My boy friend has had 3 + 2 days of radiation to head & neck region and 5 chemo treatments. It is becoming VERY HARD for him to swallow. has anyone been able make through treatment without a feeding Peg? His Dr. does not want to give him one. Thanks!

My boy friend has had 3 + 2 days of radiation to head & neck region and 5 times Chemo. It is VERY HARD for him to swallow. Has anyone made it through treatment without a feeding peg. His DR. does not want to give him one. Thanks?

Kyle, I'm not sure what 3+2 days is, but I did have radiation and chemo without a feeding tube. I think there are a few more people on the board who managed without it.

It's not easy, I was on ensure exclusively pretty much from the second half of 7-week treatment until almost a month after it ended, but I managed. I did lose quite a bit of weight - probably 30 lbs over the course of the treatment, but I was lucky in the sense that I could afford to lose weight. I was very disciplined about eating, and my family and friends were very disciplined about cheering me on. It was hard, painful, and I had to take percoset and magic mouthwash before each meal, otherwise I couldn't swallo, it was so painful. My throat didn't become constricted, it was just mucositis and resulting pain.

Good luck.

Did the doctor have a reason for wanting to avoid a PEG?

Kyle,

My husband went through IMRT and chemo w/out a PEG or a Port and I would not recommend that approach to anyone. On the PEG front, he got very dehydrated and it was problematic for him to take medications. On the Port front he was, at times, a human pincushion to the chemo nurses because the chemo made his veins bad.

Our doctors did not recommend either, if I knew then what I know now I would have demanded both.

Kyle

I did my entire 5 days a week of radiation(that ended up lasting 10 weeks because of IMRT machine breakdowns) plus 8 full chemo sessions without a PEG. It was difficult but I was determined.
However, what matters here is what the patient wants not what the doctor recommends. My doctors actually hectored me to get a PEG and I had to hide the amount of my weight loss by putting lead fishing weights into a multipocketed vest.
I had no choice this time around. There have been many people here who posted that they went thru treatment either without ever getting a PEG or else getting it and never using it. However many more posters insist the PEG was a godsend.

Kyle, there are no medals or awards given out to the few who manage to get through treatments without a PEG. Even with a PEG in my husband lost 30 lbs. He was very reluctant to get the PEG but his RO, MO and ENT all INSISTED he get one before treatment ever started. Thank God he did or I doubt he would have gotten through treatments without being severly malnourished or hospitalized for dehydration. He forced himself to swallow water every day so he didn't loose the ability to. His doctors explained to him that the body responds much better to treatments if you are getting the nourishment and hydration you need. My husband was so extremely nauseas for weeks from the mucus and Cisplatin that I can't imagine how he would have been able to get enough nourishment in orally. Good luck.

I would certainly ask more questions as to why your Dr is not recommending a PEG. I still lost 40+ pounds with a PEG. I can not imagine what would have happened with out it. They are of minimal discomfort and a life saver when the mucositis took over.

Kyle, I did my six weeks of radiation and chemo without a PEG, but was extremely disciplined about getting enough nourishment with Carnation VHC, high-protein smoothies, and tons of Boost. I had to put up with a lot of pain to "eat" these things, so used pain meds every four hours at the worst points during tx.

What is the location of your boyfriend's cancer? Since mine was hard palate, I at least had my healthy tongue and throat to help me swallow through tx. If your boyfriend's cancer is in his tongue or throat, it's probably harder to swallow and he may need the PEG.

From what so many on this forum say, the PEG can be a really great aid for maintaining weight and avoiding the discomfort of eating during tx. I would keep asking the doctor about it...

I did it without a PEG. Lost 5-6 lbs a week. You must be very determined to get food down. Yes it hurts. For me the first 5 weeks were the worst. My tonsil shrank and the pain eased up after that (Your results may vary, and probably will).
The only advantage I see is that I kept my throat functioning so maybe moving on to more solid foods was easier for me. That too will vary.
I ate a lot of protien shakes, soup and after 5 weeks I was able to get chicken pot pies down.

I went Pegless and lost 30% of my total body weight where I had none to loose. I didn't have the benefit of this site's wisdom either and I didn't listen enough to my wife but in spite of all of that I did make it through. Would I do it again without a Peg...Yes. Would I do it again without a Port...No.

Dehydration was never an issue for me without the PEG. Nor was any malnutrition. I lost all my body fat but I had substantial muscle mass to burn. I did give myself an imaginary medal for not getting a PEG. The parade of "horribles" of not getting a PEG don't happen to many of us. However, now that I was forced to get a PEG, I certainly do not want to start the PEG wars all over again as I did when I first posted in my enthusiasm to help others avoid swallowing problems. With apologies to Joni Mitchell:
[quote]I've looked at PEGS from both sides now,
From in and none, and still somehow,
It's PEG's illusions I recall,
I really don't know PEGS, at all.[/quote]
Charm

PS. Just got Judy Collin's tickets for next month

[quote=davidcpa]I went Pegless and lost 30% of my total body weight where I had none to loose. I didn't have the benefit of this site's wisdom either and I didn't listen enough to my wife but in spite of all of that I did make it through. Would I do it again without a Peg...Yes. Would I do it again without a Port...No. [/quote]

Man, were in the same boat. I went from 160 to 130 and change. I had one doc (oncologist) telling me to go without, another (radiologist) telling me to get it. I'm glad I didn't but I wish like heck I'd gotten the port. It really blows now when I go to the doc and they have to poke me multiple times because the chemo ate up all my veins. Could be a lot worse though!

I went peg and tube less thru rad, chemo, and implants. Yep, I lost 70 lbs and felt good fo awhile. Now it is catching up and fast. My Dr screwed up by telling me I didn't need rads or chemo and that he got all of the Cancer. What a screw up he had there. The Dr. I saw last week siad that the one at OSU made a really big mistake by telling me this. He told me that I should have stayed in Wheeling at the CCC there because the Dr was well up on my case. The only thing I have left now is hope. It seems this nasty stuff robbed me of not only a future but of a good woman and all the good things about life. I hope you make out much better than this and go get the other opinions .

I will say that having a family that cares makes a great difference if they keep on your back and force things. I have my daughters heel marks on my back. LOL

Jim...so glad that someone is placing heel marks on your back. There is a time to be tough and brave but also a time to let people help you do the best thing for you. Please let them be the caretakers that you need right now...

Deb

Kyle, I luckily was spared the chemo ordeal but I did do 6 weeks of IMRT, preceded a month earlier by a radical neck dissection. I elected not to get a PEG and now, months later, regret it. At the time it seemed like a good decision, especially as I had a crisis during my neck surgery and almost didn't wake up, necessitating an emergency tracheotomy. So I was a little gunshy about another operation.

But the second half of RT and the two months or so following were such an ordeal - mouth and throat full of sores, swallowing disfunction, etc. - that in retrospect the PEG would've made life a lot easier. And maybe helped me keep on some of the 30 pounds I lost.

If you have a choice, I'd advise going with the PEG.

Good luck to you both!
David 2

Kyle:

I went through without a PEG, the team said they would see how I did in the 1st few weeks and I did ok. I was on a trail protocol that seemed to help withsores, etc. The last 2 weeks of treatments and the week or so after treatments were fairly rough and my diet consisted of water and ensure. I did lose 30lbs or so. I think part of that was no junk food. But I would listen to the other posters, I believe I was in the minority as far as pain and discomfort. As the Drs said, bad genes to get the cancer, great genes to handle treatments as well as I did. Based on this forum and asking my Drs, there is no "book" on who does well during treatments and who has a rough go of it. My only suggestion is be prepared for the worst and pray for the best.

Good Luck.