stent vs feeding tubes

Daisylin

Lee (stage ivb) has been having increasing difficulty in eating many foods, which has resulted in some weight loss. He's been losing about a pound a day for the last 2-3 weeks. He is finding less and less foods appealing, and often can't swallow and ends up vomiting the whole meal up. We are getting very concerned, to say the least. There are only a handful of things he will eat these days. (soup, cereal, smoothies, tinned fruit and rice)

At our last meeting with the oncologist, I brought up the idea of a j-tube, and he said that Lee did not need one yet. He was eating a bit better at that point, but has since done a nosedive. I would like to broach the topic again, but could use some help from all of you who have more experience in the area. I would like to go in with the guns loaded.

Since he is not a surgical candidate, would either type of feeding tube be appropriate for him? I know that those of you who have faced surgery have had the j-tube, so as not to interfere with the stomach. In the case of a stage ivb, is there a 'best' choice feeding tube for getting nutrition into him?

Also, I know that there are mixed opinions about stent placements..... I'd love to hear the arguments on both sides. He is going to give another round of chemo a try, so perhaps they won't even do a stent, since I think they don't want to do stents if there is a chance of the tumor shrinking. That does seem like the least invasive way to get him eating (hopefully) but I've read a lot of negatives about them. Also, with his food aversion, I don't know if a stent would get him eating anyways. Most of the eating issues seem more psychological. He just has no interest in eating. He tries to force himself, but his portions are so tiny, he's likely not even getting 1,000 calories a day.

Again, I thank you all for taking time to read my post and would greatly appreciate any information and opinions that you may have. I know this subject has come up many times, but please refresh my poor feeble mind.
Thanks,
Chantal

fredswilma

Hi Chantal
I am sorry to
Hi Chantal
I am sorry to hear that Lee's eating has not improved, we too are having a similar discussion with our Oncologist, at the moment Mark(stage ivb) is going through another round of Chemo, and his eating is becoming more and more difficult one day things are OK the next the same foods become an issue. I do not believe this is psychological, from what Mark says it can be both smell and taste that put him off foods and also the length of time it takes to eat, he just ends up not bothering, he won't eat while people are watching so takes himself off so no more nice family dinners. With regards to stents we have decided to leave this as an absolute last option and I think you are right in saying that Chemo should reduce the tumor and therefore a real worry of the stent getting dislodged, and all the problems that that would produce. If Lee is losing weight at that rate I would definately be calling for some sort of feeding tube especially if he is to undergo more Chemo, he will so need the extra calories, also fish oil capsules an absolute must, I don't know what is in them but something that helps deter weight loss. Hoping your oncologist is more open to a feeding tube, will be thinking of your both, just a quick question have you noticed whether Lee has had any problems with depression, I have noticed that Mark is quite down (not surprisingly), if so any ideas?
Again thinking of you.
Ann

Daisylin

fredswilma said:

Hi Chantal
I am sorry to
Hi Chantal
I am sorry to hear that Lee's eating has not improved, we too are having a similar discussion with our Oncologist, at the moment Mark(stage ivb) is going through another round of Chemo, and his eating is becoming more and more difficult one day things are OK the next the same foods become an issue. I do not believe this is psychological, from what Mark says it can be both smell and taste that put him off foods and also the length of time it takes to eat, he just ends up not bothering, he won't eat while people are watching so takes himself off so no more nice family dinners. With regards to stents we have decided to leave this as an absolute last option and I think you are right in saying that Chemo should reduce the tumor and therefore a real worry of the stent getting dislodged, and all the problems that that would produce. If Lee is losing weight at that rate I would definately be calling for some sort of feeding tube especially if he is to undergo more Chemo, he will so need the extra calories, also fish oil capsules an absolute must, I don't know what is in them but something that helps deter weight loss. Hoping your oncologist is more open to a feeding tube, will be thinking of your both, just a quick question have you noticed whether Lee has had any problems with depression, I have noticed that Mark is quite down (not surprisingly), if so any ideas?
Again thinking of you.
Ann

Ann
Thanks Ann, we will have to do something, and soon..... Sometimes smells and textures can be an issue, but mostly it seems that he just plain and simple does not want to eat. He has also taken to eating on his own, for a time he thought that reading while eating helped him to not think of the food. Soon as he thinks of the fact that he's eating, he just gets turned off, and just like that, the meal's over. Now, reading helps a bit, but not enough.

Thanks for the advice on the fish oil capsules, he was taking them for a while, but they seem to have gotten forgotten about..... time to pull them to the front of the medicine shelf.

As far as depression, I think that in the last few weeks, he has definitely been very down, negative, sad and feels that life is not worth living. He just has not had any energy to do anything. I'm sure that not eating has a huge role in his lethargy. We are both very gloomy, and can't seem to bring each other up out of the dumps. All he wants to do is sleep, and I've been not much perkier. I'm sure depression is very common in cases such as our husband's. Sorry, no ideas on how to get over that one..... how could they not be depressed? How could we not be depressed????
Thinking of you too, be well,
Chantal

sammy123

def get a feeding tube.
def get a feeding tube. Push hard for it, chemo not only depletes the appetite but also dehydrates one and FAST!!! Insist he grant your husband a surgical consult. he could have a g-tube or j-tube placed for hard to swallow meds, extra fluids, supplemental calories or even not use it. I insisted placement for my husband, I vote for the same for you and hubby HUGE stress reducer! Good Luck!

sangora

sammy123 said:

def get a feeding tube.
def get a feeding tube. Push hard for it, chemo not only depletes the appetite but also dehydrates one and FAST!!! Insist he grant your husband a surgical consult. he could have a g-tube or j-tube placed for hard to swallow meds, extra fluids, supplemental calories or even not use it. I insisted placement for my husband, I vote for the same for you and hubby HUGE stress reducer! Good Luck!

PEG Tube
Chantal, I have a PEG tube that has been in since the very beginning, now 16 months. It is less prone to getting clogged than a j-tube which is smaller in diamater. During the nearly 9 months I was able to eat normally, I just flushed it twice a day and did not use it. Unfortunately, I have hit a rough spot am now back using it full time. Mine is inserted in the upper portion of my tummy. I have had no problem with it coming out as it has a bumper on the inside of my stomach that keeps it in place. These are placed on an outpatient basis. I went in, had it placed and was out of the hospital in under 4 hours. Started using it the next day. My formula is supplied in a can and I gravity feed. Takes about 5-7 minutes to do a meal. During radiation I did not have to worry about my esophagus getting sore because the Peg bypassed all that area. The PEG has been around for umpteen years and is really easy. I would suggest talking to your doc about the PEG. My weight is remaning stable. When I can't swallow the pills, we just crush them up in a little water and pour them down the plunger. Sam

paul61

I had no issues with a j-tube
Chantal,

I can certainly identify with Lee's eating difficulties. When I was doing my post surgery chemotherapy eating was the last thing I wanted to do. Most food smells made me ill and when I did eat it seemed like it took me forever to get a small portion of food down. I had to force myself to swallow each bite. It also did not help; that if I ate with other people, they were all done and I still had half of my portion left on my plate. Of course my wife was concerned about how little I was eating and kept encouraging me to eat more (she called it encouragement / I called it nagging )

It is easy to become depressed in that situation because it seems like nothing is enjoyable anymore.

I had a j-tube placed after surgery and other than the time it takes to complete the feeding; (I used to get hooked up when I went to bed at night and the pump ran all night and until about 9 O'clock the next morning), it was relatively trouble free. As other people have mentioned, it can also be used to provide hydration and medications if swallowing really becomes an issue.

I have no personal experience with stents, but from reading posts here over the last year or so they seem to be prone to many unpleasant complications like moving, becoming embedded in the esophagus, and pain.

I would suggest you revisit the topic of a j-tube with your oncologist again. It would take a lot of pressure of Lee in terms of anxiety about eating.

I will be praying things improve for you both,

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

nancyann3

Jtube is the way to go
Steve has had the Jtube for a year now. It bypasses the stomach incase of nausea from treatments. It can become your best friend as caregiver. Lack of calories and hydration just makes all the other problems that go along with this beast, even worse.

Anything that is liquid can go in the jtube. I have even crushed meds and put in Steve's. I have used a syringe to slowly feed and we also have a pump that we use at nite. Steve also had three stents before his surgery. Yes, they did move and cause problems, but they also gave him the ability to eat when he wanted to. They wont, however, give him a appetite. I always say, if I knew then what I know now, I would have pushed for the jtube at diagnoses. Waiting until the patient is in a weakened condition just makes things harder. Staying ahead of the game with this cancer is important. Without nutrition and hydration the downward spiral happens fast.

I am now a stage 4 caregiver also and we still use the jtube everyday. It helps him in many ways. We know the cancer will win someday, but he will be fed and hydrated to the end.

Of course this is all just my opinion and experience from being a caregiver.

Take care
Nancy

cher76

Daisylin said:

Ann
Thanks Ann, we will have to do something, and soon..... Sometimes smells and textures can be an issue, but mostly it seems that he just plain and simple does not want to eat. He has also taken to eating on his own, for a time he thought that reading while eating helped him to not think of the food. Soon as he thinks of the fact that he's eating, he just gets turned off, and just like that, the meal's over. Now, reading helps a bit, but not enough.

Thanks for the advice on the fish oil capsules, he was taking them for a while, but they seem to have gotten forgotten about..... time to pull them to the front of the medicine shelf.

As far as depression, I think that in the last few weeks, he has definitely been very down, negative, sad and feels that life is not worth living. He just has not had any energy to do anything. I'm sure that not eating has a huge role in his lethargy. We are both very gloomy, and can't seem to bring each other up out of the dumps. All he wants to do is sleep, and I've been not much perkier. I'm sure depression is very common in cases such as our husband's. Sorry, no ideas on how to get over that one..... how could they not be depressed? How could we not be depressed????
Thinking of you too, be well,
Chantal

I need some info on fish
I need some info on fish oil. Can the capsules be poked and the oil put into food? He is afraid to take any capsules by mouth for fear of them getting stuck. Also what kind did you buy? I think Sherri made a comment one time about getting good quality fish oil, but I am not at all familiar with it so would not know what is and isn't "good quality"! Thanks,
Cheryl
Wife of Rickie, stage IV EC

Tina Blondek

Feeding Tube/Stent
Hey Chantal
Thanks for your recent update. I have to agree with Sammy and Paul. You have to get real firm with his drs. Make them give him a feeding tube. My dad had ec and passed in March 2010, but he did get a stent put in his esophagus, and did quite well with it. You and Lee know what you are going through, you have to live it every day, the drs. don't. Push, push, push, and push some more. That also stands for Pray Until Something Happens by the way! If Lee's drs. don't agree...go get another opinion fast. Best of luck. Keep in touch, we will be thinking and praying for all of you.
Tina in Va

jojoshort

Hi Chantal
Stage IVb is a tough one. We are living it here. Steve had a stent placed on June 22 and it allowed him to eat and drink normally again. Minor discomforts the first 2 days.
BUT, that said, he was DONE with chemo, so his tumor wasn't going to shrink and allow the stent to migrate to the stomach.
We were hesitant to get a stent. We did our homework, and we opted for one of the best docs in this neck of the woods (Mass. General Hospital, one of the best in the world, and he is also an instructor at Harvard). He did the job well. Steve went from not being able to swallow his own saliva to eating and drinking again, so long as he wasn't eating steaks or anything too big. It does come with some caveats, though. Small bite, well chewed and well cut up, washed down with plenty of fluids.
He didn't want a feeding tube. He and his doc were not in favor of it for terminal patients. He is in Hospice House now, the cancer spreading in his lungs making his breathing the paramount issue, but he can enjoy his morning coffee, his mac n cheese, and other small pleasures. Since quitting chemo in mid-May, his taste has improved, slowly, so that food is not only tolerable, but sometimes even enjoyable again. AND, he can swallow his own saliva, which may be something you wish to consider.
Tough choices; do your homework and realize we're all only human.

Jo-Ann

cher76

Daisylin said:

Ann
Thanks Ann, we will have to do something, and soon..... Sometimes smells and textures can be an issue, but mostly it seems that he just plain and simple does not want to eat. He has also taken to eating on his own, for a time he thought that reading while eating helped him to not think of the food. Soon as he thinks of the fact that he's eating, he just gets turned off, and just like that, the meal's over. Now, reading helps a bit, but not enough.

Thanks for the advice on the fish oil capsules, he was taking them for a while, but they seem to have gotten forgotten about..... time to pull them to the front of the medicine shelf.

As far as depression, I think that in the last few weeks, he has definitely been very down, negative, sad and feels that life is not worth living. He just has not had any energy to do anything. I'm sure that not eating has a huge role in his lethargy. We are both very gloomy, and can't seem to bring each other up out of the dumps. All he wants to do is sleep, and I've been not much perkier. I'm sure depression is very common in cases such as our husband's. Sorry, no ideas on how to get over that one..... how could they not be depressed? How could we not be depressed????
Thinking of you too, be well,
Chantal

The Gremlins have attacked again!
Hi, Chantal
Last night I wrote a long post and then forgot to copy before I posted and now I see that it never made it here. I have decided that maybe the Gremlins have need of this information as well. They surely have volumes of it stored somewhere.

I understand completely about the food situation. It hangs over us always. Many a meal I have sat and finished by myself after he could not get it to go down. Then he moves into the den to sit in his recliner. It makes me feel guilty eating. Food was such an important part of our lives; Rickie loved to cook and enjoy a good meal. Now that is all gone. It was nothing for us to eat out 5 or 6 times a week, in fact once during a particularly busy year of our lives, we joked that we had not cooked at home in two straight months. I have now learned it's amazing how much money you save when you eat at home! The problem now though is some days when we go up to our furniture store to work we find it hard to pack things for him to eat while there and its hard to find restaurants that he can eat at. So that's when he really hits the ensure.
We had a similar situation with our doctor at MDAnderson not wanting to put in a feeding tube. Our doctor at home wanted to put one in even before we started any treatment, but for some reason the other one kept saying that Rickie did not need it. Maybe he thought losing the weight would help Rickie's blood pressure (which it certainly did) and thus make everything else a little easier. It was no secret that we both could have used losing a hundred pounds, but just not as fast as Rickie has done it. It was not until May, after losing 20 pounds in one week, that the doctor at MDA finally said it was time. Rickie received a PFG (percutaneous Fluoroscopic Feeding Gastrostomy) tube, not to be confused with a PEG tube. The tube was inserted into his stomach (stage IV = no surgery)from the outside of his belly, guided by fluoroscopy. It is a very thin tube and only hangs out about 3-4 inches from the center of his belly. It is totally unnoticed under his shirts. Since it is gravity fed, when it is time for a feeding, he hooks it up to a bag with about 5 feet of tubing that hangs on an IV type pole. The tubing has a roller on it that allows him to control the rate of the formula. We were told to NEVER but anything into the feeding tube but the formula,(they said it causes clogging problems) so we do not administer his medication through it. It takes about 30 minutes to get one can down, but that is because he takes it slowly hoping to keep nausea away. He only once had a little nausea while feeding, and that was when he tried to take 2 cans at once. He just doesn't have the ability to take in that much volume.The tube has really been no problem and he is able to shower normally and even swim. He is suppose to take 5 cans of formula a day, but he also eats somewhat by mouth, so there is no way he can get the 5 cans in. So far it really has not helped with the weight as he is now down to 138 lbs, but he is keeping his strength up by using it. He usually gets 2 to 3 feedings in a day. A typical day starts with cereal, than an egg with hash browns and english muffin with peanut butter and jelly, then a can for lunch, an ensure and/or power bar mid afternoon, pork tenderloin and potatoes for supper, another can in the evening and ice cream before bed. It sounds like he is eating alot, but the portions are really small and of course some of it never reaches it's destination.
I also understand the depression. Sometimes it seems overwhelming. I have suggested that he talk to someone besides me, but of course being the strong guy he is, he is not interested. That is one thing that I wish they automatically assigned you to at MD Anderson. Some kind of therapy to help with all the feelings that seem to be roaring around us. I have noticed that a few days after chemo it seems to be worse, and he seems to be moody and easily aggravated. I feel that it is just part of it and try to give him some slack until it passes. We are so much a part of each other that at these times I feel depressed too. Sometimes I just have to go outside and have a good cry to get over it. I guess I feel entitled to that, it's my therapy.
Well I have written way more than you probably wanted to read. I guess this is my therapy too!
Hope the Gremlins are not watching!
Cheryl

Daisylin

jojoshort said:

Hi Chantal
Stage IVb is a tough one. We are living it here. Steve had a stent placed on June 22 and it allowed him to eat and drink normally again. Minor discomforts the first 2 days.
BUT, that said, he was DONE with chemo, so his tumor wasn't going to shrink and allow the stent to migrate to the stomach.
We were hesitant to get a stent. We did our homework, and we opted for one of the best docs in this neck of the woods (Mass. General Hospital, one of the best in the world, and he is also an instructor at Harvard). He did the job well. Steve went from not being able to swallow his own saliva to eating and drinking again, so long as he wasn't eating steaks or anything too big. It does come with some caveats, though. Small bite, well chewed and well cut up, washed down with plenty of fluids.
He didn't want a feeding tube. He and his doc were not in favor of it for terminal patients. He is in Hospice House now, the cancer spreading in his lungs making his breathing the paramount issue, but he can enjoy his morning coffee, his mac n cheese, and other small pleasures. Since quitting chemo in mid-May, his taste has improved, slowly, so that food is not only tolerable, but sometimes even enjoyable again. AND, he can swallow his own saliva, which may be something you wish to consider.
Tough choices; do your homework and realize we're all only human.

Jo-Ann

Thank you
Thank you all for taking time to give us some advice. It is truly appreciated. From my internet research and your posts, I feel much more confident in dealing with the doctor. I think for Lee and I, the idea of a feeding tube is frightening, just the idea of it more than anything. It seems so alien and invasive. But, where we seem to be heading, it seems to be the only choice. Food is becoming more and more unappealing to him, and even the few things I listed only a few short days ago that he'd eat, he's now turned off of. We are running out of food options very quickly.
I think we won't bother about the stent right now, he'd likely not eat anyways. Food does not seem to be getting stuck so much as that he just does not want to eat anything. Of course we'll ask about it, but right now it does not seem to be what he needs. I think some sort of feeding tube would be better, probably the J-tube, since he does vomit quite often. We'll see what the doc has to say......
Again, thank you all so very much,
Chantal

BMGky

Daisylin said:

Thank you
Thank you all for taking time to give us some advice. It is truly appreciated. From my internet research and your posts, I feel much more confident in dealing with the doctor. I think for Lee and I, the idea of a feeding tube is frightening, just the idea of it more than anything. It seems so alien and invasive. But, where we seem to be heading, it seems to be the only choice. Food is becoming more and more unappealing to him, and even the few things I listed only a few short days ago that he'd eat, he's now turned off of. We are running out of food options very quickly.
I think we won't bother about the stent right now, he'd likely not eat anyways. Food does not seem to be getting stuck so much as that he just does not want to eat anything. Of course we'll ask about it, but right now it does not seem to be what he needs. I think some sort of feeding tube would be better, probably the J-tube, since he does vomit quite often. We'll see what the doc has to say......
Again, thank you all so very much,
Chantal

The jtube can be a blessing.
The jtube can be a blessing. Being basically a klutz and usually doing things backwards, I was able to handle the jtube with little to no problem. We did flush it daily as instructed. The joey pump is unintrusive and works quietly. The only problem I had was looking around when I was pouring in the water or the food supplement. Not a good idea. I moved my hand as well and poured out some on the carpet. I paid more attention to what I was doing after that. If you have issues with sugar levels, be sure to discuss this with the nutritionist or agency who sets up the pump for you. Hope he can get some comfort.

BMGky

Daisylin said:

Thank you
Thank you all for taking time to give us some advice. It is truly appreciated. From my internet research and your posts, I feel much more confident in dealing with the doctor. I think for Lee and I, the idea of a feeding tube is frightening, just the idea of it more than anything. It seems so alien and invasive. But, where we seem to be heading, it seems to be the only choice. Food is becoming more and more unappealing to him, and even the few things I listed only a few short days ago that he'd eat, he's now turned off of. We are running out of food options very quickly.
I think we won't bother about the stent right now, he'd likely not eat anyways. Food does not seem to be getting stuck so much as that he just does not want to eat anything. Of course we'll ask about it, but right now it does not seem to be what he needs. I think some sort of feeding tube would be better, probably the J-tube, since he does vomit quite often. We'll see what the doc has to say......
Again, thank you all so very much,
Chantal

The jtube can be a blessing.
Posted twice and can't delete it.