Continued Weight Loss after surgery

Peg Rideout

I joined CSN today on behalf of my husband who was diagnosed with esophageal cancer (Stage IIb) in January, 2012. He underwent chemotherapy and radiation followed by surgery on June 4, 2012. We celebrated on his one year anniversary this week! He has recovered remarkably well and is eating most foods (limits sugar), but he continues to lose weight. He is 6'4 and down to 120. He has always been thin and had a very good metabolism. We are open to soliciting outside help and wondered if anyone has used a nutritionist or dietician to help with weight gain. He does not like the taste of Boost, Ensure etc. so he is not getting any calories from liquid. 

He is learning to snack through the day (peanut butter crackers, granola bars, cheese and crackers, popcorn, nuts), but he isn't seeing any uptick in his weight. 

Can anyone help or is this just what is to be expected?  We have received excellent help from our medical team in Indianapolis but no one has offered any ideas on how to help him gain weight.

I am glad to learn about this resource and hope we can be a support to others going through this illness.

Peg Rideout

paul61

Gaining weight does take some time after surgery

Hello Peg,

I was diagnosed with esophageal cancer in 2009. I was Stage IIB and had Ivor Lewis surgery. I lost a considerable amount of weight after surgery and during chemotherapy. I am 5’ 5” and I weighed 150 pounds before surgery and was as low as 118 pounds after chemotherapy. I took about a year and a half for my body to get used to my new digestive system. I had issues with dumping shortly after surgery and anything with sugar caused difficulties. Gradually my system stabilized and I began to gain weight again but it was almost two years after surgery.

I did consult with a nutritionist but I have to admit he was not particularly helpful. He did recommend a high calorie supplement called BeneCalorie that can be mixed with most foods to increase caloric intake but I found that eating small amounts very frequently helped me more. I typically eat eight times a day.

My typical menu would include:

Breakfast…………………………………. 1 egg scrambled and a bagel with cream cheese

Morning snack …………………………  Package of crackers with peanut butter

Lunch………………………………………… ½ ham sandwich with cheese

Afternoon snack ~ 2 PM………….  Granola Bar

Late Afternoon ~ 4 PM…………….. Shake with Banana, Strawberries, Chia Seeds, Half and Half

Dinner……………………………………….. 4 oz of protein (e.g chicken) 1 cup vegetable, and small salad

Evening snack ~7 PM………………… 1 apple peeled

Late evening snack ~ 9 PM……….. 2 cups of frozen yogurt

 

As you can see I don’t eat a lot at any one time but I eat something about every two or three hours. I am careful not to eat anything three hours prior to bedtime to insure I don’t have issues with reflux and of course I sleep with my chest elevated above my abdomen. (I use an adjustable bed)

After gaining very little weight for about a year and a half I started to gradually gain weight and am now back to about 135 pounds which seems to be my new normal.

I would not be too concerned about your husband not gaining weight quickly after surgery. It does take some time.

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

 

Christine135

Hi Peg Rideout

My husband was diagnosed in April 2012 with Stage 3 EC, went through chemo and radiation with surgery in August 2012 to remove his entire esophagus and pull the stomach up. He used to weigh 165 and is now down to 113, however, a lot of our weight is due to the cancer coming back when we were re-diagnosed in April 2013. 

From what we have been told by our surgeon is that for men, it takes 3500 calories to gain a pound and it can take over a year after surgery to gain a pound or two because of the trauma to the body and how it long it takes to heal. My husband's surgery took 9 hours so his was very invasive. My husband barely can get in 1100 a day because his stomach is so small and we go every 3-4 weeks to have his throat stretch as still closes. Not being able to consume a lot of sugar as it will send my husband into a dumping snydrome, he can not do Carnation instant Breakfast, Boost or Ensure so his surgeon recommended Glucerna which has 200 calories per 8fl ounces with 6 grams of sugar. My husband tolerates that well and likes the taste so he tries to drink 3-4 of those a day. Our nutritianist suggested getting protein and whey powders which you can get from a health food store as well as other products that is low in sugar and high in calories to add to food or make drinks. My husband also drinks what is called Myoplex that is a muscle builder as we are trying to maintain what muscle he has left. That has 300 calories per 17 fl oz with 1 gram of sugar which my husband tries to drink one of those a day. I bought those at my local grocery store as well as get power crunch bars that are usually in the same isle. 

Talk to a nutritianist or dietician who specializes in esophageal cancer. Ours is wonderful and we have gotten some great ideas from her as far as food suggestions. The problem is because of the extensive surgery my husband had, his food portions are small.  Ice crean is something that my husband can eat without problems so he has one to two bowls a day ti get calories. He is learning to snack through out the day but can only eat small portions so it is frustrating to say the least.

Hang in there and research the internet for recipes for esophageal patients. I found some really good recipes that my husband enjoys and likes. Smoothies and milkshakes too are good..

Best to luck and keep us posted on his progress...and be sure to take care of yourself as well. It can be frustrating for you as well to find things for your husband to eat and drink. 

Christine

 

Peg Rideout

paul61 said:

Gaining weight does take some time after surgery

Hello Peg,

I was diagnosed with esophageal cancer in 2009. I was Stage IIB and had Ivor Lewis surgery. I lost a considerable amount of weight after surgery and during chemotherapy. I am 5’ 5” and I weighed 150 pounds before surgery and was as low as 118 pounds after chemotherapy. I took about a year and a half for my body to get used to my new digestive system. I had issues with dumping shortly after surgery and anything with sugar caused difficulties. Gradually my system stabilized and I began to gain weight again but it was almost two years after surgery.

I did consult with a nutritionist but I have to admit he was not particularly helpful. He did recommend a high calorie supplement called BeneCalorie that can be mixed with most foods to increase caloric intake but I found that eating small amounts very frequently helped me more. I typically eat eight times a day.

My typical menu would include:

Breakfast…………………………………. 1 egg scrambled and a bagel with cream cheese

Morning snack …………………………  Package of crackers with peanut butter

Lunch………………………………………… ½ ham sandwich with cheese

Afternoon snack ~ 2 PM………….  Granola Bar

Late Afternoon ~ 4 PM…………….. Shake with Banana, Strawberries, Chia Seeds, Half and Half

Dinner……………………………………….. 4 oz of protein (e.g chicken) 1 cup vegetable, and small salad

Evening snack ~7 PM………………… 1 apple peeled

Late evening snack ~ 9 PM……….. 2 cups of frozen yogurt

 

As you can see I don’t eat a lot at any one time but I eat something about every two or three hours. I am careful not to eat anything three hours prior to bedtime to insure I don’t have issues with reflux and of course I sleep with my chest elevated above my abdomen. (I use an adjustable bed)

After gaining very little weight for about a year and a half I started to gradually gain weight and am now back to about 135 pounds which seems to be my new normal.

I would not be too concerned about your husband not gaining weight quickly after surgery. It does take some time.

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

 

Thank you....

This is very helpful, Paul. My husband, Brian, is eating about this same amount most days so I guess it is a matter of time until his body holds onto the calories. He and I get discouraged so it is good to hear your story. We are learning patience! I do have a call in to a nutritionist so we'll see if there's any more help that we aren't considering. We have heard about taking enzymes to aid in weight gain. Did you ever go this route? 

He currently takes Nexium in the late afternoon and then Zantac at night. Is this similar to what you are taking? We purchased an adjustable bed also so he can stay elevated at night. We are glad to have this.

We are both Hope College graduates (Holland, Michigan), and I believe Grand Blanc isn't too far from there. Am I correct?  

Enjoy a beautiful day....

 

Peg Rideout

Christine135 said:

Hi Peg Rideout

My husband was diagnosed in April 2012 with Stage 3 EC, went through chemo and radiation with surgery in August 2012 to remove his entire esophagus and pull the stomach up. He used to weigh 165 and is now down to 113, however, a lot of our weight is due to the cancer coming back when we were re-diagnosed in April 2013. 

From what we have been told by our surgeon is that for men, it takes 3500 calories to gain a pound and it can take over a year after surgery to gain a pound or two because of the trauma to the body and how it long it takes to heal. My husband's surgery took 9 hours so his was very invasive. My husband barely can get in 1100 a day because his stomach is so small and we go every 3-4 weeks to have his throat stretch as still closes. Not being able to consume a lot of sugar as it will send my husband into a dumping snydrome, he can not do Carnation instant Breakfast, Boost or Ensure so his surgeon recommended Glucerna which has 200 calories per 8fl ounces with 6 grams of sugar. My husband tolerates that well and likes the taste so he tries to drink 3-4 of those a day. Our nutritianist suggested getting protein and whey powders which you can get from a health food store as well as other products that is low in sugar and high in calories to add to food or make drinks. My husband also drinks what is called Myoplex that is a muscle builder as we are trying to maintain what muscle he has left. That has 300 calories per 17 fl oz with 1 gram of sugar which my husband tries to drink one of those a day. I bought those at my local grocery store as well as get power crunch bars that are usually in the same isle. 

Talk to a nutritianist or dietician who specializes in esophageal cancer. Ours is wonderful and we have gotten some great ideas from her as far as food suggestions. The problem is because of the extensive surgery my husband had, his food portions are small.  Ice crean is something that my husband can eat without problems so he has one to two bowls a day ti get calories. He is learning to snack through out the day but can only eat small portions so it is frustrating to say the least.

Hang in there and research the internet for recipes for esophageal patients. I found some really good recipes that my husband enjoys and likes. Smoothies and milkshakes too are good..

Best to luck and keep us posted on his progress...and be sure to take care of yourself as well. It can be frustrating for you as well to find things for your husband to eat and drink. 

Christine

 

Appreciate your help...

Your kind words are appreciated, Christine. Our family and friends are so supportive, but don't really understand how difficult the weight issues have been. It seems so easy to just "eat more", but I explain to them that it's like telling someone who is over weight to just "eat less". We are thankful that he does enjoy his food, but it seems like so much work for us to think about food all day every day. I do want to prepare things that he enjoys and will eat, but this can be difficult too. I am glad to read that we need to exercise patience and be thankful for the positive things. 

You have been a support to me and I hope I can be that to you also. I am sure facing a recurrence is very difficult and I hope you keep me informed on how things are going for you as well. 

Stay in touch....

Peg

Christine135

Peg Rideout said:

Appreciate your help...

Your kind words are appreciated, Christine. Our family and friends are so supportive, but don't really understand how difficult the weight issues have been. It seems so easy to just "eat more", but I explain to them that it's like telling someone who is over weight to just "eat less". We are thankful that he does enjoy his food, but it seems like so much work for us to think about food all day every day. I do want to prepare things that he enjoys and will eat, but this can be difficult too. I am glad to read that we need to exercise patience and be thankful for the positive things. 

You have been a support to me and I hope I can be that to you also. I am sure facing a recurrence is very difficult and I hope you keep me informed on how things are going for you as well. 

Stay in touch....

Peg

Your Welcome..anytime

It is amazing when we are faced with a crisis such as this how much we truly have taken for granted..something so simple as easting. It is hard to explain how people with EC can not "just eat more" as this disease is still so new and unknown. I have had to explain to many people just what EC is as they never heard of it. Mike and I just last night were talking about all the little things that we are now so aware of since being diagnosed with cancer and we had quite a list of things that we never took the time to consider and appreciate. Funny how life can be so crazy that we miss out on a lot until we are forced to stop and really look at things around us.

It is a daily struggle to try and think about what to make for dinner other than mashed potatoes and chicken. There are so many ways you can prepare them but we are slowly expanding our horizons. I am not sure if you have thought about pork or turkey oto replace meat as Mike still can not digest meat yet so we make turkey burgers and just yesterday I made for the first time meatloaf only using turkey which came out really great. I just replaced the hamburg with turkey and made sure I cut the pices in half and chopped the onions really small and Mike really enjoyed it. I also made a shepard's pie, again using turkey and he enjoyed that too so now that I know he can tolerate turkey (which if I did not tell my son he would never have known it was not hamburg) I am making anything that is made with hamburg and replace it with the turkey. 

I stopped wishing for Mike to gain weight as I know that it is almost impossible based on the amount of food he can eat so I now focus on maintaining his weight and since I have made that clear to Mike that is what is important, his attitude about food has changed because he no longer looks at food as I HAVE TO EAT TO GAIN WEIGHT but I need to eat to keep my weight. I found it better to focus on Mike's mental health instead of his physical health for the physical will never change fast enough so if i can keep Mike positive mentally then he does not dwell on the body that shows the toll of this horrible disease.

I am glad I can help support you and will always be here if you need that support. You are a great source of support for me because our situations are so similar. You are doing great and I know how hard it is on you as well as your husband. Take each day for what it is and remember to take more breaks during the day to stop and take a breath.

Stay in touch and prayers to you and your husband.

Christine 

paul61

Peg Rideout said:

Thank you....

This is very helpful, Paul. My husband, Brian, is eating about this same amount most days so I guess it is a matter of time until his body holds onto the calories. He and I get discouraged so it is good to hear your story. We are learning patience! I do have a call in to a nutritionist so we'll see if there's any more help that we aren't considering. We have heard about taking enzymes to aid in weight gain. Did you ever go this route? 

He currently takes Nexium in the late afternoon and then Zantac at night. Is this similar to what you are taking? We purchased an adjustable bed also so he can stay elevated at night. We are glad to have this.

We are both Hope College graduates (Holland, Michigan), and I believe Grand Blanc isn't too far from there. Am I correct?  

Enjoy a beautiful day....

 

I did consult with a nutritionist

I did consult with a nutritionist when I was recovering from surgery. He did recommend I try Benecalorie, a supplement make by Nestlie the can be mixed with various foods.

 I do take a probiotic that I believe helps me with digestion. The product I take is called Culturelle and can be purchased over the counter at WalMart. The proton pump inhibitor I take for acid is omeprazole. I take one 20 mg tablet in the morning and one before bed.

I also found that as time went by I could eat many things that I could not eat right after surgery. As my diet choices expanded I found it easier to gain weight.

Grand Banc, Michigan is not too far from Holland, Michigan. Grand Blanc is just south or Flint, Michigan and about 50 miles north of Detroit.

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

 

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Peg Rideout

paul61 said:

I did consult with a nutritionist

I did consult with a nutritionist when I was recovering from surgery. He did recommend I try Benecalorie, a supplement make by Nestlie the can be mixed with various foods.

 I do take a probiotic that I believe helps me with digestion. The product I take is called Culturelle and can be purchased over the counter at WalMart. The proton pump inhibitor I take for acid is omeprazole. I take one 20 mg tablet in the morning and one before bed.

I also found that as time went by I could eat many things that I could not eat right after surgery. As my diet choices expanded I found it easier to gain weight.

Grand Banc, Michigan is not too far from Holland, Michigan. Grand Blanc is just south or Flint, Michigan and about 50 miles north of Detroit.

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

 

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Good to know

My husband was so encouraged to read your posts. Thank you again. We both grew up in the Detroit area and still have family there. It seems like Brian (my husband) has a few good days where he feels well and eats a lot and then a day or more where he has digestive issues and feels a little low. Hopefully he will continue to have more good days in row. It is hard to find clothes to fit when one is so thin!

Blessings to you,

Peg

Peg Rideout

Christine135 said:

Your Welcome..anytime

It is amazing when we are faced with a crisis such as this how much we truly have taken for granted..something so simple as easting. It is hard to explain how people with EC can not "just eat more" as this disease is still so new and unknown. I have had to explain to many people just what EC is as they never heard of it. Mike and I just last night were talking about all the little things that we are now so aware of since being diagnosed with cancer and we had quite a list of things that we never took the time to consider and appreciate. Funny how life can be so crazy that we miss out on a lot until we are forced to stop and really look at things around us.

It is a daily struggle to try and think about what to make for dinner other than mashed potatoes and chicken. There are so many ways you can prepare them but we are slowly expanding our horizons. I am not sure if you have thought about pork or turkey oto replace meat as Mike still can not digest meat yet so we make turkey burgers and just yesterday I made for the first time meatloaf only using turkey which came out really great. I just replaced the hamburg with turkey and made sure I cut the pices in half and chopped the onions really small and Mike really enjoyed it. I also made a shepard's pie, again using turkey and he enjoyed that too so now that I know he can tolerate turkey (which if I did not tell my son he would never have known it was not hamburg) I am making anything that is made with hamburg and replace it with the turkey. 

I stopped wishing for Mike to gain weight as I know that it is almost impossible based on the amount of food he can eat so I now focus on maintaining his weight and since I have made that clear to Mike that is what is important, his attitude about food has changed because he no longer looks at food as I HAVE TO EAT TO GAIN WEIGHT but I need to eat to keep my weight. I found it better to focus on Mike's mental health instead of his physical health for the physical will never change fast enough so if i can keep Mike positive mentally then he does not dwell on the body that shows the toll of this horrible disease.

I am glad I can help support you and will always be here if you need that support. You are a great source of support for me because our situations are so similar. You are doing great and I know how hard it is on you as well as your husband. Take each day for what it is and remember to take more breaks during the day to stop and take a breath.

Stay in touch and prayers to you and your husband.

Christine 

Good advice

Christine, I agree completely that keeping Brian encouraged mentally aids in the battle towards recovery. We take short walks every day and keep things light. He seems a bit more anxious about many things now so we try to keep the stress level low. We have a strong faith in Jesus Christ and end our evenings reading a devotion together. 

Thanks for the recipe tips too. We like chicken pot pie made with Pillsbury pie crust. Some days he eats more than others, but we do try to eat fatty fish often (salmon is a favorite). 

Let's keep in touch. We are here for you and Mike.

Peg and Brian

Daddy Kalinka

Eating

I have had my surgery last month after my chemo and radiation.I thought I should be eating by now but after research and reading post I know I have a long road of recovery ahead of me.My wife and I make a gret dinner only to find out I take two bites and can;t eat anymore,.The frig gets loaded with the things I desire but never eat.I do the feeding daily via a j-tube (the one where you have to hook up to a pump and spend 4 hours to get down 2 cans of osmolite.I feed between 1 A.M/ 4 A.M. NOTHING LIKE A GOOD NIGHT SLEEP lol.Iwish I had some suggestions for you but I'm in the same boat and I suppose I'll be here for quite some time.If you fid any good ideas please let me and the wife know. Semper Fi Tom Kubishin New Mexico

Josie60

I think we all struggle with weight

I was dx in March 2012, surgery in June. Last year was tough as some minor complications delayed my ability to eat solids for about 3 months. During that time I lost 30 lbs. the oncologist was concerned and recommended putting th j tube back in. So I had that for 8 months. I regained the weight but I started having some irration issues so I just had it removed And have already lost several lbs. I anticipate now that the j tube is gone I will start losing weight again so I am trying to push myself to eat even though I no longer have hunger pangs to signal the need to eat.

i also am trying to eat by the clock every couple hours because I can't consume much at any one time. I find I can eat more in the morning and maybe lunch but after about 3 pm the amount of food I can consume is limited.  a dinner if I am lucky will still be a couple bites of meat and vegetables.  Beef and pork is hard for me to digest still. 

sandy1943

Hello Peg, I was diagnosed in

Hello Peg, I was diagnosed in Nov. 2007. While undergoing treatment, I maintained my weight. After surgery I started losing and ended up with a 99 pds. loss. I tried everything, but nothing helped. All my doctors were puzzled, because I ate well. They finally decided my metabolism changed. I have gained 12 pds back and I'm healthier than before. I was overweight, had high blood pressure and diabetes. I don't have a problem with either now. My doctors say I want ever gain the weight back. For me, that's a good thing. I'm enjoying a slimmer me.

As for the reflux medicine, I take OTC omeprazole in the morning and  a 150 Zantac in the evening. If I behave myself on night time eating and sleep elevated I don't have problems with reflux.

I know the weight loss is a concern. I was afraid it wasn't ever going to stop. Hope you can find a magic answer soon,

Sandra

Peg Rideout

sandy1943 said:

Hello Peg, I was diagnosed in

Hello Peg, I was diagnosed in Nov. 2007. While undergoing treatment, I maintained my weight. After surgery I started losing and ended up with a 99 pds. loss. I tried everything, but nothing helped. All my doctors were puzzled, because I ate well. They finally decided my metabolism changed. I have gained 12 pds back and I'm healthier than before. I was overweight, had high blood pressure and diabetes. I don't have a problem with either now. My doctors say I want ever gain the weight back. For me, that's a good thing. I'm enjoying a slimmer me.

As for the reflux medicine, I take OTC omeprazole in the morning and  a 150 Zantac in the evening. If I behave myself on night time eating and sleep elevated I don't have problems with reflux.

I know the weight loss is a concern. I was afraid it wasn't ever going to stop. Hope you can find a magic answer soon,

Sandra

Thanks for the information

Sandra,

Thanks for the communication. We went to the gastroenterologist today. Brian had an endoscopy this week along with some blood tests. Findings are that he has aggravation in his duodenum which could be due to a food allergy so he will begin a gluten free diet to see if that helps. We also decided to put the feeding tube back in for a couple months so that he can get plenty of nourishment. He is trying so hard and the doc said his body is not absorbing the nutrients he needs.  Overall he feels pretty well - sleeping and working every day, but his energy level is lower than it used to be.  We are trying to do what we can and trust the Lord to walk alongside us on this journey.

Glad to hear that you are healthier and feeling good!

Peg

Peg Rideout

Josie60 said:

I think we all struggle with weight

I was dx in March 2012, surgery in June. Last year was tough as some minor complications delayed my ability to eat solids for about 3 months. During that time I lost 30 lbs. the oncologist was concerned and recommended putting th j tube back in. So I had that for 8 months. I regained the weight but I started having some irration issues so I just had it removed And have already lost several lbs. I anticipate now that the j tube is gone I will start losing weight again so I am trying to push myself to eat even though I no longer have hunger pangs to signal the need to eat.

i also am trying to eat by the clock every couple hours because I can't consume much at any one time. I find I can eat more in the morning and maybe lunch but after about 3 pm the amount of food I can consume is limited.  a dinner if I am lucky will still be a couple bites of meat and vegetables.  Beef and pork is hard for me to digest still. 

update

Thanks for the update Josie60. We decided today in an appointment with our gastroenterologist to put the j tube back in for a couple months and to begin a gluten free diet to hopefully heal up the small intestine. My hubby had the same problem with not feeling hungry during the day after using the feeding tube each night but the dr said he will monitor and adjust as soon as Brian starts to gain some weight. He has enjoyed eating about anything though but the scale just won't budge up at all!

He tries to eat as often as possible too.  Stay positive and trust the Lord. 

Peg

Peg Rideout

Daddy Kalinka said:

Eating

I have had my surgery last month after my chemo and radiation.I thought I should be eating by now but after research and reading post I know I have a long road of recovery ahead of me.My wife and I make a gret dinner only to find out I take two bites and can;t eat anymore,.The frig gets loaded with the things I desire but never eat.I do the feeding daily via a j-tube (the one where you have to hook up to a pump and spend 4 hours to get down 2 cans of osmolite.I feed between 1 A.M/ 4 A.M. NOTHING LIKE A GOOD NIGHT SLEEP lol.Iwish I had some suggestions for you but I'm in the same boat and I suppose I'll be here for quite some time.If you fid any good ideas please let me and the wife know. Semper Fi Tom Kubishin New Mexico

Diet changes

Hey Daddy Kalinka...we met with our GI doc today and he wants Brian to try a gluten free diet along with using the feeding tube again for a few months to see if his body can rebuild a little and hopefully heal up his small intestine. Not thrilled about the feeding tube again but the doc said it will take stress off of trying to work so hard to eat all the time and they can put loads of calories in him. 

Hope you are doing ok and seeing some improvement. Overall Brian feels good and is back to work.

 

Peg

Daddy Kalinka

Peg Rideout said:

Diet changes

Hey Daddy Kalinka...we met with our GI doc today and he wants Brian to try a gluten free diet along with using the feeding tube again for a few months to see if his body can rebuild a little and hopefully heal up his small intestine. Not thrilled about the feeding tube again but the doc said it will take stress off of trying to work so hard to eat all the time and they can put loads of calories in him. 

Hope you are doing ok and seeing some improvement. Overall Brian feels good and is back to work.

 

Peg

feeding tube

   I'm on the tube and went from the pump to gravity feed.Gravity feed can put a can down in 15 minutes but it takes a lot of trial and error so as not to get nauesa or diarhea.For the last day I can't seem to eat as it feels like something is caught in my throat and it seems as I make progress there's another stumbling block in my way.This is no picnic and I get the worst fears like my stomach to throat stitches came out or a piece of food is wedged in my throat and this will always happen on a weekend when you can't get any answers.Sorry for crying on your shoulders but I hope maybe the gravity feed or using the 60ml syringe will cut the time down on feeding.If you guys ever need to talk (don't know if my suggestions would do any good)I welcome communications.Here is my phone number and I always have my answering machine on unless I'm on the phone then it just rings cause I hate to press buttons to get the caller as I usually lose both calls.Please feel free to call or email.  phone: 505-326-7731  email:  kubishin@hotmail.com  Peace my friends Tom and Muriel

Daddy Kalinka

Josie60 said:

I think we all struggle with weight

I was dx in March 2012, surgery in June. Last year was tough as some minor complications delayed my ability to eat solids for about 3 months. During that time I lost 30 lbs. the oncologist was concerned and recommended putting th j tube back in. So I had that for 8 months. I regained the weight but I started having some irration issues so I just had it removed And have already lost several lbs. I anticipate now that the j tube is gone I will start losing weight again so I am trying to push myself to eat even though I no longer have hunger pangs to signal the need to eat.

i also am trying to eat by the clock every couple hours because I can't consume much at any one time. I find I can eat more in the morning and maybe lunch but after about 3 pm the amount of food I can consume is limited.  a dinner if I am lucky will still be a couple bites of meat and vegetables.  Beef and pork is hard for me to digest still. 

 
 Have you ever felt that

 

 Have you ever felt that something is caught in your throat?I tried eating last night and this morning only to have my food not go down weven with the help of drinking juice to assist in the process.What happens is a bit gross as I end up spitting out the food or drink that I just tried to take.It's scarry and I don't want to let my wife know as I just started making progress in the eating arena,tow steps forward and slide back three lol.

          This may help your appetite  my oncologist just got me this script Megestrol Acetate oral suspension,the dose will be up to the doc.I just started this and I was feeling hungry then ate now I may have something caught in my throat (of course it's the weekend) but ask about this med and it is not bases on the marijuana THC drug that is being used but is a type of hormone.   Peace Tom and Muriel

    http://www.rxlist.com/megestrol-acetate-oral-suspension-drug.htm

Sendeep

I joined this forum to get

I joined this forum to get better understanding of my father situation who had his upper GI easophagus cancer surgery..Its been four months since surgery post CT n RT. Last week doctor informed me about cancer recurrence which I shook the ground below my feet. till yesterday my father had j tube which was the only way to feed him. Primary reason to keep tube for so long was a surgery wound around his neck which wasn't getting healed. He has now started to take oral feed .with little difficulty. I know this will not continue for long and he will soon start facing difficulty swallowing. Doctor has suggested immunotherapy coupled with chemo for recurrent cancer however this can be done only when he adds few ponuds. Currently he is 77 from previous 110 pounds. Gaining weight after surgery takes a lot of time however is there an average time line reason I ask this is because only when he gains weight then doctor will think of proceeding with further treatment. Please let me know if you can help me get this information. My email : deepsen22@gmail.com.Thanks

paul61

Perhaps they should replace the J-tube?

It does take at least a few months after surgery to regain lost weight. I weighed 150 lbs. when I was diagnosed with EC and after surgery and chemotherapy I weighed 108 lbs. It took me about six months to gain about 25 lbs. For the first three months after surgery I gained very little weight. I was never hungry, eating was difficult, and I frequently felt nauseous after eating. I had to force myself to eat very small amounts 7 times a day to maintain my weight for the first few months.

It seems like the best approach for your father is to have the surgeon replace his feeding tube and use that as a source of nutrition and hydration so he can get to a point where he can tolerate the immunotherapy and chemotherapy treatment. Is there some reason the surgeon is against this?

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year Survivor

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

 

Sendeep

paul61 said:

Perhaps they should replace the J-tube?

It does take at least a few months after surgery to regain lost weight. I weighed 150 lbs. when I was diagnosed with EC and after surgery and chemotherapy I weighed 108 lbs. It took me about six months to gain about 25 lbs. For the first three months after surgery I gained very little weight. I was never hungry, eating was difficult, and I frequently felt nauseous after eating. I had to force myself to eat very small amounts 7 times a day to maintain my weight for the first few months.

It seems like the best approach for your father is to have the surgeon replace his feeding tube and use that as a source of nutrition and hydration so he can get to a point where he can tolerate the immunotherapy and chemotherapy treatment. Is there some reason the surgeon is against this?

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year Survivor

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

 

J Tube planned for future

Thanks Paul for sharing your experience. It's been two years now since we're fighting this battle and your story has given me new hope that my father can still beat cancer and come out stronger.

Today he is getting discharged from hospital. I'm glad that his neck wound has healed which lead doctors to remove jtube however they were reluctant to take it out initially. Doctors are hoping that he gains some weight during this time. In case he starts to face difficulty eating they plan to put jtube back again so ensure he gets proper nourishment after which chemo and immuno might start. I'm especially hopeful of immunotherapy as I have heard it's targeted and less harmful on the body. Please let me in case you have any experience to share on this 

LorettaMarshall

Sendeep~Have written 2U on A new topic line re immunotherapy

"Sendeep" - I've chosen to post my answer to you about possibility of imunotherapy for your dear dad on a separate topic forum.  It would be best if you had your questions posted on a new topic line where we regulars can answer your questions and all be "on the same page".  At least, that works best for me, if I don't have to jump from one set of postings to another, to find the "newbies".  So please see my answer to you here at the new link.  

https://csn.cancer.org/node/315783

Hoping that something that I have written will be helpful for your dad.

Loretta - wife of William who was DX at age 65 with Stage III EC (T3N1M0) and is still celebrating his miracle 15 years later.  So far no recurrence)