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Create a PEGless club profile?

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Not sure when to declare myself officially PEGless but I feel good enough and far enough along to step out there and say I won't be getting one. PEG is such an emotional topic and not many elect or will themselves through treatment without a PEG, but many would probably be interested in seeing a common profile for those who are able to go without.

During the next week or so, I have some time to coordinate a data collection exercise to draft a set of questions and record answers to identify certain trends or characteristics that may be reliable indicators for those who may be able to avoid a PEG.

Are there enough of us here to even make collecting sufficient data a meaningful exercise? Is there enough interest amonst the community to want to have this sort of information. At a minimum I can jot down my profile, I bet JG would be willing to throw his info together, how many others are active here and avoided the PEG?

 

Thanks

Don

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

As you are aware, I didn't have a PEG..., didn't avoid one, just wasn't pescribed one, and it worked out fine.

I was aware that it was always an option if things went south though.

And as you are also aware, or not.... The PEG has always been a source of controversy, especially with me..., and Kent back in the day, LOL.

At one time the mindset and it was even mentioned that the PEG should be mandatory..., that really got me fired up.

I'm not against the PEG, but also, I'm not going to endorse something as mandatory when I for one, know it's not.

Are there cases where it definitely should be required..., absolutely. But that's not for me to say, nor anyone else here... That's a MD call on a case by case scenario.

Do some people say they wouldn\t have survived without a PEG..., yes. Would some of those have survived without a PEG..., yes.

But, if they were prescribed, and it helps them either mentally or physically..., then it's a good thing.

If my MD's would have prescribed one, I would have had one...

Anywayzzzzz.....

Sure, I'll participate....but I'd rather it not turn into something that is an us and them thing... I'm no different than anyone else here, we all went through similar, some more than others...

Who really knows why some have minimal side effects, and some have many... Look at me at 6' and 250#, and Phrannie, whom is the size of my right leg, LOL... I don't see where she had it significantly rougher than I...

Then look at Arn..., he looks similar in size to me and had everything thinkable hit him.

JG  

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

treatment started in last April.  I never used it, not even one time during radiation...had no interest in using it, and frankly...the damn thing gave me the creeps.  When I had my Onc appointment the week after radiation was over, I asked that it be removed thinking that with rads over, I'd not need it.  The Dr. said "no, lets wait a bit". 

Within 48 hours of my first 5FU treatment, my mouth was blistered and bleeding...so painful that even breathing hurt and that lasted 2 1/2 weeks giving me 3 or 4 days before the next treatment to drink my water and Ensure.  There was nothing that was going into my mouth.  I have a high pain tolerance, but even plain water was agony. 

Would I have survived without my tube?  Possibly, but at 81 lbs, I think my survival would have called for being kept in the hospital 2 1/2 weeks out of every 3, for 3 months so I could get needed hydration and nutritian. 

As far as I can see, there are only two aspects of "avoiding" the PEG tube.  Pain levels and pain tolerance....both too subjective to assess on a spread sheet.

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

I'm with Phrannie on this one.  It is simply too subjective to derive meaningful criteria.

My doctors told me up front that I wouldn't need a PEG tube. But, I received a full dose of radiation to both sides. By my third week, I was spending upwards of an hour slowly swallowing a cup of broth, and broth has NO nutrition at all. I was the one who hollered 'uncle' and demanded they put the thing in.  I could tell I was headed straight for dehydration and malnutrition and that was no way to get through a successful treatment.

Deb

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

It was an emotional victory for me avoiding the PEG through treatment (barely) but I ended up getting one due to eating and swallowing issues that caused significant weight loss. 

My team was for not getting one initially as the Nuerontin therapy I was on was proven to lessen mouth and throat pain. Unfortunately, I went into treatment with mouth and throat pain from the surgeries so it never had a chance against the "set in" pain.  By the end, I could barely swallow sips of water. While it's a little weird, I'm glad I have it as it's made my recovery easier. Besides, I can talk while I eat without being impolite ;)~ 

"T"

 

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Rather than set a new fire on another peg/nopeg flame post, I am going to list all the things that I believe influenced my ability to avoid needing a PEG. I have no interest or energy to spin wasted cycles and get folks all wound up. Each person can read this as they weigh their own decision process around PEG.

Take it for what is is worth but I strongly believe and am convinced that a number of the following factors allowed me to avoid a PEG. Some of these were dealt cards so nothing to influence;  others, I could influence and they changed the outcome.

Primary tumor clearly identified. Having the primary tumor mapped by the RO and dossimetrist sure seems to make the radiation targeting and countouring to be more precise instead of having to radiate for a field where primary is not identified. I am sure the radiation field is mapped to a larger and greater intensity with unknown primaries; that is what just makes logical sense; I could be way off.

Induction TPF chemo therapy done before concurrent chemoradiation therapy. Induction TPF is one the strongest therapies to skrink/dissolve existing tumors, both primary and regional nodes and kill small cancer cells that got loose from the main tumor areas.

Induction TPF delivered complete or near complete resolution to the primary and regional node cancers, according to recent scans. Doing early TPF enabled maximum reduction in cancer size to be treated by concurrent chemo-radiation. Less radiation, more precise mapping, less side effects.

Induction TPF chemo dosing allowed for minimal chemo to be delivered during the concurrent chemo-radiation treatment; thus, minimizing chemo related side effects during the chemo-radiation therapy. I received 7 weekly carboplatin 150 doses for the radiosynthesizer effect only, chemo was not adminstered for treating cancer cells. I did not have ANY side effects from the carbo 150.

Having the smallest radiation dossimetrty map seems to me to go along with fewest side effects of the radiation in general.

I could always alleviate the pain such that I was always able to drink fluids and protein shakes. I still have not heard a single cogent logic argument stating if one can consume protein shakes and water orally, why are you still forced onto a PEG. My math tells me you can get sufficient fluild and nutrition to sqweak by with no need for the PEG.

My Surgeon ENT, MO and RO all sided with me to defer any PEG decision until later. The RO actually threw out a number like 1 in 3 I would need a PEG based on his experience and the specifics of my case. Collectively, they saw something that gave them a decent feeling that I was going to not need a PEG.

amr2662
Posts: 30
Joined: Apr 2001

I made it through treatment (Chemo followed by radiation) at MDA for NPC totally tube-free. It wasn't easy -  I lost a a lot of weight but recovered and gained back most of of that weight.  I was able to eat just about everything after a year or so with a good bottle of water to wash it down with and a little extra time.  I was eating so well I had to be carefully I didn't gain too much.  

Fast forward 12 years.  I started having trouble swallowing. Radiation fibrosis/late effects/nerve damage.  It finally got so bad that I could not eat or drink enough to maintain my weight or stay hydrated.  So I ended up getting a tube.  I miss being able to eat but I love my mickey button.  It save my life.

 

hwt's picture
hwt
Posts: 1843
Joined: Jun 2012

I had a g-tube but I think you have a good idea going that might help someone else.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Amr2662 

me too same length of time. did you do therapy, have you regained anything?  I had tube during cancer not my choice they put it in during exploritory surgery And my second one this past Christmas .  I didnt get a mickey button i got long tube with annoying disk, please tell me your story and lll share mine, maybe we can help each other?

 

Rachel

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

One other factor that likely had some impact on the lessened side effects of radiation was the dossimetrist's map shows a pretty strong dosing on the right side of the neck and throat. The statement was made several times that no tumor mass crossed the midline and I saw the left side map showing a consistent 5300 gray dose on that side. I did also mention to the RO that it seems they could map around the parotid on the left side and maybe that is why I still have decent saliva production and not much dry mouth. Again, avoiding these side effects make it easier to avoid having a PEG.

Keeping the higher radiation dosing to the right side of the throat also created a clearer path for passing food and liquid down the left side of the throat. I definately see less ulcerations on the left side of the back of throat as well as less inflamation running down the left side of the tongue and cheek. It just makes sense again that what I see is directly related to receiving less rads in the leftside area of the mouth, tongue, and neck.

Same thing with radiation burns. I have a couple places where the maximum radiation burning shows on the right side of my neck. There is very little exposed burning along the left side of the neck and again, likely related to the fact more radiation is thrown onto the right side of the neck.

The overall lessened side effects of these factors seemingly reduces the need for a PEG.

 

EDIT - One more factor  - new IMRT machine and Eclipse comprehensive treatment planning system

The IMRT machine I was treated on is the latest generation Trilogy by Varian http://www.varian.com/us/oncology/radiation_oncology/trilogy/#.UawhnJxxrHk

It does all the radiation delivery in two 60 second sweeps, continuous and no discernable clicking or stopping or stepping. I think this may also help with radiation delivery as it allows for more even contouring and smooth application of radiation across all the zones. Also since it does its job so quickly it may also be delivering radiation in a more precise and controlled manner than older IRMT devices.

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

 

don,

You lit the fire, so enjoy it (this is an open forum).

You try to take something as personal and complicated as cancer and subsequent cancer treatments and cancer side effects and break it down to something you can direct.  Not everyone will be as fortunate as you are with limited side effects (no matter whatever they do or don’t do).  The final outcome is what it is, no more no less.  The only true way to validate your procedure would be to do it again and let the doctors set your plan without modifying input from you.  Of course that is silly.

The whole controversy on PEG or no PEG can be complicated. By the time you determine a PEG is needed, you need things to go right and often they don’t.

See you around the water cooler,

2-PEG Matt

 

Ladylacy
Posts: 464
Joined: Apr 2012

I can honestly say that without my husband's PEG tube he wouldn't be here today.  He had radiation and chemo first and it was very tough on him.  His was laryngeal cancer, lst primary.  Radiation completely closed off the back of his throat and if he hadn't of had the PEG tube inserted before treatment started they wouldn't have been able to insert a PEG tube later on.  He had a speech therapist that came to the house 3x weekly to work with him on swallowing, but like us she didn't know the back of his throat was closed off from the radiation.  We didn't find out until they did a laryngectomy.

Now fast forward to when he was diagnosed with a second primary at the cervical of his esophagus.  This oncologist (not the same oncologist as his first treatment since he was now being treated at Emory Winship Cancer Center) said no feeding tube before treatment started but then he changed his mind when he kept looking at my husband and his weighed 6'4" -- 145 and decided to insert a PEG tube again.  The H&N specialist said he wanted a feeding tube inserted.  Once again radiation did its damage to his throat but thankfully the specialist was able to open it without any surgery or problems.  He has had a PEG tube since May of 2012 and will be on it until his time is over on his earth.  Esophagus is too narrow.  

I think a feeding tube depends on the person and his care team.  Everyone is different in how they respond to radiation and chemo and even surgery.  For all those that can do it without a feeding tube that is great but too many need the feeding tube.

Sharon

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Sharon, 

how did they open back of throat, i have scar tissue build up that closes my throat right aftrr i swallow and nakes it hard to move food down.  Evdn very soft food. Would appreciate anything you could offer!

thAnks,

Rachel

Ladylacy
Posts: 464
Joined: Apr 2012

When the first radiation closed off the back of my husband's throat, we didn't know until they did a largynectomy in March of 2011.  Until then we had a speech therapist working with him to swallow, which was impossible.  When the H&N specialist did the surgery, they came out to tell me that would have to reconstruct his throat and I had to sign the papers.  After that he was able to swallow and eat foods and the PEG tube was removed 6 weeks after surgery.  Then one year later they found a tumor at the cervical of his esophagus.  Another PEG tube was inserted because they were going to do another 35 radiation treatments in almost the exact same spot as the first.  It did close off his throat but this time the specialist was able to open it by dilation.  It didn't last so we were right back where we were.  Now since the cancer has reoccurred and spread the feeding tube is the only way he can get his nutrition.  He can swallow liquids but his mucus in his throat is so bad it is very hard and the throat has shrunk once again.  He tries very hard but just isn't able to swallow foods.  Also his esophagus is very narrow due to all the radiation and this makes swallowing even harder.  The specialist did talk about botox injections but with the spread and reoccurrence, it isn't worth it.

Sharon

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Don, I had the same protocul as you... But I have no idea why some are affected differently than others..., other than the old standby, "We are all different"...

I do have a high degree for pain tolerance, I was in the Marines for several years, which stress discipline and control of your body and senses..., I have always been a believer of mind of matter.... But I also know that if the body hurts enough, your gonna do what it takes to get through.

So in reality even if a few of those that probably could get through without a PEG opt to get one. If they don't have confidense, or their attitude is displaced because of their pain. It probably was a better choice to get a PEG to get through treatment..., sort of like a placebo effect.

I have no problem with someone getting the PEG, or not... I am a firm supporter of do what you have to do to get through and survive.

It becomes a sensitive subject when you or I come across as having some special ability or mindset that allowed us to not have the PEG and get through with minimal damage. Where others are weak minded or couldn't handle it or tough it out...

I'm just not a firm believer the PEG should be mandatory to get through treatment..., you, myself and others have proved that's not the case.

JG

Ladylacy
Posts: 464
Joined: Apr 2012

See how this question has started getting too personal.  Mind over matter -- sorry but that doesn't get it.  My husband was told that if he didn't need the feeding tube it could be removed.  It was a just in case when it was insert.  Therefore when he needed it, it wasn't a mind over matter subject.  It was the desire to stay alive and complete his treatment.  He doesn't ever complain about pain and doesn't take the pain medicine as he should.  He would rather suffer but the feeding tube is what has kept him alive.  

We were told going in the first time that head and neck radiation was the worse there is.  Everyone is different and just because someone needs a feeding tube doesn't make them any worse or better than someone who can get thru treatment without one.  

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Did you fully read my comments....obviously I think you took me the wrong way or the intent of my post before fully understanding what I was trying to say. I in no way tried to discredit or take away anyone's choice for having or needing a PEG, quite the opposite.

My point was not to imply that I willed myself to get through without..., quite the opposite. I was merely stating traits that I have... I have no idea why I got through without compared to another that didn't or couldn't.

I personally don't really have any opinion or concern about the PEG, other than stated...not mandatory.

Having a PEG was/is NOT a sign of weakness in any way. It's just a part of treatment that may or may not be prescribed.

I have always endorsed the PEG especially if prescribed, and even in a few cases that it wasn't but obvious scenarios probably dictated a much more benefit than not having a PEG...

The only thing that I have ever stated was that it shouldn't be mandatory.

If I were prescribed, or got to a point in treatment that dictated that I would be better off or benefit from the PEG, I would have gotten one no questions asked... I had/have full faith and believe in my MD's and the decisions they have made for my health and welfare.

Now you can see why I stated upfront that this has always been a highly sensitve subject.... It always leads to bad feelings because each of us bring something different to the table.

Don I believe is trying to approach it on a logical and pracitcal point of view or observation, and for many it's not... It's a very personal subject and hits home to many when you come across as you are weak because you needed a PEG, and I'm not because I didn't... None of that is true.... It has nothing to do with being weak or strong, it has everything to do with how each person responds to the disease and treatment, and what is needed to get you through...period.

John

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

PEGs or not PEGs

Drink water, keep swallowing, take anti-nausea or pain meds……………

If I was to design an approach to going PEGless I would choose a path which I believe helps and is truly sincere. It is easy to sell people on drinking lots of water, it just makes sense, and you can hardly go wrong.  Now a PEG is a different animal, it is foreign, intrusive, yet live saving and has to follow another path from inception to mental and physical acceptance.

You would be wrong to say follow steps 1, 2, 3 and you won’t need a PEG, but you wouldn’t be incorrect to give some recommendations on what worked for you. It is nice that Don has stuck his neck out to provide some good information, but it is not his neck which matters, it is yours.

Looking back we all may have 20/20 vision on how we may have done some things differently, but there are those who did everything correct with less happy results. We call it a game or a battle, but even on best days it is sometimes no better than the luck of the draw.

Side note: I had 2 PEGs, one terrible the other great.  Looking back, I could have gone PEGless (go figure), but I followed the same “best recommendations” which had me drinking lots of water. I bet on a sure thing.

Peace,

Matt

Moayediberg
Posts: 4
Joined: Jun 2013

I got my tube practively 3 weeks into my treatment 2 days before my second Chemo treatment (not the best day) detriment ot planning on using, but triathletes I knew nutrition is the most important part of a race.  I was determined to not use it, but I made a deal with my wife and Dr, that if I could not eat/drink 3000 cal a day I would use the tube supplement. 

I stuck to this deal and was forced to use the tube since getting 3000 was difficult via mouth.  However, I look at it as a good thing, since I only lost 15lbs (185 to 170) had lots of energy and good stamina through the process. 

The only frustrating thing about the tube has been now, post treatment I am holding myself to the same deal, and so the tube is still with me longer than I expected.  I am drinking and eating puréed, but I can not get 3000 cals so I still need to supplement.

i agree with Don, that lost of people could get through this without a tube, but should you. that is a personsl choice you need to make with your family and Dr. However I think you would be hard pressed to find a Dr that say it is a better idea to not get it.

Eric

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Welcome Eric....

Should according to who..., you or my MD...?

Again, all of that was your choice and decision..., not mandatory...

Your comment, "However I think you would be hard pressed to find a Dr that say it is a better idea to not get it."... Obviously for myself my MD's did in essence say "Not to get it", by not prescribing it. If you have followed my postings on the subject over the last four years.... you would know that I haave always said, "if I were prescribed one, I would have gotten one...no questions asked". And that would have not meant that I am weak.... None of us that go through this are weak.

We are talking different scenarios here I think... Making a decision to avoid the PEG, or deny the PEG when prescribed, versus not being prescribed one and saying the MD is wrong in so doing...

John

Moayediberg
Posts: 4
Joined: Jun 2013

Hi John, 

 

thanks for the welcome.  You are right, the peg was my choice, but basically everything in my treatment was my choice.  My Dr would tell me option thoughts, but the left it to me to decide.  From chemo, to meds to the peg. 

i have read many of you post while I am going through my journeyananda found them helpful and thoughtful. 

My journy continues, I am now working to get this stupid peg out and eat real food again!

katenorwood
Posts: 1812
Joined: May 2012

Wow !

I found your post very informative myself.  But also everybody elses comments were very informative also !  I think that the pro's and con's should be talked about without any she said he said.   Every BODY is different and unique, but without information to see what it's all about, with viable opinions and options we tend to get clumped together.  (one tx standard for all)  I want to thank you for reaching out and starting to think outside the box so to speak.  This is the only way things move forward.  Please remember everyone, this site is to share information, and ideas.  Emotions run high, and no one should feel slighted.  Hugs sent out to all !   Katie 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

This is an emotional subject for some. There truly is no one answer that can cover the diversity of diagnosis, treatment nor ones reaction that can be catagorized as difinitive.

One cannot infer inflection nor tone with a post on a thread. We can try using bold, italics or underlining but the message may still be misconstrued. A choice of one word or another can change a meaning and/or infer something other than the original intent. A persons own personal state of mind when they read a post can influence their perception.

I suggest a deep breath and take it for what they are... Words on a screen.

"T"

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

HI ‘T’

What are you trying to say ???

Matt

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

you've got me laughin'....

p

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I have an excuse.....

I am Abi-Normal....

Hmmmm, maybe, could it be, I'm sure of it.... That could be why I wasn't prescribed a PEG.... They don't have an abi-normal PEG, just normal ones...

My abi-normal PEG would have been more like a hooka, a tube for water, another for food, one for corona, a snorkel... Might have to have one for the other end for methane emissions....

JG

HelenBack
Posts: 62
Joined: Jan 2013

Hot topic. 

The first rad onc that my husband met with said he always puts a peg in before treatment for those getting chemo. And my husband was fine with that. But ultimately, he ended up with a different rad onc who doesn't routinely put them in and has a "wait and see" approach. We were worried because of all I read on here and my husband isn't overweight. So, now he's a week out from the end of treatment and is doing okay. He's only taking in about 700-1000 calories by mouth and has lost as much weight this past week as he lost during his whole treatment (10 lbs before, 10 lbs after). I would say at this point that it's still possible that he could end up needing it, crazy as that sounds.

It seems to me that doctors should be weighing the kinds of factors that Don mentioned before making a recommendsation to peg or not. Is the radition very focused, is there a still tumor and/or lymph nodes, needing longer or higher rads. Where was the primary, how much if any chemo, that sort of thing.

Another factor that I think is interesting is nausea. My husband was usually able to control pain well enough to get smoothies down but was too nauseous to put much in his stomach, so a peg probably wouldn't have helped him there. We don't know why the anti-nausea meds didn't work well enough, but they didn't.

And, lastly, I'd think that one of the main considerations might be whether it's really so terrible to get one if/when you need it, later in treatment. I mean, it's sounds bad, but I hear many people get it later, maybe it's fine. I'm curious if anyone had complications simply because they got it, say, three weeks in instead of the beginning.

Helen

 

 

     

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Helen,

I got through treatment without a PEG. BUT, about two hours after I rang the bell, I was in surgery having one put in. It wasn't a big deal. I was a little sore for a few days and that was it. It was put in Wednesday and I was using it Friday. Some say it's better to put it in prior while you don't feel as bad but a little soreness on top of the yuck I already was feeling didn't matter ;) The fact that I had an unknown primary made it so I was getting hit with rads everywhere from the sinuses down to cover the bases. That tore me up for sure.

The bottom line was I couldn't eat by the time treatments were done. My swallowing was compromised and the sores in my throat and mouth made it impossible to get enough nourishment in. I lost 10 pounds the last week and I had no choice. It's not a big deal, just a little weird is all. I should have it out by mid summer the rate I'm going.

"T"

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

later in treatment....it's not unusual at all.  It's hard to say how many Dr.'s actually insist on a patient getting one, how many simply suggest it and let the patient decide, how many are adament against getting one (and there are those Dr.'s out out there), and how many are in the wait and see mode.  

p

Moayediberg
Posts: 4
Joined: Jun 2013

Hi Helen,

i got my peg, three weeks in just before my second Chemo treatment.  The only complications I had we're more to do with adding something new to an already rough process, after a week I got use to it.  My Dr never make anyone get a peg, but recommend since they feel it gives you a full proof way to get the nutrition you need, so don't worry about getting mid way through almost all the people in my hospital got it mid treatment....

Eric

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Helen,

My first PEG was awful. Sure it pretended to work for the first 3-weeks, but something wasn’t right.  The PEG  “looked” text book good and correct, but something was terribly wrong.  I don’t know exactly why, but it started to hurt during infusions and moved on to the most excruciating pain you can imagine.  The last time I tried to use it I was sobbing it hurt so much.  So in the middle of treatments (I guess) I had to have another one.  The next one worked fine.

Point being, if someone was desperate for nourishment and could not swallow and had a PEG installed like my first PEG they would be up the preverbal creek without a paddle.

I did manage to drink one meal a day, every day and most likely could have joined the Marines I mean the Skiffin club, but I did not.

Matt

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You know you love me..., just admit it..., LOL.

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

wow is about all I can say. I knew PEG is a hot topic,k just not been here long enough to have been singed, burned, mamed, or otherwise, suffering some bad side effect.

First, there are too many thoughts and comments to reply to indiviudully. I think the best reply is restate my original intent, I am not tring to defend my position or that I am not some sort of jerk here.

1) As I move to post-treatment I wanted to honesty "give-back" in some meaningful way; other than thinking that I have the dedication and passion like JG, P, Matt, and the many others who make up the backbone of this forum over the long haul. I suspect my participation would fall off as most tend to do and probably because enough other things fill up the busy day. So I tried to think of something that I experienced or had a somewhat unique perspective on that I could share and leave for others who are going to come to this forum day after day and month aftyer month, seeking out solid first hand survivior tips and techniques. That is how I felt the topic pf PEGless came up. Please go back and see my intent was to just collect enough similar things that might correspond and make a profile of common indicators that allowed some to get by without a PEG.

2) The emotional side of PEG. I still honestly do not know where it comes from. I only remember being all over side to get a PEG early, then one day some post came along and all of a sudden I was a hardened do not need a PEG club member. Emotional, ya think? Why where who knows what made me flip like a pancake on a hot girdle. I will say if the day came I had to get up I would PEGup, so what. You gotta get nutrition and eat, simple as that. Maybe it gets gray and personal when that decision point comes and some people may feel some sense of failing or being let down since they needed a PEG. I surely do not feel that way for a second. In my opionion in some cases do I feel a PEG is being ordered when there is lack of sufficient medical rational to do so, yes I do. Do I feel some PEG are ordered elary and proplery due to current state and conditions and factors indicate a PEG would be beneficial now, yes.

3) I still think the idea of having a checklist and short discussion of factors that allow for a more informed decision regarding PEG would be quite helpful. I still have no recollection of anything like there except if you took the ideas from this thread. Can this thread be salvaged from the up in smoke bin and server its original purpose? maybe I am way off base and I am the only one who has lots of open questions about PEG, certainly not the one who claims to have any of the answers or here to somehow assert myself as some sort of expert on PEG. I would have loved to have a nice couple page document to print and have a read and think through about PEG considerations. Am I the only who feels that is useful? If it is not of interest, I am really fine with dropping the idea, just remember it was something offfered out from the goodness of my heart to help, not create or stir up this apparently really intentse emotional topic. Maybe that is this topic has stalled and not gotten past some emotional boundary in the past and allowed for some rational and useful discussion to continue and prevail.

Only wishing the best to all here at CSN. don

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Foo,

I was thinking about this and the main factor I saw in the PEG or not discussion is the diagnosis. Someone who had a glossectomy would more than likely be needing a PEG. A tracheostomy would inhibit feeding by mouth as well. The rad dosage and location is important too. I believe you said you could get food down by using the side of your mouth receiving the lesser dose. 

One's initial starting weight can be a factor. Someone like "P" who was under 100lbs to start with would do well to have one as a precaution. I believe she didn't use it until she was done treatment. Had I gotten one put in prior to treatment I would have been using it the last week or so of treatment. 

I feel, for those that wish to avoid a PEG, your experience and research is very valuable. Especially how you handled the various side effects. 

"T"

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

I don't think anyone goes in begging for a PEG. I know we didn't . 

There are so many factors that hit many of us that don't hit another. Thrush being one of them. 

Rob got his tube 4 weeks in. The doctors said he had one of the worst cases of thrush they had seen. These are doctors at the top hospital in our state and a major CCC. 

His thrush has continued to this day and has not gotten better. His ability to put water in his mouth is excrutiating. I watch this man try to swallow and the pain on his face hurts me to no degree. 

The infusion team said it must be bad because he is the only patient they can remember that has recieved IV diflucan. 

We thought we were going to be one of the people that made it though without the PEG. WE were informed and had choices. 

There are to many factors that lead to a PEG to put into a fact sheet or guideline on whether to PEG or not to PEG. 

I had to wait to post my response, mainly due to rage about trying to sum this up on a spreadhseet. This is a very personal choice and I don't would never begrudge anyone for doing whatever they need to do to get through this or make it easier on themselves. If a person wants one just to make one step of this ugly trip easier, go for it.

Never worry about anyone else but you and what is best for you during your treatment.

Sandy

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Sandy,

Thanks for your response. For some reason, and it is likely the way I worded something along the way that what I am suggesting is quite different that what is being heard. I prepared a draft of the document. Could you kindly take a look at it and provide feedback before discounting a document out of hand before even knowing what is in it? For one thing it is not a spreadsheet or does it have any form or sense of calculating anything.

I spent a lot of time putting my thoughts together as a way to offer something that I truelfy feel would help more than create RAGE in people. Maybe if some folks had a read of it and could then decide what their opinion and value of it would be a nice thing.

You use the term personal. In the document it might be viewed as getting a PEG as not personal. When your docitor basically prescribes one to get a PEG installed, there does not seem to be much personal decision left unless one views not taking doctor recommendation as personal choice.

There are a wide range of factors that influence when if a person goes with a PEG. I tried to objectively list the main factors.

Thank you in advance.

Don

 

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

It was this statement that sent the whole thing south for me....

p

"I find it pretty funny to see how some people just give up before really even trying all that hard."

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

Rob tried like hell to keep from getting the tube but when the thrush took over and could not get better he lost way to much weight way to quick. 14 lbs in 2 weeks. He couldn't put thing in his mouth.

He has not got rid of the thrush yet and they have upped his dose of Diflucan. Now they can't up his moriphine becasue of the interaction of the drugs.

He is miserable and in pain and to read in my head that "suck it up and try harder" put me into a rage. To think that someone would say "take the easy way out" was horrific for me. Rob wants nothing more than to eat and swallow real food. 

Everyone's road is different yet still the same in ways. There are just times when you can not imagine what someone else is going through. 

Call it the easy way it you want but I say make one thing easier to use that energy for other things that will come along.

Sandy

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Thanks for explaining your viewpoint. I will say that I had no idea something that I wrote would be personalized so deeply by others when trying to have an objective discussion while loved ones are suffering.

My intent was not to have people suck it up, I think that is how it gets interpreted when taken out of context.

Let me explain. When your team recommends getting a peg early and you comply then don't need one. Is that giving in and not sucking it up? Hardly, you were following the suggestion of your trusted medical team.

When the medical team suggest waiting for a peg and at some point you determine that you are going to need supplemental support (i.e. get a peg), is that not sucking it up, hardly. Obviously at that point you are where Rob is, hurts like hell, pounds falling off, and insufficient nutrition and liquids not getting into the body. Is that not sucking it up, hardly. Might that even be a bit stupd, maybe.

When the decision to peg up is a personal one, in that the medical team does not have strong feelings or recommendation about the peg, is deciding to get one early sucking it up, maybe. That is where my own personal view is why not try first and see. There are know downside risks all around to getting a PEG and not getting one, you need to assess them and make your own decision. My own personal view is there are more downside risks by placing a peg before not at least trying to the point where it becomes pretty clear a peg would offer significant benefits and counter the downside risks.

Look, going through this whole cancer process stinks for everyone: the patient, the caretaker(s), family, friends. etc. even the pets are disrupted. We all feel like **** and feel the pain every day, is that a reason to not try to see whatever bright sun there is in the day each and every day? Clearly, peg is far more emotional than I had ever dreamed of and that is with a few miles on the survivor wagon.

Do I feel bad some folks personalized this whole thread, yes, of course I do, I have zero interest or take zero pleasure from making ppl feel bad because of something I wrote but hey that happens every day in life. We need to use our filters properly and decide if the writer is a dick, so why bother expending any energy getting worked up, conversely provoking some deeper thinking on the topic.

Just remember at the end of a day, I have cancer, under going curative treatment and hope like you all that it will be completly destroyed but who is to know. I have two nodes that still live in my lungs that could have me in a tizzy all the time. what to do, just take each day to live and enjoy and if/when those things grow/disappear is what I just live with every day. This past week we determine there is some lump now present near the original lymph nodes were present but had disappeared totally. Is this a leftover from the fever/inflamation earlier this week or something that was there that was "hidden" under the radiation sunburns? There are numerous options to stir up the emotions big time on this one. do I want to wake each day and wonder if that was there or is it new or has it grown, or just WTF is that damn thing? I could make myself gag every day from worry. I choose the path that having as much of all the facts and possibilities out there is the best insurance for ME. I do NOT like being ambushed. let me repeat, I do NOT like being ambushed.

That makes me WANT to know as much as I can about anything related to my cancer, that includes knowing as much about a pegt as possible. Am I going to let any information or opinion change how I feel each day about cancer, no. Is it going to make me emotional about peg, no.

if it starts hurting a lot and i can benefit from a peg, guess what, i will call the mo and tell him to stick one in on monday, so what is the big deal? that is just how I personally feel about the topic.

again, sorry if what I wrote made anybody feel bad or get worked up, that was not or is not my intention.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Don, I completely understand your rational, you are a thinker, as I am. I want to analyze things, and it drives my wife crazy. Whom is to me, more of a seat of her pants person... She lives on her emotions and sensitivity..., never really thinking of future consequences... "That's my impression", LOL... I'm sure she would disagree.

I'm one of those that if I think on it long enough, usually it will fix itself, LOL..

I don't really know why this topic tends to go south, it just does... Maybe it's me... Start it again and I won't participate, LOL...

The funny thing is that we all seem to agree, if the crap hits the fan bad enough, we all agree on having the PEG is a good thing. I guess the sketchy part is the journey to that point.

I don't think there is going to be any magic formula on who has a good potential to make it through with out one, and whom will need one. Not to mention your medical facilty and MD's thoughts and recommendations..., I was never asked my thoughts or given choices, LOL.

Yes, there are some obvious situations as T mentions... People that have no added weight going in, and can't afford to lose 30+ pounds. Someone who already had some medical conditions that might make it even worse trying to swallow. I'm sure there are dozens more...

But again, we are all so different and regardless of thought, we all have different pain tolerance and thresholds. What allows a small frail lady to make it through with minimal problems, and a big athletic guy in near perfect health struggle and be hospitalized?

Anywayz...

John

 

 

 

 

Joanielo's picture
Joanielo
Posts: 44
Joined: Oct 2012

Hi Don,

I am happy to hear that you are doing so well with the treatments. 

I hope that you will do me a favor regarding all that PEG tube formua that I gave you by passing it on to someone who can really use it. 

I am sure that there were hundreds of dollars worth of formula in those boxes and my intentions were to get it into the hands of someone who could really use it.  Not everyone has insurance that covers the stuff.  I would appreciate it if you could pass it on.  Thank you.

Joanie

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Joanie,

Thanks. It is on my to do list. I'll try first at Salvation Army and local food bank, the community cancer support group then Oley if required. don

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

I seen this topic but ventured on until this morning. All good stuff but my experience was:

We're going to slice you, your going to have a trach and a feeding tube. (in through the nose) OK got it.

Now we're going to zap you ass 30 times and you MAY have to get a feeding tube.

The key word was MAY so I was on a mission that I wasn't going to get one. I lost 92 pounds total and thy threatened to give me one but never said I had to get one.

We all found ways to make this journey work for us which is exactly what Don is doing here. Problem is by commenting on this site we are all being judged by debating words on a screen which loses the effect of a face to face discussion where tempers only flare for seconds because of less time between comments.

I just  read this and scratched my head and said I know what I want to say but is it going to be taken that way. To hell with it I'll post it because it's time to go to work. Dam Mondays......

Enjoy the day

      Jeff

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I see you are one two....

ABI-Normal..., LOL.

JG

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Some peoples be abi-normal and try to hide it...........nots me I be proud of it. My wife tells me I prove it everyday. I thinks being a survivor made me just a wee bit more abi.

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Hi,

I know I really stirred the pot on this one but wanted to follow up on this objectively. I think the idea of some form of info/fact  sheet covering the topif PEGT has merits and solicit your input to review ny early draft and get your thoughts on the content, organization, missing parts, excessive parts, color of ink, whatever.

My goal is to hopefully have gather all the comments by the end of the week and I would reroll it all into a real draft this weekend. I just can't commit to a drawn out effort as I just sure how much personal time I will have for CSN down the road and would like my contribution to be done before I go.

Thanks in advance,

don

 

Posting response in the clear is good. please do it here or the other related post.

Ladylacy
Posts: 464
Joined: Apr 2012

Sorry but I don't agree with one.  A PEG tube should be between the patient and their doctors only, not some guideline that non-professionals put out.  Too many people rely exactly on what they read on these boards.  Some of the responses on this make it seem like you can get along without one and if you don't well you for a better word aren't trying.  You know the different H&N cancers have radiation in different places.

We were told going on that because my husband was so underweight he needed a PEG tube before treatment started for laryngeal cancer.  If we waited there could be major problems for inserting one and if he didn't need it, it could easily be removed.  You talk about infections, well I guess he was lucky because he never had a problem with infections.  He kept it very clean.  There are too many different types of H&N cancer to say one person shouldn't get a feeding tube.  The first time, we were very lucky to have it inserted before radiation started because the radiation completely closed off the back of his throat, which if he hadn't had it inserted at the beginning, they wouldn't have been able to insert a PEG tube. 

Second time around for cancer at the cervical of his esophagus (right below where he was treated the first time), they inserted the tube again before treatment due to his weight and previous problems with the radiation.  Yes he still has it after one year and will have it until the end due to the fact that his swallowing is very poor. 

My personal feelings is that this topic is better left to the patient and their doctors as to whether or not they need the tube.  Easy to insert and easy to remove.  And as long as you follow the directions they give you, you should be okay with one.  Yes they can get infected but so can a minor cut.

And for all those that got thru treatment without needing one, I think that is great.  There is nothing better that I would love to see is my husband eating again even if it was just mashed potatoes.  That is nothing better I would love to see is my husband not ever having to go thru what he has gone thru for the last 3 years and to know that he isn't terminal due to this beast.

Sharon

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Man, I've spend days deciding should I weigh in on this one.  I've wrote three different responses but each time decided not to post.  But I think that Sharon's post, which I completely agree with, has spurred me on.  

I think that you were/are trying to be helpful but if you objectively read your posts and your document it has the feel/tone that PEG tubes are to be avoided or are dangerous or, not brave.  Facts are that there are incredibly few complications (as a percentage) that are directly related to this procedure (all surgery has risks) and a high pain threshold should not necessarily be a deciding consideration if a tube is or is not used.  Most people are by nature will do anything to avoid surgery.  I know I fought getting a G-Tube tooth and nail.  If I read these posts and the new document as it is written, I might have fought harder and the facts DO bear out that PEG's inserted late in treatement are harder on the patient than when instered as a prophalactic early on.

I think if you did a survey of the folks on this board, past and present, you would find that the overwhelming percentage had some kind of feeding assistance.  Not utilizing a tube is a really great idea, especially from a swallow perspective and I applaud those who are able, because of their constitution, favorable reaction to therapy or other intangibles are able to make it all the way through the journey without their use.  I have also read many posts from folks that have had tubes inserted and were able to never utilize them.  No harm, no foul.  But, the numbers clearly point out that this is not the norm or even possible for most forms of our disease.  One example would be disease that has an undiscovered primary and/or a disease that encompasses both sides of the neck require more radiation and therefore will probably produce more adverse effects late in treatment that, more often than most, will cause swallowing anything other than water almost impossible.  This is obviously just one example of a plethora of cases where a feeding appliance is warranted and necessary.

A lay document that discusses this subject cannot possibly not take on the bias/conclusions of the author and, from only my personal opinion, can confuse a patient at a very emotional point and cause conflict; which was exactly what you were trying to avoid.

So, it was a good idea that probably is impossible to accomplish.

Just my 2¢

Joe

 

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

I've been wondering where you been hiding? LOL that is  LOL or Laughing I have learned to use these great icons. LOL :-)

Your comments are consistent with those who have the impression the "guide" was to somehow lead someone with cancer to make some sort of decision about yes/no/when of getting a PEG.

As stated that never was the intention but I surely acknoledge that may be how it came across. I am working on a new version that will be in line and consistent with the intended goal of the document which really is a wiki/faq sort of slant where many factors relating to PEG are briefly discussed. Each factor is independent and and at most may be some indicator if this factor has more significance in terms of how complex and how much impact this factor may have in the overall scheme of things. There is NO intent to rank, weight, sort, compute any sort of way to use these factors in the document to determine in any way some sort of yes/no/when a PEG would/should be used. I this sense it is really a mutated checklist or dictionary with PEG topics.

I hope that works better for most. I am going to start redrafting the overall framework and viewpoint of the entire document, still seeking comments on individiual PEG factors and will make a secondary sweep to cover the specific and detailed updates. If factors are missing, suggest them as new, suggest updated verbage as desired, and deleting or combining others, anything that makes sense to you.

I value and respect every idea so thank you for taking the time to offer up your ideas.

 

Don

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I've also kept quiet on this issue.  Don, there is no doubt your intentions are good but Joe and Sharon have good points.  I was one of the hardheaded individuals who said no to a tube at first thinking I could swallow the whole way.  WRONG!  I ended up having to have one put in shortly after treatments started.  I was so rundown that I was admitted to the hospital for a week the day after the tube was put in.  You put your life in the hands of doctors to put you on the path to healing.  If he or she says you should get the tube before treatment, they are most likely using their knowledge of your condition to base their decision.  I wholeheartedly agree with Joe when he said about new people looking at your material and making judgements on their treatment.  It just shouldn't be done in my humble opinion.  Sorry.

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

Thanks for posting on the public side. Many more will benefit from your thoughtfuil responses and perspective. Next version will clearly define the goal of the document to NOT be some abc guide, score it, do I PEG or not sort of tool. It is not that at all nor was it intended that way, but must have come out slanted just due to the timing and context at the time of being written. In your case, where the document talks about underweight and recurrence situations, may indeed point you to having more discussion with your doctors and between you and your doctor, determine the options and recommended way to go forward to ensure sufficient nutrition is made available during chemo, radiation, and pre-post treatment.

Also, it is perfectly fine to have your own opinion and vantage point on any and everything including PEG. I encourage you and others to know it perfectly find and even encouraged to present your viewpoint and know we all respect that position. We may agree completely or disagree compleletly and that is fine too. That is what makes things great, being able to have different opinions yet respect each other and all are stronger from the synergy that is created due to the power of many diverse ideas.

Thanks again, Don

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