G'day to all from down under...although we're Canadians!

I'm new to this site but I have read you quite a lot for the past few weeks. Today we're facing a a big step and we're quite ambivalent about the choice. I told my husband (hubby as we say)that I would seek your advice!!!

So here I am. Marie-Lyne, David's wife. At age 44 with absolutely no warning signs except a palpable node on the right side of his neck, we were stunt to learn that David had a SCC of base of tongue. No smoking, healthy lifestyle,super in good shape, social drinker....really came out of nowhere. I know we are not the first ones but boy when it hits you, it really hits you.

David had a R) radical modified neck dissection on 01-10-05. 2/36 nodes positive. Tumour is still there and will be treated with 7 weeks of radiotherapy on right side only. He was back to softball/baseball 10 days later. 9 teeth extracted 01-27-05 back to softball/baseball the next day! He's scheduled for a PEG in 2 days. He's strong as a horse mentally and physically BUT psychologically the PEG is a very bid deal....I mean a BIG deal.

His radio-oncolist proposed the PEG to David as he does for everyone else. One of his mates (who actually is from Arizona) had similar treatment for his SCC of R)tonsil area and refused the PEG. He made the decision that he would swallow through the end. David has also spoken to another person who actually choose to have the PEG and was very happy with her decision, actually she kept longer then she should have but for her it was better this way. Now I know that each case is different but I was wondering if any of you have decided not to have PEG and can "testify" that is was a good choice or an error.

I welcome all advice as David's in the process of taking his decision. I will pass all your comments.

Thank for your help. I hope I will be able to help in return one day.

cheerio, Marie-Lyne

Marie-Lyne
Wow you have just opened a hornets nest with your question, if you do a search of this site you will find that this is the most debated point EVER
Now I had a PEG, I had surgery and a graft and was nil by mouth for nearly a month so no option. For me was no big deal, except in the hospital when I was on a 14hour pump system, and I threw everything back, once I used a syringe and fed myself every 3-4 hours I was fine.. Now that is just my take on the PEG.
Please do a search on this site and talk to your hubby's Docs, try and get as much advice as possible
I'm sorry that you had need to find us but stay with us we don't bite
Sunshine... love and hugs
Helen

Hi Marie-Lyne --

It is quite a shock to get a diagnosis like your husband's, similar to my husband's -- out of the blue and essentially symptomless. You and he will have to be strong -- the radiation treatment is long and stressful.

My husband had his primary (tonsil) tumor removed but no other surgery, and received 7 weeks of radiation and 7 low-dose chemotherapy infusions, which is a standard protocol where he was treated (Hopkins). They radiated both sides of his neck, the right -- where he had two positive nodes -- and a lower ("prophylactic") dose to the left side. The advice, given strongly by medical and radiation oncologists and the nutritionist alike-- "if there is bilateral radiation you *will* need a PEG and if it is one-sided, you *may* need one." They recommend getting it put in before radiation starts, to allow time to recover and also, while you are still in good shape. Some people refuse, and some of them make it through OK (but struggle near the end) and others end up getting a PEG put in later -- often after becoming somewhat debilitated. I know a lot of people on this forum have said the PEG was literally a lifesaver for them!

My husband got a PEG, with a great deal of reluctance, and ended up never using it! For some reason, he did not get as severe mucositis as most patients and was able to swallow throughout, although he did lose some weight. To add even more irony, the PEG failed in his last week and fell out - they opted not to replace it as he was doing so well.

I should add that our ENT and both oncologists stressed, nay -- threatened -- that he needed to *keep swallowing* something -- even if only sips of water -- throughout or he could lose the ability to swallow as the muscles, tendons etc. can atrophy through disuse -- just as if you had your arm in a cast for 6 weeks.

So I guess the moral is: maybe he can make it through radiation without a PEG, but it would ensure he can maintain addequate hydration and nutrition, which will in turn prevent interruptions in treatment (which can reduce treatment efficacy) and improve his chances for a quick recovery. It is not that big a deal, just a bit of a pain to flush each day. He should try to eat as long as he can and continue to swallow. Get Difflam -- available over-the-counter in NZ -- benzydamine HCl mouth rinse -- which helps reduce severity and duration of mucositis. Our dental oncologist was in a clinical trial of that product and thinks it worked great for HNC radiation, but it's not available here yet. Ask your RO or nurse about it.

My husband Barry was eating regular but soft foods eight weeks' out of treatment and now, 4 months' out, is eating everything but very spicy stuff and very dry things like crackers and crisps. So hopefully for David this will also only be a "bump in the road" and that he will soon return to baseball (in New Zealand?) with his full strength.

Gail

Hi Marie Lynne
I am new to this board as my husband age 59 but a healthy robust 59 has just been dx with oral cancer of floor of mouth. We are waiting to meet with the Ca surgeon on Tuesday. I am fortunate or unfortuanate however you look at it to be an RN and an OR nurse. I will give you my 2 cents about the peg. I feel that it is a big step to admit you have no control over your body if your husband wants to remain active and i know mine does i think I would strongly suffest you wait. it is a very minor procedure done most of the time with local anessthia and I feel can always be inserted at a future date if the need arises.
I know this aspect will be particularly differcult for my husband becasue we enjoy eating out and do it foten. Besides being in the health care field i have always expressed my concern about feeding tubes prolong elederly lives, never thinking we would be heading down this road at a young age.

Good luck in whatever you decide
Jag

Do not let them radiate only one side, that is not the standard. If they insist, find a new doctor!

Hello Marie-Lyne,

I had a peg tube inserted before my surgery for ssc of the right tonsil. I was at 145 lbs. pre-cancer and dropped to 121 lbs. in two weeks after the surgery. When I started using the peg on a reguler bases I gained most of the weight back in about 6 weeks. It is a personal decision on your part. He will lose weight during treatment. How much would be a guess. Some have swallowing problems which doesn't allow enough nutrition to be taken in orally to heal and maintain weight.
Some go without the peg and do fine. If he can eat enough to heal and maintain his weight the better off he will be. Thats just my opinion. The old saying "Use it or Lose it comes in to play here.
Go to the search engine at the top of the page and type in PEG, You will have enough to read for quite some time.

All My Best, Danny Boy

Marie-Lynn, Glenn is absolutely correct. This cancer has a nasty habit of jumping from one side to the other. Standard practice is to radiate BOTH sides. This is a VERY important point and should be discussed with your doctor sooner rather than later.

With regard to the PEG, I was ready to leave town and change my name. It was beyond a big deal with me. Sanity prevailed and I felt incredibly stupid for all the worrying I had done beforehand. I was put to sleep and woke up with a tube. Some people have soreness, but I was in very good shape and was out doing heavy yard work the next day. It literally saved my life because radiation and chemo made my mouth too sore to take medication or even water, let alone food. I am quite sure I would not have been able to complete treatment without it.

There are people here who managed without, but I am very glad I had one. If you have specific questions about a PEG, I will be happy to answer them.

But do insist on bilateral radiation. It could save your hubby's life.

While you can put one in at any time, my experience in talking to many patients is that they wait until they are already sliding backwards before doing what is needed. What I mean is not just loosing significant lean body mass, they are not healing as well after treatments as they could be with out the proper nutitional intake (you're healing everyday after radiation etc. as your body tries to repair the damage done by the treatments) All this delays ultimate recovery and compromises quality of life. You can heed the advice of some here who have had an easy go of things without mucocitis, (and he may be one of the lucky few who fall into this category) or you can listen to the group like me that could not eat by mouth at all, and refused the PEG until my doctors wouldn't take my no for an answer anymore. In retrospect I should have had it right form the get go. If you end up not using it... so what? If you need it it is there. If he starts losing body weight, it wil not just be fat, it will be muscle mass ie. lean body mass, and that is not a good thing. If he is not taking in the right nutirents because it hurts, tastes like cardboard, or he is too apathetic and sleepy to care about eating, he is still doing damage to the rate at which he will heal. The downside to the PEG is so small. If he drops more than 10-15% of his body weight, a quality institution is not going to let the choice be his, he will be getting one...but instead of losing that nutritional factor for that amount of time, why even go down that path?

Also, while having a PEG inserted may under "normal" conditions (whatever those are since a PEG is usually inserted when soemthing is not normal) be "minor", it isn't something I would have wanted to have done when my throat was raw from radiation! I suspect that makes it much more major than it was to have it done beforehand.

I have a love-hate relationship with my PEG. It's what has kept me alive and healing. OTOH, I am praying that I can get enough swallowing ability back to get off it. I do NOT think I have problems with swallowing *because* I have a PEG, though. The treatment made swallowing difficult and the PEG saved my life despite that.

I had mine inserted over two weeks before I started radiation and I kept eating and not doing the PEG during the first two weeks of radaition, but by the fourth week, I was really glad I had it as swallowing had become excruciatingly painful. For some people, they'll be lucky enough to never get to that point and if that's the case, all you did was prepare for the worst. It's VERY simple to get rid of the PEG at the end.

Nelie

The PEG was a life-saver for me. I got it after a couple weeks of radiation when it became obvious that I could no longer get enough nourishment from swallowing. I went to work with it under my shirt, played golf with it, etc. I would hang it on a nail near my desk and feed myself at work and at times I hung it in a locker room toilet and fed myself before a golf game. It was never a problem and I kept it for 10 months, only getting rid of it when it was clear that I could swallow well enough to sustain myself. I still lost about 20 pounds but it would have been much worse without it.

Best of luck,
Danny G.

We've been down this road before but here goes. I didn't get a PEG. I only had to be hospitalized twice in the ER for rehydration. I dropped over 60 lbs and slowed the healing process. I had to take huge doses of narcotics just to sip water and essentially "eat" the same stuff they put in the PEG tube. Of course either I couldn't taste anything anyway - or worse yet, it tasted like crap. Would I go PEGless again, I honestly can't say.

I am over three years post Tx now and everything is working fine.

I belong to the minority group here without a PEG during treatment despite difficulty in swallowing. I managed to go through the whole treatment without a feeding tube and lost about 16 lbs and regained all my lost weight in 6 months' time. Maybe it is a cultural difference, in Hong Kong, patients are seldom advised to have the tube before the treatment. In fact,only about 25% of head/neck cancer patients here are required to have a tube during treatment. I am glad that I didn't need one but I won't object to anyone opting for one if it is an easier path for getting nutrition.

Karen

I couldn't leave the hospital without a PEG so mine was out of necessity. Since then during my surgical recovery and now facing radiation, my PEG is my friend--in fact we've named it Margaret! I feel measurably stronger than I ever did after any of my other surgeries and these two (in one hospitalization) were by far the most invasive and radical. I feel more confident facing radiation with my nutrition not being the obstacle it could have been. I can't afford to lose weight so this is of great comfort to me that I have the means to hydrate, etc. without interfering with the site treatment and healing. I've had and am having some issues with site irritation and minor infections but dealing with those is nothing compared to the difficulties I'd face without the PEG.

I strongly agree with Brian (and others) that getting it put in before things get difficult, while your body and emotions are even more compromised, is very wise.

For what it's worth.

PEG, don't hesitate. If you discover that don't need it during treatment or post treatment it can be removed in office takes about 15seconds. Then you are left with a second navel.
Darrell

Hello Marie-Lynn
I just wanted to add my two cents worth...if your decision has not already been made?
Not only could my hubby not swallow, he also had such severe nausea that he could not use the PEG for nutrition and had to be fed thru his PORT. But, the PEG was invaluable for hydration purposes, we could not have managed without it.
I wish you all the best in the coming months.
Take Care
Marica

Just an update,

D spoke with his RO about not beeing confortable with the PEG and discussed the possibility to speak with another RO who has a different approach (just to say how the whole PRE thing troubles him) which in return the RO suggested one of his collegues. The words is out because yesterday the gastro-nurse called David and they had a wee chat and she told him that it was better that D takes another week to think about it and the postponed the insection of the PEG to next week. There is no hurry there. Radio starts in 2.5 weeks.

We all live things differently but David took the dx, the surgery and the radiotherapy with rationality and dealt with it with so much calm even the 9 teeth extraction (which were all healthy and he loves his teeth so much and takes so much good care of them) BUT the PEG is an issue that just devastates him. My wee opinion is that in all this the PEG is the only issue he has control over which to have or not to have and he wants to make the decision and not someone else. thanks again for all your advice.

m,

Unfortunately, this question comes after the fact, but if your husband's teeth were so healthy, why did they insist on removing them? I could understand the need for removal in advance if there were some existing problems that would be better dealt with before than after radiation -- but healthy teeth??

Cathy

Thanks Cathy,

Not sure what to tell you except that David had 3-4 fillings out of the 9 teeth out. Maybe I should have not said they were ALL healthy teeth and confuse you. The fillings were in between healthy teeth. Included in the 9 teeth out, 2 were healthy wisdom teeth. The RO and hospital dentist explained to us the risks of osteonecrosis and the extraction was a way to prevent that. I am not sure if they considered the fact that David took tetracycline when he was a kid and a consequence of that as an adult is that his teeth have been badly stained. Apparently the integrity of the teeth is ok but the "tetracycline generation" was short lived as it was pulled out of the market in the 70s and there is no data on tetracycline treatment and radiotherapy or should I say "I haven't found anything". Is he more at risk? perhaps. I think they didn't take the risk.

At first the RO had recommended all his front teeth be extracted as well because of the high radiation dosage he would use at the front. At the end he has decided on 52Gy and save the front teeth.

I must say that there was not a lot of time to digest all the info. I have done so much reading and I feel I'm constantly on the internet seeking for more data on the SCC of the base of tongue, its cause, treatmentetc...my head is about to explode.

You're right it is a bit late to think about the teeth issue BUT I will make sure that I learn from your input and make sure that I do all my homework b4 the next step. Thanks for your posting.

Marie-Lyne

Hi Marie-Lyne
As Gary stated, you 'opened a whole can of worms' when you opened this PEG topic. I think there are only 6 of us who did it without a PEG and I'm the only one that did not have a significant weight loss, only 4 lbs. I also stubborn and had XRT and no Chemo. It only takes about 1500 calories a day to maintain my weight. How many calories a day will he need to ingest to maintain his weight? Is he stubborn enough to swallow when everything tastes like cardboard or burns his tongue?

I do hope you have researched our previous posts on this topic because there is some very good info there. Mark has several good ideas for blender recipes and Danny has a super calorie shake.

Is your husband getting chemo? From what I have read on this board, that may effect his ability to eat or drink. He could try to make it the first two weeks without a peg and see how it goes and make his decision then, but if he losing weight, he needs to get the PEG. If he can make it to the near end, there is a nasal feeding tube that could be used for a few weeks (you don't want to be seen in public with this and certainly not playing baseball).

Just go to all the old posts and READ. While I doubt your husband will make it without a peg if he is having chemo, I'd print them off and let him make initial decision. Follow the GAILMAC thread on Barry's treatment. There is a lot of good info on coping with the problems in treatment.

Take care,
Eileen

One of the more barbaric things is the removal of your teeth. I went for a dental consult with an actual dental oncologist at a CCC and he wanted to pull ALL of my teeth. I have paid many bucks over the years for superior dental care and after researching the real risk or ORN, which is about 10% and it can happen to people WITH all of their teeth pulled I told them to go to hell.

No wonder he is balking at having a PEG put in NOW if radiation isn't going to start for 2 to 5 weeks.

Too bad I didn't tell the dentist at my CC center to go 'fly a kite'. I allowed them to remove my 16 healthy rear teeth, so now I wear an upper and lower partial. Despite religious use of the floride trays, I am finally experiencing dental decay to the point that my remaining teeth will be capped, but at least I have real teeth and not something I have to put in a glass every night. It seems that most others have not had the decay problem I do.

Take care,
Eileen

I'm David's friend who didn't PEG. I had the same oncologist as David and at the time he wasn't so insistant regarding a feeding tube. I just didn't want one. I wanted to have as much involvement with my healing as possible. My wife reckons eating throughout radiation is why my parotids both still function reasonably well. Lost 7kg and stayed at my normal 10% body fat. I did serious drugs and lots of meditation to keep eating and my wife made sure I had at least half an hour of walking or cycling every day. And, I suppose, I didnt'know any better.

kem

ps gailmac: Kiwis are the softball world champs

Kem, whether or not you eat during treatment has no bearing on parotid function. That is strictly determined by where the radiation is aimed and what the dosage is. That said, I am very glad you retained yours, as did I. We are very fortunate.

Hi Kem!!!

can't believe you're here too. Oh well, should have known you're the best !!

Heaps of talk at our home with Ian and Melanie
(Rob's new registrar). They rung a few times each. When you have a chance ring D. I think he could use a "bloke talk". Some how my capucino's conversation doesn't work!!!

heaps of love,ml

I never had a PEG. But to be honest, there were times where I wished I'd have had one. I'm pretty stubborn. Okay, I'm really stubborn, sometimes a good thing I guess, and I just made up my mind that I was not going to have one. My RO threatened me with it a few times, but I managed through and didn't lose much weight. It was a matter of wills.

John

P.S. Forgive me but I just have to say GOOOOOOOO STEELERS!!!!!!!!!!

I had the PEG tube put in about 3 weeks into radiation. It was not a problem and really saved my by allowing me to keep up the nutrition. I had it in 12 weeks and the MD just jerked it out (ouch). I am 90 days out from radiation and can eat most moist foods. I have regained about 70% of salivary function and 90% of taste. I think the Ethiol during radiation may have helped. I have my first CT scan since radiation in a few days and am scared to death. I hope the radiation worked.
Scott

Hi, Scott-John can attest to the "OUCH". Hope your CT shows roses and daffodils. Amy

Hi all,

I echo those sentinments although "OUCH" was not my choice of 4-letter words! Thank goodness the pain did not last much past the time it took to get back out to the reception desk. The doc and nurses still tease me about it from time to time. Pam

I made them sedate me to pull it out the first time. I will avoid pain at all costs. I still felt the tube being pulled out but it didn't hurt so bad and only lasted a couple of seconds.

I now have my second tube in and it is working well. If it has to be removed for any reason I will again make them sedate me!!! I'm a big chicken when needles and pain are involved.

All my Best, Danny Boy

Yes, having the PEG removed hurt a LOT just momentarily, but the payoff was that I got to holler at the top of my lungs in a place where quiet generally is the rule.

G'day everyone!

After very very intense reflection, reading all your helpful advices, talking to people, balancing all the pros and cons, and risks, David has come to a decision. He is determine to eat and swallow until the end and will not have the PEG tube inserted. He leaves his options open to reassess the situation if it gets out of hand. This is a good sign to me!!!!

David is a very determine men and if he's says that he is going to make it witout the PEG, nothing I say or do will change his mind. I so cross my fingers that he will be one of the lucky ones (as some of you were) and will not need the PEG. Again, he took this decision after careful thoughts, it has not been made lightly and ALL your responses have read and re-read and re-re-read.

Radiotherapy will start in 2 weeks so I am going to feed him like a little piggy for the remaining of that time and build up the carbs, proteines and other goodies. He can not afford to lose too much weight. We have made a committment to exercice everyday even if it's to walk just down our street and he has promised me to eat what I will give him. I will count all the calories he ingests and push the fluids up. I have wrote down all the drugs you have suggested and will talk to our RO and see what is available here in NZ.

Thank you so very much. I will keep you posted of David's progress and experience.
A sweet and special thank you to Karen and Joanna.

Ok I'm off to buy a homemade ice cream machine!!!

Marie-Lyne

Scott...many good vibes being sent your way for your CT results...we are rooting for you!

Marie-Lyne
Same to you and David..he is a lucky man to have you there to help and encourage him in this fight.
An ice cream machine...now why didn`t I think of that!

All the best to both of you.
Marica

Given that the PEG is a minor procedure, this surprises me, but I respect everyone's right to do what they think best. I fought the idea of a PEG, for reasons that are too stupid to admit to here. By week four and significant weight loss, not to mention the lack of proper nutrtional intake, the doctors took the decision out of my hands. By then i was behind the 8 ball as far as my body's needs, and I am not refering to weight....for all those who are advocates of the "cheescake en mass" route.

Remember as you fatten him up for the future, that weight is not a measurement of health. Feed him things that are nutritional, not just calorie dense. It's all about healing rates and the bodies ability to do so. Make no mistake this will tax its ability to do so.

Lastly, there is no reason that a homemade ice cream (or blender smoothie drink) could not be fortified with whey protein, and other nutrients. Fat isn't going to help him heal.

I'm three weeks out of radiation therapy and I couldn't have done it without my PEG.

I tried just drinking the nourishment at first, but by third week, throat sores and mucous were extremely difficult to overcome. I switched to the PEG for nourishment, but continued to take small sips of water and my medications by mouth (CoolWhip, suggested by RO nurse, helped meds slide down easier).

I have tried drinking a few cans with success in the last week, but it hurts my throat.

Pete

PS I'm not sure whether it may just be a form of denial to try to avoid using the PEG or it may just be the challenge of doing something that's within our capability and gives us a focus for the daily battle.

Hi - it is already 1AM and my husband is going in tomorrow to have a PEG inserted. Once again, I am realizing that we may not have the information we need. I have read the posts and know basically what to expect, however, was told it was a short procedure (15 mins.) and from that I assumed a short stay in outpatient. Is this accurate? Or should we count on a day long affair?
Michele

Michele,

I had my PEG and a port for chemo put in at the same time so the whole thing was a bit more involved for me and I ended up staying overnight in the hosptial for one night after the surgery. But I think that was in part because the doc who put in my PEG didn't want me eating anything (by mouth or PEG) for 12 hours after insertion (I guess to let the stomach heal a little) so I had IV nutrition while I was in the hospital overnight. I think the doc who inserted my PEG was way more cautious in the whole process than what I've read many other people went through here--which I don't mind since I've now had my PEG for 10 months and have had no problems with it (knock on wood) though I've had all sorts of other problems and unexpected infections, etc. in other parts of my body since then.

I guess you are probably headed off to have the procedure done about now. I hope it is short and painless for your husband!

Nelie

Barry was told not to eat anything but liquids or very mild, bland soft foods for 24 hours after recieving the PEG. In fact, he was feeling rather bad (in the stomach) -- lots of gas and some gastric reflux so he really didn't want much.The nurse and doctor at the section where they did the surgery went over the basic care of the surgical site and tube for the first 24 hours. We then went back to hospital the next day and our chemo nurse showed us how to flush the tube (which has to be done once a day, whether you use it or not) and clean the incision site. Barry was having bad reflux so they precribed Reglan (metoclompramide) which moves things through the stomach more quickly and that took care of the problem. However he lost about 4 pounds the first week after getting the PEG as he ate very little for several days right afterwards. He was also sore at the incision site and had difficulty getting into a comfortable sleeping position.

We used a large (surgical pad) gauze bandage and surgical tape to cover the PEG -- the tube was taped up against his abdomen and then covered with the pad as this prevented any "catching" of the dangling tube against clothing (or our dogs jumping up against it, ooof!). It was just important to make sure there was good air circulation. It healed fine and after about two weeks there was no more soreness.

Ironically, he was one of the few patients at Hopkins who never used his PEG, for some reason he was able to eat and drink all the way through treatment although the foods he could handle did become pretty limited. But it was good that he had it, many folks there told us it was a "lifesaver" for them...

Gail

Hi. I just realized I posted our PEG experience on the other forum instead of here. But basically, what I naively thought for some reason was going to be a half day or even 5-6 hour procedure turned into a five day hospital stay. We went Monday morning to get PEG tube. Jesse was severely nauseated/vomiting upon arriving; so they gave him fluids for a good while and than went ahead and put the tube in, but by next morning, CT scan showed it had "backed itself out." So we got another surgeon to put another tube in using a different technique and so far it has stayed in. But Jesse couldn't have anything in it for 24 hours to make sure it sealed, and by then, we had decided to have a port put in while he was still in the hospital, so he was only able to get the feeding started for about 8 hours before he had to fast again to prepare for the procedure this morning. So already 5 days in the hospital, but at least we have the PEG and a port in place and hopefully we can move forward from there. I will now pray that there are no problems with infection and am fighting the feeling that if it can go wrong, it will.

Should he secure it with tape to keep it from pulling out? Especially at night? Will it hurt the inside of his stomach if he lays on it? The home health nurse is supposed to come tomorrow, so I guess she will answer these questions, but hopefully nothing will go wrong tonight. The nurses at the hospital don't seem to have a lot of information, and the booklets don't give a lot of detail either, at least about practical things.

Thanks.
Michele

Michele, My John is on his 2nd peg[as well as 2nd surgery] Other than getting used to how to tape it so it's comfortable, and learning to sleep on the other side, he hasn't had much problem. It really is important to keep the skin area clean and the tube flushed with water, but that is easy to do. I have to remind John to keep a gauze pad between his peg and skin, so you might watch for that. Amy

Hi all, long time no talk!!

I thought that I would give you an update on my hubby's progress, my sweet David. To have a PEG or not was probably the 1st big decision we had to make. After all your helpful advise, information and intense reflexion, David had decided not to go ahead with it. It was not an easy and light decision as you know but I am happy and relieved to say that he went through the 7 week of RT without a PEG tube.

RT was complete at Easter and we are meeting the RT and ENT specialists for the 1st time tomorrow. Morphine has helped him immensly going through the process and he has been able to eat until the completion of the tx. He took heaps of Fortisips and lost 5kg during RT.

I know that the PEG tube is a saviour for a majority for people and David is one of the few lucky ones. I certainly would be the first one to recommend it but what I have leant from this is that "self-awareness" is an important factor that we can not disregard. David knew he could not go through the RT with the PEG tube. It meant so much more then a small surgical procedure to allow to nourish his body. The significance went beyond it.

David is a bit anxious about tomorrow's meeting. We still don't know if the RT has worked. We cross our fingers. Again thank you for all you help so far. I have been busy looking after our young children and sustain a certain normality in our household. I'll write again

Ciao,m

Hello M,

While away from the forum, I missed getting into this PEG debate (this time) I too was one of the ones that made it without a PEG. There are few subjects that provoke strong opinions more than PEG tubes. I am happy that David was able to do it without. Congratulations on completing RT and I hope David recovers quickly from the other effects.

Hi M,
Great to know that David managed to go through the treatment without a peg and just lost 5 kg. I also belong to the minority group without a feeding tube and feel myself really lucky. I can understand David's anxiety about the first follow-up meeting. My best wishes to him that the radiation treatment has worked 100% on the tumors. The light at the end of the tunnel is awaiting you two!

Karen

Friends,
For those of you contemplating the PEG tube, I've said it before and I will say it again. The PEG tube was my best friend. The procedure to put it in was easy and once swallowing became impossible it was my only source of nutrition for many months. Even after I was able to swallow liquids, I still depended on it for most of my nourishment and used it as well to take medications.
I worked with it under my clothes, played golf wearing it, and took showers with no problem. Yes, I had to learn to sleep on my left side, but that was no problem either. I hung that bag everywhere from a nail on my office wall, to a tree at a campsite, to a hook in a bathroom stall.
I still lost 20 lbs. and cannot imagine how I would have made it without the PEG.

Danny G.

The PEG was our best friend too. It kept John alive and out of the hospital and I didn't have to watch him slowly wither away. Amy

There aren't many of us that can do it, but congrats on getting thru it without the peg. I'm another one that made it but had no surgery other neck dissection so had no trouble eating before radiation. No one ever recommended that I get one. I hope his check up is all clear and you guys can get on with your life. He did good.

Take care,
Eileen

This "Peg thing" is really starting to annoy me. 1st, I do not think "congratulations" are in order. That's like congratulating someone for surviving cancer without surgery or radiation or chemo. Going "Pegless" is NOT a badge of courage- it is a part of treatment that is doable for some-but not others- would you tell your Doc-"No chemo or no radiation or no surgery" if your battle with this disease had just begun? Would you refuse a peg if you were going to have a trach? I think we are giving the wrong idea here. Surviving the treatments to cure this disease is battle enough without making it seem like some folks ae stronger or braver than others. Just my opinion-folks. Amy

Here we go again.......

I think Amy makes a very good point about congratulating anyone for making it through radiation without a PEG. From what I see, getting through radiation without a PEG is done all the time. I also see people with a PEG that have a horrible time.
Getting through radiation is the TRUE and ONLY badge of courage, and I can promise you that the badges are the same color whether you had a PEG or not. So, let's be kind and sensitive to new posters and allow them the freedom and comfort of choosing what is best for them without feeling like they are "less" brave or not as strong as some.
Minnie

Annnnnd their off!

Wow!!! I was not expecting a debate again!!!
My posting was just an update following an important decision that David made at an early stage of the disease and at that time still under the choc of the news. Since so many of you have answered to my first posting back in January and write to me personnally, I wanted you to know where we were at.

For me this forum is a source of information, learning from people who have lived their experience before we did, sharing our experience and slowly is becoming a place where I can help in return. I can understand that for some of us this forum responds to other needs. It is always better for everyone's health when we stay constructive though!!

Although I can read strong opinions and exasperation regarding the PEG's subject, I wanted to let you know Mark that I have not taking your comment "congradulations" as a statement of courage or being brave or whatever but just as words of understanding, support and "keep in there". Nothing else. I can also understand that we do interpretate messages differently but like everything else in life, I think it is quite important to be able to read between the lines!!!

Lets all breath-in and breath-out on this one..shall we !!!

ciao,m

They never will m - the great PEG debate has been going on, ad nauseum, since the beginnning of the forum - just take it with a grain of salt.
I don't think Mark's "congratulations" on completion of RT (i.e. treatment) brought on the "debate".

This PEG business is always very emotional for some odd reason. Factually, most patients here have had PEG tubes and did well because of them, a comparative few needed them for extended periods of time. A few have had problems with the PEG, either placement issues, leakage, infection, heartburn or nausea. A few have had PEG tubes implanted and not used them and several, (like myself) refused to get one and are doing fine today. A few persons here live in countries where PEG tubes are NOT standard operating procedure. Other PEG facts - some RO's will flat out refuse to give treatment unless you have one.

As far as the "badge of couragous" thing goes -we need to focus on providing the patients with the best advice we can and leave the BS out of it. To PEG or not is a personal choice that should be made in conjunction with the medical advice from your team of doctors. They are like any other form of medical decision - risk and benefit must be weighed and it is as simple as that.

This "warrior attitude", "badge of courage" stuff has got to be directed at the caregivers and outsiders who hope that if THEY get cancer they can "beat" it. Being a patient and 3 1/2 year survivor, I can tell you, from my experience anyway, that I live one day at a time. I did not have a "courageous", "brave", "warrior" attitude at all - ever and I never, ever will say I "beat" cancer. I was scared most of the time when I was in treatment and frankly had doubts at times that I would survive. In fact I cringe when well meaning people say "oh you beat cancer" I remind them that "I am cancer free today" and that's the best they're going to get from me.

I am a person of faith and that helped me to accept the realities and find some peace in the midst of all of the chaos. Am I still afraid that my life will be dramatically shortened as a result of this disease (or the treatment of it)- you bet and my story was a cakewalk compared to many others here so I can only imagine where their heads are at.

I hate all of the tests, doctor visits, scans, fear, etc. I would give anything to have my old uncancerous self back.

The people with REAL courage here are the ones who are dying, living their life each day, one day at a time and with dignity. I should be so blessed to have that kind of courage if I were in their shoes.

So lets save the "courage" thing for the real deal and not whether you got through this with a PEG tube or not.

Whether or not you absolutely need the PEG or not depends on how adversely your swallowing ability is affected by radiation.

As someone who was adversely effected, and has had even more swallowing problems with aftereffects of radaition on swallowing, I can say that it is frustrating enough to lose that ability in treatment, even more frustrating to not be able to easily regain that ability, and probably more frustrating still (I'm not at this point yet) to realize you will need a PEG for the rest of your life. Yet we have people in this forum who are in all of those spots.

I am happy for anyone who finds they can get through radiation without a PEG, but if there is any admiration related to this, it is for those folks on this board, like Tom Jackson, who are pretty much permanently dysphagic after their treatment, with all the hassle and social alienation that goes along with that (something that I have learned too much about in year since my treatment ended and I didn't regain my ability to swallow), and never complain about it but spend a lot of time supporting other folks here who are going through dysphagia for some temporary period as a result of treatment.

Nelie

Gary, beautiful post. Ditto the "warrior" thing........I wasn't a "warrior" during treatment and I'm still not, at the moment I'm losing sleep over this implant business and true warriors don't pace the floors at night!

The day I accept some of the situations I see others on this board dealing with, and with the same amount of dignity.........that is when I will consider myself a warrior. For now, I'm just one lucky woman that is still here to see her children grow.

Amen to Minnie. I have had chronic insomnia ever since I started treatment. I am sure that true warriors and people of courage sleep well at night ;-)

Basically that's what my H&N surgeon told me also. I figured it was because of my stellar lifestyle - years of non-smoking, drug or alcohol use, perpetual optomist, etc.. Healthy foods, etc. No exposure to Agent Orange, etc.

But he summed it up to "just plain luck".

In the real scheme of things a PEG tube is a "3" but many prefer to give it a "10". There are much bigger fish to fry then having some dumb tube hanging out of you.

Gary, That post was wonderfully put. We tend to focus on small, minute problems while there are so many others that REALLY "have their plates full".

Thanks for your words.

Molly

Don't have anything new to add to the above, besides I have to go out to the big garage and pry John away from his Model A to come in and do a peg tube feed-his only means of nutrition since Dec 05. Amy

Amy............how does it feel to live with a true warrior? I'm thinking of you both.
Love,
Minnie

Gary.............I'll be thinking of you around 3am. If I get 4 hours of sleep a night, I'm doing well.

I think the only person on this forum qualified to answer this is Gary Allsbrook.

Danny Boy

Would someone mark the best threads on PEGs (I am traveling and speaking as well as doing three TV appearances this week on oral cancer, and can't get to it) and email them to Chester. Just the www.page title at the top will be enough for him to pick them up and we will post them to the FAQ's section at the top of the forum. In the future if there are (and there will be) more PEG questions, that we can just refer people to there - we will. New information, problems, or questions we can answer here.

On this same subject, I have posted it here many times before, we have some really information heavy posts here, which I hope that Tom will pick up as they are as parts of the getting through it project rather than reinventing the wheel. But on that note, they should also be added to the FAQ's. This takes time on someone's or many people's parts, and getting them in the FAQs is an important thing. Soon we will have to start seriously pruning the boards of old posts. Some of this valuable information will be lost if we can not find volunteers to do this since we will just cut out big chunks of postings by earliest dates. Without doing this, the boards will take up too much server space and begin to run slowly.

M, You took my comment exactly as I meant it. Please do not be concerned about this debate thing.

For some reason, even if I stay out of this debate I have the ability to piss people off.

Why this PEG subject is so provoking I will never understand. It has to be in the world of Sigmund Freud. The debate has been so strong that we now have several forum members that will not dare identify that they did RT without a PEG. I have resigned myself to believe if someone new comes to this site they are going to be told that a PEG is the only way. There is very limited interest among most here to consider the impact of this one-sided opinion. I really hate to say this but, for this one subject, I am happy I did not find this site prior to my treatments. If I had, I would have had yet another thing to freak out about. It was 2 years out before I found OCF and never knew about PEG feeding until then. My RO never mentioned it and I trust he knew what he was doing.

Gary has just done an outstanding job of putting plaster over this PEG issue but I am unimpressed by the lack of interest, among others, in posting neutral information and balanced views on this subject.

I have NEVER pushed for people to refuse getting a PEG. I ASK that you all not push people into getting them! Gary has said it well this is a matter for the patient and doctor. Letting people know that they have options is what we should be doing. If someone needs or wants a PEG more power to them. If someone really wants not to have a PEG they should know, by what they read here, that it is possible to get by without one.

Mark, you really speak my mind. I don't quite understand why patients who have PEG or their caregivers feel so defensive and sometimes offensive when they come across posts from others who have experience without a feeding tube.Like you, I never told people not to use one if they have the need to and I don't think I have done anything wrong by sharing my experience without a tube. I dare to speak up here because I don't want this subject to be of a one-sided opinion. I always think that my role here is to share what I have gone through and as a 5-year survivor from a stage 4B cancer, I think my participation can give some, if any, encouragement to members here.I have never questioned myself whether I am qualified to give response to a certain thread but I have learnt to speak much more cautiously in order not to create uneasy feelings from others.


Karen

I am going to try to respond to Brian's post, Mark's post and Gary's post in as clear AND unprejudicial manner as I can-based on our personal experience..*** To summerize what follows: Peg tubes are a way to guarantee nutrition and hydration during treatment. SOME PEOPLE may NOT need them. If not inserted at the beginning of treatment, some may find additional hospitalization is necessary. Each individual responds to treatment differently.A CLEAR UNDERSTANDING OF YOUR TREATMENT AND POSSIBLE SIDE EFFECTS IS NECESSARY TO MAKE THIS DECISION ***
Before surgery #1.John's surgeon NEVER gave him a choice whether to "peg or not peg" At our presurgery meeting, Dr. S. explained that he would be doing a bilateral neck dissection,removal of all but 5 upper teeth, floor of mouth tumor removal, removal of some of the tongue and the insertion of a peg tube. End of discussion. In looking back over our journal after the 1st surgery and rad tx., if John had NOT had the peg, he would have spent many days in the hospital being fed and hydrated, at additional stain to him and me, and additional cost to everyone. 46 days after his last rad tx. he had the peg removed and tried to maintain and boost his weight by mouth. When the 2nd cancer started growing, 4 months after rad. tx, the pain in John's mouth and throat shut down the little amount of food he had been able to take by mouth and he began to lose alot of weight. I need to reiterate here that my husband is not a wimp or a complainer. The 2nd surgery included more neck dissection, a titanium jaw with free flap, a trach and a new peg tube. At this point, his only way of getting nutrition is the peg. The gunk in his mouth and throat seem insurmountable. We have tried everything on this forum to cut it-to no avail and when he tries something by mouth it just gets worse. So for now, it is either the peg or the hospital. Amy

Well thank you Mark, but it was Eileen that said congrats for doing it without a PEG. I figured they had you pegged wrong (no pun intended - well maybe a little ;-)

EVERYTHING that could possibly be said about a PEG has been said - probably 20 times or more since I have been on the board. If you do a search on PEG you will find 15 pages of posts to wander through and that's the maximum amount (over 300) that you can search. Some of us just get tired of hearing or saying the same old stuff over and over so we can get a little testy sometimes. It's like the definition of insanity - "doing the same thing over and over and expecting a different outcome". Ok, I'll get back on my meds now.

Since I have started this whole subject, perhaps I can close it???

Thank you to all your wisdom. I know that at the end of the day you ALL want to help and YES you have helped us immensely...maybe you don't realised how much... ALL of you. I know and understand that different opinions are based on each experience. I hope we all realised this?? This is why new people like us learn and get SO MUCH of this forum (don't mean it in a selfish way). David has made his decision based on many variables and this site was certainy one of them (although I was the messanger) and he has listen ALL the replies. He was able to analyse to pro's and con's based on OUR situation, his capacitiy to deal with the PEG, the feedback from patients here in Christchurch, his doctors ( althought they REALLY press him to have the PEG, our friends, this website and others.

What makes this forum so unique is that ALL but ALL opinions and views on any subjects are freely expressed. If you really want to help, it needs to stay this way.

In the light of the respond to this topic, Brian you might a have a great idea in having a "PEG" subject in itself.

PS: His beard is starting to grow again!!!

FWIW, I don't have any problems with people here who made it through without a PEG saying so--I was told by Dana Farber if I had radiation alone a PEG was optional, if I had concurrent chemo, they required their patients to get a PEG, and this makes sense to me as I think chemo does make the mouth sores and sore throat much worse. Most of the people I've seen on this board who have made it through treatment without a PEG did not have concurrent chemo (though I know there are a few exceptions) and all I would like is that they remind new folks of that when talking about their experience because many of the new folks asking about it are people who are getting both.

I also agree with Amy that it's worth being aware that if you find yourself unable to eat mid-treatment and don't have a PEG the whole procedure for getting one can be a much bigger deal--more costly for everyone. And I also am a bit puzzled by the attitude which I do see expressed sometimes that somehow people getting through PEG-less are "tougher". We all have our own hardships getting through this treatment and the aftereffects and we really don't need to be trying to make judgments about how hard it was for us versus someone else.

Sorry if anyone finds this post either "defensive" or "offensive"--I think those descriptors are a bit extreme to describe Amy's or my responses here. But whatever.

Nelie

Can we PLEASE bury the PEG discussion now -it's like the department of redundancy department

Was I "tougher" because I did it without a PEG, maybe I was dumber but hindsight is always 20/20. Stubborn might be more appropriate in my case. I can't speak for the other PEGless ones.

This is almost as bad as Michaels 600+ posts about practically nothing and he's even not around anymore (he is alive & well I am sure). Even he got bored with it.

This is my last comment on PEG's you guys can have at it...

Gary
Don't be silly, of couse this will raise it's head again.. It's like saying that if you don't believe in Santa Claus Christmas will stop.
Sunshine.. love and hugs
Helen