Newbie - SCC stage 3 tonsil

donfoo

phrannie51 said:

Here is the deal with the PEG

tube.  Yes, there are a few who have made it through treatment without one.....Don did it, Guzzle did it, Skiffin did it and now Grandmudder's husband is doing it.....Those are the four on top of my head who managed it.....the grand majority of us did not.  

Yes....you do have to swallow something anyway....however, six sips of water, or milk per day for the swallower, is nothing compared to thinking you've got to get that whole smoothie down, or that whole 8 onzes of Boost 2 or 3 times a day.  You can call it recreational swallowing....while the tube is where the meals come from .  Getting all the nutrition in you can take will help healing, and will keep you stronger as you go through treatment.  This is one of those "whatever it takes" decisions......  My mouth was tore up from chemo....nothing could pass through it, it was like hamburger.....even bled when I talked.  The only thing I could get down my gullet was L Glutamine mixed with water (even plain water stung like no tomorrow!).  This didn't start till after the first rounds of chemo and rads were over....I was VERY glad to have the tube in place when it was going to be the only delieverer of actual food.

Think it over, really......it makes meal time take on a whole new atmosphere......pour it down, dinner is done.......no apprehension, no putting it off, just pop the top on the can and pour....THEN go take a sip of water!!

p

grrr... lol

ok. not going to fall into the PEG octagon but....

When one starts with a PEG and the swallowing becomes more difficult I suspect most just start popping Ensure cans and sending down the funnel. Once you start it would be very hard to voluntarily go back to the more difficult method of swallowing your food, even if it is all ground up like baby food.

This is really the only stickling point I have about PEG use and that is why not try to swallow as long as you can before waving the flag and calling in the PEG patrol? Again, like you P, being so thin to start, PEG up day one. If you are healthy and have some poundage to feed the beast, why not give it a go? Nobody says swallowing does not reduce potential side effects from lack of swallowing during treatment.

There are not of us in the noPEG club to know but none of us who did not use a PEG have no swallowing related issues. There are members here who are all too familiar with throat and swallow related side effects post tx.

Done. :-)

 

phrannie51

donfoo said:

grrr... lol

ok. not going to fall into the PEG octagon but....

When one starts with a PEG and the swallowing becomes more difficult I suspect most just start popping Ensure cans and sending down the funnel. Once you start it would be very hard to voluntarily go back to the more difficult method of swallowing your food, even if it is all ground up like baby food.

This is really the only stickling point I have about PEG use and that is why not try to swallow as long as you can before waving the flag and calling in the PEG patrol? Again, like you P, being so thin to start, PEG up day one. If you are healthy and have some poundage to feed the beast, why not give it a go? Nobody says swallowing does not reduce potential side effects from lack of swallowing during treatment.

There are not of us in the noPEG club to know but none of us who did not use a PEG have no swallowing related issues. There are members here who are all too familiar with throat and swallow related side effects post tx.

Done. :-)

 

That didn't happen to me, tho....

I had the tube before treatment and didn't use it until radiation was over and I was on 5FU.....I even tried to get the Onc to pull it after rads, and he said to wait till all treatment is over.....and he was right.  No matter how much I wanted to eat normally, there was nothing going down the gullet until one week before the next chemo.....I'd drink my Boost, eat my eggs....the two days after the chemo, I'd be hamburger mouth again.  I never found anything "easy" about the tube.....just necessary.  Within two weeks after the last chemo, I was hammering to get the tube removed because I wasn't using it.....

So far, from all the groups I belong to, I've only found a few people who clung to their feeding tubes.....even when they can swallow, they want to use it.....I don't get it . 

p

CoryDee

hwt said:

Cory

You do have to keep swallowing or can lose the ability. You can survive on Ensure or the like without food. Try soft boiled eggs. You may want to ask about a g-tube vs. a PEG.

I have had both Cisplatin and Erbitux/Taxol. Cisplatin did not cause hair loss but the Erbitux/Taxol did. My guess is that one dose may have caused your hair loss but I don't think it is the Cisplatin.  

 

Feeding tube

Thanks for all the responses and information. I haven't been able to keep anything but water down for the past 3 days and I've lost 15 pounds total. If I lose 10 more I'll be too thin. I had my second Cisplatin treatment on 9/2 and I've had 19 radiation treatments. I've been very nauseous and today is the first day since Tuesday I haven't vomited. My throat is like raw meat as you can imagine. I wish I could force something down but I can't seem to without gagging, it's impossible to swallow a pill. I'm trying to keep a positive attitude but it's becoming hard due to lack of nourishment and fatigue. I'll think about all the suggestions for sure.

phrannie51

CoryDee said:

Feeding tube

Thanks for all the responses and information. I haven't been able to keep anything but water down for the past 3 days and I've lost 15 pounds total. If I lose 10 more I'll be too thin. I had my second Cisplatin treatment on 9/2 and I've had 19 radiation treatments. I've been very nauseous and today is the first day since Tuesday I haven't vomited. My throat is like raw meat as you can imagine. I wish I could force something down but I can't seem to without gagging, it's impossible to swallow a pill. I'm trying to keep a positive attitude but it's becoming hard due to lack of nourishment and fatigue. I'll think about all the suggestions for sure.

Ah....another benefit of having a tube...

most of the meds we have to take, can come in liquid form.....and down the tube they go.....Those that do not come in liquid form can be crushed, mixed with water and put down the tube.  Pill swallowing is very challanging to say the least.

p

CoryDee

debbiejeanne said:

Cory, what is a Stanford

Cory, what is a Stanford suspension?

dj

I believe it contains

Maalox and xylocaine and some other med. It coats the mouth and throat and numbs it for a while. Next refill I'll ask the pharmacist for sure and let you know.

Hondo

CoryDee said:

Feeding tube

Thanks for all the responses and information. I haven't been able to keep anything but water down for the past 3 days and I've lost 15 pounds total. If I lose 10 more I'll be too thin. I had my second Cisplatin treatment on 9/2 and I've had 19 radiation treatments. I've been very nauseous and today is the first day since Tuesday I haven't vomited. My throat is like raw meat as you can imagine. I wish I could force something down but I can't seem to without gagging, it's impossible to swallow a pill. I'm trying to keep a positive attitude but it's becoming hard due to lack of nourishment and fatigue. I'll think about all the suggestions for sure.

Hi CoryDee

 

Let your doctor know what is going on, they can give you some medication to stop the nauseous and stop the vomiting. Also like P just said ask about getting a PEG tube, don’t be afraid I been on one for over 2 years and it has become my best friend. It will help you get through this a lot easier than trying to eat or drink with your mouth.

 

Tim Hondo  

CoryDee

Hondo said:

Hi CoryDee

 

Let your doctor know what is going on, they can give you some medication to stop the nauseous and stop the vomiting. Also like P just said ask about getting a PEG tube, don’t be afraid I been on one for over 2 years and it has become my best friend. It will help you get through this a lot easier than trying to eat or drink with your mouth.

 

Tim Hondo  

I see my doctor tomorrow

I'll discuss the peg with him. I'm so hungry and tired!

donfoo

CoryDee said:

Feeding tube

Thanks for all the responses and information. I haven't been able to keep anything but water down for the past 3 days and I've lost 15 pounds total. If I lose 10 more I'll be too thin. I had my second Cisplatin treatment on 9/2 and I've had 19 radiation treatments. I've been very nauseous and today is the first day since Tuesday I haven't vomited. My throat is like raw meat as you can imagine. I wish I could force something down but I can't seem to without gagging, it's impossible to swallow a pill. I'm trying to keep a positive attitude but it's becoming hard due to lack of nourishment and fatigue. I'll think about all the suggestions for sure.

Nausea

There are many medications to address the nausea. Make sure you talk with your MO more than the RO about this. If you remain unable to keep food down then the PEG is something you will need to try. Some do have stomach issues with food via PEG but it seems that is fixable. Good luck, Don

Laralyn

CoryDee said:

Feeding tube

Thanks for all the responses and information. I haven't been able to keep anything but water down for the past 3 days and I've lost 15 pounds total. If I lose 10 more I'll be too thin. I had my second Cisplatin treatment on 9/2 and I've had 19 radiation treatments. I've been very nauseous and today is the first day since Tuesday I haven't vomited. My throat is like raw meat as you can imagine. I wish I could force something down but I can't seem to without gagging, it's impossible to swallow a pill. I'm trying to keep a positive attitude but it's becoming hard due to lack of nourishment and fatigue. I'll think about all the suggestions for sure.

Hi, CoryDee! If you can keep

Hi, CoryDee! If you can keep any liquids down, there are some high calorie drinks. A PEG can be very helpful (mine was tremendously helpful) but if you don't get one, look into high calorie versions of things like Carnation Breakfast Drink. That way whatever small amount you keep down can do more good.

Is medical marijuana legal where you live? It has helped a lot of people with cancer-related stomach problems, and they have pills and teas so you don't have to smoke.

Hang in there--we all dealt with stuff like this and you can get through it. We're here for you!

CoryDee

Laralyn said:

Hi, CoryDee! If you can keep

Hi, CoryDee! If you can keep any liquids down, there are some high calorie drinks. A PEG can be very helpful (mine was tremendously helpful) but if you don't get one, look into high calorie versions of things like Carnation Breakfast Drink. That way whatever small amount you keep down can do more good.

Is medical marijuana legal where you live? It has helped a lot of people with cancer-related stomach problems, and they have pills and teas so you don't have to smoke.

Hang in there--we all dealt with stuff like this and you can get through it. We're here for you!

I can only keep water down

All the protein drinks are making me nauseous since chemo last week. I am going to try another in a while. I don't want to go the peg route if I can force some down but I don't feel too positive about it.

I wish medical marijuana was legal here but I live in Kansas so I'll probably be long gone before that happens! 

Cory

phrannie51

CoryDee said:

I can only keep water down

All the protein drinks are making me nauseous since chemo last week. I am going to try another in a while. I don't want to go the peg route if I can force some down but I don't feel too positive about it.

I wish medical marijuana was legal here but I live in Kansas so I'll probably be long gone before that happens! 

Cory

Did the Onc ever mention Emend to you

for nausea?  I call it the "big gun"......I had compazine, Zophran, and Ativan for nausea......but they gave me Emend to take for the first 3 days after chemo (along with the other anti-nausea meds).....I was on a regular schedule to take the meds no matter if I felt nauseated or not. 

Ask about Emend, if you aren't taking it now.

p

Skiffin16

donfoo said:

grrr... lol

ok. not going to fall into the PEG octagon but....

When one starts with a PEG and the swallowing becomes more difficult I suspect most just start popping Ensure cans and sending down the funnel. Once you start it would be very hard to voluntarily go back to the more difficult method of swallowing your food, even if it is all ground up like baby food.

This is really the only stickling point I have about PEG use and that is why not try to swallow as long as you can before waving the flag and calling in the PEG patrol? Again, like you P, being so thin to start, PEG up day one. If you are healthy and have some poundage to feed the beast, why not give it a go? Nobody says swallowing does not reduce potential side effects from lack of swallowing during treatment.

There are not of us in the noPEG club to know but none of us who did not use a PEG have no swallowing related issues. There are members here who are all too familiar with throat and swallow related side effects post tx.

Done. :-)

 

PEGLESS...

LOL...