many questions answered, thank you!

barby1954
barby1954 Member Posts: 14
edited March 2014 in Esophageal Cancer #1
I did have alot of questions when I first came to this site. I will have more I am sure before our journey is through.
Michael(my hubby)had a 4 inch long tumor in his esophagus(was not told what stage it was and did not ask). The PET scan showed no limp nodes involved and his doctor(Dr Louis Jacques Fairview Hospital, Edina, MN)said it was contained. Michael is 64 years old, was very active and healthy before the surgery. His doctor said he was a good candidate for the surgery.

The neck, tummy and right lower shoulder are where the doctors went in. I do not remember what type of surgery it was called in fact, I do not remember much in the first few weeks. I now have a notebook and write everything down so I do not forget.
The PET scan also found gallstones and his doctor removed his gallbladder Dr. Jacques did not want Michael to have complications from the stones deciding to pass. After 3 days, he had to have a second surgery because the neck incision started leaking. This put his recovery period longer in the hospital so he was put on a feeding tube for 2 weeks of the 3 weeks he was in the hospital. He was to continue night feedings at home. When he started the night feedings he was getting night sweats but no one could tell us why. His blood sugar level was fine, no temp and he felt fine. Just sweated alot. When he came home, we discontinued the night feedings to see if the night sweats would continue. They still did so we did put him back to night feedings.
Michael is able now to eat three main meals(small versions) plus 2 snacks. I choose foods he has always liked and stayed with high protein or high calorie meals and snacks. He does 2 1/2 cans of the oscal formula at night.
I have found that dairy products do not bother him but if he has sugar on a empty tummy, he will have to go to the bathroom. I now give him a treat at the end of his meal. He likes having one cookie after his lunch or dinner. I have been a hard task master to be sure. His energy level was very low even though he was eating so now we walk 3 to 4 times a day. Each day a little farther than before. He is getting stronger every day. He has been taking an afternoon nap these last few days and that does help with his energy levels at night. I have found having a schedule helps not only me but him in his recovery. He has been home alittle more than a week and we have seen a definite improvement from when he first came home. I was so lost when I came on this site but talking to different people and getting ideas and different solutions to work with have helped so much.
One thing I have learned here is there is light at the end of the tunnel. You just have to believe and have your faith to get there.
Michael's first doctors visit is tommorow and I am hoping his doctor is happy with his progress. I know I am.
Barbara

Comments

  • JimsBrother
    JimsBrother Member Posts: 94
    night sweats
    If he is still on pain medication, that can explain the night sweats. Opiates will cause that. I take Oxycontin for pain and that has been a problem. Mostly at night when sleeping and mostly just my head. I don't tolerate hot weather and even in the winter have a window open in my bedroom. I never had a problem prior to beginning the Oxycontin. I have read most opiates can have this side effect. That may be the cause.

    Is he sweating just around his head, or all over? Reason I ask is, people that suffer from severe sweating of the underarms, hands, and chest area sometimes have a surgery where they clamp a nerve that runs through the chest.

    The endoscopic instrument is used to clamp the T3 to T4 segment of the sympathetic nerve node responsible for the cause of excessive sweating.

    I am thinking if this nerve was aggrivated during the surgery, it may trigger more sweating than normal. That would be something only a doctor could answer. It would be a good idea to contact your doctor. He may have medications that will help with this and the other problems you mentioned.

    My brother is the one that was diagnosed with EC and he is just beginning his journey so I can't tell you much more about your other post-op related things.

    I wish you the best and hope as time passes he will have less and less problems.
  • sandy1943
    sandy1943 Member Posts: 824
    I didn't experience night
    I didn't experience night sweats; but I can relate to his reaction to food.Just the thought of food made me nauseated. I would put two tablespoons of each food on my plate then try to force myself to eat it. I couldn't drink ensure or boost. It also made me sick, but my husband insisted I take swallows with my meds. When I did eat something , my stomach protested. I would feel sick and sometimes had a little pain for about 15 min.. I read yesterday where someone said they grazed all day. He does need to try to eat small amount mini meals( 5 or 6)a day . It does take time for the new stomach to adjust. Most of the time I can eat anything now--just smaller amounts. Everything we go thru is worth the life we're given. It will be 3 yrs. since I was diagnosed and I'm now cancer free! God has been so good to me. His grace is sufficient!
    There will be others with a lot more info than I had . You are in the right place to get answers from people who've been in your shoes.
    Sandra
  • barby1954
    barby1954 Member Posts: 14

    night sweats
    If he is still on pain medication, that can explain the night sweats. Opiates will cause that. I take Oxycontin for pain and that has been a problem. Mostly at night when sleeping and mostly just my head. I don't tolerate hot weather and even in the winter have a window open in my bedroom. I never had a problem prior to beginning the Oxycontin. I have read most opiates can have this side effect. That may be the cause.

    Is he sweating just around his head, or all over? Reason I ask is, people that suffer from severe sweating of the underarms, hands, and chest area sometimes have a surgery where they clamp a nerve that runs through the chest.

    The endoscopic instrument is used to clamp the T3 to T4 segment of the sympathetic nerve node responsible for the cause of excessive sweating.

    I am thinking if this nerve was aggrivated during the surgery, it may trigger more sweating than normal. That would be something only a doctor could answer. It would be a good idea to contact your doctor. He may have medications that will help with this and the other problems you mentioned.

    My brother is the one that was diagnosed with EC and he is just beginning his journey so I can't tell you much more about your other post-op related things.

    I wish you the best and hope as time passes he will have less and less problems.

    thank you
    Thanks you Jim's brother. I will check when Michael sees his doctor next
  • barby1954
    barby1954 Member Posts: 14
    sandy1943 said:

    I didn't experience night
    I didn't experience night sweats; but I can relate to his reaction to food.Just the thought of food made me nauseated. I would put two tablespoons of each food on my plate then try to force myself to eat it. I couldn't drink ensure or boost. It also made me sick, but my husband insisted I take swallows with my meds. When I did eat something , my stomach protested. I would feel sick and sometimes had a little pain for about 15 min.. I read yesterday where someone said they grazed all day. He does need to try to eat small amount mini meals( 5 or 6)a day . It does take time for the new stomach to adjust. Most of the time I can eat anything now--just smaller amounts. Everything we go thru is worth the life we're given. It will be 3 yrs. since I was diagnosed and I'm now cancer free! God has been so good to me. His grace is sufficient!
    There will be others with a lot more info than I had . You are in the right place to get answers from people who've been in your shoes.
    Sandra

    Hi Sandra,
    Thank you for

    Hi Sandra,
    Thank you for answering me. I have other questions and maybe you felt this also.
    Michael gets hot flashes now. Never did before so I do not know if I should ask his doctor. I also found benecalorie. I have started adding to food he will eat but he is so weak. Does this pass or am I doing something wrong?
    Thank you!
  • JimsBrother
    JimsBrother Member Posts: 94
    barby1954 said:

    Hi Sandra,
    Thank you for

    Hi Sandra,
    Thank you for answering me. I have other questions and maybe you felt this also.
    Michael gets hot flashes now. Never did before so I do not know if I should ask his doctor. I also found benecalorie. I have started adding to food he will eat but he is so weak. Does this pass or am I doing something wrong?
    Thank you!

    Ask the doctor
    Barby,

    Please ask your doctor about the night sweats and the hot flashes. Any changes he experiences are important and should always be discussed with the doctor. Again, you could be dealing with a side effect of a medication or the combination oe medications. I have had that from the pain medication also.

    You didn't mention if he is taking pain meds or any others, but it is very common to have side effect from medication. The best thing if it is from the meds, they will go away as the medication is reduced in dosage or no longer needed and stopped.

    The cancer medications are very powerful drugs and will effect everyone differently, many times they are tolerable. Sometimes a side effect is an idication of an allergy, so for that reason, it's always good to tell the doctor and he can give you the best advice.

    Good luck.
    Rob

    Rob
  • sandy1943
    sandy1943 Member Posts: 824
    barby1954 said:

    Hi Sandra,
    Thank you for

    Hi Sandra,
    Thank you for answering me. I have other questions and maybe you felt this also.
    Michael gets hot flashes now. Never did before so I do not know if I should ask his doctor. I also found benecalorie. I have started adding to food he will eat but he is so weak. Does this pass or am I doing something wrong?
    Thank you!

    Like I said before, I didn't
    Like I said before, I didn't have the sweats.It needs to be discussed with the dr. As far as weakness. I did get extremely weak. I wasn't eating enough or getting enough exercise. I had to go on oxygen for a couple of months---this was after surgery. I started getting depressed. One day my daughter took matters in her hands. She joined us both up at the gym. This was about four months after surgery and I was off of oxygen. I started doing a little, but it helped lift the depresion, and my appetite increased. Even thou I never feel hunger, I love to eat, even foods I didn't care for before. My biggest problem is weight loss. I've lost 98 pds after surgery with no explanation. I have maintained my weight for three mths now. I'm hoping it is a turn around.
    I think it is good to add extra nutrition to foods. I couln't use milk products because of the dumping syndrome, But if he can , give him shakes-carnation breakfast, icecream, peanut butter etc. Some of the caregivers on here have some great ideas on nutricious foods. It is so important to eat 5 or 6 small meals a day. I wouldn't do it and that's why I got So weak.
    My surgery was in May 2008 and I do fine with food most of the time.I have to take smaller bites-do a lot of chewing and eat less but more often. we all have to adjust to a new stomach and a new way of eating.

    Take Care,
    Sandra
  • barby1954
    barby1954 Member Posts: 14

    Ask the doctor
    Barby,

    Please ask your doctor about the night sweats and the hot flashes. Any changes he experiences are important and should always be discussed with the doctor. Again, you could be dealing with a side effect of a medication or the combination oe medications. I have had that from the pain medication also.

    You didn't mention if he is taking pain meds or any others, but it is very common to have side effect from medication. The best thing if it is from the meds, they will go away as the medication is reduced in dosage or no longer needed and stopped.

    The cancer medications are very powerful drugs and will effect everyone differently, many times they are tolerable. Sometimes a side effect is an idication of an allergy, so for that reason, it's always good to tell the doctor and he can give you the best advice.

    Good luck.
    Rob

    Rob

    ask questions
    Hi Rob,
    Michael has his first doctors appointment since his surgery on Wednesday and will be asking lots of questions. He is eating a little more now than before but still is weak. If he did not sweat so much during the night feedings I would restart them but will wait until his doctor makes that call. I am adding calories when I can and extra protein when I can. Gosh it is hard and I wish I could feel his pain instead. He has stopped taking all pain medication on Sunday last. His pain level is 0 at this point. He does not start chemo for a while but know that will be another game to play. I have faith he will win this battle. Thank you for your support. It is good to talk to others who are going through this.
    Take care,
    Barby
  • This comment has been removed by the Moderator