Still so sick

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golaine
golaine Member Posts: 7
in Head and Neck Cancer #1
My husband finished treatment for a tumor on the base of his tongue with it in the lymph on either side. It has been 2 1/2 months and he is still not able to swallow so is still on a feeding tube. It makes him nauseas if the flow is to high so keeps it low, meaning he is not getting enough nutrition. Then he started to get a sore throat, which was the first symptom of his cancer. We are worried and feel alone. His GP doesn't deal with cancer and we are not sure who else to contact.

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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    question
    How did he get into the system to start the treatment? Who did the workup? My go-to guy has always been the ENT Oncologist, but maybe there are other points of entry. Obviously, someone like this is going to have to intervene.

    Not to panic. It's really early for this symptom to be anything but a short-term treatment related problem rather than a reocurrance. The eating problem is the main thing, and nutrition needs dealt with. The sore throat thing will work itself out.

    Welcome to the group. Its never fun to have to join.

    Pat
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    I had to keep my drip rate
    I had to keep my drip rate low, but I just stayed hooked up longer so that I got enough nutrition in. Even if it was 13 hours of 6 cans drilling in slowly.
  • ratface
    ratface Member Posts: 1,337 Member
    #4
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    sweetblood22 said:

    I had to keep my drip rate
    I had to keep my drip rate low, but I just stayed hooked up longer so that I got enough nutrition in. Even if it was 13 hours of 6 cans drilling in slowly.

    It's so early yet
    This type of cancer is tough. I have a BIL who just was diagnosed with colon cancer, is already been operated on, and is contemplating returning to work next week. When you throw in chemo, and radiation, and malnutrition things get a little hard. You are expecting too much, to soon. I had my feeding tube in for 9 months. Nutrition is key here!
  • golaine
    golaine Member Posts: 7
    #5
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    still so sick
    Sorry. I made a mistake. I meant he has developed an ear ache. This is what was his initial symptom was. He was diagnosed by an ENT, not ENT oncologist. Of course it would be ages before we could get in. Do you think I should go to the Cancer Clinic and ask where we should go for help?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
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    golaine said:

    still so sick
    Sorry. I made a mistake. I meant he has developed an ear ache. This is what was his initial symptom was. He was diagnosed by an ENT, not ENT oncologist. Of course it would be ages before we could get in. Do you think I should go to the Cancer Clinic and ask where we should go for help?

    Time to be patient with the situation
    No need to panic. The odds of this being related to reoccurance are pretty low. If an ENT has been involved, I'd start there. I'm assuming his treatment was radiation? No matter what, there should be some kind of routine follow-up planned already. Like maybe a PET scan? And there should be routine follow-up office visits and exams by the ENT. One of these would go a long way to reassure you both regarding this concern. Many do their first follow up scan, either CT or PET at three months.

    Pat
  • Pam M
    Pam M Member Posts: 2,196
    #7
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    golaine said:

    still so sick
    Sorry. I made a mistake. I meant he has developed an ear ache. This is what was his initial symptom was. He was diagnosed by an ENT, not ENT oncologist. Of course it would be ages before we could get in. Do you think I should go to the Cancer Clinic and ask where we should go for help?

    Better Safe Than Sorry
    I would surely call the Cancer Clinic. Don't know what your insurance situation is, but I do know that my cancer docs "cost" at least twice what my PCP does for a visit. I do recall that I had issues at about the same time out (not long before my scans) that turned out to be just a part of my body healing and readjusting, I guess. My ENT was also more pricey than my PCP, but I think I'd be more comfortable seeing the ENT if I were nervous. When I had my "concerns" at that time, I shared them with my radiologist (my "lead" guy), unless I had an imminent appointment with my MO or ENT. Do well.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
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    I agrre with the others
    You should have follow ups with at least the Radiation oncologist and a PET Scheduled. You are also panicking to soon but I understand. My husbands first symtom was the ear pain as well and he went miss diagnosed for three yeras by the ENT. He also had follow ups with ENT oncologist, radiation oncoloist and chemo oncologist 30 days from treatment ending and a PET 3 months from finish. Call you cancer center for recommendation on who to see. My husband's doctors always got him in ASAP because they know how worrisome things can be. But, all cancer doctors aren't that compassionate. We have called several times since treatment ended in August and never were put off for months. In fact because his radiation doctor paid attention to our concerns over balance and memory problems they found he had water on the brain which caused the problems.

    As for nutrition, do not worry about getting off anytime soon but make sure he gets the 2000 calories it is vital to recovery and healing. Do you have a med company delivering a formula? If so they should have a nutritionist that helps you figure out the rate and timing so that he gets what he needs. My husband does 7 cans starting at 4 PM but right after treatment I had to slow it down and start at 2pm and leave him on until 10 or 11 am. We slowly increased the spped over a teo monthy period.
    Praying for a speedy recovery and a clear PET.

    Debbie
  • golaine
    golaine Member Posts: 7
    #9
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    jim and i said:

    I agrre with the others
    You should have follow ups with at least the Radiation oncologist and a PET Scheduled. You are also panicking to soon but I understand. My husbands first symtom was the ear pain as well and he went miss diagnosed for three yeras by the ENT. He also had follow ups with ENT oncologist, radiation oncoloist and chemo oncologist 30 days from treatment ending and a PET 3 months from finish. Call you cancer center for recommendation on who to see. My husband's doctors always got him in ASAP because they know how worrisome things can be. But, all cancer doctors aren't that compassionate. We have called several times since treatment ended in August and never were put off for months. In fact because his radiation doctor paid attention to our concerns over balance and memory problems they found he had water on the brain which caused the problems.

    As for nutrition, do not worry about getting off anytime soon but make sure he gets the 2000 calories it is vital to recovery and healing. Do you have a med company delivering a formula? If so they should have a nutritionist that helps you figure out the rate and timing so that he gets what he needs. My husband does 7 cans starting at 4 PM but right after treatment I had to slow it down and start at 2pm and leave him on until 10 or 11 am. We slowly increased the spped over a teo monthy period.
    Praying for a speedy recovery and a clear PET.

    Debbie

    thanks
    Thanks for the replies. They were somewhat reassuring. I finally couldn't stand the worry so called the ENT and got an appointment for Wednesday. I live in Canada so fortunately it is all covered.
    As for nutrition, we have a nutritionist but he can't tolerate the flow. He is on Jevity which comes in a large bottle which is attached to a pole. In order to get a full compliment, he would have to be on it for 16 hours and he can't do it overnight.
    His next apointment at the Cancer Clinic is Jan 11th when they will do the CT scan to see if they got it all.
    This is my first foray to this site and am so glad to read about others in the same situation (although sorry it has to be so) and grateful for the quick replies.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
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    golaine said:

    thanks
    Thanks for the replies. They were somewhat reassuring. I finally couldn't stand the worry so called the ENT and got an appointment for Wednesday. I live in Canada so fortunately it is all covered.
    As for nutrition, we have a nutritionist but he can't tolerate the flow. He is on Jevity which comes in a large bottle which is attached to a pole. In order to get a full compliment, he would have to be on it for 16 hours and he can't do it overnight.
    His next apointment at the Cancer Clinic is Jan 11th when they will do the CT scan to see if they got it all.
    This is my first foray to this site and am so glad to read about others in the same situation (although sorry it has to be so) and grateful for the quick replies.

    Overnight
    I was on it over night. Just wondering why he cannot be hooked up overnight. I just made sure I had a pillow that had me sleeping propped up, which I had to do after my neck dissection anyway, and I slept on my left side. Quite a few of us did overnight feeds.
  • RogerRN43
    RogerRN43 Member Posts: 185
    #11
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    golaine said:

    thanks
    Thanks for the replies. They were somewhat reassuring. I finally couldn't stand the worry so called the ENT and got an appointment for Wednesday. I live in Canada so fortunately it is all covered.
    As for nutrition, we have a nutritionist but he can't tolerate the flow. He is on Jevity which comes in a large bottle which is attached to a pole. In order to get a full compliment, he would have to be on it for 16 hours and he can't do it overnight.
    His next apointment at the Cancer Clinic is Jan 11th when they will do the CT scan to see if they got it all.
    This is my first foray to this site and am so glad to read about others in the same situation (although sorry it has to be so) and grateful for the quick replies.

    I'm in Canada too
    I live in a suburb of Hamilton, ON, where are you?

    How about gradually in small increments, speeding up the feed so his stomach learns to expand, hopefully reducing the 16h?
    Have you tried syringing a small amount of water or feeds directly into the tube? Perhaps the end of the tube sits in a spot that is irritating to the stomach wall and syringing will spread it out more? Has he tried other supplements, some are more tolerable than others.

    Hoping the best results for his CT,
    Roger
  • golaine
    golaine Member Posts: 7
    #12
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    RogerRN43 said:

    I'm in Canada too
    I live in a suburb of Hamilton, ON, where are you?

    How about gradually in small increments, speeding up the feed so his stomach learns to expand, hopefully reducing the 16h?
    Have you tried syringing a small amount of water or feeds directly into the tube? Perhaps the end of the tube sits in a spot that is irritating to the stomach wall and syringing will spread it out more? Has he tried other supplements, some are more tolerable than others.

    Hoping the best results for his CT,
    Roger

    London
    We live in London Ontario, so not far. One of the reasons for not using tube at night is he always wakes up with nausea. Unfortunately speeding up the flow also caused the same. The tube actually goes into his upper bowel so when flow is sped up there is a back flow that can go into stomach, hence nausea. Just the last few days he is able to get tea and pureed soup down.
    This really has been a long haul. We expected it but never are you sure how it will be.
    Thanks for the suggestions.
    Elaine
  • jim and i
    jim and i Member Posts: 1,788 Member
    #13
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    golaine said:

    London
    We live in London Ontario, so not far. One of the reasons for not using tube at night is he always wakes up with nausea. Unfortunately speeding up the flow also caused the same. The tube actually goes into his upper bowel so when flow is sped up there is a back flow that can go into stomach, hence nausea. Just the last few days he is able to get tea and pureed soup down.
    This really has been a long haul. We expected it but never are you sure how it will be.
    Thanks for the suggestions.
    Elaine

    bowel?
    I never heard of that. Jim was on the Jevity at first but it came in cans. He was switched later to Osmolite.
  • par
    par Member Posts: 23
    #14
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    nutrition
    I had a lot of trouble with the feeding tube.Could not tolerate it enough to get the right nutrition and had major bowel problems.I was in and out of the hospital.I finally just started living on Boost and made myself start eating whatever I could.Scrambled eggs and stuff like that.It actually made me start feeling better.As does everyone I just had to drink a lot of liquids to be able to swallow.As far as earaches I think everyone has them to some extent,soreness from treatment,the jaw and such but it is always good to get it checked.As others said it would be better to have an oncologist look at him.Hopefully it is just from his treatment.
  • Jason1111
    Jason1111 Member Posts: 64
    #15
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    If he is getting a sore
    If he is getting a sore throat, make sure there aren't any little white spots in his mouth. My Father had a SEVERE case of thrush shortly after his radical neck dissection. Coupled with not being able to swallow already, it was devistating so watch my Father go through that. SO being that I have seen it happen, I would hate for anybody else to have to go through it so make sure that is checked..
  • Jason1111
    Jason1111 Member Posts: 64
    #16
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    If he is getting a sore
    If he is getting a sore throat, make sure there aren't any little white spots in his mouth. My Father had a SEVERE case of thrush shortly after his radical neck dissection. Coupled with not being able to swallow already, it was devistating so watch my Father go through that. SO being that I have seen it happen, I would hate for anybody else to have to go through it so make sure that is checked..

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