@ Caco: That's the CG's battle! It is the patient's decision...all of it! We can try whatever we can to convince but the final choice is out of our hands. Best wishes to you and your dad in getting the best care at the best place for him!

If J's follow-up decision was mine and not J's, I wouldn't have to spend so much time in my "happy place".
But, sanity is a good thing. You have a firm grasp of the dynamic. As a CG, you are already ahead of the game.

What ever his decision, you know you have your entire cyber family here behind you to get through this. It can be tough love sometimes, but no one here wants you to have anything but the best information, and any emotional support either of you need. No one gets through this alone. Don't mistake "tone" of a post for lack of caring. I am one of the worst when it comes to that. No questions are off limits and no questions are dumb. When you feel frustrated and can't vent safely at home � bring it on.

we have news. dad WILL do chemorad at CCC. and a shock...although HPV negative his tumor is p16 positive. we are cautiously jubilant.

Hopefully things will go well for him glad he chose the ccc!!! Hugs

It does appear that P16 positive brings a higher treatment success rate and we are all happy that he chose the CCC route. Again use this site as often as you wish. That is EXACTLY why we are here.

Thank you.

David, your signature reads that you did not go with a Peg. If there is a better place to question this, please let me know? Dad's a bull, body and mind--not overweight but thick muscled and headed. He has had more lives than a cat due to work related injuries that would cripple many, but at 77 he is better than me, he was hammering a roof last weekend. He took Cisplatin years ago for melanoma and worked daily through it. He wants to hold off on getting a PEG tube as long as possible.

I know he will change in treatment, and have a clue what's coming. Here's my rational thinking: He is 77. I am all for him being the strong guy, but now treatment includes IMRT. Rads will sneak up on him and whack him hard, and if he doesn't have a PEG, it won't be pretty. So GET the Peg. Do it when you have the strength now. Clean and play with with the damn tube daily if he wants to, he hates all the water and tea we're forcing on him now anyway, eat what you can and use the Peg if/when he needs it.

Thoughts? Again, thank you. I hope to return the support to others soon.

Caco, I realize you were addressing the other David but I'll weigh in if you don't mind. I also went through RT without a PEG, although I didn't have chemo as well.

I found the mouth and throat sores so painful and debilitating that, by about week 3 or so, I was wishing I'd gotten the PEG. We're of course all different. I've been a lifelong canker sore sufferer so maybe that made my mouth more vulnerable, dunno. But I found it nearly impossible to drink even liquid nutrition and water so didn't get nearly enough. Lost 30 pounds, which of course isn't uncommon.

It took me a good 6 months after the end of RT before I could even tolerate solid food.

Perhaps others will add their comments. Best of luck to you and your dad. All your choices have been good ones so far and I have no doubt you'll do the same with the PEG issue!

Caco

There is zero doubt that caregivers all prefer that patients get a PEG. Then there are stubborn old men like myself, Michael Douglas, etc who choose not to get one despite the rational reasons. Like the Simon & Garfunkle song goes: [quote]I've been slandered, libeled, I've been called words I've never heard in the Bible[/quote] for standing up for our right to feel this way. Psychologically, I felt that getting a PEG was letting this cancer take away yet another part of my life and I was damned if I was going to let that happen. And I didn't. Others just don't care. Good for them but they are not me.
We have had heated discussions here, even "PEG Wars" because I refuse to remain silent when posters claim it's always medically necessary or snidely comment that only macho pride could be the reason. Inner strength and confidence is crucial to beating this cancer. IMO your father's feelings have validity. It meant a lot to me to go thru the treatment without a feeding tube which is why it is in my signature line. Clearly you love your father, but competent doctors can put a PEG in anytime with little hassle. Heck when I finally had to get one after the cancer came back and the surgery crushed any hope of swallowing ever, I was down to 119 pounds and the weakest I've ever been in my life. Inserting the PEG took ten minutes.
Finally, most all posters here echo what their doctors told them. At my CCC, my RO and MO were adamant that a PEG should not be routine but only an exception. None of my cancer cohort had a PEG nor did we have any dehyrdation etc,.
The good news is that there is no right or wrong answer here.
Charm
Charm

Not this caregiver, Charm - When my son, my daughter, my nurse-friend and I were meeting with the cancer team about the Rad Tx about to start, we were told about the possibility of tube feeding and presented it as a choice. At that point, none of us had the benefit of having heard about OCF and my first reaction was an emotional one - I couldn't bear the thought of my son having to get his nutrition from a tube after everything else that he had had to give up. It horrified me, so that when my son (also uninformed) said no, the rest of us all agreed wholeheartedly. We didn't realize what was ahead of us. At one point with Paul, losing weight, and not being able to eat, or drink I did present it to him as a threat - and that got him through the last few treatments without a PEG. It was rough but he made it through Tx without dehydration, albeit with a few complaints about cooking ability (he accused me of adding salt to his sodium free chicken broth!). It's true, there are no right or wrong answers here.

I suggest you use the search function of the boards for the word PEG. It has caused some heated discussions and both sides have valid arguments. I'm a PEG user and advocate. I and others have voiced the pros and cons of it all, not all science based, but spoken with true desire to help someone else. I was one of the longer PEG users at about 14 months. I also had more than the short term morphine for pain in my mouth and throat. I went through before IMRT was around. There are some issues related to dysphagia, and what causes it. This is a major argument in the PEG wars and if you do not understand what causes it at the end of reading things, feel free to call me or ask and I will send you some peer reviewed opinions on the issue of swallowing. This is the main issue in my mind. I refused to have a PEG until week 4 when I lost enough body weight that the decision was taken out of my hands by my treatment team. MDACC has a strict policy about this, and I was too beat up at the time to fight it any longer.