PEG

Peg
I had 35 rad & 8 cisplatin treatments. They told me that I would need a peg tube by week 4 so I gained as much weight as I could (10#'s) before I lost my appetite and the pain started. I never had to get a peg tube though. I'm 41, which they say is young (ha) for my type of head & neck cancer (both tonsils). They tell me that is why I didn't get sicker. It was my last week of treatment when I just stopped eating. I could see where a peg tube would be beneficial, I just really didn't want one. Sounds like you're still feeling positive - that is SO important. Keep it up, and good luck with the rest of your treatments!

Hondo said:

Hi alenoard
Welcome to CSN and hope you find the help and support you need right here. I was 46 when I was first told I had the C stuff and I am now 9 years passed my first treatment and 6 years passed my second and doing well. I too did not use the PEG but with all the side affects I am now looking forward to getting one.

Congratulations on finishing your treatment, hope you plan on staying for a while.

Wishing you all the best
Hondo

Damn.....
Dang, you're only 56...In seeing you and your photo's, I pegged you for much older than me...LOL, guess I'm older than you.

Must be from that hard bayou living you do down thar...

HaHa...
JG

Hondo said:

That’s It

You got me on that on but I am calling Sweet and getting her Voodoo doll on you.

You are only as old as you feel and some days I feel really old

Keep well my friend, trying to plan a trip to Tampa around the holidays and if I do hoping to see you then.

Hondo

Young Wife....
That's my secret to youth, LOL....

Tampa, sounds like a plan....

JG

jtl said:

PEG
Marty you and I may have a similar issue. The tumor and affected lymph node is on the right side and that is where they are concentrating the radiation. My sore throat is natually more on that side as well. I expect to lose most if not all of the saliva production on that side but according to my onc the other side should be relatively unharmed. Like I said in a previous post I am early in this treatment so I am anticipating that things will get worse. I don't know much about the different types of equipment used to treat head and neck cancer but I was told that tomo therapy causes the least amount of damage to healthy tissue.

My doc said that by avoiding
My doc said that by avoiding the mouth for the radiation, he was able to limit some of the damage. I've been getting some dental work done and my dentists say that my saliva production seems pretty normal four weeks out. There still a lot of dry mouth and some food is blech, but I'm very optimistic.

As I said, I never really had much of a sore throat. I did Neutrasal rinse four times a day, which I think helped me avoid the mouth sores. I kept waiting for the other shoe to drop and it never did. That could happen for you too.

Greend said:

Welcome to long term after affects
Hondo,

I DID NOT (for whatever reason) want a PEG and argued with the specialist for over a year. When I finally reached the point 1) where I could see it (my weight) stressing all of my loved ones and when the doc told me either "get it now or I won't be able to put it in later because of your weight, I gave in and had it put in. Being the Alpha Dog (as you so well stated) I was going to prove to them I could add weight without the tube. Well that didn't happen and I starting aspirating on my food to the point I was constantly getting pneumonia. As you know I now use it 100% to include crushing up my meds and shooting them through it.

Now I must say I could kick myself for being so stubborn. I don't worry about how long I need to eat, I don't worry about gaining weight, I don't worry about worrying those who love me and the grandkids think its cool that I can eat through a tube.

Good luck and may your life get easier.

Denny

We got to be brothers somehow, that is exactly what my problem is now. I just got back from seeing my heart doctor yesterday and he said I have Bronchitis and if I don’t watch it, it will become Pneumonia. All because of the problem with Aspiration from that darn little nerve on the left side of my face. Today while eating the nerve decided to make my tongue numb while I had a mouth full of food, I could not get it down nor could I get it up. I had to just hang there with my little mouth open trying to let the fool roll out and choking all at the same time. I will be seeing an acupuncture doctor this Friday to see if he can help, he was recommended by MD Anderson, so let’s see what that will do. Also I see my ENT on the 19th and will request getting a temporary PEG put in place till I can get my weight back up.

Thanks my friend
Hondo

Greend said:

Hate to hear that Hondo
Doc told me these normally happen around the seven year point...I made it to 13. I too tried accupuncture but it did not help. Hopefully you will have better luck. Sounds like you are working to get ahead of this and thats good, three bouts of pneuminia in three months gets a little painful. I was too bull-headed and let it almost get me to the point that I could not have been treated. You will be amazed how much better things will get.

This sounds crazy but periodically stick out your tongue and see if it points either to the left or right vs the center. That was a symptom the neurologist seemed to get a bit concerned about and "is common with radiation patients".

Denny

Denny
I would love to stick the tongue out but the darn thing just refuses to come out anymore. LOL When I do try it gets the nerve up-set in the neck right under the left jaw and starts to go into a spasm and causes very bad pain. The end of my tongue is also shaped with a lot of points from pushing up against my teeth I guess. Last night while trying to eat the tongue went totally numb and I could not swallow anything for about ½ hour, no pain and no reason why. Just another part of life i guess

Will let you know how the acupuncture goes as I am hoping for some help no matter how little it is.

Thanks
Hondo

Redbanker said:

PEG - Miscellaneous
Nick didn't get a PEG and lost about twenty pounds during treatment. He was able to eat throughout (scrambled eggs, oatmeal, soups, etc) but taste did become a huge problem and, in fact, when he was about six weeks out of treatment he started thinking that he would need the PEG, but his medical team didn't pursue and he soldiered on.

Here's a few factoids: When went down to Johns Hopkins for an evaluation before he started treatment. The ENT he talked with said that were he to be treated at JH, he'd be given a PEG, no options. Now, this guy had trained at Sloan Kettering and during the time he trained there, their practice was to not to have PEGs.

You can find studies on the topic by searching using the Scholar option in Google (via the More drop-down), but this is for the strong of spirit since these papers can be unexpectedly sobering.

Nancy

Hi Nancy

That is hard to understand why one Hospital don’t give you the option to get a PEG and the other tried to keep you away from getting the PEG. In my case I never knew about PEG tubes because no one ever ask if I would like one or even told me about the fact of getting one will make getting food into you a little essayer. Come to think about it they did not know a lot about treating someone with my type of cancer. All I can say about that is "well oh"

Thanks for the information
Hondo

Hondo said:

Hi Nancy

That is hard to understand why one Hospital don’t give you the option to get a PEG and the other tried to keep you away from getting the PEG. In my case I never knew about PEG tubes because no one ever ask if I would like one or even told me about the fact of getting one will make getting food into you a little essayer. Come to think about it they did not know a lot about treating someone with my type of cancer. All I can say about that is "well oh"

Thanks for the information
Hondo

Options
Hi Hondo,

Just a little anecdote. Nick went to a support group meeting at the hospital where he had his radiation. He was about 6 weeks out from treatment and doing not that bad. When the other guys in the group heard that he had not had the PEG they were taken aback because they had never been given the option to forgo the procedure. The poor nurse/moderator had an after-the-facts revolt on her hands.

Nancy

Skiffin16 said:

Pegged - Nancy
So you think they had her "PEGGED" Nancy..., LOL.

JG

Pegging

Now now be a good little boy John, :+)

Amazing how different treatment is from one Hospital to another. You would think that there would be some type of protocol that they would have to follow. Or at the lease some type of information card.

Hondo

PEG tube
My Doc didn't want me to have a PEG but I went from 134 to 101 in a matter of weeks so had one put in. I had it all thru my treatments and had it removed 7 months after my treatments ended. I took all my nutrition thru it and did become very dependent on it both physically and emotionally. I understood later why Dr. Suddiqui wasn't really wanting me to have one.
I got mad and called my ENT and told him I was having issues with letting go and that I was afraid of choking on food. He wisely sent me to a speech therapist and also for a swallow test. I had a vast amount of scar tissue which was lessened by two throat stretches and electrode therapy with my speech therapist.
Tube removed in July and I am happy to report that I even ate a baked potato last night and a small filet mignon (life is good).
If I had it to do over again would I still have had the PEG? Probably since I lost my appetite and nothing tasted right when my treatments started. Losing too much weight would have made it hard to fight back and get well.
I marvel at people who didn't have to have one....keep us posted jtl!!