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We got into another discussion about throat restrictions, healing and feeding tubes. It started because I know a person that got scchn a year before I did and he has not been able to ditch the PEG and also has a trach. My ENT actually saw him in the emergency room because the person has an on-going problem with infections at the stoma site but he is not a regular patient. These problems are the result of scaring and will not likely improve. Throat stretching has only caused more infections. Doc says it can be attributed to a large extent to not using the throat muscles for a long period of time. He claims that based on a paper (not published) that he and another ENT wrote while in residency that lack of use results in less blood supply which in turn causes scaring. I did not realize that. He will do anything to keep his patients off a PEG and will never support getting one in advance of treatment. He is friends with my rad onc and he now says that his patients that are not on a PEG seem to heal better and faster, not exactly a scientific trial but just an observation. I mention this only as fyi for those that feel they can tolerate not getting a PEG but by all means make your own decisions with the advice of your medical team and do not compromise your nutritional needs.
John
Comments
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Makes me wonder about someone like me, tho....
From what I'm reading the Dr.'s don't want to see more than a 2 lb a week weight loss (that is if everything is perfect)...Even tho I've been eating like a pig for the last two weeks, I've only gained two pounds. 7 weeks of rads, at 2 lbs a week would be a 14 lb. weight loss...I'm starting out at 97...a 20 lb weight loss would put me at 77...I think there is a place for PEGS, that's all I'm saying...I have no intention of losing my swallower, or getting hooked on a PEG...but I don't want to fight this battle and end up starving instead...
I haven't had any medical advise on this yet...this is just my own mind poking around in corners.
Congrats on everything looking good! YEAHHHHH!!
p0 -
Hmmm....
LOL, don't get me started....just teasing Keny and Bob.
Even those with a PEG need to try and keep the throat swallowing muscles working by using them occasionally. Not sure why your MD's didn't give you that information up front, but It's well known.
If you don't use the muscles, there is always a possibility to lose the ability to swallow permanently.
That's one reason that even though I didn't have a PEG prescribed, I always had a few sliced peaches in light syrup during all of my Ensure plus feedings. I definitely didn't want to lose the ability to swallow for something that I didn't do.
I love food way too much....
But on that same token, I'm sure that there are some that lost that ability through no cause of their own. I can personally think of at least one friend on here.
I really think the PEG is a facility/MD choice or philosphy.
Though I would hope that common sense would prevail any MD, that if some one is borderline health or weight before treatment, they would prescribe the PEG. Even that doesn't mean that some will still lose a lot more than expected, or have some other complication that might lead to having a PEG inserted during treatment....some, not all.
But I would never suggest for anyone to not get it if prescribed, or just because they don't want one.
Best,
John0 -
97 Poundsphrannie51 said:Makes me wonder about someone like me, tho....
From what I'm reading the Dr.'s don't want to see more than a 2 lb a week weight loss (that is if everything is perfect)...Even tho I've been eating like a pig for the last two weeks, I've only gained two pounds. 7 weeks of rads, at 2 lbs a week would be a 14 lb. weight loss...I'm starting out at 97...a 20 lb weight loss would put me at 77...I think there is a place for PEGS, that's all I'm saying...I have no intention of losing my swallower, or getting hooked on a PEG...but I don't want to fight this battle and end up starving instead...
I haven't had any medical advise on this yet...this is just my own mind poking around in corners.
Congrats on everything looking good! YEAHHHHH!!
p
At 97 pounds, I would seriously question your MD's if they didn't prescribe the PEG...
JG0 -
Weight Lossphrannie51 said:Makes me wonder about someone like me, tho....
From what I'm reading the Dr.'s don't want to see more than a 2 lb a week weight loss (that is if everything is perfect)...Even tho I've been eating like a pig for the last two weeks, I've only gained two pounds. 7 weeks of rads, at 2 lbs a week would be a 14 lb. weight loss...I'm starting out at 97...a 20 lb weight loss would put me at 77...I think there is a place for PEGS, that's all I'm saying...I have no intention of losing my swallower, or getting hooked on a PEG...but I don't want to fight this battle and end up starving instead...
I haven't had any medical advise on this yet...this is just my own mind poking around in corners.
Congrats on everything looking good! YEAHHHHH!!
p
Hi Phrannie,
You are starting what I am finishing. It took six months to get to this point. My surgeries happened around the holidays so my Dr. was kind enough to let me enjoy Christmas dinner and plan for my second surgery after the new year. So there was about a six week delay with me so yours may go faster.
I've been losing weight at about 3lbs per week and my Onc said I might lose 5-10 more after the radiation is done tomorrow. But I had weight to spare and you don't. I knew going in my pot belly would disappear and it has. From the first surgery until now I've lost 22lbs. Not bad really, I'm almost down to my cig smoking weight when I was in my 20's. I'm even 5 pounds less than when I used to run 5 miles a day.
You didn't say how you are trying to put on weight but I would suggest eating a regular meal and top it off with an Ensure Plus with 350 calories. Drink 3 of those a day and you'll add 1,000 more calories to your diet. I haven't been doing that because I wanted to lose these few pounds. If my weight goes down too far I'll do that too.
So try to pack some on before it all starts. It will be very hard to play catch up once you begin the process so do it now while you have some time. 77lbs and you'll blow away!
I'm thinking about you Phrannie and know what lies ahead. You are in my prayers and good thoughts are heading your way. One way or another, it will all be over and you'll be in recovery mode. And recover you will.
Tommy0 -
The point of my originalSkiffin16 said:Hmmm....
LOL, don't get me started....just teasing Keny and Bob.
Even those with a PEG need to try and keep the throat swallowing muscles working by using them occasionally. Not sure why your MD's didn't give you that information up front, but It's well known.
If you don't use the muscles, there is always a possibility to lose the ability to swallow permanently.
That's one reason that even though I didn't have a PEG prescribed, I always had a few sliced peaches in light syrup during all of my Ensure plus feedings. I definitely didn't want to lose the ability to swallow for something that I didn't do.
I love food way too much....
But on that same token, I'm sure that there are some that lost that ability through no cause of their own. I can personally think of at least one friend on here.
I really think the PEG is a facility/MD choice or philosphy.
Though I would hope that common sense would prevail any MD, that if some one is borderline health or weight before treatment, they would prescribe the PEG. Even that doesn't mean that some will still lose a lot more than expected, or have some other complication that might lead to having a PEG inserted during treatment....some, not all.
But I would never suggest for anyone to not get it if prescribed, or just because they don't want one.
Best,
John
The point of my original comment was to inform not to suggest.0 -
I made up a concoction for the mornings....tommyodavey said:Weight Loss
Hi Phrannie,
You are starting what I am finishing. It took six months to get to this point. My surgeries happened around the holidays so my Dr. was kind enough to let me enjoy Christmas dinner and plan for my second surgery after the new year. So there was about a six week delay with me so yours may go faster.
I've been losing weight at about 3lbs per week and my Onc said I might lose 5-10 more after the radiation is done tomorrow. But I had weight to spare and you don't. I knew going in my pot belly would disappear and it has. From the first surgery until now I've lost 22lbs. Not bad really, I'm almost down to my cig smoking weight when I was in my 20's. I'm even 5 pounds less than when I used to run 5 miles a day.
You didn't say how you are trying to put on weight but I would suggest eating a regular meal and top it off with an Ensure Plus with 350 calories. Drink 3 of those a day and you'll add 1,000 more calories to your diet. I haven't been doing that because I wanted to lose these few pounds. If my weight goes down too far I'll do that too.
So try to pack some on before it all starts. It will be very hard to play catch up once you begin the process so do it now while you have some time. 77lbs and you'll blow away!
I'm thinking about you Phrannie and know what lies ahead. You are in my prayers and good thoughts are heading your way. One way or another, it will all be over and you'll be in recovery mode. And recover you will.
Tommy
3 scoops 1000 Mass body builders powder, 1/2 avacodo, 1 banana, 1/2 cup Greek Yogurt, in 16 oz's of Half and Half...there has to have close to 1000 calories in that. On days that I fix breakfast for my man, I'll sit down and eat scrambled eggs with cheese and sausage as I drink my shake. At night when I'm at work I've been eating a big fat cheeseburger, with everything on it. When I get home after work, I eat an icecream cone (or two, if there is room for it)....then I waddle to bed...LOL.
I'm going to run to the store and pick up some E-Plus...I'll use it as my "snack" food...Quick, easy to prepare, and only 8 oz's....since I'm only after calories, I don't care what it tastes like...sounds like an easy way to pack in another 1000.
Thanks Tommy!
p0 -
I am the blender kingphrannie51 said:I made up a concoction for the mornings....
3 scoops 1000 Mass body builders powder, 1/2 avacodo, 1 banana, 1/2 cup Greek Yogurt, in 16 oz's of Half and Half...there has to have close to 1000 calories in that. On days that I fix breakfast for my man, I'll sit down and eat scrambled eggs with cheese and sausage as I drink my shake. At night when I'm at work I've been eating a big fat cheeseburger, with everything on it. When I get home after work, I eat an icecream cone (or two, if there is room for it)....then I waddle to bed...LOL.
I'm going to run to the store and pick up some E-Plus...I'll use it as my "snack" food...Quick, easy to prepare, and only 8 oz's....since I'm only after calories, I don't care what it tastes like...sounds like an easy way to pack in another 1000.
Thanks Tommy!
p
but I got to tell you, avocado was one thing i could not do. It made the drink slimey as heck. Yuck. Now, just about anything else was ok.....0 -
Two Johns...Skiffin16 said:Not You...
I wasn't suggesting that you were suggesting, I was just saying that I wasn't suggesting....LOL
This keeping of the swallowing function was a subject a few times in the past. And it is very important. I was on my PEG intake of Jevity exclusive from the end of week #1 thru to the end of week #8, during treatment, then gradually weened myself off it in the weeks to follow. Thing is, all during treatment I was able to swallow the critically important water and melted ice chips- I swallowed all the chopped-up pills I took, also.
The only real issue I have is with the Dr who is dead-set against PEGs, as that bias may likely compromise the need and care of a few of their patients, at least, over time. I had mine for 15+-months without any infection issues. And, yes, I was told on my very first Onco visit that I had to get a PEG before treatment, which I did, as the worst-case for getting a PEG is during tx when the immune system is struggling, and body is already dealing with a host of issues. That's what, basically, she told me. Nevermind the fact that if one has to get a PEG well into treatment, then they have already suffered more than they would've had to- otherwise they wouldn't be getting one installed.
John, I have no issues with your putting this out there for us. We all know what a hot topic this has been in the past, here, and we don't need to get into that debate again. Quite a few of us swear by the benefits of a PEG, having lived to realize those benefits, and for some of us the PEG was a critical matter of importance. Hope we can just be happy with, now, re-stating the importance of keeping the swallowing function going, and that one has to do daily maintenance to keep it in the Positive; and, that it really is the call of the med team as to whether or not to get one- as they know the specifics of the C the Patient has, and what the C&R treatment they have planned will do to that Patient. I just would hope all Drs keep an open mind about the PEG.
kcass0 -
Well, I thought you wereSkiffin16 said:Not You...
I wasn't suggesting that you were suggesting, I was just saying that I wasn't suggesting....LOL
Well, I thought you were suggesting that I was suggesting when I was not suggesting and you weren't suggesting so was anyone suggesting. Now I forgot where I was going with this.0 -
Excellent Suggestion....jtl said:Well, I thought you were
Well, I thought you were suggesting that I was suggesting when I was not suggesting and you weren't suggesting so was anyone suggesting. Now I forgot where I was going with this.
Are you being suggestive again....LOL.
JG0 -
ThanksSkiffin16 said:Excellent Suggestion....
Are you being suggestive again....LOL.
JG
All this suggesting made me chuckle!
Feeding tube advocate here... it has saved my husband's life.
Carry on with the suggestions!0 -
The final choice is not withKent Cass said:Two Johns...
This keeping of the swallowing function was a subject a few times in the past. And it is very important. I was on my PEG intake of Jevity exclusive from the end of week #1 thru to the end of week #8, during treatment, then gradually weened myself off it in the weeks to follow. Thing is, all during treatment I was able to swallow the critically important water and melted ice chips- I swallowed all the chopped-up pills I took, also.
The only real issue I have is with the Dr who is dead-set against PEGs, as that bias may likely compromise the need and care of a few of their patients, at least, over time. I had mine for 15+-months without any infection issues. And, yes, I was told on my very first Onco visit that I had to get a PEG before treatment, which I did, as the worst-case for getting a PEG is during tx when the immune system is struggling, and body is already dealing with a host of issues. That's what, basically, she told me. Nevermind the fact that if one has to get a PEG well into treatment, then they have already suffered more than they would've had to- otherwise they wouldn't be getting one installed.
John, I have no issues with your putting this out there for us. We all know what a hot topic this has been in the past, here, and we don't need to get into that debate again. Quite a few of us swear by the benefits of a PEG, having lived to realize those benefits, and for some of us the PEG was a critical matter of importance. Hope we can just be happy with, now, re-stating the importance of keeping the swallowing function going, and that one has to do daily maintenance to keep it in the Positive; and, that it really is the call of the med team as to whether or not to get one- as they know the specifics of the C the Patient has, and what the C&R treatment they have planned will do to that Patient. I just would hope all Drs keep an open mind about the PEG.
kcass
The final choice is not with the Drs but with the patient after being told the pros and cons. I cannot envision a doc not providing a PEG if the patient is not getting adequate nourishment but the fact remains that some people will not use their throat muscles if it is painful to do so and instead rely 100% on the PEG. My doc is not dead set against a PEG he simply thinks they are routinely installed without considering the long term consequences of not excercising swallowing muscles. Maybe more patient education and follow-up during treatment would help. I was told that it was not a problem to put one in later if it was necessary so my goal was to avoid it. I also met a person that had so much restriction prior to treatment that he had already lost considerable weight, there was no doubt about him needing a PEG. It sounds like Phrannie needs to seriously consider getting one as well. In any event your decision worked out well for you and that is important.
One of the John's0 -
A suggestion...kimmygarland said:Thanks
All this suggesting made me chuckle!
Feeding tube advocate here... it has saved my husband's life.
Carry on with the suggestions!
I would like to suggest that, uh, uh...huh? Then again, to suggest such a suggestion would clearly be too suggestive...
Jtl/John- I was not given a choice by my Onco. Yes, perhaps I am the exception to the rule, as it seems no others, here, were given the C&R regiment I was. True, I coulda rejected their treatment plan and sought a 2nd opinion, but had no clue on what their plans for me were. "Here it is," was pretty much how it went, and I did as I was told to. Full effects didn't hit me until the afternoon of day #6. A family forum, this is, so I will spare all the details, other than it was not the best of times, and early the next week my Onco took one short peek into my mouth, then started me on the liquid Morph. She knew where it was gonna take me, but didn't realize how fast I'd get there. No complaints, have I, though- just SUGGESTING that in some cases the decision is not up to the Patient.
kcass0 -
LOL toSkiffin16 said:Excellent Suggestion....
Are you being suggestive again....LOL.
JG
both Johns...hahahahaha...
p0 -
Surely you jest.....Kent Cass said:A suggestion...
I would like to suggest that, uh, uh...huh? Then again, to suggest such a suggestion would clearly be too suggestive...
Jtl/John- I was not given a choice by my Onco. Yes, perhaps I am the exception to the rule, as it seems no others, here, were given the C&R regiment I was. True, I coulda rejected their treatment plan and sought a 2nd opinion, but had no clue on what their plans for me were. "Here it is," was pretty much how it went, and I did as I was told to. Full effects didn't hit me until the afternoon of day #6. A family forum, this is, so I will spare all the details, other than it was not the best of times, and early the next week my Onco took one short peek into my mouth, then started me on the liquid Morph. She knew where it was gonna take me, but didn't realize how fast I'd get there. No complaints, have I, though- just SUGGESTING that in some cases the decision is not up to the Patient.
kcass
Oh right, don't call you Shirley....
It was not presented (or suggested) to me as having a choice either. And actually I'm glad, I did whatever my ENT suggested, LOL.
The only decision left up to me was to fight for life, and that I did....kicking and screaming baby, never give up.
I didn't want to make decisions, that's what the MD's get paid the big bucks for, and in my case, I had very good MD's.
JG0
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