Most every Doctor I have seen urges me to get the PEG before Radiation starts........
I REFUSE TO GET IT CAN YOU CONVINCE ME >>\\??????

Don't get it. Clearly you know more than all the doctors you have seen. What do you think a bunch of lay people know that your doctors do not? It is not our job to convince you of anything. Your job is to make the best decisions you can. Seems like you have your mind made up to me.

I know - the though of getting a tube in your stomach is unimaginable. I know right now its hard to imagine not being hungry. Its hard to imagine every swallow being paintful. Its hard to imagine looking at a 16 onze bottle of liquid ensure knowing that it could make the difference between feeling like crap or giving you some sort of nourishment that will make you feel better... and trying to drink that small bottle was a huge feat for me. Its hard to imagine all these things until they actually happen. They might not happen to you. You might be able to eat through the whole experience but most people aren't able to. Eating & drinking become a major tedious chore.

Its only temporary and the better nourishment you get the less side effects you wil get and the better you will feel and the more you will be able to enjoy life through this treatment.

I know its hard to have to go though this. It sucks to feel vulnerable- and have such a basic funtion- like speaking eating tasting swallowing compromised.

If you don't get the PEG tube you might spend hours a day trying to get enough nourishment and hydration. You don't want to end of int he hospital sick and not be able to complete the treatments you need to conquer this disease. Its rreally that simple. Why make life harder for yourself than its already going to be?

Why not make it easier on yourself? The Drs. do have years of experience treating patients.

Where are you about to be treated? There are some major cancer centers and individual doctors that do not always think a PEG is suitable in all ciecumstances. Each patient should be evaluated seperately.

I also refused to get a PEG and my treatment experience was probably worse than many and there were many times I know I could have used it but looking back I am glad I didn't get it. The more you learn about this cancer you will learn that each of us can respond differently to the same set of circumstances. I say that because what worked for one may not work at all for another.

Sounds like you are trying to show you are still in some kind of control and are deciding to forgo the peg tube. Its completely up to you. A peg tube is what I credit for getting thru OC 3 times. I wasnt able to eat due to radiation burns and loss of teeth. The peg tube is what I depend on everyday to take my meds and give me enough nutrition to survive.

Its your choice. As a new member, please understand we are here to help you not to act as a debate team on a tough subject. Most people who dont start out with one end up with the tube anyway. Its easier to do it now and then its there when you need it. You could suffer thru and end up with a nasal tube for nutrition. I think Davidcpa had one of those at the end. That isnt fun either.

Ramon

Nope, to paraphrase Bob Dylan, It ain't me you're looking for man to convince you to get a PEG. As a grizzled veteran of the PEG wars here on OCF, I'm on record as to my personal feelings and remain very glad I went the first year of TX without a PEG and would have done so a second time if I physically could have swallowed after the surgery.
I believe that I am unique among all the PEG commentators in that I have done a full course of radiation and chemo BOTH ways, without a PEG in 2007 and with a PEG in 2009. So I can actually speak from personal experience instead of conjecture.
It's so much easier with a PEG but "necessary" only if you can't swallow or eat enough to stay healthy. Everybody is different, and to many the PEG was no big deal at all, and all my fuss has been simply silly or even dangerous and irresponsible.
Charm

Thank You for your honest advise, I'm still pondering the idea.

Thank You Christine:
It's a battle within myself on one hand I realize the PEG is a life saver for those who can not eat during Radio Theraphy, on the other hand I can't see me with that piece of whAtever hanging from my stomach....
THANK YOU VERY MUCH, I will not fight against my well being, it's going to be tough either way........

Yes it is completely weird and freaky at first but its not the worst thing. I actually really liked it when I felt so crappy and didn't want to eat...I was so thankful that I didn't have to suffer through eating when I felt nauseous and had no appetite and I was just relearning to eat. and I just felt weak and tired. I knew it was there to help me. The day I got it out was one of the happiest days of my life though!

Christine remembers well. I did have a nasal tube put in when I was in my 1st or 2nd week post Tx. I was really in bad shape, weight and fluid wise. Even as bad off as I was it was a painless simple 2 minute procedure, not counting the 2 hour wait to get the X ray taken of my stomach to make sure it was in the right place. I used it for about a week or so and when I walked out of my tunnel I called my doc on a Friday afternoon and he "allowed" me to pull it out myself, again total painless. I have talked about these tubes many times and I still don't know why there are not used more often??

David,
one reason is that they come out that easily. I had one in after surgery and it lasted exactly half a day before I puked it up...... The other disadvantage is that the diameter is quite small which is ok for water an low viscosity fluids.

M

For once, Markus and I are on the same side of a feeding tube discussion, at least as to unpleasant experiences with nasal feeding tubes. Much as I dislike the G-tube, the nasal gastric tube was an even more horrible experience for me after surgery. It prevented me from expelling the mucous which then choked me and did cause me to vomit. They had stitched my nasal tube into me to make sure it couldn't come out as they feared my throat was too swollen to rethread a nasal tube down if it did come out, so even puking would not free me.
I didn't need any feeding tube the first time around which worked out best for me.
Charm

First night I had mine I must have got it tangled in the bed somehow and I woke up to a very wet bed. The night nurse came in and said "I'll put a new one in" and I politely said "no thanks, I'll wait for the doctor!" I didn't have any further problems and as far as the size of the tube, which I have no idea, I remember they gave me a syringe that I sucked up even VHC and shot it up my tube. I always flushed it with water as I needed those ounces as well.

I'm not sure i want to weigh in here, but here goes.

I did radiation only and refused the PEG. I made it without losing weight. I recomend the PEG because the last few weeks was very tough. I made it and did get a bit of satisfaction that my gamble paid off.

I also recomend it for a second reason. I have seen many posters here who have a very difficult time of it. This usualy comes on very suddenly and the PEG is the only thing that keeps them out of the hospital.

I gambled with my pride and won. Are you feeling lucky lately

Prevention is better than cure. Just because you have a PEG it doesn't mean that you have to use it. Once you've finished your treatments and your medical team is satisfied that everything is going well with nutrition intake etc, the PEG can be removed in a couple of minutes.

Karen

My Dr Trotti, RO at Moffitt, who is not a big proponent of the PEG tells me that in his experience 30% of his PEG patients end up PEG dependent for the rest of their life. To me that's a real scary number.

David, what exactly does that mean though?

Do these 30% that are dependent on a PEG tube include those that otherwise would not get any nutrition? Also this would depend on the type of patients (i.e. age severity etc)
Reading the comments here, even those who are "proponents" of a PEG do not like the *&%$ thing and are happy to get rid of it once they are past the rough spot of the treatment, if not sooner.

M

It doesnt seem like the people on OCF would end up being in that 30% figure. Most people here have gotten a peg and had it removed asap. If I had to put a number on my guess on peg dependant for life patients, it would be 10%. Of course all this is my own uneducated opinion

[quote=davidcpa]My Dr Trotti, RO at Moffitt, who is not a big proponent of the PEG tells me that in his experience 30% of his PEG patients end up PEG dependent for the rest of their life. To me that's a real scary number. [/quote]

I wonder how many of his patients (who don't get a PEG) end up in the ER or hospitalized because of dehydration or being malnourished? There's a complication we didn't want to face.

And I wonder how many of those patients would have ended up needing a PEG anyway.

And for the record, I have no regrets about having a PEG. There would have been no way for me to get the nutrition my body required without one. I lost no weight at all during treatment, had no trouble with dehydration or getting meds as required, and when I was able, I returned to eating by mouth. No harm, no foul.

Clearly, everyone else's results may vary.

- Margaret

I am always amazed at how lightly most posters treat the risk of being dependent on a PEG tube and instead focus on getting one "just in case". Always having a PEG tube is indeed a major harm and a most foul experience. What is amusing is how most of us (including myself) echo what our Radiation Oncologist believes. Mine was a major opponent of PEGs and even today gives quotes about their risks, such as the one I posted a while back.
Must be something to do with the need to trust how the RO plots the radiation.
charm

I love a good back n forth!!

I assume Dr Trotti was not including those that would have ended up PEG dependent anyway in his 30% but again that's just my assumption as I never thought to ask that defining question.

Dr Trotti never told me his numbers until just recently so they didn't weight in on my decision to get it or not and yes I do admit there were times that I could have and would have used it but the unknown is would I have had any problems swallowing post Tx or would I have become PEG dependent. All I can tell people is what experience I had PEG less. I leave the PEG experience up to the PEG people.

Yes I did go to the ER 3 times during and post Tx for fluids and I have since advocated new patients getting a port just in case.

David

I agree that the PEG Dialogue is much more in keeping with the OCF spirit than the Martial term of war. What we need is more understanding of the deeply personal meanings we each give to the accouterments of oral cancer TX.
What was an eye opener for me was when one poster threw in the example of the oral cancer patients here who either forego Pain pills or take them very sparingly. Were they "heroes" for suffering thru what I "patched" over? When these few souls post their reluctance, they are as assailed for contravening the conventional wisdom as I was for my "Just say NO" stance on Pegs. Well meaning posters chime in that there is low probability of addiction, how pain can hinder healing, and are as incredulous that not doing drugs in this context can be meaningful to anyone. Yet I do not doubt that for them, surviving TX without narcotics is important somehow.
I'm as guilty as anyone in urging maximum medication and unrepentant but then I was taking many of these drugs for recreational purposes back in the day anyway.
Sometimes in my more lucid moments, I reread old posts of the "Peg Wars" and realize that to an outside observer, this "war" must look like the inter-Liputian quarrel between the Big-Endians (those who broke their eggs at the larger end) and Little-Endians of Gulliver's Travels by Jonathon Swift.
Charm

David and Charm,

I think it comes down to this: a patient has his or her reasons for the very personal choices they make regarding their approach to TX. As a caregiver, I don't always understand why my husband chooses one thing over another. And I often think that if it were me, I'd do it differently. That's the beauty of it--we won't choose the same things because we are individuals. Every choice we make is affected by our personal histories. We come here for many reasons--share our experiences, increase our knowledge, forge friendships, enjoy a few laughs, help others, and help ourselves. There are very few places where we can express our deepest fears and be among others who "get it".

Anita

Well......
Charm, endianness (byte order) is no joking matter actually. (And just to make it even more confusing there is a bi-endian (really)). This really mattered for data integrity. So if you are using a x86 x64 (mac, linux, windows system) you are a "little-endian" (or reformed)

Regarding PEG dependence/addiction: It is no laughing matter really, still I cannot get the picture of a seedy character in a dark back alley selling PEG tubes out of my mind ......


M

David
There is something way out of whack with Trotti's numbers.

Perhaps you misunderstood him.

Don,

No I questioned him on how large I thought that was and he stands by it as of 3 weeks ago when I took Sandy to meet him.

BTW Sandy started her Cis (3 bags) and rad Monday with Trotti. She must travel 2 1/2 hours EACH way until her Hope room becomes available!!

Dr. Trotti's and Moffitt CCC's numbers of 30% PEG placements leading to a life time dependency is startling!

Dr. Trotti is an esteemed expert and Moffitt is a top tier NCI designated CCC. His concerns and experience warrant our attention.

We need to understand this issue. We certainly can not defend the common practice of pre Tx placement of a PEG when the odds are that a third of patients will likely never regain their ability to eat again.

I had always assumed our local support group was a representative patient sample. Virtually all of us had PEG tubes and are fine, but apparently we are not representative of the norm.

Perhaps some of us can check with our CCC teams and research some studies for clarification on this issue.

That's a great idea and see if we can get an answer from other RO's with a large patient base.

Trotti's not big on the PEG and won't push it as long as you maintain your weight and that stand hasn't changed since I first saw him in May of 06.

My tube is acting up and I might have to see my gastro guy next week. I havent seen him since last fall so he may make me come back into the office instead of my usual quick replacement procedure. If I go to the office then I will definetly ask him what his stats are.

David
Might Trotti have been referring to the percent of patient who have Dysphagia (swallowing disorder) due primarily to radiation/chemoradiation?

Trotti has participate in RTOG chemo-radiation and Dysphagia studies - one in 2008 and it is a significant issue aggravated by chemo-radiation (CRT).

PEG tube dependence can make Dysphagia worse, but in most studies despite Dysphagia, over 80% of patient manage to get off their PEG within a year and over 90% by two years.

Unfortunately some may have to always have a PEG due to other issues but not due to PEG dependence.

A large percentage of us will have dysphagia to varying degrees regardless of whether we had a PEG or not and for many of us this can get worse well after the PEG has been removed.

Anyway, I can't come up with any data supporting a 30% life time dependence rate for PEG users and my RO mailed me back that it is no where near that level. She say Trotti is referring to dysphagia and told me I could email him through the Moffitt.org site.

Study References:
http://www.headneckcancer.net/mt-static/publication_pdfs/Oto-HNS-2006.pdf

http://www.headandneckcancer.org/meetings/documents/AHNS09FinalProgweb.pdf (section printed below:
P077 (COSM poster #200)
RATES OF PEG TUBE DEPENDENCE AND ESOPHAGEAL
STRICTURE FORMATION FOLLOWING DEFINITIVE CONCURRENT
CHEMOTHERAPY AND INTENSITY MODULATED RADIATION
THERAPY FOR SQUAMOUS CELL CARCINOMA OF THE HEAD AND
NECK - Susan A. McCloskey, MD, Wainwright Jaggernauth, MD, Nestor
R. Rigual, MD, Wesley L. Hicks, MD, Saurin R. Popat, MD, Thom R.
Loree, MD, Mohamed K. Khan, MD, Mary E. Platek, James M. Smaldino,
Anurag K. Singh, MD; Roswell Park Cancer Institute
Background: The incidence and duration of swallowing dysfunction
associated with definitive concurrent chemotherapy and intensity
modulated radiation therapy (IMRT) for management of locally advanced
squamous cell carcinoma of the head and neck (SCCHN) have not
been fully described. Methods: This retrospective review identified 78
consecutive patients treated with definitive concurrent chemotherapy
and intensity modulated radiation therapy (IMRT) for SCCHN at our
institution. Crude rates of percutaneous endoscopic gastrostomy (PEG)
tube dependence and esophageal stricture formation are reported.
Results: Median age of the cohort was 62 (37-81). Median follow-up
was 20 months. Tumor sites included: oropharynx (54%), larynx (36%),
oral cavity (5%), and hypopharynx (5%). 74 of 78 (95%) patients had a
PEG tube placed prior to or during CRT. At the time of this analysis, PEG
tubes had been removed in 63% of patients after a median of 167 days
(range 65 to 666 days). Among 25 patients who had their PEG tubes in
place at last follow-up, median time of PEG dependence was 417 days
(range 109-952 days). At 3, 6, 12, 18, and 24 months respectively, 96%,
61%, 31%, 19%, and 6% of evaluable patients with adequate followup
remained PEG tube dependent. Seventeen of 78 (22%) patients
developed esophageal stricture formation requiring dilatation at a median
of 6 months (range 3-24 months). Conclusions: Esophageal strictures
formed in nearly a quarter of all patients. At one year, nearly one third of
patients remained PEG tube dependent. Given the significant impact of
swallowing dysfunction on quality of life, all efforts should be undertaken
to understand this relationship and minimize this effect. Novel
radioprotector studies are being planned at our institution.

Thanks Don for the interesting info. I was wondering about the number who had to have their esophagas stretched as there have been a couple recent questions. Now I know aprox. 25%.

Well I'm going to e mail Dr T and see if he will expand on his 30%.

I hope some of you will read the lengthy post that I put up not too long ago about radiation damage to the nerves and muscles of the swallowing mechanism, the need for IMRT competent facilities to target around these areas like they do the salivary glands to spare them etc. It is well known that progressive deterioration of the controlling nerves and muscle groups in the swallowing function from radiation, make dysphasia something that creates quality of life issues down the road from treatment, and this has nothing to do with PEGs. Everyone wants to talk about how they got by without a PEG and attributes their ability to swallow, not aspirate, etc. to not having a PEG. It much more dependent on how much radiation that area of anatomy got than anything else. RO's are just now figuring this all out. There is a news story on this on the OCF web site as well. The gist of this is that the sad truth in the US is that there are far too many treatment facilities that don't even have IMRT capabilities though it has been the standard of care for a decade. There are far too many RO's that are just not up to speed on what can be spared and still get cancer control. The problem is that when IMRT came out, RO's now had to know anatomy as well as a surgeon, and that requires a complete relearn of things. There is a bell curve of who has gotten up to speed and who has not across the country. Even at the best institutions.

Strictures from radiation fibrosis is also highly variable depending on the area radiated, and the duration and intensity of that radiation.

Anecdotally from speaking with hundreds of cancer survivors and patients every year for more than a decade I would think the 30% number is very high.

OK I just go off the phone with Ang at MDACC (my RO) and well respected. He also feels that 30% in very high and not their experience there. He also said that he was unaware of any current peer reviewed published data that really looked at this in a manner that he would be comfortable putting a number on. He also said that data would have high bias in it as facilities do not follow up well with patients after 5 years when the radiation damage to the nerves etc. is still continuing. The questionnaires that I get every year from MDACC basically are only asking me if I am still alive, and if I have had a recurrence. Given that and the mobility of the population, plus the number of people that travel to distant institutions that do not stay with those docs as their follow up doctors for monitoring, that data collection would be highly difficult and likely very inaccurate.

I wish I only had dysphagia instead of aphagia. Brian is spot on about the importance of the RO planning the IMRT to avoid the swallowing muscles/area as much as possible. While my throat was too sore to eat solids, I had no real swallowing problems despite 40 IMRT. Soon afterwards I was back to eating regularly. My RO said it was a combo of no PEG so I was always adjusting my swallowing to the changes (like the old story of Hercules lifting a calf until it became a bull) plus careful radiation planning
Even when the cancer came back and I had to have a second dose of concentrated radiation via CyberKnife, my RO miminized the radiation exposure. Of course the radiation didn't help or cure the physical damage caused by the surgery but even the little bit of "spray" made recovery from the surgery impossible for me.

I want to be clear that the PEG put in the second time did NOT cause my inability to swallow now. It's a complex combination of reduced base of tongue retraction with reduced contact to the posterior pharyngeal wall and incomplete cricophyaryngeal muscles relaxation. This results in pooling in the pyriform sinuses and vallecula of the bulk of what I try to swallow which means aspiration and pneumonia if I do not use the PEG tube exclusively. I had high hopes for swallowing therapy and VitalStim electrical treatment but the MBS all show no improvements.
Charm

Here is my e mail to Dr Trotti and his response below:

I e mailed....

On the Oral Cancer Foundation website we were discussing PEG vs no PEG for the 1000th time, we call it the PEG WARS but anyway I said that the last time I discussed the PEG issue with my Dr Trotti he told me that his experience was that 30% of his or Moffitt's OC PEG users became PEG dependent.

Did I misquote you?

Please briefly explain.

David

And he replied......

I will reply to your OCF post, but your interp is a bit off. It is 30 at 1 year, 15 at 2y and 8 at 3 years in 2D RT era (pre 2005)---IMRT has been standard for last 3-5 yrs. The rates are lower for IMRT but data is just now coming in ....more later.

Andy

Hell, at one year from beginning treatment I was still on morphine and PEG. So that does not surprise me. I didn't want a PEG and resisted it until my weight drop triggered MDACC mandatory installation. That was about the 6th week into things. IMRT in the right RO's hands, is definately making this a lesser issue, IF THAT RO IS UP TO SPEED ON WHAT THE LATEST INFORMATION IS ON HOW TO SPARE THE SWALLOWING MECHANISM ANATOMICAL STRUCTURES.

Glad to read what all of you are saying because I'm in that "I don't want a peg" place--my treatments won't start for several weeks. I'm going to start without a peg but am hoping I will be able to let go when the drs recommend one. I want to stay as strong as I can.

Hey Susan! My sister is in he same mode. Also starting Rads within the next few weeks. I would rather her start with it and only use it when needed but I will tell her until I am blue in the face. Lol! She has her mind set. The only thing that is making me comfortable with her decision is she is going to an RO that speacializes in head and neck cancer. Her surgeon wouldn't have it any other way. I hope that she could make it through with out any pauses in her treatment from dehydration. To be con't.......

Hi. I'm new to this so lease bear with me. My mother-in-law is currently finishing her treatments. She has one Chemo tx and 6 rad tx's left. She has a peg tube and is disgusted with it. It has been replaced once already due to infection and she leaks around the tube when she drinks water. Could she be drinking too fast? She just wants the tube out. She feels that she can swallow fine and wants to try to eat soft foods and such but is afraid because of the leakage around the tube. Any advice? I told her to check with her doctor when she sees him on Tuesday.

Tonya,

First off, welcome to OCF and sorry to hear about your mother-in-law.

Like many, I had radiation and did not have a peg tube. My cancer was on my right lateral (side) of my tongue and they angled my radiation to spare most of my throat. A peg tube was not even suggested to me because my doctors felt I would not need one, and I did not. I was able to eat and drink (soft foods/liquid diet) throughout treatment and recovery. Not to say it was easy, but doable. I lost weight, but not an unreasonable amount.

The effects of radiation are the worst towards the end of treatment and in the weeks after treatments ends. Where was your MIL�s cancer? If her whole throat is getting hit with radiation, it could be more difficult to eat and swallow in the weeks ahead. The same goes with the mouth � my tongue became very swollen and I had numerous mouth sores that made eating/drinking extremely difficult and painful.

I cannot answer many questions about the peg tube, but having it leak certainly does not sound normal to me. This should definitely be addressed with her doctor. Does someone go with her to her doctor�s appointments?

Getting the proper nutrition is key to the healing process. By the way, there are many discussions on the forum about the peg tube � fondly called the �peg wars�. For some it is absolutely essential for survival, and others have been lucky to get by without one. There is a search feature that allows you to search the forum � you will find many discussions on this topic.

I wish your mother-in-law the best. Feel free to ask any questions and please let us know how she is doing.

My huband Seth has Base of Tongue cancer stage 4-A and we are on the tail end of chemo and radiation (surgery was not an option because of the location of the tumor). We were not pleased with the prospect of a PEG tube, especially because they wanted it done BEFORE we started any treatments. However, we figured that "they" knew best and now, looking back, they were right. If you DON'T need to use the PEG tube, that would be wonderful. But if you DO, you certainly want to have it in place BEFORE any treatments because, at least in Seth's case, the prospect of putting anything down his poor, painful throat would probably be too much to tolerate. NOW, the Peg tube has proven to be a life-saver because that is the only way that he can take any nourishment. In fact, we have had to switch over to a pump that administers the fluid at a controlled rate because Seth was experiencing severe diarrhea because the flow rate was too fast. If you have an option, I would definately opt for a PEG tube; like I said, if you don't need it...great. But if you DO...

Tonya, welcome to OCF. Please begin a new post when asking questions so your post will get the attention it deserves.

Your mother in law still has 6 more radiation treatments. This is the time when most patient have the most difficulty. zEven the patients who have sailed right thru tend to struggle the last few treatments and the next 3 weeks after finishing. To remove the peg tube before she has gotten thru the worst part is not a good idea.

If your mother in law is able to eat, she should. Its much better to eat than use the peg tube. Just make sure she flushes it daily even if she isnt using it. The leakage is pretty normal. As long as most of what she takes in isnt coming back out as leakage then she is doing ok. Everyone has some drainage around where the tube is coming out of their stomach. I use what is called drain sponges to keep from staining my clothes.

Please let us know what the doc says on Tues. Best of luck to your MIL with her last few treatments