I am about to start my rt treatment on 5/4/2009. I am not sure what to do about a feeding tube. Should I get it now, wait until I need it or try to go through without it? I weigh 245 currently, so I think I can make it through without it. Please let me know what you all think. No chemo, only rt 5 days a week 50x.
This a consult you need to have with your RO. He/she may have "rules" that they go by as in they will not stop radiation to insert the PEG, etc. I didn't want the PEG at all costs (and risks which I couldn't imagine at the time) and I lost 30% of my body weight that I couldn't afford since I was ideal weight going into Tx. I did survive despite myself but I probably made it worse by being so stubborn but hey maybe that's what also helped me get thru it (being stubborn). One thing I do wish I had gotten was a Port.
wfc
Like David, I refused to get a PEG or feeding tube of any type during my first round of radiation (40 treatments for a total of 72 GY -the "maximum") and my chemotherapy. Like David I was also at a good weight ( 177 lb and 5 foot 11 inches ) and working out at the gym every day plus doing yoga and pilates. I ended up at 133 lbs and spent a half an hour for each can of Ensure I could push down (total three hours a day at the sink )
I was so proud of myself for not getting a PEG that when I joined OCF, I started brand new the PEG wars - advising everyone NOT to get one - that you would forget how to swallow- etc. I was stunned by the pushback but just decided that weak people could still type strongly. I even cheated on the weigh ins with fishing weights in my vest and blackberry etc to read above the 140 lbs that my doctors had insisted I maintain or else they would quit radiation.
I WAS WRONG AND SHOULD HAVE GOTTEN THE PEG. This time around I had no choice- after the surgery, I failed my swallow test and still cannot even do a sip of water let alone any food. I am working hard at rehabilitation therapy but with such scarring on my epiglottis and missing half my tongue muscle, it will take almost a year they now estimate especially because I need to go get even more radiation - CyberKnife after memorial day,
There are so many psychological reasons NOT to get the PEG and yes, at least FIVE people on this board (out of 6,000) did indeed get through major radiation and chemo without it. Long story short,GET THE PEG NOW because they can do it easily without a major operation like I needed. (Just got the bill in for the second PEG which was $6,000 and I pay $500)since they had to do it via fluroscope in an operating room . Right now they can put in a PEG easily, BE SURE TO GET THE BIGGEST ONE, they will get you and NOT LESS THAN 14 FR at the very minimum. Search the posts here and you will find that unlike Urology, for PEGs, Size does Matter
Save your stubborn pride for the dark times ahead and do not fritter it away on avoiding the PEG. You don't have to use the damn thing if you don't need it, but it will be there if you do, Keep on drinking and swallowing every day anyway.
Charm
Hi. PLEASE get one now. It's not about being able to afford losing a few pounds, it's about getting the proper nutrition so your body can fight this. My husband was VERY resistant to having one put in. Fortunately he finally agreed to have one put in 2 weeks before he started treatments. He didn't need it until week 4. He is now totally dependent on it. He does continue to make himself swallow sips of water 3 times a day but he would have never survived without it. Even with it in he has lost 30 lbs. He is 5' 9" and now weighs 143 lbs. Our RO said get it now because we don't want to have to stop treatment mid-way through to have to put one in. Best wishes to you.
Hummm 5 out of 6000, now if only I could win the Lottery.
I did not need one. I was naive when I first started (pre OCF). I remember we spent about 3 hrs with all 3 Drs discussing in some detail. Before I started treatments they had me meet with staff to look into local housing if I could not make the 140 mile round trip. After 1st week they did a few tests and seemed convinced I would not need a peg. They did tell me about 80% of thier patients need one. I did not know any better. I signed up for a protocol that was supposed to help with mouth sores, etc but it was double blind study with John Hopkins, Anderson and a few others so they had no idea it I was on it. Later they could tell I was doing better than most so they "though" I had the real thing.
After 4 weeks into the treatments they were sure I could make it but did talk about the tubes up my nose if I needed to during the last week of treaments. I did lose about 10% of my weight but some of that was related to I did not eat any junk food. Yogurt, smoothies, oatmeal, ensure, etc instead of steak, pasta and chips. I have questioned them a few times after the fact wondering why I survived better than most. I have never received a real clear answer. Again, almost everything they told me before treatments happened exactly as they had laid out so I never had a reason to doubt them. My Rad Dr says it I have great healing genes and "took" to treatments.
If I knew what I now know from OCF I think I would go for the peg. I was just lucky
Please get the PEG!!!!!
I had one and still lost 65 pounds. OC isnt a diet and the doctors dont want you to lose anything. Your body needs the nutrition and will have a hard time getting it once treatments start.
I dont want to scare you but having 50 rads is alot and at about 30 your mouth and throat will be so sore you probably wont be able to eat. If you arent doing so already, eat everything you want now and dont worry about gaining weight. It could be a very very long time before you eat properly and are able to taste food so eat now.
Get the PEG tube!!!!!
Just getting the PEG doesn't mean you have to use it, but it's there if you need it. Although I had a PEG for my 'nuking' (I didn't have chemo), I continued to drink my water and take my meds by mouth, and even occasionally swallowed my food, but for the most part I used the PEG for the food.
wfc: Please get a feeding tube. It's not be big deal. You may or may not use it, but it's there just in case. I'm a 56 year old very vain women, and I have one. I just asked for it to be above my jeans, and I tape it up and no one knows. I haven't started radiation as yet, but I plan on still trying to orally eat my meals as long as possible.
It's better to be safe than sorry.
Sandy S.
Sandy said.... I'm a 56 year old very vain women,
Now that's a new one for the history books...
Although I never had a tube and survived everything I have been thru, I would advise getting the tube. I maybe am lucky or maybe just so hardheaded and set in my ways that nothing is going to beat me. I neither look my age nor act it. I owe that to my hard head. LOL I just refuse to get old and stay young. I been told that I am a one of a kind by Drs, Dentists, and many others. But if I were you, I sure would go for that tube. With it I might not have lost 70 lbs. Listen to these people. Most have worn the same shoes you have on now.
Nobody even asked me if I wanted a tube. There was no question. At 112 lbs, they just scheduled me for the surgery and did not give me an option. I guess they figured I was so tiny that I couldn't afford to lose even 10 lbs.
I had my tube put in two weeks after rads started.
I did not use the tube and was able to continue eating all the way through treatment, and without narcotic pain relief. My total weight loss was 5 lbs.
My case is an exception.
I hated my tube, and I hate the scar it left behind.
Even though I did not use my tube I would still advise you to get one, it is a Godsend if it is in fact needed.
Charm,
I'd like to know where you come up with this number of only 5 out of 6000 who didn't have a PEG. Which 5 are you counting? While the number is low, it is a lot higher than that. I for one didn't need a peg but I also didn't have surgery in the mouth or have chemo. I only lost 5 lbs so it is not necessary for everyone.
That said, 50 radiation treatments is a lot. Usually it is only 35-36. Swallowing was becoming a seveve problem around treatment 30 so if I had had to go for 50, I doubt I could have done it without at least a nasal tube. Why so many treatments? If you really need 50, I'd do whatever the RO suggests as far as feeding tube.
Take care,
Eileen
One would have to assume that with 50 (where did that number come from?) rads, each session would be less than with the normal 35 sessions since they usually deliver the maximum gray units either way. I had 70 and I believe they seldom deliver more than 72 Gy units during the Tx.
Eileen
I freely admit that 5 is a SWAG (military acroynym for Simple Wild Ass Guess that my Dad loved)based entirely on the statement espoused by some old timers in the PEG wars that "only a handful" have done without the PEG. I look at my hand and see only five fingers. Hence 5 Now bear in mind that figures lie, and liars figure. The legal disclaimer to the magical five is that you had both significant radiation and chemotherapy. In my case I had the "maximum" 7200 rads or 72 grays. Yet I am about to go 5 CyberKnife treatments for an hour each: as the release form stated: " I understand that my cancer has previously undergone the masixumum allowed dose of radation... and agree to these CyberKnife retreatments"
I was just so admanant about not getting a PEG even though the doctors were worried about 72 GYs affecting me, that I "cheated" on the weigh ins. Once I lost 40 pounds I was supposed to get a PEG, but I "toughed it out". Now that I have no alternative but the PEG, I see how easy it is and how much easier I could have made it on myself and still swallowed. I am even considering stepping up to the "Mickey" PEG of YouTube fame if I don't relearn swallowing soon.
Eileen, I had surgery 3 times, 2 for quick reoccurence the Dr said, I also had to have mt teeth removed so that I could have radiation and chemo that they were really treating agressivly then after the rads and chemo I had to be put into a coma like state for supposedly 3 days for rad seed implants in my tongue, I was put into isolation for this and thn the 3 days turned into 7 before I woke up again. THey figured I was gonna die. LOL geez, not my turn to leave this world yet. I never had a feeding tube and lost 70 lbs. If I had it to again, you can bet there would be a tube for food somewhee in this body. At Ohio State I did have some type of tube in the side of my neck that hey put some kind of nourishment into. But I refused the tube like a dipshit.Never again tho.
They have lowered the # of treatments to 39. I am going today for #5. Thanks for all of the responses. I am so glad I found this cite!
WFC
I had mine put in two weeks into treatment due to terrible mouth sores, etc. Could not have made it throught without it. "Only" lost 24 lbs. Great way to get nutrients, water, and MEDS down quickly and without discomfort or pain. Best to you.
William 1949,
How much did you weigh at the beginning of treatment? I am 244, so my Rad Dr. said she will watch and wait to see if I need the tube or not depending if I can eat or swallow and depending on how much weight I lose. Believe me, If I start to have any problems eating, or lose too much weight, I WILL have the tube.
WFC
[quote=wfc]William 1949,
Believe me, If I start to have any problems eating, or lose too much weight, I WILL have the tube.
WFC[/quote]
Believe us, you will do both.
WFC:
I can appreciate your reluctance to get a PEG. But consider that you are doing 40 treatments. That's a lot. I also believe that they put the tube in through your mouth, which if constricted, can create some difficulties.
One of the chief difficulties people have with chemo/radiation is dehydration. This can put you in the hospital. Although you may be able to eat, you may not be taking in enough fluids. The PEG will help prevent this problem.
There are more informed people than me on this list, so I will defer to the opinion.
Sandy
WFC, I was 185 pre treatments. I did not go with the tube initially as I wanted to see if I could get through without. As I mentioned, I hit the wall early with bad mouth sores and other problems so I got the PEG immediately so I could make it to the goal line.
Sandy is sure right about dehydration. I ended up back in the hospital for 3 for it. I thought i was drinking a lt of water too. Now I still drink about 7 to 8 bottles of spring water a day.
If I had to do it over again I would definitely get a Port and I would have asked for daily fluids starting in week 4 and continuing until I walked out of the tunnel.
Martin refused the PEG for 4 weeks, but he was getting thinner and thinner, it was painful to see he looked like a grass hopper. He went from 12 stones to 9 stones and measures 6ft 2.(The weight converter told me 12st=168pounds and 9st=126pounds I am not sure this is right it seems a bit small to me.)
On the 5 weeks he gave in to the dietician and me pressuring him. He was so weak from the treatment the PEG was a God send. I was able to work from home almost every day for 2 weeks and I could feed him and make sure he stayed hydrated.
SO if it is offered go for it, it will stop you loosing weight and weakening, and you will be avoiding all sorts of problems.
I have yet to see a compelling argument against having a PEG tube! As far as I can tell, there just isn't one. If you have it and you need it, its there. If you have it and you don't end up needing, you don't have to use it.
I had one, needed it, hardly lost any weight during treatment and didn't have any trouble with staying hydrated or taking meds. I continued sipping water as well as I could during treatment, despite it tasting awful (!) and when my mouth and throat were ready, I switched back over to eating. I admit, that part was hard, and I did lose weight during that transition, but I honestly don't understand what the whole anti-PEG kerfluffle is about.
There seem to be two reasons against having a PEG -- The first is that for some people, feeding tube is a sign of feebleness and neediness and the potential 'PEGee' isn't ready to accept that (I learned that from Charm!); the second is that it is one of the few things in this whole mess that we seem to have a choice about, so some choose to be PEG-less as a form of defiance against the cancer.
Personally, I had no preconceived notions about PEGs, it was recommended that I get one, so I did.
The excuses about loss of swallowing and mouth opening are not valid because one can still do that even with a PEG (Although some of us were not warned about it -- I was given my PEG in a rush and no one really explained it to me). That's one of the prime reasons this forum is so helpful -- We educate each other by sharing our experiences, good and bad.
Interesting, Pete. I actually wasn't given a choice, it was just part of the package. The doctors knew what was going to happen to me, and the PEG was just as much a part of the treatment as painkillers and antiemetics.
I was asked if i wanted a tube and hell, I didn't have a flat tire and didn't know of any other kind of tube. LOL If I would have been told or it explained to me, I would have had one too. But the tires on my car were new and not flat.
Pete,
I was not given an option (thank God).
Keep in mind that a PEG can help prevent many complications and has uses besides nutrition such as hydration, and medication.
Interrupting TX to deal with any of these complications significantly compromises the effectiveness of treatment plan.
We need to start the battle fully equipped to win.
Three years ago (yeah) I was given a choice by Moffitt. My RO really didn't want me to get one but he also said I couldn't afford to loose any weight. He also warned of lifelong swallowing problems that one could have if they did not continue to swallow during Tx. Since I had never had the experience of IMRT I knew I was tough enough to make it through without a PEG. Remember I didn't come to this or any site like this until post Tx so that's why this site is SO SO valuable.
Casual correlation of the postings seems to indicate a definite male bias in "toughing it out" without a PEG. Pete summed it up well: both refusal to be "sick" enough to need a feeding tube and the option to say NO to something that this Cancer "requires"
in the way of treatment. I still am not ready for the PEG despite having one now for two months. It was a source of pride not to "have needed a PEG" as though that somehow made me less of a victim to the cancer. Like David, I did not find OCF until well after treatment, so I did not have the advantage of advice from those who had gone before me. It's sink or swim without a PEG in terms of swallowing, eating, drinking etc and for those of us for whom "sink or swim" was our swimming instruction method, that was just additional nostalgic allure of simpler times and easier problems. So at least I have one less worry during my CyberKnife treatments
charm
My $0.02.... Get the Peg. I am one that is glad I had it, even with all the problems I had with it. If I had to do it again, I would get it again, and BTW I have had no trouble with swallowing post TX.
Atually you reminded me of something, the consultants did tell us that even with the tube, Martin had to attempt to sip water to keep the muscles working, otherwise like any other muscle the would shrink. He only kept the tube for 4 weeks, so didn't get a chance to get used to it I suppose. But did it help!
So, WFC, did you ever get the tube?