Feeding Tubes- Smart, or weak

depressed63

depressed63 said:

I agree. I believe that the
I agree. I believe that the PEG is an essential part of treatment especially if the doctor has insisted that you have it. I need my husband to read these post. I would much rather him have it in case he needs it than to go to the ER for lack of nutrition and dehydration.

Thanks!

GERD
My husband also has GERD. He takes over the counter meds for it. He's allergic to the blue pill and our insurance doesn't cover much of the prescription type because it doesn't come in a generic form. He also has sleep apnea or sleep problems. He actually stops breathing when he stops snoring. He also gets up in the middle of the night drowning on liquids in his lungs. He's not a big guy and I think it has something to do with his tonsils but they didn't say anything about taking his tonsils out. He was suppose to get an EGD done and a PEG put in at the same time. Chemo is suppose to start next week. Since the treatment has changed from radiation 5 days a week and 1 chemo treatment every 21 days to the Induction Chemotherapy only, I'm wondering if he will get the PEG and the concern for his GERD worries me as well as his snoring. I use to complain about his snoring, but he scares me when he stops breathing. I have had to shake him to get him to breath when he stops snoring. It's not like that every night. I'm not sure if stress causes his snoring, GERD or his tonsils.

Kent Cass

depressed63 said:

GERD
My husband also has GERD. He takes over the counter meds for it. He's allergic to the blue pill and our insurance doesn't cover much of the prescription type because it doesn't come in a generic form. He also has sleep apnea or sleep problems. He actually stops breathing when he stops snoring. He also gets up in the middle of the night drowning on liquids in his lungs. He's not a big guy and I think it has something to do with his tonsils but they didn't say anything about taking his tonsils out. He was suppose to get an EGD done and a PEG put in at the same time. Chemo is suppose to start next week. Since the treatment has changed from radiation 5 days a week and 1 chemo treatment every 21 days to the Induction Chemotherapy only, I'm wondering if he will get the PEG and the concern for his GERD worries me as well as his snoring. I use to complain about his snoring, but he scares me when he stops breathing. I have had to shake him to get him to breath when he stops snoring. It's not like that every night. I'm not sure if stress causes his snoring, GERD or his tonsils.

If
his chemo starts next week, and he doesn't have the PEG yet, I venture to say the PEG might not be in the works- though you've said the Dr's have advised for it. Typically, if one does get a PEG, the best scenario is before treatment starts, when the body is not also having to deal with the C&R and all it brings to the patient. Has your husband nixed the Dr's advise to get the PEG?

As for the sleep thing, I don't know all that much about sleep apnea, other than it is disrupted breathing at night. However, it seems most of us have our sleep change when going thru treatment- the time of individual sleeps is typically far less. Know others have spoke of this over the years. For me, I was happy just getting 3-hours uninterrupted sleep at a time. Anything more would result in mucous build-up that caused complications, so 3-hours was good for me. Other times of sleep each day/night was in the downstairs recliner, and more along the lines of naps, which others have also spoken of.

kcass

D Lewis

Kent Cass said:

Hmmmm
Well, I'm not sure about the direction this has headed, but I did ask if Doug's condition had been because of nausea, and I thank you both for answering that. In a way, this is another example of how different we all are. I, too, was also given the Emend before both of my 96-hour Chemo sessions with the two pumps/session, and also think there was another something they did, and was also prescribed Compazine in the two forms. Can honestly say that nausea was not a problem for me, which is the difference between us. Twice I woke in the morning with the heaves after sleeping around 4-hours early in tx, and it was obvious that bad mucous was the cause. Did take the Compazine pills for a couple days, but that was about it for the nausea. Did make adjustments, which likely helped in prevention, but it's hard to say if such was significant.

Another possibility for my lack of nausea, perhaps, is that I was getting all my intake thru the tube. Until now, I hadn't really thought of that. But, from the end of the 1st week to the end of the 8th of tx- all my intake was thru the PEG with Jevity 2.0, except for ice and sipping of water, and chopped-up pills and the liquid Morph. SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY, OR SIMILAR, VIA THE PEG? Again, the only vomits I got was right when I woke-up in the AM in bed. Of course, this is just my experience, but maybe one new truthful advantage to the PEG. Also, and I must stress this, like a lot of us I was spitting frequently, and carried a small bucket with me when I left the house, so I actually got very little substances in the stomach that had come into contact with the treated areas of my mouth and throat. Would be interested in other's experiences along these lines, so:

DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?

Also, since the discussion touched on the cost aspects, my out of pocket for the PORT and PEG placements, two pre-tx biopsies, numerous Dr. visits, and the treatment, came to $1500! I kept the billings itemized on paper for my records, and the actual provider charges came to $178,000, but those providers were content with only getting around 1/3 of that from United Healthcare, which still blows my mind.

And, again, DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?

kcass

Yep - Concurrent Cisplatin Chemo and Rads and Exclusive PEG
I felt quite poorly. I exclusively used the PEG for the last four weeks, and Jevity was the only product I used. I had to resort to using the pump to feed with, and to set the pumping rate very slow, in order to avoid nausea. I would feed roughly three cans during the day, scheduled so that I would never have a full stomach when they bolted me into the mask. Each small can was pumped in slowly, over about 45 minutes. When I went to bed at night, I would plug into a full feeding bag - three or four more cans of Jevity, and set the pump rate so that it fed all night long. The bag-empty alarm would go off at my usual wake up time. I did this for the duration of my chemo/rads. I never got really nauseous, and I didn't vomit. I never felt particularly well, but it could have been a lot worse.
Deb

Skiffin16

Kent Cass said:

Hmmmm
Well, I'm not sure about the direction this has headed, but I did ask if Doug's condition had been because of nausea, and I thank you both for answering that. In a way, this is another example of how different we all are. I, too, was also given the Emend before both of my 96-hour Chemo sessions with the two pumps/session, and also think there was another something they did, and was also prescribed Compazine in the two forms. Can honestly say that nausea was not a problem for me, which is the difference between us. Twice I woke in the morning with the heaves after sleeping around 4-hours early in tx, and it was obvious that bad mucous was the cause. Did take the Compazine pills for a couple days, but that was about it for the nausea. Did make adjustments, which likely helped in prevention, but it's hard to say if such was significant.

Another possibility for my lack of nausea, perhaps, is that I was getting all my intake thru the tube. Until now, I hadn't really thought of that. But, from the end of the 1st week to the end of the 8th of tx- all my intake was thru the PEG with Jevity 2.0, except for ice and sipping of water, and chopped-up pills and the liquid Morph. SO, MIGHT THIS BE A POSSIBLE WAY OF AVOIDING THE VOMITS- JEVITY, OR SIMILAR, VIA THE PEG? Again, the only vomits I got was right when I woke-up in the AM in bed. Of course, this is just my experience, but maybe one new truthful advantage to the PEG. Also, and I must stress this, like a lot of us I was spitting frequently, and carried a small bucket with me when I left the house, so I actually got very little substances in the stomach that had come into contact with the treated areas of my mouth and throat. Would be interested in other's experiences along these lines, so:

DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?

Also, since the discussion touched on the cost aspects, my out of pocket for the PORT and PEG placements, two pre-tx biopsies, numerous Dr. visits, and the treatment, came to $1500! I kept the billings itemized on paper for my records, and the actual provider charges came to $178,000, but those providers were content with only getting around 1/3 of that from United Healthcare, which still blows my mind.

And, again, DID ANYONE ELSE GETTING CONCURRENT CHEMO AND RADS WHO FED EXCLUSIVELY THRU A PEG NOT HAVE NAUSEA ISSUES? AND, IF SO, WHAT LIQUIDS WERE YOU PUTTING IN YOUR PEG?

kcass

United Health Care
Kent, one third must be their standard negotiated cost....they are the gatekeeper for our health care plan.

JG

depressed63

Kent Cass said:

If
his chemo starts next week, and he doesn't have the PEG yet, I venture to say the PEG might not be in the works- though you've said the Dr's have advised for it. Typically, if one does get a PEG, the best scenario is before treatment starts, when the body is not also having to deal with the C&R and all it brings to the patient. Has your husband nixed the Dr's advise to get the PEG?

As for the sleep thing, I don't know all that much about sleep apnea, other than it is disrupted breathing at night. However, it seems most of us have our sleep change when going thru treatment- the time of individual sleeps is typically far less. Know others have spoke of this over the years. For me, I was happy just getting 3-hours uninterrupted sleep at a time. Anything more would result in mucous build-up that caused complications, so 3-hours was good for me. Other times of sleep each day/night was in the downstairs recliner, and more along the lines of naps, which others have also spoken of.

kcass

Thank Kent
I hope my husband follows the doctors advice. The radiation doctor requested it and for some reason I think my husband feels he doesn't need it right away now because he will be treated with the chemo first for five days and not the radiation next week. I sure hope I can convince him to get it before all this starts. Isn't the PEG needed for chemo too even if the radiation treatments don't start right away?

Thanks,

Donna

Kent Cass

D Lewis said:

Yep - Concurrent Cisplatin Chemo and Rads and Exclusive PEG
I felt quite poorly. I exclusively used the PEG for the last four weeks, and Jevity was the only product I used. I had to resort to using the pump to feed with, and to set the pumping rate very slow, in order to avoid nausea. I would feed roughly three cans during the day, scheduled so that I would never have a full stomach when they bolted me into the mask. Each small can was pumped in slowly, over about 45 minutes. When I went to bed at night, I would plug into a full feeding bag - three or four more cans of Jevity, and set the pump rate so that it fed all night long. The bag-empty alarm would go off at my usual wake up time. I did this for the duration of my chemo/rads. I never got really nauseous, and I didn't vomit. I never felt particularly well, but it could have been a lot worse.
Deb

Thanks Deb
So, you and Sweet both avoided further vomit issues by slowing down the feeding, but still getting the feeding. Very interesting.

Perhaps an addition to this developing thing is that in the worst of times, post-chemo, I reduced my amount of 2.0 intake. Didn't slow it down, as I just popped the top off the can and poured it gradually in the PEG, but did not do as many cans as prescribed. Nutritionist advised to use four of the 2.0/day, but there was a stretch of time I was only doing two, in addition to ice and water sipping. Hmmm. Hope some other PEG vets will contribute their experience with the nausea they had (possibly coulda worded that better.)

Thanks, as always, Deb

kcass

Skiffin16

Kent Cass said:

If
his chemo starts next week, and he doesn't have the PEG yet, I venture to say the PEG might not be in the works- though you've said the Dr's have advised for it. Typically, if one does get a PEG, the best scenario is before treatment starts, when the body is not also having to deal with the C&R and all it brings to the patient. Has your husband nixed the Dr's advise to get the PEG?

As for the sleep thing, I don't know all that much about sleep apnea, other than it is disrupted breathing at night. However, it seems most of us have our sleep change when going thru treatment- the time of individual sleeps is typically far less. Know others have spoke of this over the years. For me, I was happy just getting 3-hours uninterrupted sleep at a time. Anything more would result in mucous build-up that caused complications, so 3-hours was good for me. Other times of sleep each day/night was in the downstairs recliner, and more along the lines of naps, which others have also spoken of.

kcass

Two Years Post
And three hours at a time is still pretty much my routine....which is actuallyquite a bit more than it was during treatment....

I still have some dry mouth at night. So between getting a sip of water and the dogs (our two chocloate labs) hearing me. I then have to get up and let them out for a pee and chase any neighbors cats break...LOL..

JG

Kent Cass

Skiffin16 said:

United Health Care
Kent, one third must be their standard negotiated cost....they are the gatekeeper for our health care plan.

JG

UHC
Yep, that's what I figured- but where's the justice? What about those without insurance?

Bought a car recently, and the salesman is a Lung C vet. U of Iowa removed part of his lung, and that was followed by standard C&R. Told me it cost him over $800K, and he's still paying on it. What if he'd had my policy? Woulda cost him $1500, and the Providers woulda been happy with $266K from UHC. Yeah.

Thanks, John

kcass

Kent Cass

depressed63 said:

Thank Kent
I hope my husband follows the doctors advice. The radiation doctor requested it and for some reason I think my husband feels he doesn't need it right away now because he will be treated with the chemo first for five days and not the radiation next week. I sure hope I can convince him to get it before all this starts. Isn't the PEG needed for chemo too even if the radiation treatments don't start right away?

Thanks,

Donna

Maybe
Might be beneficial for the chemo, especially getting started in the feeding routine. Thing is, Donna- the rads are what burns the tissues being treated, and causes the most irritation. If he is just getting the chemo for the first phase of treatment, as John did, then maybe it won't be a larger matter getting a PEG placed. If the Dr has advised to get one, though, and he is going to- sooner the better seems the smartest way. Will be a couple opportunities before the next chemo starts, but right after each chemo is done is not the time to get the PEG placed, as the chemo does hit one, also.

kcass

Skiffin16

depressed63 said:

Thank Kent
I hope my husband follows the doctors advice. The radiation doctor requested it and for some reason I think my husband feels he doesn't need it right away now because he will be treated with the chemo first for five days and not the radiation next week. I sure hope I can convince him to get it before all this starts. Isn't the PEG needed for chemo too even if the radiation treatments don't start right away?

Thanks,

Donna

PEG Debate
It's not always needed...but if the MD's suggest it, it's always a good idea to take their advice.

I didn't have one, and had no issues...BUT, my MD's didn't advise me to get one either....if they would have, I would have had it put in upfront.

LOL, Kent did you just have a feeling I couldn't stand it any longer without posting....

Best,
John

Kent Cass

Skiffin16 said:

Two Years Post
And three hours at a time is still pretty much my routine....which is actuallyquite a bit more than it was during treatment....

I still have some dry mouth at night. So between getting a sip of water and the dogs (our two chocloate labs) hearing me. I then have to get up and let them out for a pee and chase any neighbors cats break...LOL..

JG

Well
I know you got more chemo meds put in you than I did, John, but I got mine in a heavier volume in less time, so perhaps we should compare the C-B ability to remember. You say you didn't have a PEG! I thought you said you...LOL!

This discussion with Donna does touch on a PEG issue- nobody wants one. I, too, initially balked at the notion, but accepted it between my 1st and 2nd Onco visits. Donna, I don't know of any magic words to convince your husband to get it done, other than it's in his best interest if his Dr advises it, and it likely will make a major difference to the positive in getting thru treatment easier. For me and Sweet, Bob and Greg, and a number of others- it ranged anywhere between Very Important, and a Godsend. It's your husband's decision, Donna, and your Rad Dr's advice. If you really want him to get it done, perhaps you could ask the Rad Dr to insist, or explain to your husband in detail why he's advising to get the PEG. Again, the expert who has the one opinion that really counts is the Dr, Donna.

kcass