm up a little before he can drink it. He also found that sugared iced tea (not too strong, not too cold) was easier to drink than water. He eats the tapioca pudding at room temperature (it's the kind you buy in little cups that don't need refrigeration.) He found vanilla flavor is easier than chocolate or other flavors. I know this is a very difficult time, but you will get through it. Don't push yourself, but be persistent. Perhaps take a slightly longer view of things and realize that healing won't take place overnight. But it will happen. Best of luck.
BC

Hi Gang:

So, I'm with the crowd on the vote for the PEG tube. Dave is finishing radiation treatment #10(see post Treatment section) today and I've already noticed his fatigue level going up and less food going down due to increased work of swallowing and evolving mouth pain. He is hoping against hope to avoid the tube but I think it's time... and it will be far better to deal with than the nasogastric tube he had post-operatively.

Thanks for the tips on supplements and the great Nestle web site resource. I need to check for supplements at the health food store this weekend as well. The product called "Additions" sounds like a good option and I will check it out.

Dee: Packer mentioned that he swears by a product-is it called "Gainer's Fuel"? And, where do you get it?

Danny: Dave also has the "miracle mouthwash" but his is called "Triple Mix" which contains a mixture of Benadryl,Lidocaine,and Maalox". It's usually prescribed as 1-2 teaspoons full by mouth 10-15 minutes before meals(to relieve discomfort with eating). You can use it in addition to the mouth rinses you use for the mucositis symptoms. Sorry, I would have mentioned it sooner had I known...it's good stuff to ask for if you don't have it already. Thanks for the updates on your swallowing and progress. I have actually fours active sets of pom-poms going for Dave, you, Packer 66, and Dinah right now so it's quite something but we'll all get through it together.

Hope this day finds everbody well.

Kim

Sorry for not responding any sooner, my computer is acting up. We went to the Oncologist yesterday to get the results from the PET-scan. The Oncologist sees only 1 of his lymph nodes with cancer but the computer states that 4 of them have cancer. The Oncologist and the Radiologist were to get together yesterday afternoon and figure out which is correct. If it's just in 1 then he'll only need Radiation therapy, he'll consider it a Stage 2 cancer. If it's in 4 then he'll need both Radiation and Chemo because it'll be a Stage 3. In any case he starts his Radiation therapy tomorrow. If Chemo is needed as well, he can start that up to a week after the Radiation without any harm. I'll keep you guys posted and thanks for all the support.

JudyB