Feeding Tube?

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ditto1
ditto1 Member Posts: 660
edited May 2012 in Head and Neck Cancer #1
Hey folks, I know we have a super thread on the feeding tube, and I have read it and hundreds of comments on it since being diagnosed. I think the feeding tube may create more of a problem than a solution based on my circumstance its physical. That said I know some Skiffin and others that did not use a feed tube, and some RAD docs not wanting there patient to use a tube. I would appreciate feedback from anyone who chose not to have the feeding tube and made it out the otherside. I will have to make a decision this week. Other than that had to give up 9 teeth yesterday, and off to see the Chemo Doc today. Hope everyone has a good day.
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  • ratface
    ratface Member Posts: 1,337 Member
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    It's our biggest ongoing debate
    Tons of reading on it here, search for threads also. How much do you weigh now?
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I think RF says it all........
    how much weight do you have to spare? I've heard of a few people on here who lost no, or very little weight during treatment, but they are rare.

    I didn't feel I had any choice, I have no weight to spare....I don't know what problem specifically you're speaking of....the big problem I can think of with a feeding tube is dependance on it....with a resulting loss of swallowing ability. That is not going to happen to me, I refuse to be on a tube forever....and will be looking to lose it asap after treatment.

    Wow...9 teeth!! That's a lot at one sitting......Your plan is falling into place, Ditto....you'll be in full fledged treatment very soon.

    p
  • jtl
    jtl Member Posts: 456
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    I am one of those that did
    I am one of those that did not get one and my ENT is very much opposed to them except for life threatening situations. He and another doc did a study during their residency showing the benefits of using swallowing muscles even if it is painful. He is obviously biased, but he has convinced my rad onc as well. I think it comes down to ones general health, weight and the realization that swallowing will be painful but you will have no choice if you want to survive. The pain was less than I had anticipated once I figured out how to use the magic mouthwash, but I could not eat anything that was acidic or high in sodium. If it got to be too much I would have had one put in after I started treatment which I was told was not a problem. I lost 10 lbs, started at 160 and 5'9" so I wasn't over weight to begin with. I am in no position to tell someone else what to do but I was happy with my decision and feel like I recovered pretty quickly. In some cases it may be medically necessary pre-treament so that would be the thing to do. Best wishes.
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    jtl said:

    I am one of those that did
    I am one of those that did not get one and my ENT is very much opposed to them except for life threatening situations. He and another doc did a study during their residency showing the benefits of using swallowing muscles even if it is painful. He is obviously biased, but he has convinced my rad onc as well. I think it comes down to ones general health, weight and the realization that swallowing will be painful but you will have no choice if you want to survive. The pain was less than I had anticipated once I figured out how to use the magic mouthwash, but I could not eat anything that was acidic or high in sodium. If it got to be too much I would have had one put in after I started treatment which I was told was not a problem. I lost 10 lbs, started at 160 and 5'9" so I wasn't over weight to begin with. I am in no position to tell someone else what to do but I was happy with my decision and feel like I recovered pretty quickly. In some cases it may be medically necessary pre-treament so that would be the thing to do. Best wishes.
    John

    I did not have a feeding tube either time
    not even close. It would have been a wasted effort for me. This time I even gained weight while being radiated, though I was on a liquid diet. You will find that the opinions on this just about cancel out.


    Pat
  • aluo1271
    aluo1271 Member Posts: 25
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    Just finished swallow test yesterday
    My doctor sent me to a speech therapist to evaluate if I need a tube. The evaluation was basically to fed me with cookies, drinks etc while taking x-ray on how the food got swallowed. The result was that I don't need one. The doctors assured me they will put one in case I need it.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    aluo1271 said:

    Just finished swallow test yesterday
    My doctor sent me to a speech therapist to evaluate if I need a tube. The evaluation was basically to fed me with cookies, drinks etc while taking x-ray on how the food got swallowed. The result was that I don't need one. The doctors assured me they will put one in case I need it.

    There's a pre-treatment swallow test?
    WOW...nobody even mentioned that to me at all...LOL...I feel left out.

    p
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Ditto
    Not all of us even have the option, based on our C specifics, and what's to be done with tx, so your Dr has the best opinion on whether or not you should get one. Due to what tx and the chemo does to the immune system, etc., the best option is to get one before tx starts, obviously. Worst case is getting one well into tx, in part because it means the patient has already suffered more than they should have to- to go to the extreme of putting one thru a PEG operation when their body is already dealing with all the problems brought on by the chemo and rads. Again, your Dr has the best opinion- just know that if you are gonna get one, it is a lot better to get one before treatment than well into treatment.

    kcass
  • ditto1
    ditto1 Member Posts: 660
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    Kent Cass said:

    Ditto
    Not all of us even have the option, based on our C specifics, and what's to be done with tx, so your Dr has the best opinion on whether or not you should get one. Due to what tx and the chemo does to the immune system, etc., the best option is to get one before tx starts, obviously. Worst case is getting one well into tx, in part because it means the patient has already suffered more than they should have to- to go to the extreme of putting one thru a PEG operation when their body is already dealing with all the problems brought on by the chemo and rads. Again, your Dr has the best opinion- just know that if you are gonna get one, it is a lot better to get one before treatment than well into treatment.

    kcass

    Kinda figured
    My weight is 162 5ft 4inches tall. So likely some to lose, the plan seems to do 2 chemo treatments to reduce tumor size and lymphnode before Radiation. First chemo next week, looks as if I will have about 30 days to decide on tube. Likely will get one, better safe than sorry. Funny my Rad Doc tells me this is curable, the surgeon says the same, ONC doc started at 50/50 since I was a smoker. Funny seems like very little about smokers on this site maybe concerned about the feed back.... They still ran a HPV test waiting on results. I guess if its HPV with smoker jumps to 70%, see what happens.
  • jtl
    jtl Member Posts: 456
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    ditto1 said:

    Kinda figured
    My weight is 162 5ft 4inches tall. So likely some to lose, the plan seems to do 2 chemo treatments to reduce tumor size and lymphnode before Radiation. First chemo next week, looks as if I will have about 30 days to decide on tube. Likely will get one, better safe than sorry. Funny my Rad Doc tells me this is curable, the surgeon says the same, ONC doc started at 50/50 since I was a smoker. Funny seems like very little about smokers on this site maybe concerned about the feed back.... They still ran a HPV test waiting on results. I guess if its HPV with smoker jumps to 70%, see what happens.

    It is a crap shoot and the
    It is a crap shoot and the outcome is dependent on many variables. Too many variables to even consider on an individual basis. I smoked for many years but haven't for many years. Don't worry about it because it just wastes good time in your life. Control what you can (like health going forward) and accept that whatever you did in the past is........well, in the past.

    The tube is personal preference and it never hurts to get one providing you have the will power to keep those swallowing muscles going. I would not do it upfront unless it was medically necessary because I would have been tempted to rely on it instead of eating normally. I still enjoyed a beer or two all through my rt and it would not have tasted the same through a tube :)
    John
  • Ladylacy
    Ladylacy Member Posts: 773 Member
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    jtl said:

    It is a crap shoot and the
    It is a crap shoot and the outcome is dependent on many variables. Too many variables to even consider on an individual basis. I smoked for many years but haven't for many years. Don't worry about it because it just wastes good time in your life. Control what you can (like health going forward) and accept that whatever you did in the past is........well, in the past.

    The tube is personal preference and it never hurts to get one providing you have the will power to keep those swallowing muscles going. I would not do it upfront unless it was medically necessary because I would have been tempted to rely on it instead of eating normally. I still enjoyed a beer or two all through my rt and it would not have tasted the same through a tube :)
    John

    Feeding tube
    My husband had a peg tube inserted before he started 35 radiation treatments in August 2010. Sure am glad he did. By the second week he was using it. He is 6-4 and normal weight is generally around 145-150. The doctors both felt he should have a feeding tube. The feeding tube was removed in May 2011 after a laryngectomy. It was a good thing he had it because the radiation closed off the back of his throat and no one knew it until the operation was underway. We were also told it was much easier to insert before rather than during because the throat swells.

    Now he is undergoing a second round of radiation starting on 5/14 for cancer of the cervical esophagus. 2nd primary. He will have a feeding tube inserted on Thursday. At first they weren't going to but due to his weight and problems with the first round, they felt it would be better.

    If you don't need one, you don't use it. But they will tell you that you have to drink 8 8ounce glasses of water a day to keep hydrated. Hopefully he won't need it and they are very easy to remove. And yes his cancer came from smoking and beer drinking.
  • aluo1271
    aluo1271 Member Posts: 25
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    There's a pre-treatment swallow test?
    WOW...nobody even mentioned that to me at all...LOL...I feel left out.

    p

    phrannie, it's a clinical trial for predicting PEG dependency
    that happens to be going one here. The cookies are tasty :-) Anyway, I would take the tube as you did if I were offered.
  • ditto1
    ditto1 Member Posts: 660
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    Ladylacy said:

    Feeding tube
    My husband had a peg tube inserted before he started 35 radiation treatments in August 2010. Sure am glad he did. By the second week he was using it. He is 6-4 and normal weight is generally around 145-150. The doctors both felt he should have a feeding tube. The feeding tube was removed in May 2011 after a laryngectomy. It was a good thing he had it because the radiation closed off the back of his throat and no one knew it until the operation was underway. We were also told it was much easier to insert before rather than during because the throat swells.

    Now he is undergoing a second round of radiation starting on 5/14 for cancer of the cervical esophagus. 2nd primary. He will have a feeding tube inserted on Thursday. At first they weren't going to but due to his weight and problems with the first round, they felt it would be better.

    If you don't need one, you don't use it. But they will tell you that you have to drink 8 8ounce glasses of water a day to keep hydrated. Hopefully he won't need it and they are very easy to remove. And yes his cancer came from smoking and beer drinking.

    Understood
    Your right, really does not matter how I got here, Im here. As for the feeding tube I know I just have to decide. I think today was just the In Your Face day where weeks of go here, come there CT/PET, up/down finally starts with a Plan and Treatment, should be relieved but I guess it felt more like Hell's Welcoming Party in my mind. Feeling better now than I did a few hours ago, I am so sorry for all who are on this web site, but I am so grateful that you are there to get us thru these days and feelings....
  • jtl
    jtl Member Posts: 456
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    Ladylacy said:

    Feeding tube
    My husband had a peg tube inserted before he started 35 radiation treatments in August 2010. Sure am glad he did. By the second week he was using it. He is 6-4 and normal weight is generally around 145-150. The doctors both felt he should have a feeding tube. The feeding tube was removed in May 2011 after a laryngectomy. It was a good thing he had it because the radiation closed off the back of his throat and no one knew it until the operation was underway. We were also told it was much easier to insert before rather than during because the throat swells.

    Now he is undergoing a second round of radiation starting on 5/14 for cancer of the cervical esophagus. 2nd primary. He will have a feeding tube inserted on Thursday. At first they weren't going to but due to his weight and problems with the first round, they felt it would be better.

    If you don't need one, you don't use it. But they will tell you that you have to drink 8 8ounce glasses of water a day to keep hydrated. Hopefully he won't need it and they are very easy to remove. And yes his cancer came from smoking and beer drinking.

    Wow, 6'4" and 150! That is
    Wow, 6'4" and 150! That is very thin.

    We don't really know what caused our cancers. Genetics play a huge role, not that lifestyle isn't a causative effect.
  • osmotar
    osmotar Member Posts: 1,006
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    Feeding Tube
    D1, I didn't have a PEG, my rad doc was not in favor of it ..HOWEVER..as he said this was not the Jenny Craig weight loss center, while I had some extra weight to lose, he would only allow a 2 no more than 3lb weight loss per week, they prefered 2. One week alone I lost 6lbs and thank goodness my sister was with me to vouch for me that I was eating, the doc wanted me to have 2500-2600 cals per day..way more than what I normally ate..but as he said food is fuel, and would help with retaining muscle mass. As I think I saw someone post here it may depend on your weight going in. I ate whether or not I could taste and used supplemental drinks, protein shakes and vitamin D gummies. Fortunaelty I didn't have mouth or swallowing issues so it was easier for me. All in all I lost 35-40 lbs and have kept it off.

    Linda
  • phrannie51
    phrannie51 Member Posts: 4,716
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    ditto1 said:

    Kinda figured
    My weight is 162 5ft 4inches tall. So likely some to lose, the plan seems to do 2 chemo treatments to reduce tumor size and lymphnode before Radiation. First chemo next week, looks as if I will have about 30 days to decide on tube. Likely will get one, better safe than sorry. Funny my Rad Doc tells me this is curable, the surgeon says the same, ONC doc started at 50/50 since I was a smoker. Funny seems like very little about smokers on this site maybe concerned about the feed back.... They still ran a HPV test waiting on results. I guess if its HPV with smoker jumps to 70%, see what happens.

    I was a smoker, too, Ditto.....
    tho I quit a few years ago....my ENT didn't hand me numbers, but he said I had a great chance of beating this.

    My mom smoked for 47 years, and had throat cancer...and she beat it...just saying...

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    PegLess
    As you mentioned....

    Kent has a good take on it more than likely as best I can tell.

    Myself, I did have the extra weight, but still lost around 45# total without the PEG.... LOL, no where near a crisis weight loss situation, and I have since put that back on.

    As also mentioned, it's not a weight loss plan... If you are even on the light side of your recommended weight going in. You more than likely are going to be well below your recommended weight by the time you are finished.

    As Pat has mentioned, maintaining your calorie intake is key...

    Regardless of what taste you may or may not have, or that you just don't feel like eating....whatever...it doesn't matter. You have to take in the calories, so either suck it up, or get the PEG.

    Everyone is different, has varying pain and mental thresholds...you have to know yourself and your tolerances beforehand...easier said than done as this is a battle that few have experienced before.

    Myself like P51, was not going to lose my ability to swallow...., LOL. I love food way too much for that.

    Again, like Kent mentioned, go with your MD's recommendations, they're the pros. That is what I did, by chance my ENT didn't prescribe one, so I didn't have it. Plain and simple, that's the only reason I didn't have one.

    That worked out fine in my situation, so I'll never advocate mandatory PEG's. It's just a fact, that some get through just fine without...other's would probably die, suffer, or prolong treatment if they didn't have one.

    Best,
    John
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Skiffin16 said:

    PegLess
    As you mentioned....

    Kent has a good take on it more than likely as best I can tell.

    Myself, I did have the extra weight, but still lost around 45# total without the PEG.... LOL, no where near a crisis weight loss situation, and I have since put that back on.

    As also mentioned, it's not a weight loss plan... If you are even on the light side of your recommended weight going in. You more than likely are going to be well below your recommended weight by the time you are finished.

    As Pat has mentioned, maintaining your calorie intake is key...

    Regardless of what taste you may or may not have, or that you just don't feel like eating....whatever...it doesn't matter. You have to take in the calories, so either suck it up, or get the PEG.

    Everyone is different, has varying pain and mental thresholds...you have to know yourself and your tolerances beforehand...easier said than done as this is a battle that few have experienced before.

    Myself like P51, was not going to lose my ability to swallow...., LOL. I love food way too much for that.

    Again, like Kent mentioned, go with your MD's recommendations, they're the pros. That is what I did, by chance my ENT didn't prescribe one, so I didn't have it. Plain and simple, that's the only reason I didn't have one.

    That worked out fine in my situation, so I'll never advocate mandatory PEG's. It's just a fact, that some get through just fine without...other's would probably die, suffer, or prolong treatment if they didn't have one.

    Best,
    John

    I lost 70 lbs!!! 5'11"
    I know you asked for opinions of those who did not have the feeding tube...but I did. My doctors insisted just in case. I'm thankful I had that tube.

    I went in weighing a whopping 321 and came out weighing 250. I'm 3.5 months post treatments and I am going for 210 (which is my ideal weight)...so obviously I don't have to tell any of you how big I was ...

    I tried to eat but week 4 I could not .......just couldn't do it.

    It's your call, just keep in mind food is healing for you while going thru this ...if you end up not being able to eat like me...you will have to have the tube put in when you feel the worst. The docs referred to it as an "insurance policy" .....

    Best to you ...

    Tim

    Oh...to add to that ....I have never had a complication with my tube ....I have it removed in two weeks ...don't use it anymore.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    aluo1271 said:

    phrannie, it's a clinical trial for predicting PEG dependency
    that happens to be going one here. The cookies are tasty :-) Anyway, I would take the tube as you did if I were offered.

    Wow....that is so interesting.....
    a clinical trail on dependency...... an answer to the longest arguement maybe at hand, huh?

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
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    jtl said:

    It is a crap shoot and the
    It is a crap shoot and the outcome is dependent on many variables. Too many variables to even consider on an individual basis. I smoked for many years but haven't for many years. Don't worry about it because it just wastes good time in your life. Control what you can (like health going forward) and accept that whatever you did in the past is........well, in the past.

    The tube is personal preference and it never hurts to get one providing you have the will power to keep those swallowing muscles going. I would not do it upfront unless it was medically necessary because I would have been tempted to rely on it instead of eating normally. I still enjoyed a beer or two all through my rt and it would not have tasted the same through a tube :)
    John

    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Tim6003 said:

    I lost 70 lbs!!! 5'11"
    I know you asked for opinions of those who did not have the feeding tube...but I did. My doctors insisted just in case. I'm thankful I had that tube.

    I went in weighing a whopping 321 and came out weighing 250. I'm 3.5 months post treatments and I am going for 210 (which is my ideal weight)...so obviously I don't have to tell any of you how big I was ...

    I tried to eat but week 4 I could not .......just couldn't do it.

    It's your call, just keep in mind food is healing for you while going thru this ...if you end up not being able to eat like me...you will have to have the tube put in when you feel the worst. The docs referred to it as an "insurance policy" .....

    Best to you ...

    Tim

    Oh...to add to that ....I have never had a complication with my tube ....I have it removed in two weeks ...don't use it anymore.

    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