I was diagnosed with stage 3 tongue base cancer Feb. 13 and am a total wreck. My surgeon has said from the beginning no chemo just some radiation. The radiologist said he would lose sleep if I did not get radiation but would not lose any if I did not get chemo. The oncologist is pushing for it and I have declined. I would like to know if anyone has got through radiation without a feeding tube.

My husband got through 6 wks of twice daily radiation without a feeding tube, although, I think it depends on how much weight you can afford to lose........Of course, since then he has had radical resection and has a feeding tube since August. It`s actually no big deal, and it`s only temporary. The main thing is to keep you as strong and healthy as possible.

I definitely side with the radiation oncologist. There is no finite way to be sure a few errant, malignant cells aren't still in the area or somewhere in the lymph tissues between the primary tumor and the neck nodes or those on the floor of the mouth. Irradiating this area will insure that any there, are taken care of. I also agree with him about the chemo. For people who have had more advanced cancers, sometimes it is used at the end as a "body wash" to clean up any micro metastasis that may be further away from the site of the original primary tumor. I declined the chemo at the end of my surgery and radiation, I just didn't have the strength to go through it. I do not regret that decision now almost 4 years later. PET scans of my whole body indicate that I am still cancer free in areas that would have bloomed by now if there were cancer there. It looks like OCF should put up a message board regarding feeding tubes. In the big picture of all that is going to be done to you, it is no big deal. It is painless, and if you want to get the optimum nutrition for a rapid recovery and healing, necessary. Once the severe mucositis and the rest kicks in around your mouth and in your throat from the radiation, swallowing anything is going to be tough. Take the easy way out and never look back.

My mother had a tube when she was in for neck resection, but before radiation. There was about a month between neck surgery and beginning of radiation and the tumor on her tongue grew rather quickly. She tried to keep eating normally, but it was difficult and the doctor told her to use the tube because she was tiring herself out trying to eat by mouth. After she began the radiation and chemo he told her she needed to concentrate on getting through the radiation and chemo not on trying to eat by mouth which became quite trying for her with all the side effects. The tube turned out to be a very good thing indeed. She has had to have more surgery and luckily she never had the tube removed after radiation even though initially it was a major goal for her.

My husband Darren has stage 3 base of the tongue cancer. He is now going into his 8th week of radiation treatments. He also has done chemo within this 8 week period. He had a feeding tube put in a week before his treatments and has been very thankful that he did. It is very important that you keep up your nutrition through your treatments.

With the feeding tube in and in place, I stil lost almost 70lbs. during treatment. (chemo and radiation) I really don't know what I would have done without the feeding tube in. It not only helped me with my nutritional needs but it also helped keep me hydrated and out of the hospital. There is no way I could have swallowed the water necessary to keep me hydrated, my mouth was just too sore. The feeding tube is easy to use, easy to hide underneath clothing, and it does not smell. (My biggest fear.) Of all the things that can happened because of a cancer diagnoses, the feeding tube is the easiest thing to endure--comparatively speaking, it really is a "walk in the park." My feeding tube was in place for well over a year with little problem, and it stayed with me until I felt confident that I was getting enough nourishment without the feeding tube.

Hi, This is my first time on the board and so far its been extremely helpful. My sister had radiation treatment for her oral cancer of the tongue. At this moment she has major sores in her throat and can barely eat. They are recommending a feedng tube, she is losing tons of weight and I fear for her lack of nutrition. From what I see on this board it seems that a feeding tube would be very helpful. They say her sores aren't healing because her eating of normal food is irritating the throat over and over again. Can somebody please tell me all about the feeding tube, is it painful, does it help? About sores in the throat area and if they ever get better. Its really painful to see her go through this. Thank you in advance. You are all an inspiration and I wish speedy recoveries and good health for everyone.

I'll start by saying that the tube is probably a good idea. For myself I was totally resistant to the idea because one of my fears was that the cancer was so advanced that I would permanently need the tube (it wasn't and I didn't). In my case inserting the tube was the worst of the procedure. Because of previous stomach surgery and how extraordinarly burnt my throat was from radiation they had to do surgery to put the tube in. It was a big incision and I was in a lot of pain for a couple of days. After I started recovering from the surgery the tube was relatively problem free. I was always in some discomfort at the tube site and others have told me that they have also experienced that. However, the pain was mild and certainly tolerable as opposed to not being able to swallow at all. For me the difficulties were more psychological than physical. I did still lose a lot of weight before, during, and after the tube. The tube does not smell and you can still shower without having to wrap it or cover the site. It's kind of a pain to travel with all the equipment, syringes, bags, pump, food, etc. but I did some sort overnight trips. We did decide to cancel a couple of plane trips right after 9/11 mostly because I was still so weak but I also didn't want to have to deal with explaining all of my paraphernalia to security.

Eli! The feeding tube is no big deal. If you have read my post about this in another section of this forum, you will know I was irrationally afraid of this, and embarrassed when it proved to be a piece of cake. I had an IV started, and when I woke up had a tube. Does NOT hurt. Was a little sore for just a day. Tell your sister that I was the world's greatest doubter, but I have been converted. She needs one.

Eli.... The mucositis will be there from at least the third week of radiation, till perhaps 6-8 weeks after it stops. In most patients it becomes so severe that they cannot eat properly, their mouths are just too sore. This was definitely my case when I went through treatment. The only things that helped at all were a topical anesthetic in solution that I could swish my mouth with to numb things for awhile, and rinsing many times a day with bicarb of soda and salt in warm water. They do go away, but a person can become under nourished if they do not eat properly during this period. The tube is a sure bet. There is more about these sores and other complications in the mouth from treatment on the web site in the dental section, "Dental and oral complications from treatment".

Hi Brian and everyone, thank you for responding.
The thing is my sister had radiation 2 years ago, started to get better and she now has the worst sores down her throat than any of her other sores before this. Its been 3 months and no relief, losing tons of weight and can barely eat. Drugs and even steroids aren't helping at all. I am hoping that with the feeding tube, if she decides to get one, she can give her throat a break to heal because eating must be irritating it even more.

Any suggestions on what the best place to put the feeding tube is? I heard you can choose where to place it on your body? Is this true? Any and all tips will be helpful. Thank you

You will not have a choice. The best place is the shortest distance between the outside wall of your chest, just below the rib cage and the stomach. The shortness of the tube make it hygienic, keeps the procedure to put it in simple and to the point, avoids other structures, nerves, and blood vessels, and can be hidden under your shirt when not actually in use. Be thankful that it is not 7 years ago when feeding tubes were larger and routinely placed through the nose. You would have this three inches of tube hanging out of your nose for months............ The technique has come along way since those days. Just let them do what they are going to do.

Hi Eli.........Brian is right, just let them do what they are going to do. Your sister may be uncomfortable the day of the surgery and possibly a little sore for a day after that. By the second--third day, she'll be just fine. Hopefully she'll begin to feel better once she has some nourshiment and liquids going into her system. I had my feeding tube well over a year with little problem, and I am so glad that I listened to the Doctors when they suggested I have one put in. Even with the feeding tube I had trouble keeping my self hydrated and nourished. I just never felt like eating; I never really felt hungry. But with the tube I could put myself on a schedule and just feed because I had to not because I wanted to. It just made everything so much simplier, and I'm sure I healed quicker because of the nourshiment I was able to get with the feeding tube in place. Good luck to both you and your sister. SIncerely, Donna

Thank you all for your advice on the feeding tube, I am not worried about it if they say I need one. I thought I was going to have my first RAD yesterday, but got 3 x-rays and met some of the people who will be doing the RAD. Today will be the first, and I am very fearful but I"ll have to be strong and hope for the best. I had the radical neck surgery 3/6/02, have the scar and numbness and still find this hard to believe. Can anyone relate? I am very thankful for this forum as I pretty much feel alone. I have a husband and family, but I don't think they can believe it either. Wish me luck. Thanks, Marlene

Marliz (and others) - you asked if anyone could relate. I certainly can and I'm sure there are many others who do also. That is what makes this site so wonderful. There are others out there who have gone through or are going through similar experiences. I now have 2 scars - 2 neck dissections 14 years apart. Both times I was very self conscious about the scar right after the surgery and found various ways to cover it up. Now I'm not so concerned about them. My numbness did get better although I still have some numbness on my face along my jaw line and one side of my neck. Good luck with the radiation.

Hi All,
I recently had a peg tube put in (Dec 15th)and was wondering if anyone had any suggestions of how to support it. Right now, I am still having to use 4X4's and tape because I ended up with an infection. How do you keep it from dangling besides looping it and taping it? My mom suggest a tube top, but I am still in treatment in Chicago. Being winter it would be near impossible to find a tube top in Chicago.
Thanks, Becky

What I did with my first PEG, and will do with the one I'm getting tomorrow, is use a neck lanyard that came with a USB storage device (aka dongle, thumbdrive, etc.). It has a clip so the PEG is easily removed and reattached. Even a string would work without the pain of tape.

My second PEG pointed down and was a problem in this regard.

Becky,

We had wonderful luck with a nice 4 (6 inch even better if you can find it) wide ace bandage...the soft ones with the velcro closure..[b]not[/b] the rubbery self stick ones. They are washable and you will need two or three to have a clean change. Just wrap it around the torso a couple of times and close with the velcro making sure the loop tape is not exposed to the skin.

Bill could not tolerate any kind of tape for more than a day...really made his skin sore and rashy. He could just reach under the ace and bring the tube out when it was feeding time and then tuck it back in afterwards. It stayed in place even during sleep and didn't show thru his shirts.

Hope this helps...Deb

Radiation nursing staff gave us a long length of stretchy netting that could be cut to width needed and put on over head (like a tube top). It also stood up to washing.

Becky,

My surgeon showed me a trick that worked terrifically well for me - she wrapped a piece of fabric tape around the end of the tube, leaving a largish tab. She then stuck a safety pin through the tab which I used to pin the tube to my bra or to my shirt when I wasn't wearing a bra, for example my pajama top.

the stretchy netting is the best cant buy it anywwhere but the radiation techs and nurses at hopital give me lenghts of it cut it at least 12 inch lenghts or it roll up it is really comfortable. It holds up well in the washer and dryer gets a little gray looking but still workss great.

ask the nurses where you get care (where you got the tube). They gave me a special belt thing it hooked into and made it easy and they also gave me a script for a special one i could get and insurance would cover. There are other ways of mickey mousing it to work as well - but I like having things specially made for what I am dealing with, so i am not having to fiddle with stuff LOL ... but these helped me a lot - hope it works for you... the tape makes the skin sore after awhile.

btw: i too got an infection and had to take strong meds for it ... it always had a bit of drainage I had to deal with, which made it where I liked using gauze around it - but it wasn't bad and they said it was quite normal ... so if it continues a bit even after infection is gone, don't be alarmed.

Yeah, the drainage is normal and the gauze pads with the little slits work well to contain the "gunk." Bill never had an infection but I had to help him clean around the tube button next to the hole each day and put a fresh pad around it before wrapping with the ace...the button kept the pad in place. Didn't take long and kept things clean and healthy.

Deb

Becky,

I too used the Ace bandage wrap around method after many problems with skin irritation from tape. That seemed to end up working better than anything else I tried.

Bill D.

Hi, I thought I would post with an update. Richard had the peg tube put in this afternoon and the Dr said everything went fine. He's very sore right now as the pain meds are wearing off. The nurse indicated that he might be sore for a few days, then should be fine.
Tomorrow we have appts with the peg tube nurse, showing us how to use it. After that appt we go to the chemo class for info about the treatments. Radiation begins next Monday along with the first chemo session. Everything has been coordinated quite well. The hardest part of this whole ordeal so far has been dealing with SSA to start getting benefits, but that is finally settled.
We are so ready to begin the treatments and get through this as best we can. If anyone has any feedback about questions to ask or info for us at this point in time please post. Thanks for all your help...Geri

Like many injuries, the second day after the installation will feel the worst (just had my second day; this morning it felt like the 'mule kick', sore and stiff, but this afternoon I'm not even noticing it except when I cough).

Geri,

I had 3 Cis's 2+ years ago but now the trend is to administer it once a week in smaller, less side effect, doses so I would ask about that for sure.

Not sure I asked you before but has his slides been tested for HPV?

Hi, I did ask the MO and one of the chemo nurses about having chemo weekly and they both said that it depends on your individual treatment plan and the amount of radiation. I'm thinking that the 3x schedule is probably their standard treatment for Richard's diagnosis. The RO also said that is what they do. I didn't pursue it and we have been very happy with the quality of care.
Today was the "peg tube tutorial" and the chemo class. I must say that both of us felt lucky to have a positive prognosis compared to the others in the class. We could tell that the other patients were dealing with more devastating outlooks. It's seems crazy to be thankful with this diagnosis, but at least the doctors are optimistic about getting all of Richard's cancer. There are no guarantees about the future, but we have reason to be hopeful at this point in time.
Richard's peg tub was very tight and they loosened it slightly so it wouldn't pull so much. He's still sore, but should be better in a few days. The peg nurse also said that it was best to not use the gauze except for cleaning. She said it was better exposed to the air. That's probably her personal choice.
Well we start everything on Monday, so I plan to pack some yogurt, crackers, and a small amount of oatmeal for lunch. Yum! Please post any info you all can think of. Thanks, Geri

Geri:

Have your husband eat much and as best he can now. Anything he likes and as much as he can. Once treatments start his mouth will change, things wont taste the same and eating becomes difficult. Dont be concerned about weight gain right now. Just make sure he eats everything he likes and craves before eating becomes more of a chore.

Everybody is different and goes thru this in their own way. Im one of the ones who struggled the whole time with eating, its been 1 1/2 yrs since I ate a real meal or even just a hamburger or slice of pizza. Thats why I tell everybody ready to start treatment to eat like crazy.

Best of luck on Monday.

Also tell him to watch out "ringing in his ears" with the Cisplatin and to tell his MO immediately as it can lead to permanent high frequency hearing loss. I know for sure. The "ringing in the ears" to me was really a intermittent high sounding hum which I didn't think was "ringing" so by the time I mentioned it, it was to late for me. Also the people that have rec'd the weekly doses don't seem to have that concern or as much nausea so that's the reasons I mentioned asking for the weekly doses.

Hi, Has anyone had a problem with the peg tube if vomiting occurs due to the treatment? Richard isn't prone to nausea and the anti-nausea drugs are supposed to be really effective, but we were curious about what might happen. Coughing is bad enough and he can't imagine throwing up. I know the peg tube will help with nutrition and fluids, but it is such an odd thing to have in your body. I guess you get used to it after awhile. Thanks, Geri

Vomiting causes the same sort of 'back-up' that coughing does. When I'd feel a cough, or a vomit, coming I'd try to make sure the clamp on my PEG tube was closed tightly. Flushing would often have to occur despite my best efforts.

And to be honest, I never got 100% used to the damn tube, but I sure did appreciate it!

The peg tube wasnt affected at all by my vomiting. With your husband receiving doses like I had, he will feel ok for several days before and if the nausea hits him. Dont be fooled into not taking the anti nasuea meds, once the nasuea starts its nearly impossible to get a handle on it.

Thats one benefit of having the peg tube, taking meds. Check with the doctor about which are ok to go thru the tube. Most of what I had was able to be dissolved in water and put thru the peg tube. You can ask the pharmacist, they also know about that stuff. All I remember is that you cant crush or dissolve time release meds.

Make sure that the tube is flushed daily with water even if not actively using it. The peg tube isnt fun having, but it does serve a very important purpose.

Hi,
I like your ideas, but Pete I'm not sure what you are talking about attaching the peg to. Itself? Could you explain it another way? It takes me a minute or two to catch on sometimes. ha/ha
I like the the other ideas too. I might try to find an ace bandage at kmart tomorrow. It's just that it sounds a little confining, not that tucking it into my pants isn't. lol
Thanks for the ideas.
Love, Becky

Becky,
I would use an elastic bandage, that worked well for me. That way you can tuck the end of the peg out of the way until you need to use it. (it does not snag on stuff that way). If it is too long you can always cut a portion of it off if is is way to long. You probably want to clear this with your physician, also give it some time to get used to it before you do this.
Geri,
Re vomiting, that I avoided although I came very close a couple of times. This always happened a few days after cisplatin treatment and only for about an hour. NOTE: I only had the small dosages, once I was on carboplatin I did not take anything. I would make sure that you load on meds before the cisplatin especially with the much larger dosage.

M

What I had was a lanyard that could go around my neck, with the other end attached to the end of the PEG -- The lanyard has mini-snaps on it so the PEG can be easily separated from the lanyard -- When not in use, the lanyard holds the PEG and keeps it from flopping around.

I could have done the same thing with some string and slip knots -- The point is to keep the PEG available without needing to tape it down.

I keep mine taped down because if it flops around it hurts at the entry site. I remember that one of the instructions that the girl gave me when I had it installed was it did not belong tucked in my panties. LOL She neglected to tell me how to clean it if it got clogged, or not to

I keep mine taped down because if it flops around it hurts at the entry site. I remember that one of the instructions that the girl gave me when I had it installed was it did not belong tucked in my panties. LOL She neglected to tell me how to clean it if it got clogged, or not to soak in a bath tub with water covering it and other important things that have come up. But, I NEVER tuck it in my panties.

If you wear PEG in tub and it opens, the whole tub will drain into you and you won't be able to even stand up! Then you will have no way to get the anti-soap nausea drugs in...

So great to see that your sense of humour is still intact Pete

Pete,

I hope you were kidding with that tub draining into your stomach remark? The picture I imagine right now is not a pretty site....lol

One thing I was always afraid of back when I had a beard was that I might be hungry and eating aggressively and start to swallow the beard, resulting in turning myself inside out!

Luckily, the radiation took care of the beard, so I have one less thing to worry about!

Pete you are too funny!!!!!

Bet you cant wait to get home to the critters.

Not sure if the critters will be glad to see me -- According to neighbor who is checking up on them, they are getting chubby from the yogurt-covered raisin treats she is feeding to them.

One has to have some paranoia in life, where paranoia has the strict definition of fear of a non-existent threat -- I avoided stepping on sidewalk covers of all sorts but later found out that people and animals have been electrocuted by faulty conditions under the covers -- There went a good paranoia!

Pete

Maybe you are just psychic instead of paranoid Although the etymology of paranoia is from para- "beside, beyond" + noos "mind" and reflects the fact that what the paranoid "knows" is beyond regular mental perceptions.

Pete - I hope that your neighbor is not feeding dogs raisins as they are toxic to dogs.

Patty

No dogs involved in this -- I buy the raisins at local store -- Takes a lot of grapes or raisins to poison a dog.

Your critters are going to grow to the size of dogs LOL

Patty....Pete's critters are his pet rats.

Pete, what are their names again? Love the names but cant remember them for anything.

Sadly, when I got home, one of the rats had passed his Use By date, so now there are only three (which is why I wanted a bunch of them) -- RatHuey, RatDewey and RatPhooey!

The drawback to having a bunch of them is that it takes longer to get them hand-tame.

Bet you are glad to be home. Hope you are feeling better everyday. Sorry to hear of your little guys passing.


Love the names

Pete sorry that you lost one of your little friends.

What made you want to have rats for pets??

Are you using a machine for your feeding tube feedings or doing them with the gravity method?? I think that the machine would be useful because I could try yo go all day without stopping to eat.

By the way you are silly about the bath tub - I really did not know not to cover the tube up until I read it here on one of the blogs. I guess swimming is out too. One of the biggest problems that I had with my tube when I first got it was that it would come open and I would get soaked with whatever while I was out trying to get something done or on my way to the doctor or something. Now most of my spills are at home when the big syringe comes out or something.

Patty

My tube (the one I went out of my way to get) has a very positive hose clamp on it to keep from spilling.

The big drawback to having the PEG is that I can't go up to the public pool and swim a little or soak in the hot tub because it is essentially an open sore.

Back in the '90s, I was going to get a guinea pig and was reading around on the internet when I stumbled onto some rat groups -- They are inexpensive and very intelligent, although you just seem to be getting to know them when that Use By date expires (typically, they only live two to three years.

They are very social, so it's better to have more than one, but of course a group won't bond as well as an "only" rat -- The females are always going and doing something, whereas the males are laid back and make good "lap rats". So far, I think my best rat was Ratatouille, who traveled from Florida to Newfoundland to West Coast and is interred in a state park in Alaska!

My daughter sends EMail to me as Daddy Rat!

With the PEG tube, its not a good idea to swim. You will get reverse leakage. I had a wonderful HBO nurse who got me a tiny plastic clamp for my PEG tube. It looks just like one of those metal ones with the adjustable screw on it to move it open and closed. Ask your doctor or nurse, they arent very common so might need to ask around a little to get one. I always use it when I am going places so I dont have any embarrassing leaks. Nothing worse than having the darn thing leak when you are out in public.

Pete you know you will now have a new nickname, Daddy Rat. Didnt you post some pet photos on here a while back?

I did indeed post some photos -- Sometimes it's hard to get them to stand still long enough to get a good one, esp the females.

It was quite comforting to hear rat noises in my room again -- Not enough noise to disturb me, just the normal noises of rats doing rat stuf in the cage in the dark.

I had not thought of the open sore fact with the PEG tube. I just really wanted to soak up to my neck in a hot bath tub after radiation and was doing so about once a week, complete with bubbles, until I read on one of the blogs here not to. I don't know why they did not give me some type of instruction booklet with this thing. I have had quite a few mishaps and questions. Hopefully I can put on some weight now and figure a way to maintain a weight without it. Then I can have it removed. So far I am having Carnation every morning but it is only my first week post radiation.

I do not think that I would consider rat noises in my room to be comforting. But then I was once married to a rat. (sorry)
I have read that they are very intelligent but I did not know that their life expectancy was so short. Is that only in captivity or in general??

Patty

Did you mean the one you were married to????

[quote=Mark]Did you mean the one you were married to???? [/quote]

he will probably live a long and healthy life with my luck.

Trust me! The noises made by the ones with tails are comforting and the noises made by the other kind are not! Life's too short to waste any of it worrying about whether human rats are getting their just desserts here or in the after-life.

Actually I was worried more about the captivity thing.......

My life is so full I have no time to worry daddyrat.

Patty