When is it time to give in and get the peg?

sweetblood22 said:

Good post, Lelia, btw.
I
Good post, Lelia, btw.

I wish all oncologists made patients aware of PEG tubes. Not mandatory, but at least made aware.

Agreed - it should be presented
Even if the doctors are opposed (as both the rad and the chemo guy were in our case) it should be discussed. Our rad guy presented it as something we could choose later if needed and if we did not need it, were better off without.

Again, we were an unusual case in that it was not the radiation burns but the delayed nausea that was the problem. I also agree that it is not so much a matter of toughness or determination that decides who can continue eating as it is body chemistry. Some people sunburn more easily than others - why should we be surprised that they react to radiation differently?

Some factors that affected our doctor's decision: Doug was more fit than most astronauts; he had been receiving a relatively healthy, nutrition-dense diet for years; his blood work stayed good throughout (danger signs like low K, Ca or Mg never showed up). He had a lot of reserves to draw on, and he was always able to get small amounts of supplements in (like Pedialyte) even when he was barfing constantly. He continued to be up and about every day and worked at least part-time throughout - if any of this had been otherwise, our decision might have been different.

Given how touchy his stomach was, I don't think a PEG would have prevented much weight/nutrition loss - others with PEGs lost as much or more. He was an unusual case, but I think each case should be considered individually.

Lelia said:

Just my opinion.
Disclaimer: There are varied POV here about the PEG. I agree with AdventureBob: Most folks can stand to lose a few pounds BUT most--especially those with cancer--can NOT stand to lose nutrition, especially while fighting cancer.

We made a big mistake by not learning about the PEG earlier. For some reason our rad doc wasn't supportive of it and therefore never discussed it with us. Even when we'd have the cursory appointment with rad doc each week during radiation and my husband (he had little extra weight to begin with and couldn't afford to lose) was dropping pounds at an alarming rate and looking weak and feeling awful, they never discussed the PEG.

Finally we ran into another couple we'd gotten friendly with at every day radiation, he'd just had the PEG installed and looked 100% better than the week before. They explained to us what it looked like and how it worked. But before we could figure out how to get approved for and schedule the procedure, my husband fell ill with severe dehydration, malnutrition and pneumonia. He landed in the hospital for ten days, continuing treatment even when he couldn't walk or lift his head.

During that mid-treatment ten day hospitalization, they put the PEG in and we've never looked back. We're about 3 months post-treatment and he's eating fine, but is nowhere near able to consume the calories and nutrition needed to restore his body from the ravages of surgery, chemo and radiation. I use the PEG for fluids, nutrition and meds.

Many docs seem to believe the PEG is the lazy man's solution and I STRONGLY disagree. I would submit that if any of these doctors were afflicted with H&Nc they would swiftly change their minds.

Cooking and eating are two of the great joys of my husband's life. He's not one who's happy to consume canned formula in lieu of eating; he wants more than anything to return to PEG-free existence. But even 3 months out of treatment, his body produces copious amounts of mucus that must be thinned with every four hour doses of guaifenesin, daily use of L-Glutamine and a suction machine two dozen times each day. His tastebuds and appetite have not returned, but he's an excellent patient and eats at least 3 small meals each day. In between, I add hydration, nutrition and his meds to the PEG.

Evidently some H&Nc patients with serious surgery followed by rads and chemo are able to forego the PEG, eating and drinking as always. I'm not clear on how this can be, but if it's true so be it. In most H&N patients, radiation burns the throat so badly they cannot swallow for weeks. The PEG can be an extremely helpful tool and we strongly support its use, especially with good nutrition with whole foods, fruit/vegetable juices, protein and supplements.

Just A Side Note...
"Evidently some H&Nc patients with serious surgery followed by rads and chemo are able to forego the PEG, eating and drinking as always."

I didn't have any surgery other than having my tonsils out....and that was before any other treatment.

I don't have anythng else to say or add...everyone has heard my POV several times. I merely give my experience, not trying to force or intimate anyone either way. We're all big boys and girls. Obviously it's not an absolute must or myself and some others wouldn't be around to tell of our experience.

Yes, the majority have and do benefit, but I'll never not post my experience. I didn't suffer, I don't think that a peg would have been of any additional benefit to me. I would have had the same throat pain as I did. The nutrition I took in was sufficient to get through treatment. I have no regrets for how my treatment was handled by my "medical professionals".

I didn't have a need to second guess them, and I don't look back and say, "Man, I should have done it this way".

Best,
John

sweetblood22 said:

Good post, Lelia, btw.
I
Good post, Lelia, btw.

I wish all oncologists made patients aware of PEG tubes. Not mandatory, but at least made aware.

Hi Sweet

I agree my Oncal Dr never said anything to me about a PEG, I did not even know what they were till I found CSN. I did radiation and chemo treatment twice and the only way for me to eat was by my mouth. No one said anything about all the weight I lost I thought it was normal. I believe all doctors should at least give us a choice whether we want a PEG or not….

Hondo

Misty35 said:

Thanks for all the responses
Thanks for all the responses everyone. Like I have said before, this sight and its people are just great and I appreciate you all for sharing.

Hmmmm
As mentioned, I thought the contention in this matter had reached a satisfactory conclusion- that it is up to the Dr who knows the C and treatment specifications to best advise, and the patient.

The most unfortunate thing about the PEG OR NOT TO PEG issue pertains to those who suffer more than necessary by not getting a PEG and don't get the Nutrition and Hydration needed to fight the best fight possible, and land in a hospital to get corrected- which sometimes means finally getting a PEG installed. In those cases, the Drs have errored and caused their Patients to suffer more than necessary. Personally, I think those Drs should be held accountable if such happens to more than just a couple of their Patients.

As for complications: "Gastric feeding tubes have a variety of complications that can occur, though the overall rate of complication is about 1%. As feeding tubes are placed as a procedure that punches a hole in the stomach and skin, this can lead to leaking of contents into the abdomen causing severe infection and death. This is a rare, but serious complication. The most frequent complication is irritation around the site of the insertion, generally caused by stomach acid and feedings leaking around the site. Barrier creams, dressings, and frequent cleaning is generally recommended." (Note the "1%")

Again, I got mine before tx started, and consider my PEG to have been a major blessing; however, I do maintain the one to know best if it'll be needed is the Onco-Rad team, as they know the specs on the C, and what their treatments will do to the Patient. As a Patient, though, were I to know I was gonna get full H&N rads to the mouth, along with the throat, and with an aggressive chemo regime- I would insist on getting a PEG- but that's just me. I had no complications in the 15+-months I carried my PEG, other than discomfort the first couple days.

kcass

Misty35 said:

Thanks for all the responses
Thanks for all the responses everyone. Like I have said before, this sight and its people are just great and I appreciate you all for sharing.

To PEG or not to PEG....
Looking back on my refusal of the PEG, I should have gotten it. I am 2 years out of treatment and have not regained any weight I have lost, and am still losing.
I did not get it because I knew I would not be able to care for and use it. Just the thought of it made me sick. I vote yes on the PEG.
Of course, having you as his caretaker Misty35 will probably make a big difference! God bless you both in this battle! Love & Prayers, Patty

Kent Cass said:

Misty
There are some 4 different types of PEG tubes, and my Surgeon recommends the balloon type, but that's for long term Patients. I had a bulky G-tube, and had no complications, other than discomfort in the tubing area the first couple days. Does take an Outpatient Op, but I drove myself home that day after the Op (co-worker drove me from the hospital front door to my car in the hospital parking lot), so it is a minor Op. I used 2.0 Jevity, but Sweet and others have recipes that are good. You will find that the direct line into the stomach does make a major difference to the Positive, but still would advise a gradual increasing of intake thru the PEG. Boost and Ensure can be poured down the tube okay.

Of note- swallowing mucous is not good, and can be the cause of nausea, I do believe. I used my PEG from weeks #2-#8, exclusive, and the only nausea problems I had was when waking in the AM in bed from horizontal hours of toxic saliva getting into my digestive tract. Still have that problem 28-months after treatment. Spitting the X!Q* out is a good thing.

kcass

Thanks for the great information!
Thanks Misty for starting a great discussion, this information is really preparing for the next year of life changes. Thanks to all of those with opinions of experience!

I am trying to make the decision (with the docs) of what treatment to get, it's starting to get scary as Monday (2 days from now)is decision time. This is really some great information. Thanks everyone.


Best wishes and prayers to all.

Skiffin16 said:

Decisions
Welcome to the forum, there are many awesome people on here and a lot of history and experience....

Glad you are being made aware of your options and communicating with your MD's.

The PEG, like anything for recovery and treatment depends on overall health going in to treatment, along with exisiting weight of course.

But it's something that nobody can predict on how you will tolerate before hand. Like the tons of experiences mentioned above, everyone is different.

Probably 90% on here feel that it was a definite life saver and needed. Myself and a few others didn't have one and faired well...I don't think many refused it. It just wasn't really felt I needed one in my case and for me, my MD's made the right decision.

If you don't have much weight to play with, don't tolerate pain well, are already not in the best of health..you should probably seriously consider the PEG, and I'd hope your MD's would make you aware.

Either way it's your decision to be made based on your MD's recommendations and your own personal history and feelings.

Best,
John

Weight
I'm just gonna have to disagree completely with the weight argument. Weight should have nothing to do with getting a PEG or not. The PEG's main purpose is not to keep weight stable but rather to keep a steady flow of nutrients and calories going into the body. It is a plus that it stabilizes weight but not the main purpose. Overweight people do not have an excess of nutrients in their body to be used for strength and healing during treatment. They have an excess of fat. They are perhaps more in need of solid nutrition than the people of healthy weight or even underweight. As Ratface mentioned; cancer and cancer treatment is not a weight loss program. Everyone receiving cancer treatment will need constant nutrients and calories going into their body or they will suffer horribly. The PEG is for people who aren't able to get those nutrients in by mouth. The real question is: "Is there a chance that I won't be able to get the necessary nutrients and calories in by mouth at some point in my treatment and would I rather have the PEG put in now just in case or when I am already nutritionally compromised and beaten down and my immune system is shot?" How much do you like to gamble? Or rather; how much does your doctor like to gamble with your health?

AB

jim and i said:

I vote for peg
Jim and I's experience with the PEG has been positive and a life saver. Jim's problem has never been pain swallowing, it has been nausea. After his second chemo he could not even take nutrition through his peg without it coming up which landed him in the hospital for seven days. He lost 9 lbs in two days. This was the rational for our doctor insisting on the peg from the beginning since had a patient who lost 20 lbs in one week. Thankfully they were able to get antinausea drugs intervenously in Jim to enable him to get his feedings but they had to slow it down alot which caused more weight loss, just slower. He is still not back to full speed on the feedings. He did however send us to a swallow therapist who said from the beginning that if he didn't swallow and do the exercises she perscribed he would never swallow again. That frigtened him enough to force down water and do the exercises daily.

Another reason I support the PED is a post on the esophogus baord I accidently ran across. The young woman's father died of malnutrcian because he could not eat and they had decided against the PEG. A fact that can't be disputed unfortunately.

Praying you two will make the right decision for your own peace because that is all that matters anyway.

Debbie

Who Decided
Not to be insensitive, but who decided not to have a PEG?

If it were the patient or family, it defintely was a bad decision. If it were the MD's why would it have gone to the point of no intervention? There is more than likely more to that story than what was told.

My position, and one that I'm not trying to advocate for either not having the PEG or having the PEG....is simply that not everyone must have one to make it through and survive.

I'm not qualified to make that call, I can only give my experience, as should everyone else in my opinion.

I don't want anyone making a decision to not have a PEG based on my comments, it's their decision and should be made from what their MD's recommend.

To me everyone is entitled to voice their experience. Other than that I don't feel we have the right or experience to say it should be mandatory.

If the MD's say you need it, I got it...

JG

Skiffin16 said:

Who Decided
Not to be insensitive, but who decided not to have a PEG?

If it were the patient or family, it defintely was a bad decision. If it were the MD's why would it have gone to the point of no intervention? There is more than likely more to that story than what was told.

My position, and one that I'm not trying to advocate for either not having the PEG or having the PEG....is simply that not everyone must have one to make it through and survive.

I'm not qualified to make that call, I can only give my experience, as should everyone else in my opinion.

I don't want anyone making a decision to not have a PEG based on my comments, it's their decision and should be made from what their MD's recommend.

To me everyone is entitled to voice their experience. Other than that I don't feel we have the right or experience to say it should be mandatory.

If the MD's say you need it, I got it...

JG

made it
i made it also without peg tube.

It is not a must have a peg but it is a must to discuss with your doctor's and agree to a game plan.

I do believe if you have added weight it helps but nutrients is most important.

John