Hi. We're new.
I'll start by introducing myself. My name's Jackie and my husband and I were married last year. Earlier this year (Feb 2010) Anthony was diagnosed with EC (ge junction). They staged it at IIB and he was started on chemoradiation (oxaliplation and 5FU) in March and his last treatment was April. In May he has the esophagectomy and in June, his oncologist officially declared him cancer free!
It's been a challenging 5 months. Navigating his new system is tough but it's definitely gotten better. He's lost 65Ibs (he was 180 and this morning it was 115) The majority of the weight loss occured after the surgery. I understand that almost every single survivor of EC experiences severe weight loss but I'm getting very worried about my husband. We've tried almost everything. he is able to chew but we choose to puree most of his food so to include all the nutrients. i also add his vitamins and ensure. but the weight is stil dropping. Is there anything else we can do? Does it get better? I'm getting ready to email his nutritionist, but I just wanted to ask others who have gone through the same thing. Any input would be greatly appreciated!
Thank You!
Comments
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It will get better..........
I too lost 62# after surgery. My wife thought I was going to blow away in the wind. My dx was in Feb, Surg in March followed by 3 months of chem. I am here to tell you IT DOES GET BETTER! It may take 4 plus months for him to get to eating better. I now eat very normal. Try to eat between meals, food he likes, hi nutrition etc. My weight has stabalized and I've doubled my intake. So have faith, you are on this journey together, good luck and God Bless.
Gerry0 -
Weight loss
HI Jackie,
My name is cindy and i am from Iowa. I was diagnosed stage IIa in august of 09. I had chemo and radiation for 6 weeks and only lost about 10 pounds. I did not have a feeding tube at this time. I had THE surgery in december and then had a J-tube for 6 weeks. For 45 days i could have nothing by moouth because of a leak. At this time i lost a lot of weight quickly. Once i was able to eat food i continued to lose weight. I went from 155 to what i am now 107. I tried to eat scrambled eggs, peanut butter, ice cream, yogart, etc. for the protein because i couldnt eat much at one time.
I have now after 11 months from surgery leved off with my weight and have even gained a pound this month. I too used the blender a lot at first because i thought i could get more nutrients in if i put them all in there and sipped it all day. Just remember to eat small amounts at first but eat all day long. One thing that i do eat throughout the day even now is nuts. I carry a bag of nuts and dried fruit every where i go. At work, in my car, by my computer. You will find something that works for you. Good Luck and You will be in my prayers. Cindy0 -
Have you tried addingcindyhils said:Weight loss
HI Jackie,
My name is cindy and i am from Iowa. I was diagnosed stage IIa in august of 09. I had chemo and radiation for 6 weeks and only lost about 10 pounds. I did not have a feeding tube at this time. I had THE surgery in december and then had a J-tube for 6 weeks. For 45 days i could have nothing by moouth because of a leak. At this time i lost a lot of weight quickly. Once i was able to eat food i continued to lose weight. I went from 155 to what i am now 107. I tried to eat scrambled eggs, peanut butter, ice cream, yogart, etc. for the protein because i couldnt eat much at one time.
I have now after 11 months from surgery leved off with my weight and have even gained a pound this month. I too used the blender a lot at first because i thought i could get more nutrients in if i put them all in there and sipped it all day. Just remember to eat small amounts at first but eat all day long. One thing that i do eat throughout the day even now is nuts. I carry a bag of nuts and dried fruit every where i go. At work, in my car, by my computer. You will find something that works for you. Good Luck and You will be in my prayers. Cindy
Have you tried adding supplements? There is a great one my friend ,who is a dietian at a hospital for cancer patients, reccomends. It is called Benecalorie. It is a low volume, I think 1 or 2 oz, liquid that has over 300 calories from fat and protien. You can mix it in hot food like mashed potatoes, oatmeal, or in a shake. The great thing is it's it isn't sweet and has almost no taste at all.
You have to get them from a pharmacy or you can order them online. I know Walgreens.com and others have them too. They come in individual servings so they are easy to take along to work or wherever.
I hope that helps.
Deb0 -
ivor lewis here
Hi Jackie,
Well first off welcome, sounds like you had a whirlwind wedding with not a very nice honeymoon, first off let me say you loose alot of weight when you have the ivor lewis surgery Jeff was a 280lb man and he was diagnosed on April Fools day in 09 (which was not a very nice joke) with this ugly disease, he was only 45 at the time and was stage 2 also, he went with 3 rounds of chemo, then had the ivor lewis surgery on july 21, 20009 surgery wise he did great, othrwise wasn't good, he came home with a feeding tube but did not have to use it.
Remember small amount of food, peanut butter has lots of protein so that is also a good resource soft foods, and be careful with meat as we were told alot of it doesn't digest well so he ate alot of chicken and fish, and did quite well on this.
I will say it takes a long time to get over surgery.
Please let us know what kind of surgery he had
Lori/aka moe580 -
high calorie supplementsMOE58 said:ivor lewis here
Hi Jackie,
Well first off welcome, sounds like you had a whirlwind wedding with not a very nice honeymoon, first off let me say you loose alot of weight when you have the ivor lewis surgery Jeff was a 280lb man and he was diagnosed on April Fools day in 09 (which was not a very nice joke) with this ugly disease, he was only 45 at the time and was stage 2 also, he went with 3 rounds of chemo, then had the ivor lewis surgery on july 21, 20009 surgery wise he did great, othrwise wasn't good, he came home with a feeding tube but did not have to use it.
Remember small amount of food, peanut butter has lots of protein so that is also a good resource soft foods, and be careful with meat as we were told alot of it doesn't digest well so he ate alot of chicken and fish, and did quite well on this.
I will say it takes a long time to get over surgery.
Please let us know what kind of surgery he had
Lori/aka moe58
Hi Jackie and Tony,
Just going to suggest the Carnation high calorie supplement, you have to order it online has about 570 calories per can but you have to drink small amounts otherwise it will cause dumping. It helped me get started and also I have become a peanut butter addict one jar a week and have gone from 114 in May to 127 at present. Good luck, you need the weight to keep your energy and hope you have success in gaining it, it just takes a long time like Lori said esp Ivor Lewis patients. good luck, welcome to this board.
Donna700 -
It will take time and patience
Hello Jackie and Tony,
I had Ivor Lewis surgery in December of last year. I went from 150 lbs prior to surgery to 119 lbs when I finished my post surgical chemotherapy. I took me about six months to get used to my new plumbing. During that time I had a difficult time gaining any weight back. Since then I have gained back about 10 lbs of the weight loss and have leveled off at about 130 lbs. My experience was:
1. It takes time for your body to adjust to the surgical modifications.
2. Foods high in sugar content seem to cause dumping syndrome and should be avoided
3. Eating small meals six to seven times a day helps get the needed calories without discomfort
4. Trying to force yourself into a pattern that matches traditional breakfast, lunch, and dinner times; and amounts, will not work
5. Having someone constantly telling you that you have to eat because you need to gain weight is just irritating and causes non productive anxiety
6. Having someone tell you they would like to give you a few of "their pounds" is even more irritating than having someone tell you to eat all the time
7 Be patient, keep little snacks with you all the time, like crackers with peanut butter, pretzel sticks, etc so you can eat whenever the urge hits you.
8. Initially you may have to let the clock remind you when it is time to eat rather than depend on hunger to remind you.
9. High calorie supplements like BeneCalorie, Ensure, Carnation Instant Breakfast, and Whey Protein can be helpful if taken in small amounts during the day (trying to drink a full serving tends to cause dumping)
10. Be kind and patient with yourself. This is a journey not a race.
After a while I found my body adjusted and now I can eat almost anything I want in small amounts. The fun part is I can snack as much as I want anytime I want. I try to make my snacks healthy items that are high in complex carbohydrates and protein. I also try to eat at least three small servings of fruit or vegetables every day. I find eating an apple sliced up about two hours prior to going to bed helps prevent reflux.
I have not heard of anyone gaining back all the weight they lost after surgery. Most people tend to gradually gain back some weight and reach a new lower weight that suits their new system and level out at that weight. As long as Tony feels good and has energy I would not get too focused on a number.
I hope Tony will be feeling better soon.
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
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Thank you all.paul61 said:It will take time and patience
Hello Jackie and Tony,
I had Ivor Lewis surgery in December of last year. I went from 150 lbs prior to surgery to 119 lbs when I finished my post surgical chemotherapy. I took me about six months to get used to my new plumbing. During that time I had a difficult time gaining any weight back. Since then I have gained back about 10 lbs of the weight loss and have leveled off at about 130 lbs. My experience was:
1. It takes time for your body to adjust to the surgical modifications.
2. Foods high in sugar content seem to cause dumping syndrome and should be avoided
3. Eating small meals six to seven times a day helps get the needed calories without discomfort
4. Trying to force yourself into a pattern that matches traditional breakfast, lunch, and dinner times; and amounts, will not work
5. Having someone constantly telling you that you have to eat because you need to gain weight is just irritating and causes non productive anxiety
6. Having someone tell you they would like to give you a few of "their pounds" is even more irritating than having someone tell you to eat all the time
7 Be patient, keep little snacks with you all the time, like crackers with peanut butter, pretzel sticks, etc so you can eat whenever the urge hits you.
8. Initially you may have to let the clock remind you when it is time to eat rather than depend on hunger to remind you.
9. High calorie supplements like BeneCalorie, Ensure, Carnation Instant Breakfast, and Whey Protein can be helpful if taken in small amounts during the day (trying to drink a full serving tends to cause dumping)
10. Be kind and patient with yourself. This is a journey not a race.
After a while I found my body adjusted and now I can eat almost anything I want in small amounts. The fun part is I can snack as much as I want anytime I want. I try to make my snacks healthy items that are high in complex carbohydrates and protein. I also try to eat at least three small servings of fruit or vegetables every day. I find eating an apple sliced up about two hours prior to going to bed helps prevent reflux.
I have not heard of anyone gaining back all the weight they lost after surgery. Most people tend to gradually gain back some weight and reach a new lower weight that suits their new system and level out at that weight. As long as Tony feels good and has energy I would not get too focused on a number.
I hope Tony will be feeling better soon.
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
Life may not be the party we hoped for, but while we are here we might as well dance!
I cannot express my gratitude for all your kind words and enouragement. I truly thank you all for all your responses. I will start by filling out some of the gaps from my introduction
*Anthony is 30 years old
*We live in Baltimore, Maryland
*yes, my profile picture was taken on our wedding day :-) the year went by really fast.
*He was staged at T2N1Mx
*His "care team" include an oncologist, cardiothoracic surgeon, an oncology nurse and a nutritionist. He was/is treated at Johns Hopkins Hospital in Baltimore,MD
*He had the transthoracic esophagectomy
*He had a J-tube for about 4 weeks following the surgery. The surgeon had explained that he would insert the tube during surgery and if he passes the swallow study (immediately following the surgery), he would be allowed to drink water and eat very soft food. They did the swallow study 5 days after surgery and there was some minor leakage. It wasn't significant but the surgeon kept him on the J-tube to let the wound heal.
*He has had one dilation. He has no trouble swallowing at all. But the surgeon has advised us any changes, or if Anthony wants another dilation, to contact him immediately and he'll be seen the next morning.
*The reason why we started to puree food is beacuse I wanted to make sure he gets all of his nutrients. I'm able to add his ensure, vitamins along with the food. With my husband, having all of these things on one serving is alot easier than having to remember to take his vitamins or drink his ensure
Oh, also with ensure, if he were to drink it on its own, he'll do so just a little bit at a time, otherwise it causes terrible dumping. With the puree method, I'm able to add a whole bottle to one meal and he's fine.
*He has quite the appetite! And how this brings me joy!
*His doctors say he's doing exceptionally well
*His energy depends on where his weight is. But most of the time it's great. Everytime he drops to less than 120Ibs, he does get a little sluggish. This has happened a few times and this is what brought on the puree idea.
*His mother is an absolutely wonderful and great woman. But she worries.A LOT. (Understandably, like any mother would) She was thinking the doctors should be doing more to get his weight up. I've read enough and talked enough to his care team to understand that it's very dificult to gain weight. Particularly since it's only been less than 6 months after the surgery. But when she (my mother in law) said to me that he could die if he keeps on losing weight (he will lose all the necessary electrolytes she said) I picked up on her "worry" energy and basically, got very anxious and upset. I sat my husband down and talked to him. He said to me exactly what you all are saying to me, that it takes time. I totally understand this, I always have. My mother in law means well but my nerves were shot after that conversation with her.
Thank you for getting to the end of my novel I really appreciate it. 0 -
Hello, I,understand aboutpetals007 said:Thank you all.
I cannot express my gratitude for all your kind words and enouragement. I truly thank you all for all your responses. I will start by filling out some of the gaps from my introduction
*Anthony is 30 years old
*We live in Baltimore, Maryland
*yes, my profile picture was taken on our wedding day :-) the year went by really fast.
*He was staged at T2N1Mx
*His "care team" include an oncologist, cardiothoracic surgeon, an oncology nurse and a nutritionist. He was/is treated at Johns Hopkins Hospital in Baltimore,MD
*He had the transthoracic esophagectomy
*He had a J-tube for about 4 weeks following the surgery. The surgeon had explained that he would insert the tube during surgery and if he passes the swallow study (immediately following the surgery), he would be allowed to drink water and eat very soft food. They did the swallow study 5 days after surgery and there was some minor leakage. It wasn't significant but the surgeon kept him on the J-tube to let the wound heal.
*He has had one dilation. He has no trouble swallowing at all. But the surgeon has advised us any changes, or if Anthony wants another dilation, to contact him immediately and he'll be seen the next morning.
*The reason why we started to puree food is beacuse I wanted to make sure he gets all of his nutrients. I'm able to add his ensure, vitamins along with the food. With my husband, having all of these things on one serving is alot easier than having to remember to take his vitamins or drink his ensure Oh, also with ensure, if he were to drink it on its own, he'll do so just a little bit at a time, otherwise it causes terrible dumping. With the puree method, I'm able to add a whole bottle to one meal and he's fine.
*He has quite the appetite! And how this brings me joy!
*His doctors say he's doing exceptionally well
*His energy depends on where his weight is. But most of the time it's great. Everytime he drops to less than 120Ibs, he does get a little sluggish. This has happened a few times and this is what brought on the puree idea.
*His mother is an absolutely wonderful and great woman. But she worries.A LOT. (Understandably, like any mother would) She was thinking the doctors should be doing more to get his weight up. I've read enough and talked enough to his care team to understand that it's very dificult to gain weight. Particularly since it's only been less than 6 months after the surgery. But when she (my mother in law) said to me that he could die if he keeps on losing weight (he will lose all the necessary electrolytes she said) I picked up on her "worry" energy and basically, got very anxious and upset. I sat my husband down and talked to him. He said to me exactly what you all are saying to me, that it takes time. I totally understand this, I always have. My mother in law means well but my nerves were shot after that conversation with her.
Thank you for getting to the end of my novel I really appreciate it.
Hello, I,understand about weight lost. I had ivor lewis surgery in april 2008. Afterwards I started losing weight slowly.I lost 98 that finally stopped about four or five months ago. I gained back seven pounds, then stopped. I'm happy over that. I use to have dumping syndrome very bad. This is better now. I ate very well.The drs., nor the nutritionist could figure out why I kept losing. I did everything I could to gain.
Iv'e changed cloths size so many times. This season I'm not buying anything, waiting to see what my weight does. I feel it is finally stablelizing.
Good Luck, Sandra0 -
Hi Jackie,
There are very
Hi Jackie,
There are very few of us Esophageal Cancer survivors who are young! I am 36 years old and am a four year survivor. I have been through the gauntlet regarding eating, nausea, weight loss, etc. If you would like to talk, please drop me an e-mail:
dwhite0002@aol.com
Godspeed,
David
Hillsboro, OH0
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