extreme weight loss post esopgagectomy

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My husband, 62, was diagnosed with stage 3C EC in December, 2010. He underwent chemo & radiation, then had surgery in June. 6 month CT scan was normal (good news). The problem is that he cannot gain weight, in fact, he is losing weight. He is now down to 150lbs. Some food stays in his stomach, with no issue, but probably 80% of the time, he experiences "dumping", and has stomach pain and instant diarrhea. As a point of reference, he is 6'4, and weighed 220 lbs when this whole process started. needless to say, we are thrilled that the tumor is gone, and it appears that the cancer is not present. But at this point, his quality of life, as it relates to eating, sucks. His energy is pretty good, although he tires easily. Does anyone here have post surgery advice on this issue? I'm concerned that if he becomes ill, he won't be strong enough to fight off a common cold.

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  • NikiMo
    NikiMo Member Posts: 342
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    Sugar and dairy
    Hi,

    My husband had an Ivor Lewis in September. He finds that sugar and dairy (milk,cream,ice cream....not cheese or eggs) will make him very sick. Has your husband tried cutting those things out of his diet? My husband can't eat or drink anything with more than 3 grams of sugar (sugar which naturally occurs in fruits is ok, but no added sugars). Also no fried foods! He is not starting to be able to eat larger quantities and I am hoping he will start gaining soon, he is down 20 pounds since surgery, but he has leveled off at 168. He started at 195, was down to 188 after pre-op Chemo, then 168 after post-op Chemo (and a bout of sepsis).

    Best wishes,
    Niki
  • BMGky
    BMGky Member Posts: 621
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    Post op eating can be a challenge
    My husband lost some 80 pounds (most of which he needed to lose but not the way it happened!) He, too, is tall and kept losing weight. You didn't mention a feeding tube. My husband came home with a supplemental feeding tube as he could not get enough nutrition by just food. He kept losing weight. Dumping--so unpleasant. He still cannot throw up.

    It took several months to stabilize his weight. He now stays at about 195 pounds, but we have to watch. Let him not eat correctly, and he will drop weight immediately.

    We went through just plain old trial and error. Still do. However, at about seven months post op, food started to taste good, and life began to look a lot better. The dietary changes, once controlled, while difficult at times even now when he forgets and eats too much or the wrong thing, are really doable. He is working fulltime. His strength is improving. His lungs are stronger. We are thankful.

    Others with better knowledge can give you more insight. Just wanted to encourage you that it does get better.

    BMGky
  • TerryV
    TerryV Member Posts: 887
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    Your husband sounds like my Nick
    Welcome to one of the most informed, knowledgable and caring EC forums on the 'Net.

    My husband, Nick, was diagnosed T3N1M0 May 2011 and had THE surgery Sept 2011. Nick weighed 225 preSurgery and 180 postSurgery. He is still in the trial and error phase of eating and he too says it sucks :) Up until 3 days ago, Nick was able to drink milk and eat ice cream. Now that causes immediate problems. Not sure what has changed.

    You are right about not being to fight off the common cold. And boy, does just a cold wreck havoc with him. He's down with a cold as hard as I am with a bad case of flu. Nick also has energy issues. When he feels good, it's great, but it doesn't take much to wear him out. Part of that is due to the chemo/rads, part of due to being inactive while feeling so sick.

    Be sure your husband eats slowly and chews thoroughly. If you believe certain foods might be causing the problems, try starting a food journal.

    Time will heal - that's what we're counting on. Wishing us all the time to find out :)

    Love & Hugs to you!

    Terry
  • paul61
    paul61 Member Posts: 1,391 Member
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    Your husband's issues are fairly common
    The issues you are experiencing are very common for those of us who have had a “re-arranged” digestive system. It takes time to get used to our new plumbing.

    Two things I can tell you from experience. First, it does get better and he will eventually be back to eating most of the same foods he enjoyed in the past. Second, it does take time and during that time he will lose some weight before his diet stabilizes and he regains some of the weight he lost.

    I will include some references to web sites that contain helpful information. You may have already gotten these from the nutritionist at the hospital where you had your surgery but just in case.

    A diet guide for people who have had an esophagectomy:

    Esophagectomy Diet

    A diet guide to avoid “dumping syndrome”

    Dumping Syndrome Diet

    A high protein / High calorie diet for recovering cancer survivors

    High Protein Diet


    These are some “rules of eating” that helped me when I was recovering.

    1. Avoid foods that have high concentrations or sugar or simple carbohydrates
    2. Eat seven to eight small meals a day
    3. Eat slowly and chew all food very thoroughly
    4. Rest for approximately 30 minutes after eating (in an upright position)
    5. Drink minimal liquid during meals ( drink liquids approximately an hour after eating)
    6. High calorie supplement drinks (like Ensure) must be sipped slowly over a long period of time.
    7. Make sure you have protein with your first meal of the day (e.g. eggs and peanut butter)


    I understand that food supplements like BeneCalorie can be mixed in many foods and add calories without the “over full” feeling.

    BeneCalorie

    I hope these suggestions are helpful. It does take time for your body to adjust to the changes from surgery.


    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!
  • embaum
    embaum Member Posts: 3
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    NikiMo said:

    Sugar and dairy
    Hi,

    My husband had an Ivor Lewis in September. He finds that sugar and dairy (milk,cream,ice cream....not cheese or eggs) will make him very sick. Has your husband tried cutting those things out of his diet? My husband can't eat or drink anything with more than 3 grams of sugar (sugar which naturally occurs in fruits is ok, but no added sugars). Also no fried foods! He is not starting to be able to eat larger quantities and I am hoping he will start gaining soon, he is down 20 pounds since surgery, but he has leveled off at 168. He started at 195, was down to 188 after pre-op Chemo, then 168 after post-op Chemo (and a bout of sepsis).

    Best wishes,
    Niki

    thanks
    I'm so impressed by all the responses! Its encouraging to know that others are going through this and surviving! I think we need to address the sugar issue...
  • embaum
    embaum Member Posts: 3
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    paul61 said:

    Your husband's issues are fairly common
    The issues you are experiencing are very common for those of us who have had a “re-arranged” digestive system. It takes time to get used to our new plumbing.

    Two things I can tell you from experience. First, it does get better and he will eventually be back to eating most of the same foods he enjoyed in the past. Second, it does take time and during that time he will lose some weight before his diet stabilizes and he regains some of the weight he lost.

    I will include some references to web sites that contain helpful information. You may have already gotten these from the nutritionist at the hospital where you had your surgery but just in case.

    A diet guide for people who have had an esophagectomy:

    Esophagectomy Diet

    A diet guide to avoid “dumping syndrome”

    Dumping Syndrome Diet

    A high protein / High calorie diet for recovering cancer survivors

    High Protein Diet


    These are some “rules of eating” that helped me when I was recovering.

    1. Avoid foods that have high concentrations or sugar or simple carbohydrates
    2. Eat seven to eight small meals a day
    3. Eat slowly and chew all food very thoroughly
    4. Rest for approximately 30 minutes after eating (in an upright position)
    5. Drink minimal liquid during meals ( drink liquids approximately an hour after eating)
    6. High calorie supplement drinks (like Ensure) must be sipped slowly over a long period of time.
    7. Make sure you have protein with your first meal of the day (e.g. eggs and peanut butter)


    I understand that food supplements like BeneCalorie can be mixed in many foods and add calories without the “over full” feeling.

    BeneCalorie

    I hope these suggestions are helpful. It does take time for your body to adjust to the changes from surgery.


    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!
    thanks
    All of the posts have great info, and I am very grateful you've taken the time to respond. The info has already given me some ideas foot change that I hope are helpful!
  • BobHaze
    BobHaze Member Posts: 162 Member
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    embaum said:

    thanks
    All of the posts have great info, and I am very grateful you've taken the time to respond. The info has already given me some ideas foot change that I hope are helpful!

    Beware of sugar
    I had an MIE in Sept. 11. My wife, Sargent Carol (lol) had me religiously follow the UPMC post-esophagectomy diet, which eases one back into a normal diet. As others have said, I now eat pretty much the same things I was eating before the cancer arrived, just not as much and I have to remember to eat slowly and chew thoroughly. As others have also said, I have to be very careful about sugars, and if I forget there are diarreah and/or severe stomach cramping consequences.

    The documents Paul recommended have been in our kitchen since before I came home from the hospital, and they have been really useful. Just remember that lots of people have gone through, and are right now going through, the same things your husband is. It'll take a certain amount of trial and error, and like most things in life different people have different tolerances for certain foods. But I now often have a bottle of beer in the afternoon, I can now have a few spoonfuls of ice cream from time to time (as long as I already have food in my stomach), and I definitely have to remember to eat something every 3 hours or so.

    I'm 62 yoa and I'm 6'0" tall, I weighed 195 before surgery and now hover around 175. I started working out in the gym again last week, and I'm planning to ride a 195 mile, 2 day bicycle ride fundraiser for the Dana Farber Cancer Institute in Boston in August. I'm only able to maintain 175 now, and I'm concerned as to how I'll be able to do it when I'm riding my bicycle a couple of hundred of miles a week in training. But what I've learned so far is that it can be done - it's just a matter of trying different combinations of things with lots of calories and following "the rules" about dumping, which really and truly sucks. I even ended up in the ER in November with a severe dumping incident, where I was so dizzy I couldn't walk or even sit up straight, my heart was racing, etc., and I thought I was having a stroke. But it turned out to be dumping and we chalked it up to a learning experience.

    So I'd advise patience, and you and your husband will figure this thing out. There are definitely down sides to gastric surgery, but when I occasionally feel sorry for myself I remember something I've read in William Marshall's posts: it's better than having cancer!

    Good luck. This WILL be OK!

    Bob
    T1aN0M0
    dx 8/3/11
    MIE at Mass General Hospital 9/23/11
  • sandy1943
    sandy1943 Member Posts: 824
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    I had treatment and then
    I had treatment and then surgery in May 2008. During this time I didn't lose any weight. After surgery I started losing which is normal, but I kept on until I had lost 99 pds. After consultations, diet changes etc. my doctors all agreed my metabolizm must have changed. I ate good, felt good and was healthy. I have gained 10 pds. back but am at a stand still. I did experience bad dumping, but that is better now.
    Paul listed things we all had to learn and they do help. My life is different now but it is very good, and eating is also so good!
    Sandra
  • nickgunboat
    nickgunboat Member Posts: 35
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    Hi
    I too experienced a long period of dumping syndrome as well as diarrhea post surgery. This went on for maybe a year before things started clearing up. As others have said, certain foods like dairy will trigger the unwanted response. I also had an additional component to my recovery, which may or may not be applicable to your situation. I was prescribed liquid Roxicet, a pretty potent pain killer, post surgery. There was some rib damage that caused me a great deal of pain, so I took this stuff daily. After a year or so I finally realized I was addicted and got off it. Not fun but worth it. My ribs still hurt like hell but my dumping and diarrhea symptoms went almost completely away. I still have the occasional dumping issue, but far less than when I was on the Cet. So as I said, this may or may not be a factor, but just wanted to throw that out there. My Onc told me that he was able to get another of his patients off this med and they had the same positive results.

    Kirk
  • FunGuy
    FunGuy Member Posts: 20
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    Before my partial
    Before my partial esophagectomy in 2008 I was a pretty muscular and athletic 205. Used to average over 20 ppg in city league basketball and played adult baseball hitting cleanup and mashing home runs. Came home from the first surgery with feeding tube and dropped to about 150 three months after.

    After my second surgery in July 2011 I got as low as 140 in mid October. Now I hover around 155 and have resolved that that will be my MO for the rest of my life. I still can't eat much and still have esophagus pain which hinders my desire to eat (like the past two days).
  • Rick0311
    Rick0311 Member Posts: 38
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    Sugar, Dairy and Nuts
    I too have problems with dairy, cheese, nuts, chocolate and let’s not forget sugar. All of the basic food groups that I used to love. I drank coffee most of my life and cannot stand the taste of it now and the same with alcohol of any kind. I had surgery in August and I am still learning how and what to eat. I keep hoping that some of the items I do not tolerate now will come back but I am not holding my breath. Sugar is the worst culprit. It doesn’t take but a very small amount and I am in pain. It starts with a burning sensation and quickly turns into cramps and abdominal pain. The dairy is very similar but with other problems within about 15 to 30 minutes. We have been following the guidelines but also some trial and error testing. Just remember to do the trial and error in small amounts. White rice, eggs, toast, potatoes and very tender pork and chicken seem to work very well for me. I am 5’9” and weighed 225 before diagnoses and now five months after surgery I weigh 165. As many have said, it is important to eat 6 to 8 small meals a day. The trick for me is something my surgeon told me, “Eat until you are still hungry” I know it sounds a little corny but if I stop before I feel full or feel it in my throat I have much better results. I do eat more often but I can deal with that.

    Richard (Rick) Watson
    Neoga, Illinois

    DX – 0411
    EC – T2N2M0
    Chemo – Cisplatin, four treatments
    5FU, four treatments, five days times 24 hours each time
    MIE – 083111
    Barnes Hospital, St Louis
    Dr Brian Meyer
    NED