To tube or not to tube....

Guzzle

Friends, have sailed through dissection and tonsil removal. I meet team next week to discuss treatment and pathology. It looks like 6 weeks RT to start in a month to six weeks. Most people seem to favour a feeding tube. In about 14 and 1/2 stone. I could bulk up to 15 prior to treatment. Any thoughts from experience. My surgeon seems against it but Im hearing various things. That's m

 

 

 

y next battle so any suggestions appreciated.

D Lewis

I got one

I tried to get by without a feeding tube, but it just got too painful to swallow. I wasn't getting enough nutrition and I was becoming dehydrated.  I might have been able to eat if I had increased the pain meds, but I made the choice to get the feeding tube about three weeks into my eight week chemo/radiation regime, and take less pain meds.  Pain meds make me feel ill.  The tube was easy to use, I gained weight immediately, and I felt empowered because I was able to feed myself unassisted.  It's a personal choice as to what method will work best for you.  I never 'lost my swallow' because I kept water and dilute green tea with me always, and sipped constantly.

Deb

D Lewis

D Lewis said:

I got one

I tried to get by without a feeding tube, but it just got too painful to swallow. I wasn't getting enough nutrition and I was becoming dehydrated.  I might have been able to eat if I had increased the pain meds, but I made the choice to get the feeding tube about three weeks into my eight week chemo/radiation regime, and take less pain meds.  Pain meds make me feel ill.  The tube was easy to use, I gained weight immediately, and I felt empowered because I was able to feed myself unassisted.  It's a personal choice as to what method will work best for you.  I never 'lost my swallow' because I kept water and dilute green tea with me always, and sipped constantly.

Deb

Also

There is more than one kind of feeding tube.  I got the PEG, or percutaneous endoscopic gastronomy tube.  It is an outpatient surgical install by a gastroenterologist, and can be easily removed at the doctor's office.  They go in, endoscopically, through your mouth and down your throat to put it in place. When you are done, they just yank it out.

There is also a G-tube, which requires a more extensive surgery to put in place, is held in place by stitches, and has to be surgically removed.  For some surgeons, this is the only type of feeding tube they know.

Deb

KB56

Feeding tube

Guzzle, you will get many opinions on the site for and against a feeding tube.   I had one and don't regret it for a day as I really had trouble swallowing and lost 30 pounds even with the tube (i lost 12 pounds due to the tonsillectomy).   You can eat, hydrate and take your medicine through the tube and being able to hydrate and take your meds through the tube was huge.   It hurt like hell for me to swallow anything so for me it was the right choice.

It's a personal choice but it has to be much easier with the tube.   You will be very glad to get it out but if you need it, and I really did, it was great to have it available.   You sound like you're in pretty good shape with not a lot of extra fat, i was as well, and for me to lose 30 pounds my friends said I looked like I had been in a POW camp.  I am 6'2" and weighed 195 pounds when I started and got down to 165 pounds at my lowest point.

your call to make and you will get many opinions.... Personally, I would go with the tube because you will have just healed from the tonsillectomy and you will start the chemo and radiation so you really never get to fully recover before getting hit again.

Good Luck,

Keith

phrannie51

I had one....

....they put it in before treatment mostly because I didn't have any affordable weight to lose.  I made it through rads without using it, however after rads I had another 3 blasts of chemo......that's where it paid off.....my mouth turned to hamberger, and I couldn't even get plain water down.  As it was I lost 16 lbs.....

It seems a few get by without it.....most end up getting it somewhere down the line.....hydration and nutrition are SO important during treatment, I like having it already in and ready when I finally needed it.

p

Guzzle

phrannie51 said:

I had one....

....they put it in before treatment mostly because I didn't have any affordable weight to lose.  I made it through rads without using it, however after rads I had another 3 blasts of chemo......that's where it paid off.....my mouth turned to hamberger, and I couldn't even get plain water down.  As it was I lost 16 lbs.....

It seems a few get by without it.....most end up getting it somewhere down the line.....hydration and nutrition are SO important during treatment, I like having it already in and ready when I finally needed it.

p

tube

Found very good journal by Don. In only having rads. I was supposed to be going to Edinburgh this weekend but had to cancel. On the upside I may be able to skip over to Monaco weekend before RT starts. Fingers crossed. Your generosity with your advice is really appreciated.

Ladylacy

Tube

When my husband was diagnosed with laryngeal cancer, our doctors wanted a PEG tube just in case.  We were told very easy to install and very easy to remove if not needed.  Thank goodness we went with the feeding tube.  He had no weight whatsoever he could afford to lose and in less than 2 weeks he wasn't able to swallow at all.  Although we had a therapist coming to the house to work with him on swallowing it didn't help.  Found our after radiation and chemo treatment during surgery that his throat was closed off from the radiation.  They had to reconstruct his throat.  But 6 weeks after surgery he was able to eat so the tube was removed in the doctor's office.

Then when he had to undergo a second round of radiation in basically the same spot, at first the new oncologist was going to wait on the feeding tube but after looking at how skinny my husband was, he decided to once again insert the PEG tube.  And yes once again it was needed but thankfully they were able to open his throat without surgery. 

You will find many who made it thru without one and then again many who didn't.  We were told upfront it was easier to insert before radiation started and easy to remove. 

Wishing you the best -- Sharon

Skiffin16

PegLess in Florida

Like mentioned....

You have found one topic that usually gets everyone's attention and thoughts...

You know my history, STGIII SCC Tonsils and a lymphnode. I had a total of sixteen weeks of four types of chemo, seven of which was concurrent with daily RT. I was a very healthy 275# going in, dropped 35# over the course.

But, I had it fairly light with minimal complications...

Around week 3 of RT, and ending around 4 weeks post RT, I decided on Ensure Plus and meds to get me through, along with plenty of water... OH, and also a few sliced peaches because they slid down the throat easy and get my swallow muscles working (which you want to do(..

I chose this route (Ensure Plus) as to me, it had the most bang for the buck (350+ calories versus solid food) for the least amount of pain or discomfort.

I would set up everyting first, a few cans of Ensure, two glasses of water, liquid numbing solution (oxy/hydro),  DelMonte Jarred Peaches in Light Syrup, and a 1/3 glass of water with a crushed Percocet..

I did this a few times each day, trying to get in 2,000 - 3,000 calories.

My MD's weren't concerned with me having a PEG.., probably becasue I didn't look to be malnourished, LOL.

They advised me it was an option if it became needed..., it never was.

But..., If I was prescribed one, I would have had it inserted no questions...

Some on here swear by the PEG and are sure they wouldn't have survived without one..., and that may hold true.

If you have health issues, eating problems already, low pain tolerances, low in weight going in..., a PEG just might make things easier for you, and possibly even necessary for you.

I'm just not one that feels that everyone should mandatorily have a PEG inserted, just incase... It isn't always needed, and many here have proven that.

Again, I'm not advocating going against what your MD's prescribe, they are the professionals.

John

hwt

Skiffin16 said:

PegLess in Florida

Like mentioned....

You have found one topic that usually gets everyone's attention and thoughts...

You know my history, STGIII SCC Tonsils and a lymphnode. I had a total of sixteen weeks of four types of chemo, seven of which was concurrent with daily RT. I was a very healthy 275# going in, dropped 35# over the course.

But, I had it fairly light with minimal complications...

Around week 3 of RT, and ending around 4 weeks post RT, I decided on Ensure Plus and meds to get me through, along with plenty of water... OH, and also a few sliced peaches because they slid down the throat easy and get my swallow muscles working (which you want to do(..

I chose this route (Ensure Plus) as to me, it had the most bang for the buck (350+ calories versus solid food) for the least amount of pain or discomfort.

I would set up everyting first, a few cans of Ensure, two glasses of water, liquid numbing solution (oxy/hydro),  DelMonte Jarred Peaches in Light Syrup, and a 1/3 glass of water with a crushed Percocet..

I did this a few times each day, trying to get in 2,000 - 3,000 calories.

My MD's weren't concerned with me having a PEG.., probably becasue I didn't look to be malnourished, LOL.

They advised me it was an option if it became needed..., it never was.

But..., If I was prescribed one, I would have had it inserted no questions...

Some on here swear by the PEG and are sure they wouldn't have survived without one..., and that may hold true.

If you have health issues, eating problems already, low pain tolerances, low in weight going in..., a PEG just might make things easier for you, and possibly even necessary for you.

I'm just not one that feels that everyone should mandatorily have a PEG inserted, just incase... It isn't always needed, and many here have proven that.

Again, I'm not advocating going against what your MD's prescribe, they are the professionals.

John

G tube

They left mine in following surgery. Even with it, I lost 65 pounds. Always managed to keep swallowing but was happy I had the tube when times got rough. 

lornal

Tube

I didn't have a tube my my cancer treatment in 2007.  I lost 90 pounds (had more than enough to spare).  But I was dehydrated the whole time, and had to go in for fluids towards the end of treatment and the month after.  And, I was always in pain.

Now, moving on to 2013-2014.  I've had difficulty swallowing due to "radiation scar tissue"  (No, it was cancer again, but noone knew).  I was on vicadin a couple times a day for pain.  turns out - I was dehydrated - got a PEG tube at the end of September - and by the following week - I was off pain meds.

Key is to stay hydrated - everything is WORSE if you get hydrated.  So, a PEG is great backup if you are unable to tolerate the pain of swallowing in order to stay hydrated.

(After 2nd cancer was finally diagnosed - and I had surgery - I can now eat again - and my tube is gone - can't talk - but I can eat )

Guzzle

lornal said:

Tube

I didn't have a tube my my cancer treatment in 2007.  I lost 90 pounds (had more than enough to spare).  But I was dehydrated the whole time, and had to go in for fluids towards the end of treatment and the month after.  And, I was always in pain.

Now, moving on to 2013-2014.  I've had difficulty swallowing due to "radiation scar tissue"  (No, it was cancer again, but noone knew).  I was on vicadin a couple times a day for pain.  turns out - I was dehydrated - got a PEG tube at the end of September - and by the following week - I was off pain meds.

Key is to stay hydrated - everything is WORSE if you get hydrated.  So, a PEG is great backup if you are unable to tolerate the pain of swallowing in order to stay hydrated.

(After 2nd cancer was finally diagnosed - and I had surgery - I can now eat again - and my tube is gone - can't talk - but I can eat )

peg

Thanks all. When I get through this Im gonna come over to the states and beers on me!

PJ47

Guzzle said:

peg

Thanks all. When I get through this Im gonna come over to the states and beers on me!

Not a fan of the feeding tube

In my case, it made me loose at least 10 extra pounda after my surgery and had to be done twice as the first one dislodged on it's own.  My tube was painfull the entire time and if I had it to do over I would not have had one.  I was able to swallow at least liquids and pureed soups during radiation so I would suggest "wait and see" and if you need one you can always have it done during the radiation process or even at the end if necessary.

Am guessing they found scc?  Don't drink beer but like a good glass of wine from time to time.

 

Best to you,

PJ

donfoo

ahh... peg again :-)

My favorite topic. lol

Personally I was lucky that my doctors were aligned with the do not peg up front. That is all of them: MO, RO, and ENT. I found it far more empowering to maintain my ability to provide nutrition and liqiuds orally. No lie, it hurt like hell trying to swallow but I did NOT want that thing hanging out of me. And far too many here "forget" various issues related to having the PEG. Yes, none serious or life-threatening but nevertheless it is not an entirely non-event.

I weight to offer up to the PEG gods so no issue losing weight. Each of us has our own circumstance and a PEG may be very smart to do if you are light on weight or otherwise not 100% going in.

Listen to the doctors, ask the smart qestions, and decide what is best for you. Good luck, Don

Guzzle

donfoo said:

ahh... peg again :-)

My favorite topic. lol

Personally I was lucky that my doctors were aligned with the do not peg up front. That is all of them: MO, RO, and ENT. I found it far more empowering to maintain my ability to provide nutrition and liqiuds orally. No lie, it hurt like hell trying to swallow but I did NOT want that thing hanging out of me. And far too many here "forget" various issues related to having the PEG. Yes, none serious or life-threatening but nevertheless it is not an entirely non-event.

I weight to offer up to the PEG gods so no issue losing weight. Each of us has our own circumstance and a PEG may be very smart to do if you are light on weight or otherwise not 100% going in.

Listen to the doctors, ask the smart qestions, and decide what is best for you. Good luck, Don

famous peg

Don,PJ,John,all thanks. My surgeon is not a fan but says the option is there. Not a bad day all told given diagnosis. My boss has been on. If it comes down to it I would get paid for a year whilst in treatment.If I don't make it back by then early pension. I think my critical illness insurance will pay my mortgage off. Shoulder good as new. If it wasn't for staples feel like I could run or cycle. I get out tomorrow. A walk on Crosby beach with the wife. Have a google of Crosby beach "another place". Knowing my family will be secure allows me to focus on the fight. Tube or no tube. There is always someone worse off than yourself.

Guzzle

Guzzle said:

famous peg

Don,PJ,John,all thanks. My surgeon is not a fan but says the option is there. Not a bad day all told given diagnosis. My boss has been on. If it comes down to it I would get paid for a year whilst in treatment.If I don't make it back by then early pension. I think my critical illness insurance will pay my mortgage off. Shoulder good as new. If it wasn't for staples feel like I could run or cycle. I get out tomorrow. A walk on Crosby beach with the wife. Have a google of Crosby beach "another place". Knowing my family will be secure allows me to focus on the fight. Tube or no tube. There is always someone worse off than yourself.

forgot to say

Don your journal on RT was v. Comprehensive. You have a research background?!(

donfoo

Guzzle said:

forgot to say

Don your journal on RT was v. Comprehensive. You have a research background?!(

IT as a background?

Thanks Guzzle,

Being IT my whole career and having survived indicates one has to be a voracious researcher and constantly on the quest for knowledge. I always said if I not running full speed I am going backwards. Recently, a friend told me about his son who is working at Google on the auto drive project. He is not even 30 but made the comment that the "kids" coming out of college had it all over him. Tech is moving at an ever increasing pace.

Here's one that'll have you in stitches. When I was three, my Mom got so frustrated that I was taking all the appliances apart to see how they worked. Only problem was I could never get anything working again. :-)

 

CivilMatt

to PEG or not to PEG

Guzzle,

I had 2 PEGs, one terrible and one great.  I always managed to drink one meal a day and most likely could have managed without a PEG. 

I read the book of “Skiffin” where the hero drinks lots of water every day to maintain his swallowing ability and I did the same. I am still drinking lots of water and I still swallow very well.

There is no doubt that a PEG is a lifesaver for those receiving the worst side effects from rads and chemo, but generally, if you are on top of the (ever changing) situation ,you will most likely have a window of time to decide.

I have not read of anybody (here) dying because they did or did not have a PEG, but I have read about those who required one installed during treatments.  Until you are in it, you are only making (best) estimates on how you will (your body) reacts.

Good luck,

Matt

Guzzle

CivilMatt said:

to PEG or not to PEG

Guzzle,

I had 2 PEGs, one terrible and one great.  I always managed to drink one meal a day and most likely could have managed without a PEG. 

I read the book of “Skiffin” where the hero drinks lots of water every day to maintain his swallowing ability and I did the same. I am still drinking lots of water and I still swallow very well.

There is no doubt that a PEG is a lifesaver for those receiving the worst side effects from rads and chemo, but generally, if you are on top of the (ever changing) situation ,you will most likely have a window of time to decide.

I have not read of anybody (here) dying because they did or did not have a PEG, but I have read about those who required one installed during treatments.  Until you are in it, you are only making (best) estimates on how you will (your body) reacts.

Good luck,

Matt

thanks

more "food for thought" thanks guys. I have a research background but in criminal justice/social science don. So I have read a lot and come to very few conclusions! Which is where tech people are invaluable!

Guzzle

Guzzle said:

thanks

more "food for thought" thanks guys. I have a research background but in criminal justice/social science don. So I have read a lot and come to very few conclusions! Which is where tech people are invaluable!

escape

just waiting to see Physio then away. Back next wed for treatment plan. Dreaded rads.h

Hondo

Hi Guzzle

 

 

Ask yourself why not, I been through radiation twice without a PEG and lost almost 65lbs I went from being 230lbs to right now 143lbs and can’t gain any of it back. I was never offered a PEG by any of my Oncl dr, I look back on it now because now I live on a PEG tube and wonder why they did not saying something about using a PEG tube back then. It would have made going through treatment so much easier.  So ask yourself why not get a PEG.

Just my take because my PEG tube is now my best friend.

 

Hondo

Skiffin16

Matt on Matt...

Matt pretty much "pegged" it....

You can only have so much control on the situation, ultimately your body is in charge.

I've seen small, frail, older ladies sail through with little to no problems, and on the other side, big, burly, young manly man types, buckle.

It's no disrespect to them or any sign of weakness..., it's purely your body in some cases that dictates your need.

 

Some can handle pain more than others, and some simply feel that a PEG is one less thing that they need to deal with... (meaning some don't want one, and some do want one).

Pain, the mind and tolerance are all unique to each of us... Some can handle it, some can't, some don't want to if they can get around it.

In the big picture of treatment, recovery and survival, you do what you have to do to get through... The only right decision is the one you make, can live with, and adjust if you need to.

Each of us here can and should only convey our expereinces, I'm not going to tell anyone yes, you should or should not get a PEG. For some scenarios,as I mentioned already, I can suggest you should talk to your MD's about it.

Your MD's are the best source in most cases through their preference and experiences and knowledge.

~John