Feeding Tube?

Laralyn

Skiffin16 said:

Side Note on Eating
Just to clarify....about taking in calories.

I didn't actually mean eating solid foods...if you can that's great.

But for me, around week three of rads, I switched to Ensure Plus...at 350 calories per can, 5-6 cans a day would maintain my need.

About the most solid food I consumed during that time was the DelMonte sliced Peaches in Light Syrup sold in the quart jars. I'd eat a few of those during each feeding period..they slid down easy and would still allow the throat muscles to work rather painlessly.

JG

Another vote for the feeding tube
I have a feeding tube, and I'm really glad I do. I'm in the category of "could stand to lose extra pounds." In fact, I'm in the category where doctors have been telling me to lose 100 pounds for about 20 years. In this case, my doctors said, "Heck no!" and my primary oncologist recommended a feeding tube. Here's why I got it, but your mileage may vary and your decision may be different, and for different reasons.

The surgery is very low risk. Mine didn't even involve general anesthesa--just an IV of valium that put me into a light sleep. I actually woke up once during the procedure--that's how light it was. I was in an out of the operating room in 30 minutes, and the total time at the hospital was about 3 hours.

It hurt quite a bit for about a week afterward. I was unlucky with the pain, and mine was a bit more severe. It also got a mild infection and had a little trouble "settling in." Within two weeks, it was largely a non-issue and now it is a complete non-issue. It's just a strange little attachment that quite literally hangs around. :-)

I chose to get the tube because I wanted that safety net. The morbidity stats from the surgery were super low. If I remember correctly, the morbidity increase from losing significant amounts of weight during cancer treatment was higher. Getting it inserted was simple, and getting it removed was even simpler. If I never needed it, I wouldn't use it... but I promised myself I wouldn't hesitate to use it if I did need it.

Then I got a curve ball early in treatment: a bad case of thrush in my throat. It made me choke to swallow almost anything. I could barely get water down without gagging or even vomiting. I lost 7 pounds in one week. Then I came to my senses and started tracking my calories. If I haven't had enough food or water by noon, I ask myself if I can get a whole shake down. If I can, I drink it. If I can't, I use the tube right then and there. I only lost 2 pounds last week, which is in the safe range for weight loss.

From my perspective, the question to ask yourself is: what kind of person are you? Be honest with yourself because you're about to play the side effects lottery. You may be lucky and have an easier time... or you may not. If you don't, and you're in a situation where swallowing causes extreme pain or makes you vomit, are you the kind of person who can power through it, and do it anyway because you have to? And can you do it enough to get 2000 calories a day down your throat?

I actually AM the kind of person who can do that if I have to... but I decided to cut myself some slack and get at least some of the pressure of this treatment off. I'll keep swallowing, but if my throat needs a break from thick shakes, I'll give it that break. It's going through a rough time right now. :-)

I hope that's helpful. Only you can make the right decision for yourself. It may also help to ask close friends and loved ones what they would want you to do. It doesn't mean you have to do it, but having your spouse, for instance, say "I don't want you to have that crutch and I will be here every day, making you swallow," can help steer your choice.

ditto1

Laralyn said:

Another vote for the feeding tube
I have a feeding tube, and I'm really glad I do. I'm in the category of "could stand to lose extra pounds." In fact, I'm in the category where doctors have been telling me to lose 100 pounds for about 20 years. In this case, my doctors said, "Heck no!" and my primary oncologist recommended a feeding tube. Here's why I got it, but your mileage may vary and your decision may be different, and for different reasons.

The surgery is very low risk. Mine didn't even involve general anesthesa--just an IV of valium that put me into a light sleep. I actually woke up once during the procedure--that's how light it was. I was in an out of the operating room in 30 minutes, and the total time at the hospital was about 3 hours.

It hurt quite a bit for about a week afterward. I was unlucky with the pain, and mine was a bit more severe. It also got a mild infection and had a little trouble "settling in." Within two weeks, it was largely a non-issue and now it is a complete non-issue. It's just a strange little attachment that quite literally hangs around. :-)

I chose to get the tube because I wanted that safety net. The morbidity stats from the surgery were super low. If I remember correctly, the morbidity increase from losing significant amounts of weight during cancer treatment was higher. Getting it inserted was simple, and getting it removed was even simpler. If I never needed it, I wouldn't use it... but I promised myself I wouldn't hesitate to use it if I did need it.

Then I got a curve ball early in treatment: a bad case of thrush in my throat. It made me choke to swallow almost anything. I could barely get water down without gagging or even vomiting. I lost 7 pounds in one week. Then I came to my senses and started tracking my calories. If I haven't had enough food or water by noon, I ask myself if I can get a whole shake down. If I can, I drink it. If I can't, I use the tube right then and there. I only lost 2 pounds last week, which is in the safe range for weight loss.

From my perspective, the question to ask yourself is: what kind of person are you? Be honest with yourself because you're about to play the side effects lottery. You may be lucky and have an easier time... or you may not. If you don't, and you're in a situation where swallowing causes extreme pain or makes you vomit, are you the kind of person who can power through it, and do it anyway because you have to? And can you do it enough to get 2000 calories a day down your throat?

I actually AM the kind of person who can do that if I have to... but I decided to cut myself some slack and get at least some of the pressure of this treatment off. I'll keep swallowing, but if my throat needs a break from thick shakes, I'll give it that break. It's going through a rough time right now. :-)

I hope that's helpful. Only you can make the right decision for yourself. It may also help to ask close friends and loved ones what they would want you to do. It doesn't mean you have to do it, but having your spouse, for instance, say "I don't want you to have that crutch and I will be here every day, making you swallow," can help steer your choice.

Thanks Folks
As for the tube, I appreciate responses from both sides. Just shows you folks care. Common sense may say lean towards the tube, especially if your RAD doc wants you to have one. Will let you know. They want to try and reduce the tumor and lymph node so will have 2 chemos before 1st RAD, backwards I guess, but what can I do but follow there lead.
As for smoking, thanks for your responses. Sorry if Im duplicating information.

jtl

phrannie51 said:

LOL John......tube beer would lose something for sure!
Did you have to wait till the beer was flat? I want a rootbeer SO BAD right now...but the fizzy part just stings like no tomorrow....took a sip of the orange soda hubby was drinking and it's too fizzy, too...

Oh well, at least water still tastes like water, and not some of the descriptions I've heard on here......the worst being a boxer's spit bucket......ewwwwwwwwwww...LOL

p

Rootbeer was about the only
Rootbeer was about the only soft drink that I enjoyed as I begin to lose my taste. I could drink it carbonated if I just held it in my mouth for few seconds before swallowing. However, I was also a champion beer chugger at my college fraternity so I had plenty of practice and fizz was not a problem.

When I think back on it the ulcerations on my tongue were more of an issue than the throat irration. Fortunately they only lasted about a monthe or so. Even if it hurts use those throat muscles daily. It really is a use it or lose it proposition. Not that you cannot regain use, but I do know someone who did not, but it will prolong your recover.

John

George_Baltimore

ditto1 said:

Thanks Folks
As for the tube, I appreciate responses from both sides. Just shows you folks care. Common sense may say lean towards the tube, especially if your RAD doc wants you to have one. Will let you know. They want to try and reduce the tumor and lymph node so will have 2 chemos before 1st RAD, backwards I guess, but what can I do but follow there lead.
As for smoking, thanks for your responses. Sorry if Im duplicating information.

one vote for the tube
In January 2004 when I was diagnosed, my medical oncologist wanted me to put in a tube before treatment started. I, being hard-headed decided I could still handle swallowing with no problem. WRONG. During the course of treatment, I went from 220 to 129. I ended up having to have the tube put in. I also ended up being hospitalized for a week due to my run down condition. Needless to say, I am a believer in the tube. I had it taken out in December 2004. Everything was fine for a while. Fast forward to 2007. In August, I voluntarily asked for the tube to be put back because of swallowing problems due to a stricture. I couldn't keep myself hydrated. I still have the tube in now because of surgical problems last year. It's up to you to make a decision for yourself. There are many people on this board who would disagree with me. I just can't help thinking, why not have it in place in case you need it. Think of it as an insurance policy.

Kent Cass

George_Baltimore said:

one vote for the tube
In January 2004 when I was diagnosed, my medical oncologist wanted me to put in a tube before treatment started. I, being hard-headed decided I could still handle swallowing with no problem. WRONG. During the course of treatment, I went from 220 to 129. I ended up having to have the tube put in. I also ended up being hospitalized for a week due to my run down condition. Needless to say, I am a believer in the tube. I had it taken out in December 2004. Everything was fine for a while. Fast forward to 2007. In August, I voluntarily asked for the tube to be put back because of swallowing problems due to a stricture. I couldn't keep myself hydrated. I still have the tube in now because of surgical problems last year. It's up to you to make a decision for yourself. There are many people on this board who would disagree with me. I just can't help thinking, why not have it in place in case you need it. Think of it as an insurance policy.

George
Great to hear your story, and I am not one who disagrees with you. You are an excellent example of what I have pointed-out many times on this forum- what you went thru back in 04 is another proof of a patient suffering a lot more than was necessary by not getting a PEG. Know there have been a number of others, too, who late in tx have to get one, and several of them also were hospitalized for at least a week.

That said, again, the best opinion is the one your C team gives you- they know the specs on your C and the treatment they are gonna put you thru. George was advised to get one, but chose not to. I was not given the option, and have zero regrets for getting one before tx started. We are all different, and with some it is definitely okay to not even consider a PEG if their Dr doesn't think they'll need one. However, as George is further proof of with his testimony- if your C team thinks you need one, or may need one before it's all said and done- then I SUGGEST you do yourself a favor and get a PEG before your treatment starts.

Thanks, George- and hope will remind us all of this, again- at least once/year for the next 10-15 years, minimum! Hope you are doing well, George.

kcass

Greend

Options
When I was treated in 1996 I was not given the option so I went through treatment without a tube. I went from 236 lbs down to around 140. 13 years later I am suffering from the long term after effects and now have a G-peg which I will use until I'm on the other side of dirt. I did not want it but finally had no choice. After it was inserted I still (bullheaded) did not use it for a few months however now it is my only source of nutrition. I too have had all the tests known to mankind at this time and know that you must continue to swallow something or lose the ability. If I had it all to do over again I would have had it in 1996 and if I didn't need to use it then great, just tape it down and press on however if I did need it then it would be there. I personally think it best to have options and would get the tube in preparation for those situations that always seem to arise. Just my two cents worth

shoeloy

No Tube
I did not get the tube either. It was not easy but I made it through by drinking my diet, at the end I had lost 30 lbs. Dr wanted me to get one at the end but I felt it was not a good option for me, wanted to keep swallowing to use the muscles and not create issues after recovery. I think Survivor is right in the fact that the opinions cancel themselves out and you have to do what you feel is right for your situation.

Good Luck.