Anyone able to avoid PEG and feeding tube?
Brian
Comments
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Brian
There are some, like John and Dr. Mary's husband. But most of us have had the PEGs. None of us wanted them, especially before we got them, but a lot of us are mighty thankful we had a PEG. Really is not that big of a deal, physically. Seems yucky, and all that, but that's life. If you are able to continue ingesting food and drink the regular way, then no need for one. But if you reach the point where you go for much time without because of the inability to drink the high-carb shakes, etc., then you'd be better-off with a PEG. If that happens, you'd be doing yourself a favor by having a PEG.
kcass0 -
Rads and Tubes
Hi, Brian. If there's one thing I have heard many, many people on this site say, it's that every case is unique and there's no guarantee of anything. I don't pretend to know all of the variables involved, but there are many of them. Having said that, I made it through 30 radiation treatments with no feeding tube. I did get a sore throat and swallowing became a little difficult, but really not terribly bad. It did give me anxiety attacks when I felt like I was choking, but Mr. Ativan helped that a lot. My rad doc told me he did not expect me to need a feeding tube because they were hitting just one side of my face and throat and I was pleased to see he was right. Also, I was fortunate enough to get my treatments in a new treatment center with very modern equipment which presumably is a bit more accurate. So, I wish you luck in your treatments and hope everything goes okay.
Roger0 -
Hi BrianKent Cass said:Brian
There are some, like John and Dr. Mary's husband. But most of us have had the PEGs. None of us wanted them, especially before we got them, but a lot of us are mighty thankful we had a PEG. Really is not that big of a deal, physically. Seems yucky, and all that, but that's life. If you are able to continue ingesting food and drink the regular way, then no need for one. But if you reach the point where you go for much time without because of the inability to drink the high-carb shakes, etc., then you'd be better-off with a PEG. If that happens, you'd be doing yourself a favor by having a PEG.
kcass
I did it without the PEG tube, but believe me it was not easy and if I had it to do again the first thing I would get is a PEG tube. To do it all the way through treatment you will need a very very good caretaker who will put up with all the crap that you are going to give them on days that you don’t feel good and don’t want to eat anything.
Hoping you the best my friend
Hondo0 -
"Cruel to be kind"
is what Doug's doctor called it - he feels that going without the PEG preserves swallowing function in the long run. However, he did not predict the bad nausea that the second chemo would cause (nothing touched it) nor Doug's inability to tolerate the pain killers. The latter caused him to lose a few pounds before the 2nd chemo and then the 3 weeks of not eating thereafter was the real whammy - about 35 lbs in about 8 weeks total.
In the beginning, I agreed with his doctor. I was going on a highly over-rated opinion of my ability to get nutritionally-dense food into Doug as well as a (fortunately) justified confidence in his strength and endurance. Not everyone is lucky enough to be healthy enough to get through that, however.
If we hadn't had the severe nausea issue, it would not have been so bad - and the PEG might not have helped him retain weight throughout that anyway. He would have had an easier time eating when he was not barfing, however, and might have gained the weight back with less pain. He's not one to complain, but I think it must have been tough to have so much day-to-day pain.
He got back to "normal" pretty quickly - he was back in goal long before his doctors wanted him there (he was on blood thinners, which they let him stop a month early, as they knew he would not stay off the ice) and he went from barely making it up the stairs to going 60 minutes against ex-NHL guys in about 3 months.
He's traveling for work again right now - if I'm lucky, Kent, he will not see that he was referred to as "Dr Mary's husband". If he does, I suspect I will never hear the end of it. . . .0 -
no PEG
I did not find this site until after treatment. My sister had let me know about someone that my brother-in-law knew needed a PEG during treatment. If was never mentioned by my doctor.
I had an inch of my upper lip removed and then it was sewn back together, had a tooth removed before rad (big ouch). I had thrush 3 times during treatment. I ate what I could and it changed daily, sometimes hourly. My mouth and throat were raw, blistered. I had to sleep in the recliner frequently.
I was able to drink water, kept it by my side always. Ate a lot of cream of wheat, mac and cheese, eggs, pudding, custard. The week that I was at my worst I received an e-mail from my sisters friend--Magic Mineral Broth from Rebecca Katz, it was wonderful. The first thing that I was able to tolerate the smell of cooking (I stayed out of the kitchen during treatment) and it went down like silk. I wish I took in more protein. I lost 20 pounds which is not much compared to others on this site and I needed to loose the weight, just don't recommend the diet! I have been weak and tired but went back to teaching kindergarten in January (surgery Aug. 9, rads until mid Oct. 2010).
Good luck to you, listen to your body, take meds and if you need it get the PEG.0 -
No PEG
But then again, I am a member of the Abi-Normal Clan (of sisters, but that's another story, LOL)...
You are getting near the point of more than likely switching to nearly all liquids, preceeded and followed with pain meds (maybe a few cold sliced peaches in light syrup).
It's not easy, but I never really had a problem or concern. I didn't reject it, just wasn't needed given my weight going in (6'0 and 275)...
I dropped around 40#, but drank my water, Ensures and a few sliced peaches several times a day.
Water tasted like sweat, sweet took forever to come back and some sweet things still haven't. I'm nearly two years post treatment, have 90% of both my taste and saliva back...I'm 57 and on no meds, all blood counts are back normal (other than the thyroid, which is on it's way out...just hasn't gone enough for meds so far)...
But if I needed to have the PEG or the MD's felt I should have, I would have gotten it no questions.
Best,
John0 -
Wouldn't want to
Hey Brian,
I wanted to prior to radiation but 1 week in I was glad I had the PEG. I still kept swallowing water and tea so I didn't lose my ability to swallow and I had mine yanked about a month after treatment ended. Going without it would have been so much unnecessary pain and there was already so much pain. I would advise anyone getting rads to head and neck to just get it. And if you get it; might as well use it. Best part: napping and eating at the same time. Every man's dream come true. Stay strong Brian.
Bob0 -
This is great advice andadventurebob said:Wouldn't want to
Hey Brian,
I wanted to prior to radiation but 1 week in I was glad I had the PEG. I still kept swallowing water and tea so I didn't lose my ability to swallow and I had mine yanked about a month after treatment ended. Going without it would have been so much unnecessary pain and there was already so much pain. I would advise anyone getting rads to head and neck to just get it. And if you get it; might as well use it. Best part: napping and eating at the same time. Every man's dream come true. Stay strong Brian.
Bob
This is great advice and information, I keep searching and finding all kinds of great inspiration and "experience" details. My husband has stage 4 SCC and he wants to avoid the peg as well. He is in week 2 after first round of chemo and his appetite has drastically decreased, I think mostly because everything tastes like metal. I believe in his strength, but I don't want to see him waste away either. He may be getting 1,000 calories in a day right now and I am concerned to say the least. When I bring up the peg he doesn't even want to think about it. I am still having to pretty much stay on top of him about the water, he even went to the hospital this past Sunday, of course they gave him fluids and pain medicine. I know everyone is different with their treatment, but to me the peg seems like the right thing to do and I do hope that he can hold off for a little longer for his sake since he is so against it. Good luck to you!0 -
Not Against ItMisty35 said:This is great advice and
This is great advice and information, I keep searching and finding all kinds of great inspiration and "experience" details. My husband has stage 4 SCC and he wants to avoid the peg as well. He is in week 2 after first round of chemo and his appetite has drastically decreased, I think mostly because everything tastes like metal. I believe in his strength, but I don't want to see him waste away either. He may be getting 1,000 calories in a day right now and I am concerned to say the least. When I bring up the peg he doesn't even want to think about it. I am still having to pretty much stay on top of him about the water, he even went to the hospital this past Sunday, of course they gave him fluids and pain medicine. I know everyone is different with their treatment, but to me the peg seems like the right thing to do and I do hope that he can hold off for a little longer for his sake since he is so against it. Good luck to you!
Just to let everyone know.... I wasn't against it nor did I refuse or avoid it..It just wasn't mentioned to me as a necessity. If it had been siggested or prescribed by my MD's I would have gotten it.
I don't think I'm necessarily tougher than anyone here either. It just wasn't an issue what so ever for me, and the pain wasn't unbearable either (for me).
Hydration is huge for sure....try the Ensure Plus or equivalent as supplement to his solid food intake for now also....it's 350 calories per can.
Best,
John0 -
I didn't get a PEG, theySkiffin16 said:Not Against It
Just to let everyone know.... I wasn't against it nor did I refuse or avoid it..It just wasn't mentioned to me as a necessity. If it had been siggested or prescribed by my MD's I would have gotten it.
I don't think I'm necessarily tougher than anyone here either. It just wasn't an issue what so ever for me, and the pain wasn't unbearable either (for me).
Hydration is huge for sure....try the Ensure Plus or equivalent as supplement to his solid food intake for now also....it's 350 calories per can.
Best,
John
I didn't get a PEG, they wanted to towards then end when it started getting really icky, but I passed, and I made it through. Just my experience, I lost a total of about 30 pounds, but life is good again. You'll get there sweet pea.0 -
No PEG/Feeding Tube here!
Not sure if it was good thing to not have one. I did lose 50 lbs. (205-155) with about a third of that coming post treatment. A stricture has made eating difficult to this day and I have maintained my weight at 165 for the past 8 months. Now 14 months post treatment and life is luckily back to normal except for my swallowing difficulties, lymphedema and continued morning phelgm.
Life is Good!
Hang in there,
Ed0 -
I had one before treatment
I had one before treatment started. The ENT surgeon strongly recommended that I have it done. I am very glad that I did. I lost only 5-10 pounds through treatment.
I'm also glad I had it done before I really needed it. It would have been rough dealing with the soreness and dealing with the effects of radiation and chemo at the same time.
The thing is, you won't know if you are going to need it or not, but if you do need it, you'll wish it had been placed before or early in treatment.0 -
Hi Brian
I just joined the site looking for info on that subject. I'm in week 5 of 7 weeks treatment and opted not to get the tube. It seemed too unnatural for me and I worried about risk of infection etc. My radiation doc said as long as I can take stuff orally, he agreed with my decision as it would keep my throat muscles working correctly with less chance of long term problems in that area. Started at 180 lbs and am now at 165. In the beginning, taste was just "going away" so I still ate regularly. Later, taste changed to none, saliva turned to paste and yet later, taste changed to disgusting with most things I was familiar with, which made me not want to eat or drink. At my lowest point, I felt dizzy when getting up quick and knew I pushed it too far. But that was 2 days ago and it was sort of a kick in the head! I have increased my intake and the weight stabilized over the 2 days and hopefully will increase now. I had to keep looking and trying different things and I found the following to be most tolerable. It seems the plainer the better and nothing too hot either. Light soups like chicken or potato or tomato.. Farina or cream of wheat. Also, strawberry powder in milk to which I sometimes add protein powder. Many people would probably prefer chocolate but strawberry is my preference. I can actually taste that somewhat still. Premixed protein drinks seem to promote more pasty saliva and don't taste good at all to me but I am forcing 1 or 2 a day as they do have the nutritian we need and I stocked up on many of them in the beginning based on a doctor's advise. So a little is pleasant, a little disgusting but I do have high hopes to make it through without the tube. Best of luck in whichever way you decide to go.0 -
Strawberry Ensure Plus & Welcome Brianshorecat99 said:Hi Brian
I just joined the site looking for info on that subject. I'm in week 5 of 7 weeks treatment and opted not to get the tube. It seemed too unnatural for me and I worried about risk of infection etc. My radiation doc said as long as I can take stuff orally, he agreed with my decision as it would keep my throat muscles working correctly with less chance of long term problems in that area. Started at 180 lbs and am now at 165. In the beginning, taste was just "going away" so I still ate regularly. Later, taste changed to none, saliva turned to paste and yet later, taste changed to disgusting with most things I was familiar with, which made me not want to eat or drink. At my lowest point, I felt dizzy when getting up quick and knew I pushed it too far. But that was 2 days ago and it was sort of a kick in the head! I have increased my intake and the weight stabilized over the 2 days and hopefully will increase now. I had to keep looking and trying different things and I found the following to be most tolerable. It seems the plainer the better and nothing too hot either. Light soups like chicken or potato or tomato.. Farina or cream of wheat. Also, strawberry powder in milk to which I sometimes add protein powder. Many people would probably prefer chocolate but strawberry is my preference. I can actually taste that somewhat still. Premixed protein drinks seem to promote more pasty saliva and don't taste good at all to me but I am forcing 1 or 2 a day as they do have the nutritian we need and I stocked up on many of them in the beginning based on a doctor's advise. So a little is pleasant, a little disgusting but I do have high hopes to make it through without the tube. Best of luck in whichever way you decide to go.
That was my nutrition, along with a little sliced peaches in light syrup, and plenty of water...mixed in with a few pain meds, LOL...
Two weeks left with a few more on top of that...you'll make it. I don't think it's really going to get much worse than you are going through now, as long as you keep up and on top of it like you seem to be doing.
John0 -
Welcome Shorecatshorecat99 said:Hi Brian
I just joined the site looking for info on that subject. I'm in week 5 of 7 weeks treatment and opted not to get the tube. It seemed too unnatural for me and I worried about risk of infection etc. My radiation doc said as long as I can take stuff orally, he agreed with my decision as it would keep my throat muscles working correctly with less chance of long term problems in that area. Started at 180 lbs and am now at 165. In the beginning, taste was just "going away" so I still ate regularly. Later, taste changed to none, saliva turned to paste and yet later, taste changed to disgusting with most things I was familiar with, which made me not want to eat or drink. At my lowest point, I felt dizzy when getting up quick and knew I pushed it too far. But that was 2 days ago and it was sort of a kick in the head! I have increased my intake and the weight stabilized over the 2 days and hopefully will increase now. I had to keep looking and trying different things and I found the following to be most tolerable. It seems the plainer the better and nothing too hot either. Light soups like chicken or potato or tomato.. Farina or cream of wheat. Also, strawberry powder in milk to which I sometimes add protein powder. Many people would probably prefer chocolate but strawberry is my preference. I can actually taste that somewhat still. Premixed protein drinks seem to promote more pasty saliva and don't taste good at all to me but I am forcing 1 or 2 a day as they do have the nutritian we need and I stocked up on many of them in the beginning based on a doctor's advise. So a little is pleasant, a little disgusting but I do have high hopes to make it through without the tube. Best of luck in whichever way you decide to go.
Glad you found us. Lots of experience and kindness here. Sounds like you're doing really well. Stick around and let us know how it goes. Keep the calories rolling in.
Bob0 -
Wellcome Brian!adventurebob said:Welcome Shorecat
Glad you found us. Lots of experience and kindness here. Sounds like you're doing really well. Stick around and let us know how it goes. Keep the calories rolling in.
Bob
Sound's like you are handling your calorie intake well! I wish you my best on your treatment & recovery!
Roz0 -
Hi
I have only just been
Hi
I have only just been told im having cisplatin and radiotherapy for scc in nasal cavity and hard palate. I havent been told anything about a peg tube or feeding and suspect this is going to be a problem? Brian did you opt for it and how is the treatment going?
Any tips on coping with the IMRT and chemo would be appreciated
Thanks
Jayne uk0 -
IMRT & ChemoJayneday said:Hi
I have only just been
Hi
I have only just been told im having cisplatin and radiotherapy for scc in nasal cavity and hard palate. I havent been told anything about a peg tube or feeding and suspect this is going to be a problem? Brian did you opt for it and how is the treatment going?
Any tips on coping with the IMRT and chemo would be appreciated
Thanks
Jayne uk
I had Cisplatin, Taxotere and 5FU in three three week sessions (nine weeks) prior to doing the seven weeks of weekly Carboplatin and daily rads (IMRT).
It's tough but doable...if it's similar to the rest of us (or majority). They'll bring you in prior to have a mesh mask made. It's hard plastic and forms very tightly around our face and upper shoulders.
They'll bolt you to the table each rads session which usually lasts around 10 - 15 minutes. I was very apprehensive at first, so they prescribed some Xanax. It took the edge off of the first few sessions. After that I pinched the Xanax in half and by the beginning of the second week and thereafter no longer needed it.
You can usually take a cd or they'll have tunes to help relax you also. I liked this as it gave me a reference point on finishing...3 - 5 songs and it was over.
Like the rest, stay hydrated as mich as possible, and then some more on top of that.
The last 3-4 weeks and the next 3 - 4 weeks after rads are usually the worse as for the effects of the rads.
Best,
John0 -
without the peg
I completed 30 tx of IMRT without a tube. My Rad oncologist said he did not typically use them gor radiation only patients. I finished treatment end of October 2009 - am still doing fine. Used a lot of Boost/yogurt/soy protein shakes for nutrition. Eat normally now, but still have that shake each morning. Good luck on this journey. Dazey0 -
Welcome JaneJayneday said:Hi
I have only just been
Hi
I have only just been told im having cisplatin and radiotherapy for scc in nasal cavity and hard palate. I havent been told anything about a peg tube or feeding and suspect this is going to be a problem? Brian did you opt for it and how is the treatment going?
Any tips on coping with the IMRT and chemo would be appreciated
Thanks
Jayne uk
Glad you found your way here. Lots of experience and sharing. Sorry to read about the cancer. Check out the superthread on the board for tons of useful information and maybe consider creating your own post to introduce yourself to the group and ask for more info. Only a few people will see your question buried here in this post.
I finished up treatment about 3.5 months ago. Lots of Cisplatin and radiation as the PET showed the nasopharyngeal cancer had metastasized to my spine and sternum. I had no huge problems during treatment and have recovered well. I found that adding in a few alternative therapies to my treatment made a huge difference. I practiced yoga almost daily and walked or hiked daily as much as I could without becoming exhausted. I ate organic vegan and made my own organic vegan PEG tube food. I received accupuncture 2-3 times weekly and massage weekly until I had the tube installed. I saw a therapist weekly and also did guided imagery a couple times a month. I consulted with a Chinese Medicine nutritionist and took many supplements and chinese herbs all through treatment and still to this date. I also did daily coffee enemas, took Essiac tea daily and went to a weekly support group. I prayed constantly. Needless to say; I kept myself very busy all through treatment. I had my PEG tube removed about a month after my last treatment and have all my taste buds back and about 50% of my saliva. I feel good and strong. Now. I think the more you can do the better your outcome. The docs only see you for about an hour a day. The other 23 are up to you.
Surround yourself with people that love you. Come to this board often. Ask questions. You'll get through it. Again, welcome.
Bob0
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