to eat or not to eat....

Daisylin

My hubby, stage IVB, has been doing very well with eating, until recently. He is having a wee bit of a hard time swallowing, and usually needs to chase every bite down with some water. He has been having some pain most of the time, and especially during and after eating. (not sure if it's his stomach, esophagus or liver causing the pain)

The issue he's having, that i'm hoping for some advice or reasoning for, is that he's just simply lost his appetite. He will eat about half of his meal, then just lose interest. And that's if he eats at all. He's not getting sick or having to spit up any food. Often, for example tonight, when the meal plan was one of his favourite dishes, he said he's not hungry. I know, and he knows that he has to eat, but there's just no desire for food. He was always a man with a big appetite, and a real love for a good meal. It's sad and frustrating to see him like that. He has not lost much, if any weight, which I am so grateful for, but it's only a matter of time if he continues to be "off" food.

He does not have any feeding tubes and has been eating normal food, no soft food diets. He is fairly stubborn about that. Before chemo, he was having to spit up food several times each meal, and still refused to try soups and other 'easy' foods.

So my question is this..... Do you think it's a psychological thing, that the pain and food getting stuck is a reminder of what's going on down there? Or is it something more medically related? His theory is that his body is telling him not to eat, because there is something wrong, for example when you break your wrist, your body feels pain, and that pain is a reminder not to use that wrist.

Lee has been on a chemo break for about 2 months now, and is still feeling quite well, a bit tired and almost constant mild to moderate pain in his stomach. We are still debating returning for a second round of chemo in August or september. We have another doctor appointment in mid July to discuss again the pros and cons. (we already know most of them from exhaustive reading here, but still can't decide) The recent swallowing issues and pain are leading us to think we may want to re-visit chemo. As I work at a school, I have 2 months off and we are going to live large and spend as much quality time together before chemo invades our home again. We're heading to Vegas next week, and have plans for some beaching and cottaging in July.

Cheers to all, and happy (almost) long weekend! We will be celebrating Canada day here, then Independence day in Vegas! Double party, lucky us!
Chantal

lindadanis

food issues
Hi, I was a member on this site for a long time and I wanted to try to help you out. My husband was also stage four and did alot of chemo, he lost his appetite immediately. I think part of the reason is chemo does make you lose your appetite but also Ed use to say he was scared that the food would get stuck and he would have to vomit which he did quite frequenly., so to your question, yes, I think it's a bit of both. I use to make frappes and put insure in them to build up the calories, anything you can add would be helpful. I know in Ed's case, drinking was not an issue for him and this is how we tried to keep up with the calories.
If you need anymore info and I can help, please email me, hope it gets better.

Linda

fredswilma

Hi Chantel
Sorry your
Hi Chantel
Sorry your hubbies having a hard time eating, yes it is very frustrating, with Mark we are trying smaller meals more often which is working quite well, though I think we are further down the track than you, he is eating mainly slushy foods, steaks etc are out. With regards to things getting stuck, or feeling like they are try Coke instead of water, its got something to do with the bubbles. Mark has not been put off food yet, so don't know the answer there.
We have decided to go with another round of Chemo, which is Taxol, 3 weeks on 1 off, so far so good, that was a really tough decision, but we based it on Marks main Tumor was growing and we had to do something to slow that down, we are still open minded enough to stop the Chemo if the side effects become intolerable.
I am so glad that you are able to have some fun time off, so important, so go enjoy yourselves. Will be thinking of you.
Ann

jojoshort

fredswilma said:

Hi Chantel
Sorry your
Hi Chantel
Sorry your hubbies having a hard time eating, yes it is very frustrating, with Mark we are trying smaller meals more often which is working quite well, though I think we are further down the track than you, he is eating mainly slushy foods, steaks etc are out. With regards to things getting stuck, or feeling like they are try Coke instead of water, its got something to do with the bubbles. Mark has not been put off food yet, so don't know the answer there.
We have decided to go with another round of Chemo, which is Taxol, 3 weeks on 1 off, so far so good, that was a really tough decision, but we based it on Marks main Tumor was growing and we had to do something to slow that down, we are still open minded enough to stop the Chemo if the side effects become intolerable.
I am so glad that you are able to have some fun time off, so important, so go enjoy yourselves. Will be thinking of you.
Ann

Hi Chantal
It's funny that your husband and mine both had the same feeling about their body: that it "knew" something was wrong and it just didn't want food. Although this was his impression while having chemo. His appetite has returned--to a degree--since he's stopped chemo. Yet even tonight, 6 weeks after his last chemo dose, he tells me that food doesn't have the same appeal. The taste isn't "tasty". He eats, but partially out of a sense of obligation that food is fuel.
It's extremely frustrating--almost maddening--to watch one's spouse not eat. I tried so hard to make things appetizing and yet he just didn't have it in him during the chemo. And even after, it hasn't really returned to a level of robust appetite.
I hope you both have a great respite this summer. It sounds like you have some wonderful quality time planned. Keep him hydrated above all, especially in the heat of Las Vegas.
And I have also heard of Coke (not Pepsi) helping if food gets stuck, as Ann mentioned above.
Feel free to email me, as it helps to have some feedback from others in the same boat.
Jo-Ann

jojoshort

jojoshort said:

Hi Chantal
It's funny that your husband and mine both had the same feeling about their body: that it "knew" something was wrong and it just didn't want food. Although this was his impression while having chemo. His appetite has returned--to a degree--since he's stopped chemo. Yet even tonight, 6 weeks after his last chemo dose, he tells me that food doesn't have the same appeal. The taste isn't "tasty". He eats, but partially out of a sense of obligation that food is fuel.
It's extremely frustrating--almost maddening--to watch one's spouse not eat. I tried so hard to make things appetizing and yet he just didn't have it in him during the chemo. And even after, it hasn't really returned to a level of robust appetite.
I hope you both have a great respite this summer. It sounds like you have some wonderful quality time planned. Keep him hydrated above all, especially in the heat of Las Vegas.
And I have also heard of Coke (not Pepsi) helping if food gets stuck, as Ann mentioned above.
Feel free to email me, as it helps to have some feedback from others in the same boat.
Jo-Ann

Barium swallow?
Sorry I forgot: when was his last barium swallow? It may be enlightening as to what's going on in his esophagus.

JohnJB

To eat or not to eat
I am also a StageIV EC and my situation is much like your husbands.

I can (and do) eat anything, but I have to make sure that I chew it very well. As a result it takes me a long time to eat some meals (like steak) and I get tired of the effort to eat slowly before I have really eaten enough. It is tough to sit across from your wife who has finished her dinner and enjoying a cup of coffee while you are only half through.

It may sound anti-social, but one thing I have found is that it helps to eat alone and with a book to read. As I slowly eat and read, I am amazed to find that the entire plate is empty! What generally happens is that my wife finishes her dinner, we chat a bit and she goes off to do something else and I promise to clean up the dinner dishes. That is when my book comes out. The next thing you know, all that is left is the dishes to clean up!

His body is not telling him he doesn't need to eat. I think it is his brain saying that it is too much trouble to eat.

He has to eat. Find a way to make it easier. The book works for me!

John

cher76

Chantal,
I have read many
Chantal,
I have read many articles on all different types of cancer while sitting in the doctor's office (they rarely have anything about esophageal cancer:( ) and most of them refer to cancer patients' lack of appetite. It just seems to go with the territory. My husband has always been a "foodie". He loves to cook and experiment in the kitchen, and still watches the food channel 24/7 if I let him. We love to travel, and on a trip to Europe, and while other people were shopping we were finding family run restaurants so we could emerse ourselves in the culture and food of the area. I think that is part of what makes this disease so heartbreaking for him. One of the few things that gave him pleasure has been taken away. He would love to eat if he could. There was a time during chemo, his first round I think, when he just wasn't interested in eating. The doctor prescribed a medication to help with his appetite. He didn't take it for long, and thought it wasn't helping, but I think it did somewhat. You might see if that might be a solution for your hubby. I know how frustrating it is when they can't or won't eat. Many a night I have cooked one of Rickie's favorite meals, only to be left sitting at the table alone because he can't get it to go down. A lot of our social life revolved around eating out with family and friends, and now that has been pretty much taken away too. And the crazy thing is one night it might go down easily, and the next night it won't. Right now we are on a beans and cornbread kick because that will go down. The good thing is they have lots of protein and they practically cook themselves in the crockpot!
Have a wonderful time in Vegas. We are scheduled to go the first of August if all goes well so be sure and leave some money there for us!
Cheryl

Daisylin

cher76 said:

Chantal,
I have read many
Chantal,
I have read many articles on all different types of cancer while sitting in the doctor's office (they rarely have anything about esophageal cancer:( ) and most of them refer to cancer patients' lack of appetite. It just seems to go with the territory. My husband has always been a "foodie". He loves to cook and experiment in the kitchen, and still watches the food channel 24/7 if I let him. We love to travel, and on a trip to Europe, and while other people were shopping we were finding family run restaurants so we could emerse ourselves in the culture and food of the area. I think that is part of what makes this disease so heartbreaking for him. One of the few things that gave him pleasure has been taken away. He would love to eat if he could. There was a time during chemo, his first round I think, when he just wasn't interested in eating. The doctor prescribed a medication to help with his appetite. He didn't take it for long, and thought it wasn't helping, but I think it did somewhat. You might see if that might be a solution for your hubby. I know how frustrating it is when they can't or won't eat. Many a night I have cooked one of Rickie's favorite meals, only to be left sitting at the table alone because he can't get it to go down. A lot of our social life revolved around eating out with family and friends, and now that has been pretty much taken away too. And the crazy thing is one night it might go down easily, and the next night it won't. Right now we are on a beans and cornbread kick because that will go down. The good thing is they have lots of protein and they practically cook themselves in the crockpot!
Have a wonderful time in Vegas. We are scheduled to go the first of August if all goes well so be sure and leave some money there for us!
Cheryl

thanks everyone!
Thank you everyone for all the advice.

Lee has tried drinking coke and that seems to have made eating a bit worse, he would get almost a hiccup thing, that would cause considerable pain. He was drinking iced tea for a while, but seems to be ‘off’ that. (our iced tea in Canada is not the same as American iced tea, ours is super sweet, store bought, Canadians don’t usually drink iced tea made from actual steeped tea) For him, water seems best, cool with no ice.

I had a private message from someone else, mentioning having him tested for ascities, something I’ve never heard of, but a quick google search showed me that it’s fluid build up in the stomach. Lee seems to have a few of the symptoms for that, so we will be asking the doc for a test at our next appointment.

I don’t think he’s had a barium swallow done…… perhaps I’m wrong, He did have a fluoroscopy, not sure if that’s the same thing. That was done in the initial testing. He has not had one since. We’re going to look into that one too. Thank God for all of you here, I’ve learned so much that our doctor just has not been telling us. I wonder if Canadian doctors are less thorough because of our health care system. It seems to be a blessing and a curse right now. It is wonderful having free health care, no red tape, no hassles…… but on the other hand, either our doc is lazy or the system is telling him not to offer up too many tests and options. I really have no idea, but reading other people’s stories here, the medical treatment here seems so much more reserved. I’m glad that we always have questions to ask him, and have been pushing him to offer us other options. So, for that I thank all of you!

Lee has always been a fairly fast eater, he has slowed down a bit, but I think that more chewing would certainly help…. It just seems to be hard for Lee to remember to do that. He’s always been a guy taking big bites and chewing quickly. It’s hard to reprogram your brain against something you’ve been doing all your life. Reading a book while eating is a great idea!

Anyways, thanks again for all your help and suggestions! I’m sure you all know how much the advice is appreciated! And Cheryl, I'm not promising you anything! We will try to leave you a bit of money in Vegas, but I'm feeling lucky! Cheers!
Chantal

nancyann3

Daisylin said:

thanks everyone!
Thank you everyone for all the advice.

Lee has tried drinking coke and that seems to have made eating a bit worse, he would get almost a hiccup thing, that would cause considerable pain. He was drinking iced tea for a while, but seems to be ‘off’ that. (our iced tea in Canada is not the same as American iced tea, ours is super sweet, store bought, Canadians don’t usually drink iced tea made from actual steeped tea) For him, water seems best, cool with no ice.

I had a private message from someone else, mentioning having him tested for ascities, something I’ve never heard of, but a quick google search showed me that it’s fluid build up in the stomach. Lee seems to have a few of the symptoms for that, so we will be asking the doc for a test at our next appointment.

I don’t think he’s had a barium swallow done…… perhaps I’m wrong, He did have a fluoroscopy, not sure if that’s the same thing. That was done in the initial testing. He has not had one since. We’re going to look into that one too. Thank God for all of you here, I’ve learned so much that our doctor just has not been telling us. I wonder if Canadian doctors are less thorough because of our health care system. It seems to be a blessing and a curse right now. It is wonderful having free health care, no red tape, no hassles…… but on the other hand, either our doc is lazy or the system is telling him not to offer up too many tests and options. I really have no idea, but reading other people’s stories here, the medical treatment here seems so much more reserved. I’m glad that we always have questions to ask him, and have been pushing him to offer us other options. So, for that I thank all of you!

Lee has always been a fairly fast eater, he has slowed down a bit, but I think that more chewing would certainly help…. It just seems to be hard for Lee to remember to do that. He’s always been a guy taking big bites and chewing quickly. It’s hard to reprogram your brain against something you’ve been doing all your life. Reading a book while eating is a great idea!

Anyways, thanks again for all your help and suggestions! I’m sure you all know how much the advice is appreciated! And Cheryl, I'm not promising you anything! We will try to leave you a bit of money in Vegas, but I'm feeling lucky! Cheers!
Chantal

Eating is the toughest of them all.
Even before Steve's surgery, eating was always a challenge. The "nothing sounds or tastes good" is a common statement in this house. And it seems Steve can go a very long time without eating. I asked a nurse one time, "how can someone just not be hungry" and she said, "they just are that way".

We have tried the megace med that is suppose to enhance appetite. Didnt see much help there. We found out that his stomach wasnt emptying very well, so doc put him on reglan for that. (this was all before surgery)

Having a hard time getting the food to go down is very frustrating. The esophagus moves to I think it depends on what position it is in at a certain time.

I also learned that saliva has a great deal to do with how food tastes. If the saliva is thick the food doesnt taste as good or tastes different.

These are just things we have seen or tried in our 18 month journey. What works for one may not for another. But like you, I have learned a lot from this site and you never know when you might read something that will help.

Take care
Nancy

JohnJB

Daisylin said:

thanks everyone!
Thank you everyone for all the advice.

Lee has tried drinking coke and that seems to have made eating a bit worse, he would get almost a hiccup thing, that would cause considerable pain. He was drinking iced tea for a while, but seems to be ‘off’ that. (our iced tea in Canada is not the same as American iced tea, ours is super sweet, store bought, Canadians don’t usually drink iced tea made from actual steeped tea) For him, water seems best, cool with no ice.

I had a private message from someone else, mentioning having him tested for ascities, something I’ve never heard of, but a quick google search showed me that it’s fluid build up in the stomach. Lee seems to have a few of the symptoms for that, so we will be asking the doc for a test at our next appointment.

I don’t think he’s had a barium swallow done…… perhaps I’m wrong, He did have a fluoroscopy, not sure if that’s the same thing. That was done in the initial testing. He has not had one since. We’re going to look into that one too. Thank God for all of you here, I’ve learned so much that our doctor just has not been telling us. I wonder if Canadian doctors are less thorough because of our health care system. It seems to be a blessing and a curse right now. It is wonderful having free health care, no red tape, no hassles…… but on the other hand, either our doc is lazy or the system is telling him not to offer up too many tests and options. I really have no idea, but reading other people’s stories here, the medical treatment here seems so much more reserved. I’m glad that we always have questions to ask him, and have been pushing him to offer us other options. So, for that I thank all of you!

Lee has always been a fairly fast eater, he has slowed down a bit, but I think that more chewing would certainly help…. It just seems to be hard for Lee to remember to do that. He’s always been a guy taking big bites and chewing quickly. It’s hard to reprogram your brain against something you’ve been doing all your life. Reading a book while eating is a great idea!

Anyways, thanks again for all your help and suggestions! I’m sure you all know how much the advice is appreciated! And Cheryl, I'm not promising you anything! We will try to leave you a bit of money in Vegas, but I'm feeling lucky! Cheers!
Chantal

To eat or not to eat
I see that many/most of the people who post are the caretakers. I am the cancer patient, so have first hand knowledge of the difficulties in eating.

I also used to wolf down my meals and that is a very hard habit to break - especially when you are carrying on a conversation with your dinner companion. That is why the book reading has helped me.(Carbonated drinks don't work for me either.)

Please feel free to ask if you have questions.

John

jojoshort

JohnJB said:

To eat or not to eat
I see that many/most of the people who post are the caretakers. I am the cancer patient, so have first hand knowledge of the difficulties in eating.

I also used to wolf down my meals and that is a very hard habit to break - especially when you are carrying on a conversation with your dinner companion. That is why the book reading has helped me.(Carbonated drinks don't work for me either.)

Please feel free to ask if you have questions.

John

Appetite stimulators
We did the megace for about a month while Steve was on chemo. It did seem to help, a bit. Very expensive; I believe our 20 percent share was $175 for a one month supply. But we wanted to try anything at that time.
Marinol is a synthetic marijuana product which can stimulate the appetite. Never tried it though. Requires a prescription.
By far the fastest way to bring on the munchies is medical marijuana. Works immediately, and also helps with nausea due to chemo. Why it's not legal to buy medically in all 50 states is beyond me. Canada may be ahead of us here?
Of course, all the appetite stimulation in the world does little if one simply cannot swallow. I know Steve found that sometimes he had to wait a half hour after an unsuccessful attempt at eating and then the esophagus would allow things to go down. That was his strategy until even that wasn't working. (Hence his decision to go with the stent).

Daisylin

jojoshort said:

Appetite stimulators
We did the megace for about a month while Steve was on chemo. It did seem to help, a bit. Very expensive; I believe our 20 percent share was $175 for a one month supply. But we wanted to try anything at that time.
Marinol is a synthetic marijuana product which can stimulate the appetite. Never tried it though. Requires a prescription.
By far the fastest way to bring on the munchies is medical marijuana. Works immediately, and also helps with nausea due to chemo. Why it's not legal to buy medically in all 50 states is beyond me. Canada may be ahead of us here?
Of course, all the appetite stimulation in the world does little if one simply cannot swallow. I know Steve found that sometimes he had to wait a half hour after an unsuccessful attempt at eating and then the esophagus would allow things to go down. That was his strategy until even that wasn't working. (Hence his decision to go with the stent).

marijuana
I'm surprised to see that someone finally mentioned marijuana.... In all my reading here I have not seen any mention of it. Here in Canada, it is legally available with a prescription. Lee spoke to the doctor about it, and the doc was willing to give it to him, but cautioned that the prescription stuff pretty much has most of the 'good stuff' taken out of it. In a round about way, he seemed to be saying to perhaps find some 'non prescription strength' stuff. It also seems to be recommended for pain control and relaxation.

jojo, you are right, all the stimulation in the world does little if you can't swallow. Lee has been having increasingly more and more pain before, during and after eating. No one has commented on that, but I'm sure it must have happened to many of you? He has compared the sensation to feeling like he's just eaten 4 turkey dinners. It seems to be maybe gas build up. He usually is in pain for a few hours, then starts burping like crazy then feels better for a while. We've tried gas-x, and that didn't seem to work too well for him. Anyone have any ideas there? We are going to look into ascities, but could it be anything else? Or is it just part of the progression of the disease? The swallowing is a part of our issue, he certainly needs to push everything down with water, but the pain and lack of appetite seem to be the biggest issues for us. I don't think he's ready for a stent, as his actual swallowing is not that bad right now.

I've heard that there's a cracked crystal ball floating around out there...... if it gets fixed, could someone please send it my way?

Chantal

jojoshort

Daisylin said:

marijuana
I'm surprised to see that someone finally mentioned marijuana.... In all my reading here I have not seen any mention of it. Here in Canada, it is legally available with a prescription. Lee spoke to the doctor about it, and the doc was willing to give it to him, but cautioned that the prescription stuff pretty much has most of the 'good stuff' taken out of it. In a round about way, he seemed to be saying to perhaps find some 'non prescription strength' stuff. It also seems to be recommended for pain control and relaxation.

jojo, you are right, all the stimulation in the world does little if you can't swallow. Lee has been having increasingly more and more pain before, during and after eating. No one has commented on that, but I'm sure it must have happened to many of you? He has compared the sensation to feeling like he's just eaten 4 turkey dinners. It seems to be maybe gas build up. He usually is in pain for a few hours, then starts burping like crazy then feels better for a while. We've tried gas-x, and that didn't seem to work too well for him. Anyone have any ideas there? We are going to look into ascities, but could it be anything else? Or is it just part of the progression of the disease? The swallowing is a part of our issue, he certainly needs to push everything down with water, but the pain and lack of appetite seem to be the biggest issues for us. I don't think he's ready for a stent, as his actual swallowing is not that bad right now.

I've heard that there's a cracked crystal ball floating around out there...... if it gets fixed, could someone please send it my way?

Chantal

Burping
Steve had an awful time trying to get gas to come up when he was eating pre-stent. The esophagus must've been choked off with saliva sitting on top of the stricture and the gas couldn't escape. He burps like a champ now.
Today we had to go to the hospital for his thoracentisis (pleural cavity drain with a needle). They took the equivalent of 4-1/2 beers of fluid out of his right side pleural cavity. No wonder he was miserable! Now he can breathe so much better.

Now, after that, we stopped at the local restaurant and he ordered up the seafood combo(haddock and scallops--fried of course) with french fries and onion rings. He ate about 1/3 of this huge dinner, enjoyed it and washed it down with a coke. He can't eat in the same quantities as he used to, but he can now eat, thankfully. He has to chew very well and wash it down, but he can eat.

You may wish to push your doc for a barium swallow to see if they can see what's happening with his esophagus/stomach. Unless they have a better diagnostic tool. Has he reported this to his doc?
And for sure, the marijuana we used was a gift from a friend. Not the medical stuff, which in our state isn't legal any which way.

It's always some change-up with cancer, isn't it? Gotta stay on your toes at all times. Sheesh.
Best wishes,
Jo-Ann

fredswilma

jojoshort said:

Burping
Steve had an awful time trying to get gas to come up when he was eating pre-stent. The esophagus must've been choked off with saliva sitting on top of the stricture and the gas couldn't escape. He burps like a champ now.
Today we had to go to the hospital for his thoracentisis (pleural cavity drain with a needle). They took the equivalent of 4-1/2 beers of fluid out of his right side pleural cavity. No wonder he was miserable! Now he can breathe so much better.

Now, after that, we stopped at the local restaurant and he ordered up the seafood combo(haddock and scallops--fried of course) with french fries and onion rings. He ate about 1/3 of this huge dinner, enjoyed it and washed it down with a coke. He can't eat in the same quantities as he used to, but he can now eat, thankfully. He has to chew very well and wash it down, but he can eat.

You may wish to push your doc for a barium swallow to see if they can see what's happening with his esophagus/stomach. Unless they have a better diagnostic tool. Has he reported this to his doc?
And for sure, the marijuana we used was a gift from a friend. Not the medical stuff, which in our state isn't legal any which way.

It's always some change-up with cancer, isn't it? Gotta stay on your toes at all times. Sheesh.
Best wishes,
Jo-Ann

thoracentsisis
Hey Jo-Ann and all
I will be definately looking into this pleural cavity drain, have just quickly googled it and the anthesis ( think the spelling there is wrong), my, why dont the Dr's mention these things when they could be a simple answer to a real problem. Thank you on here for all your advice, once again the value of this site talking with real people with similar problems, I really don't know where I would be without you all.
Thanks Ann