Emilie, sorry to hear about your diagnosis. But welcome to our little band of heroes, of whom I consider myself a junior member. You are among friends who will support you to the nth degree.

Charm's post above is terrific and, as you get to read more of his, only indicative of his level of intelligence and knowledge. But in fact everyone here is great.

Ask us any questions. Rant at will. Send IMs. We are here for you.

I can only imagine how scared you are and ditto your son. If this had happened to one of my parents at that age I'm not sure how I would have been able to handle it. But he can come on here and post too. We have lots of care givers and we always welcome them equally.

It's true: your friends and family need to get it together for you, not the other way around. Most do. It's human nature. But never forget you have another family here.

David's advice about the PEG is excellent. As a point of information (we're all different so keep that in mind) I did not get a PEG during radiation and had a very difficult time keeping my nutrition up. We all tend to lose some weight during treatment. I found that the sores in my mouth were so large and numerous that it made it extremely difficult to swallow even water. But again, your experience may be different. So if you're going in with the strong, positive attitude to tough it out through the pain, I admire you and hope you can. And then you always have the nasal tube option if you need it.

Keep us posted every step of the way.

Courage!

(Oh and it's a good idea to have your thyroid levels checked before rads, as that can mess with them as it has with many of us. Also assume you're seeing a dentist pre-treatment for decisions about your dental health and flouride trays; if this is all Greek to you, ask your RO - radiation oncologist - when you see him/her tomorrow)

At a recent SPOHNC meeting, the coordinator, who is a speech pathologist, said the trend now is that more doctors are advising not to have a peg tube placed. I guess it's due to some having to use it permanently or becoming depedant on it longer than necesary. Anyway, one was recommended to me three years ago, what I read to do also, and even have my 2nd one, which I doubt I could have done without both times.

Well it seems it's quite different in this part of the world.
We were told that patients who have a PEG placed prior to treatment starting do better in the long term. They lose less weight and consequently have a better outcome.
Kris had his PEG placed prior to rads and chemo, they would not start without it in situ. Despite this he was strongly encouraged to continue to swallow as much as he could. In fact we only used his PEG to supplement feeding on 2 days of his treatment.
Tammy

I was told I had to have it but it was my choice not to use it... It didn't help that I couldn't stomach the formula. In the end I got by without it. Welcome. You'll get through it - you're stronger than you know. Hugs... We'll be here to help.

As we learned from the PEG wars, oncology doctors disagree on whether a PEG should be routine or exceptional. The concern is that swallowing recovery can be compromised or delayed. In the past, I've posted excerpts from a conference of European doctors that they think PEGs should be avoided if possible. Others here have reported the exact opposite, their doctors actually required them to get a PEG even when they could still swallow and eat fine. My CCC radiologist was in the no PEG (unless significant weight loss adverse to health).
I remain a staunch advocate for those who like myself, found a deep psychological boost and satisfaction in getting through TX without a PEG. Others, perhaps a majority, are big advocates for getting a PEG as a matter of course. It's ironic that I'm on a lifetime PEG when I resisted it for so long.
Charm

Truth be told, I could lose a 50+ pounds and be down to the "normal" people range. I think I will get the PEG, so even when I lose the weight, the nutrients I get in are the right nutrients, not just what I can get past my throat. Still plan to swallow as much as possible. I bought a Ninja processor so I can soupify just about everything. Can't afford to lose muscle weight.

Hi Emilie,

As you can tell from the opinions stated above, there is no right or wrong option here and whichever one you choose, the most important factor is that you are getting plenty of nutrition & fluids in during your treatment.

My wife is currently in her last week of treatment and has managed to get by without a PEG but the doctors are recommending a nasal gastric tube just in case as the few weeks after treatment are supposed to be the most difficult.

As we end the near of our treatment, we wish you the best of luck with your upcoming and encourage you to stay positive and keep one step ahead of the curb!

Even though you may have some weight to lose, try your very best to not lose any. It will make this a whole lot easier on your body if you maintain your current weight. When things dont taste right and it hurts to swallow its awfully hard to take in enough every day. Right now you should be eating all your favorites and not worrying about gaining a couple pounds. Go into this without having any cravings or regrets. Eat all the high calorie, spicy, chewy foods you like. Weight loss is discouraged.

My doc told me his goal was to keep me at my same weight from beginning to end. It didnt happen and I lost 65 pounds. I also ended up hospitalized more than once for malnutrition and dehydration.

Emilie,

Whether or not you use the PEG or the Nasal Tube, you control what nutrients are put through them.

Just to weigh in, my doc was opposed to the PEG at the start. As it turns out, rad is on hold for me, but he made it clear that he did not want me to start with any tubes. The NG was disaster for me in hospital and had to be removed early. You might want to check to see if you have any latex allergies in advance.