Recovery

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grand4kids
grand4kids Member Posts: 2
in Esophageal Cancer #1
My husband had surgery Dec. 21, 2011 for stage 2 esophageal cancer. They removed the bad part of the esophagus and cut his stomach and pulled it up to tie into the good part of the esophagus. 23 limphnodes were removed and all came back neg. He is 6'1" and weighted 182 at the start of his whole ordeal (6/11) now weights 138. He has a feeding tube in his small instestine. With in the past couple of weeks he started having the dry heaves and has a lot of (mucus/flem)coming up in his throat. Seems the dry heaves are more frequent the last week. Was wondering if anyone else is or has experienced this and what if anything can be done and how long we can expect this to go on. He has very little hunger for food. Any information would be extremly helpful, it just hurts me so much to see him this way and nothing I can do for him.

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  • BMGky
    BMGky Member Posts: 621
    #2
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    Congratulations for having the surgery.
    Did you husband also have the combined chemo and radiation before the surgery? Also, what type of surgery did he have, that is, a minimally invasive surgery or an extensive surgery such as the Ivor Lewis. This information can maybe give some insight as to the possible post op issues the patient has to deal with.

    Have you mentioned this increased phlegm/mucous to his oncologist and/or surgeon? They may have thoughts as well.

    My husband had his surgery in April 2010 and came home with a j-tube. He had an Ivor Lewis surgery and we had all sorts of issues with eating, dumping, dry heaves, cramps, no appetite, food tasting bad, etc. Learned to separate food and drink. Learned to avoid sweets. Learned to limit intake. Dairy products can be iffy. Learned that some foods like rolls, mashed potatoes, etc., don't like his "new" stomach.

    He had lots of weight loss. It became very discouraging. We kept a daily log of what happened with food and with pain. We found some patterns. Also, the jtube feedings played havoc with sugar levels and had to get a less sugary formula.

    That being said, slowly, surely over a period of 6 to 7 months post op, his appetite returned. He learned to eat with better choices. Loves steak. When he forgets, he will have a stomach ache or dumping but that, too, passes.

    He now works fulltime. Eats pretty much anything he wants, with care. Is truly enjoying himself.

    Others who know more will post. Just letting you know it does get better. BMGky
  • BobHaze
    BobHaze Member Posts: 161 Member
    #3
    Options
    BMGky said:

    Congratulations for having the surgery.
    Did you husband also have the combined chemo and radiation before the surgery? Also, what type of surgery did he have, that is, a minimally invasive surgery or an extensive surgery such as the Ivor Lewis. This information can maybe give some insight as to the possible post op issues the patient has to deal with.

    Have you mentioned this increased phlegm/mucous to his oncologist and/or surgeon? They may have thoughts as well.

    My husband had his surgery in April 2010 and came home with a j-tube. He had an Ivor Lewis surgery and we had all sorts of issues with eating, dumping, dry heaves, cramps, no appetite, food tasting bad, etc. Learned to separate food and drink. Learned to avoid sweets. Learned to limit intake. Dairy products can be iffy. Learned that some foods like rolls, mashed potatoes, etc., don't like his "new" stomach.

    He had lots of weight loss. It became very discouraging. We kept a daily log of what happened with food and with pain. We found some patterns. Also, the jtube feedings played havoc with sugar levels and had to get a less sugary formula.

    That being said, slowly, surely over a period of 6 to 7 months post op, his appetite returned. He learned to eat with better choices. Loves steak. When he forgets, he will have a stomach ache or dumping but that, too, passes.

    He now works fulltime. Eats pretty much anything he wants, with care. Is truly enjoying himself.

    Others who know more will post. Just letting you know it does get better. BMGky

    Food journal
    I agree with BMGky. I had an MIE, and at first I was lactose intolerant (never was before) and had lost the taste for several foods I'd liked before the surgery. Dumping symptoms (mainly cramps and diarreah) were common and were a real bummer. So my wife started keeping a journal of everything I ate, and in short order we started to see paterns of what was causing me problems and what wasn't. She also recorded the approximate calories of everything I ate and drank, to help stabilize my weight. After 3 or 4 months the lactose intolerance went away and my weight stabilized and then started back up, and now I'm hanging in there at about 20 lbs less than before the surgery.

    So I'd advise that you keep an accurate journal, have him eat what works and avoid what doesn't, and definitely be careful of sugars - our poor little redesigned tummies just can't handle sugars. And also definitely talk to his surgeon and gastroenterologist - they've most likely seen whatever is bothering him before and can offer some relief.

    And try not to let the eating problems get you or him down. They really will get better.

    Bob
    T1aN0M0
    dx 8/3/11
    MIE 9/23/11
  • Unknown
    Unknown
    #4
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    This comment has been removed by the Moderator
  • Jessi1990
    Jessi1990 Member Posts: 14
    #5
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    BMGky said:

    Congratulations for having the surgery.
    Did you husband also have the combined chemo and radiation before the surgery? Also, what type of surgery did he have, that is, a minimally invasive surgery or an extensive surgery such as the Ivor Lewis. This information can maybe give some insight as to the possible post op issues the patient has to deal with.

    Have you mentioned this increased phlegm/mucous to his oncologist and/or surgeon? They may have thoughts as well.

    My husband had his surgery in April 2010 and came home with a j-tube. He had an Ivor Lewis surgery and we had all sorts of issues with eating, dumping, dry heaves, cramps, no appetite, food tasting bad, etc. Learned to separate food and drink. Learned to avoid sweets. Learned to limit intake. Dairy products can be iffy. Learned that some foods like rolls, mashed potatoes, etc., don't like his "new" stomach.

    He had lots of weight loss. It became very discouraging. We kept a daily log of what happened with food and with pain. We found some patterns. Also, the jtube feedings played havoc with sugar levels and had to get a less sugary formula.

    That being said, slowly, surely over a period of 6 to 7 months post op, his appetite returned. He learned to eat with better choices. Loves steak. When he forgets, he will have a stomach ache or dumping but that, too, passes.

    He now works fulltime. Eats pretty much anything he wants, with care. Is truly enjoying himself.

    Others who know more will post. Just letting you know it does get better. BMGky

    Hi, my name is Jessi and my
    Hi, my name is Jessi and my grandfather is have surgery next Monday. Everything that everyone has said has been very helpful and I am grateful for this website and the people on it.
    There is a term that I keep seeing and I am unsure of its meaning when relating to esophageal cancer...What does dumping mean?
  • paul61
    paul61 Member Posts: 1,391 Member
    #6
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    Jessi1990 said:

    Hi, my name is Jessi and my
    Hi, my name is Jessi and my grandfather is have surgery next Monday. Everything that everyone has said has been very helpful and I am grateful for this website and the people on it.
    There is a term that I keep seeing and I am unsure of its meaning when relating to esophageal cancer...What does dumping mean?

    Dumping Syndrome
    Jessi,

    Dumping Syndrome is a common (and luckily typically short lived) side effect of gastric surgery.

    After surgery; when we are still getting used to our new modified digestive system, sometimes food moves from our stomach to our small intestine too quickly. This causes cramps, dizziness, and diarrhea. Common foods that cause this issue early on are sugar, simple carbohydrates, and milk products. It does improve over time.

    Here is a document that describes the syndrome:

    Dumping Syndrome Diet

    It does gradually get better a few months after surgery. If your grandfather follows the diet that the surgeon will give him after surgery and the recommendations in this document it should be manageable.

    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
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Jessi1990
    Jessi1990 Member Posts: 14
    #7
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    paul61 said:

    Dumping Syndrome
    Jessi,

    Dumping Syndrome is a common (and luckily typically short lived) side effect of gastric surgery.

    After surgery; when we are still getting used to our new modified digestive system, sometimes food moves from our stomach to our small intestine too quickly. This causes cramps, dizziness, and diarrhea. Common foods that cause this issue early on are sugar, simple carbohydrates, and milk products. It does improve over time.

    Here is a document that describes the syndrome:

    Dumping Syndrome Diet

    It does gradually get better a few months after surgery. If your grandfather follows the diet that the surgeon will give him after surgery and the recommendations in this document it should be manageable.

    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
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
    Thank you Paul! That was
    Thank you Paul! That was very helpful! Now I'm consurned because all he does now is drink egg nog and eat sweets! It's going to be a major change for him.
  • grand4kids
    grand4kids Member Posts: 2
    #8
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    unknown said:

    This comment has been removed by the Moderator

    Here we go again
    Well just came back from a CT scan and Dr. didn't have very good news. 3 new spots have showed up just 1 day shy of 2 months since surgery. 2 on my husbands lungs and 1 on his liver. Going to go in and do a biopsy on 1 from his lung next week. Here we thought he was cancer free since 23 limpnodes should neg. It could still be nothing but..
    I appreciate everyones encouraging words and adavise. Does anyone have advise on this and what we are up against now?
  • jan dudley
    jan dudley Member Posts: 1
    #9
    Options
    BMGky said:

    Congratulations for having the surgery.
    Did you husband also have the combined chemo and radiation before the surgery? Also, what type of surgery did he have, that is, a minimally invasive surgery or an extensive surgery such as the Ivor Lewis. This information can maybe give some insight as to the possible post op issues the patient has to deal with.

    Have you mentioned this increased phlegm/mucous to his oncologist and/or surgeon? They may have thoughts as well.

    My husband had his surgery in April 2010 and came home with a j-tube. He had an Ivor Lewis surgery and we had all sorts of issues with eating, dumping, dry heaves, cramps, no appetite, food tasting bad, etc. Learned to separate food and drink. Learned to avoid sweets. Learned to limit intake. Dairy products can be iffy. Learned that some foods like rolls, mashed potatoes, etc., don't like his "new" stomach.

    He had lots of weight loss. It became very discouraging. We kept a daily log of what happened with food and with pain. We found some patterns. Also, the jtube feedings played havoc with sugar levels and had to get a less sugary formula.

    That being said, slowly, surely over a period of 6 to 7 months post op, his appetite returned. He learned to eat with better choices. Loves steak. When he forgets, he will have a stomach ache or dumping but that, too, passes.

    He now works fulltime. Eats pretty much anything he wants, with care. Is truly enjoying himself.

    Others who know more will post. Just letting you know it does get better. BMGky

    esaphogus removal
    my friend had the surgery in august, all food still taste terrible. Did you have this problem?
  • Unknown
    Unknown
    #10
    Options
    grand4kids said:

    Here we go again
    Well just came back from a CT scan and Dr. didn't have very good news. 3 new spots have showed up just 1 day shy of 2 months since surgery. 2 on my husbands lungs and 1 on his liver. Going to go in and do a biopsy on 1 from his lung next week. Here we thought he was cancer free since 23 limpnodes should neg. It could still be nothing but..
    I appreciate everyones encouraging words and adavise. Does anyone have advise on this and what we are up against now?

    This comment has been removed by the Moderator
  • Guigna
    Guigna Member Posts: 63
    #11
    Options
    grand4kids said:

    Here we go again
    Well just came back from a CT scan and Dr. didn't have very good news. 3 new spots have showed up just 1 day shy of 2 months since surgery. 2 on my husbands lungs and 1 on his liver. Going to go in and do a biopsy on 1 from his lung next week. Here we thought he was cancer free since 23 limpnodes should neg. It could still be nothing but..
    I appreciate everyones encouraging words and adavise. Does anyone have advise on this and what we are up against now?

    ouch grand4kids
    I think you have to keep fighting. My DH also has. new tumors and he's in the middle of chemo and radiation. Significantly, the chemo was going to happen anyway even if they hadn't found the tumors.. My dh had 50 lymph nodes removed and only 1 had cancer, dead cancer, for whatever that is worth. but clearly, there was more, or the guys wouldn't have new stuff now.
    Please keep us posted. Your guy and mine are in the same boat.
  • BobHaze
    BobHaze Member Posts: 161 Member
    #12
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    jan dudley said:

    esaphogus removal
    my friend had the surgery in august, all food still taste terrible. Did you have this problem?

    Tastes
    Jan:

    Myself, I haven't had that problem exactly, although I used to love coffee and looked forward to a glass of red wine with dinner every night, and now I can't drink either one. When I've tried them I got a little acidy stomach, but mostly they just don't taste at all good to me anymore. But on the bright side, I've discovered the interesting and varied world of teas, instead of coffee, and I find I really like several. And white wine is OK, just not red for whatever reason. I can't eat sugars at all, so most chocolate is out (major bummer!) and ice cream has to be sugar-free, but those are both because of dumping syndrome, not that I don't like them.

    I hope your friend is able to find things that he/she likes! Yikes- "all food still tastes terrible" sounds terrible! Hav they tried contacting the dieticians at the Cancer Center? My wife worked closely with them when I first had my surgery and they were a big help: avoiding dumping problems, maintaining weight, and figuring out what I liked and could tolerate. I hope they're able to figure it out. We all have a variety of problems and adjustments following this major surgery even when, as was my case, there's no chemo or radiation involved. But your friend is the most extreme I can recall hearing about. Fingers crossed for them.

    Bob
    T1aN0M0
    dx 8/3/11
    MIE 9/23/11 at Massachusetts General Hospital
  • monica_sss
    monica_sss Member Posts: 54
    #13
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    grand4kids said:

    Here we go again
    Well just came back from a CT scan and Dr. didn't have very good news. 3 new spots have showed up just 1 day shy of 2 months since surgery. 2 on my husbands lungs and 1 on his liver. Going to go in and do a biopsy on 1 from his lung next week. Here we thought he was cancer free since 23 limpnodes should neg. It could still be nothing but..
    I appreciate everyones encouraging words and adavise. Does anyone have advise on this and what we are up against now?

    This isn't the news that any
    This isn't the news that any loved one wants to hear, but it doesn't mean that it's the end of the road either. Keep on keepin' on and doing what you do to encourage him and maintain his comfort. I pray and hope for the best for you.

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