Metasize Squamous Cell in the lymph node in neck - radation 15 days not able to eat anything

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I am deseperate and looking for any suggestions. My husband has finished chemotherapy and is now undergoing 38 rounds of radation on the throat and neck. he has lost 70lbs in over 4 weeks and is refusing to eat anything. Says everything taste horrible and is refusing to eat.
the doctor does not want to do a feeding tube and he is doing the mircle mouth wash not helping.
can anyone offer any suggestions please
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  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    protein drinks are easy to swallow
    Hi ConnieHolly,

    Welcome to you and your husband for finding this forum. We strive to be helpful to Head & Neck patients. I had stage IVa, SCC, BOT, HPV+, surgery on tongue and neck followed by radiation and chemo. Similar to your husband.

    Since he does not have a PEG and I imagine his throat and mouth feel like crap. The only suggestions I can make are high calorie protein drinks and soft foods. Some recommend baby food and others mashed potatoes. I myself, hated the feel and taste of food so much, I don’t know how people manage to eat, but I guess your husband is doing it. I had a PEG, so it wasn’t an issue. Even with the PEG I managed to drink one meal a day. I lived on smoothies for 7 months after treatments ended. Oh, I lost 43 pounds, seems to be a common thread between all of us.

    The soft food people and real brains to this site will be along soon. Best of luck to you and your husband.

    Best,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Connie...
    I have to be brutally honest here....

    You say your husband refuses to eat because "everything tastes horrible"....

    Well plain and simple, it's a matter of priorities, life or death. You don't eat, you don't stay hydrated and take in calories, you lose too much weight and can't fight for survival..."you die".

    So in that respect, he needs to suck it up, do what he needs to do to survive, whether he can taste or not.

    We all go through the no taste and no saliva stage, especially during rads... It's just the way that it is.

    As for me, I didn't have a PEG it wasn't prescribed, and for me that worked OK. I lost a total of 42#.

    But like Matt, I didn't eat any real food, I drank Ensure Plus and water several times each day.

    As for him losing 70# and the MD "Not wanting to put a feeding tube in"... Well unless there is some medical or"logical" reason for not doing so, and offering that thought process to you.

    It might be time that either he puts one in, or you go MD shopping.... You might ask your MD if his/her intent is to let your husband wither away and die....

    Like mentioned above, you do whatever you have to do to survive., plain and simple.

    I'm sorry to have to tell you the way that I see it, and please realize that my intent is not to be mean or scare you...

    Well, yes, I guess in some ways it is meant to scare you... Scare you enough to take action, and to force your husband to think about is priorities and objectives.

    Thoughts and Prayers,
    John
  • amy_h414
    amy_h414 Member Posts: 98
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    he needs a PEG
    The situation will not improve when he starts radiation, it will likely get worse. He needs nutrition and fluids. I would insist on a PEG, and if his doc doesn't want to do it, find someone who will.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Somethings gotta give
    I am like John, it is one thing if he cannot eat. It is another if he will not eat. I gt to where I couldnt eat solid,food after the first two weeks of rads. my mouthmwas too sore. So like others, I made myself take in 2000 calories of liquid food per day. It was unpleasant, but it got me through without a PEG tube. I didnt lose much weight. If I hadnt been able to get the liquids in, it would have necessitated a tube. It is that simple. So this situation is pretty straightforward. If he is so sore he cannot take in the liquids, he will have to have a tube.

    Pat
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Eating isn't for pleasure anymore...
    it's for survival...a 70 lb weight loss in a 4 week period is more than I can even fathom...so am surprised that the Dr. "doesn't want to do a feeding tube".....why the hell not? I honestly think you need to think about insisting on it...demand that he get a tube. If food tastes terrible now, at least when he starts radiation, it will simply become tasteless...but there's the chance he'll move into having his mouth sting and hurt trying to eat.

    I had two big fears when I started treatment...1) that I could starve to death in the midst of fighting my battle (I weighed 97 lbs when I started treatment, and weighed 81 when I finished)...and 2) that I'd lose my swallowing ability.....those two fears kept me eating, or at least drinking water all thru treatment.

    You're going to have to let him know that this is serious biz....a "come to Jesus" talk...possible dying is the real deal in this fight.

    p

    PS...Ya know, 8 to 10 gulps of Ensure or Boost will finish a meal in a couple of minutes...that isn't too much "bad taste" to put up with in order to stay alive.
  • blackswampboy
    blackswampboy Member Posts: 341
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    the alternative to eating...
    ...is that he'll end up in hospital being fed via IV.
    that was the choice presented to me, and it cleared my mind right up: got religion about nutrition, amen!

    but getting a PEG tube would make things a whole lot easier.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Eating isn't for pleasure anymore...
    it's for survival...a 70 lb weight loss in a 4 week period is more than I can even fathom...so am surprised that the Dr. "doesn't want to do a feeding tube".....why the hell not? I honestly think you need to think about insisting on it...demand that he get a tube. If food tastes terrible now, at least when he starts radiation, it will simply become tasteless...but there's the chance he'll move into having his mouth sting and hurt trying to eat.

    I had two big fears when I started treatment...1) that I could starve to death in the midst of fighting my battle (I weighed 97 lbs when I started treatment, and weighed 81 when I finished)...and 2) that I'd lose my swallowing ability.....those two fears kept me eating, or at least drinking water all thru treatment.

    You're going to have to let him know that this is serious biz....a "come to Jesus" talk...possible dying is the real deal in this fight.

    p

    PS...Ya know, 8 to 10 gulps of Ensure or Boost will finish a meal in a couple of minutes...that isn't too much "bad taste" to put up with in order to stay alive.

    lets see
    97 minus 70 equals 27. That could have been a challenge:)
  • Greend
    Greend Member Posts: 678
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    lets see
    97 minus 70 equals 27. That could have been a challenge:)

    Food for thought
    No pun intended.

    P51 did great through treatments.
  • Vikeman10
    Vikeman10 Member Posts: 62
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    Sorry about the news
    I have to agree with John he needs his nutrition to survive. If my doc didn't want to give me a peg tube he better have a damn good medical reason, otherwise why even fight it? I am sorry if this is cruel but action needs to happen, my prayers to you and your family.
    Randy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Already 15 Days...
    If I read this correctly, he is already 15 days into a treatment plan of 38 days of rads....

    One other thing....

    Even with the PEG, the need to swallow is still there.

    You could very easily not have the desire to eat, have a PEG, and not attempt any swallowing.

    Then eventually find yourself in a situation that even after treatment, when life is good again, your taste and slaiva have returned.

    But you have lost the ability to swallow...

    That would be a terrible thing considering everything endured during treatment.

    Best,
    John
  • Pam M
    Pam M Member Posts: 2,196
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    70 Pounds?!?
    Can't believe the doc is nixing the feeding tube idea.

    For many of us, many foods become totally unpalatable, or too difficult to eat.

    What I had to do was get it into my head that calories were just another prescription that I had to take. I did lots of smoothies with protein powder, banana, peanut butter and yogurt added - I could take pain meds and try to chug it down quickly, and get in lots of calories in one glass (with no added sugar). If I'd been smart, I'd have figured out a way to get some good-for-you fat in there, too.

    If he's not eating, and not getting in calories, the pain is going to be worse than if he's well fed and well hydrated, and his strength and stamina will be decreased. At this point, everything could become more difficult to deal with. It also helped me to log my water and calorie intake every day. It kept me honest, and made it easier for me to make sure I got enough in.
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    No Good Suggestions
    I have nothing to suggest in addition to what others have posted. But I must say that cancer is as hard on the caregiver(s)as it is on the patient. I know we all feel for you. Only wish we could help more. Rick.
  • Billie67
    Billie67 Member Posts: 898
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    No Good Suggestions
    I have nothing to suggest in addition to what others have posted. But I must say that cancer is as hard on the caregiver(s)as it is on the patient. I know we all feel for you. Only wish we could help more. Rick.

    Connie
    Welcome to this site, sorry you had to look us up but glad you found us.
    I can only stress what all of the others have said. First and foremost I would demand a PEG for your husband. I can relate to the dr saying no however. My radiology oncologist said "not yet" every time I'd ask. I am much like Phrannie, I started out at 100lbs and I was losing weight rapidly.
    The RNs at the office agreed with me and called my chemo oncologist office and he was quick to order it for me. That might be an option for you.or if your insurance permits, go straight to a GI yourself and express the need. Honestly that is crucial at this pointing his journey.
    I can guarantee he already felt crappy and then to lose so much weight, that just adds to feeling miserable.
    Next he needs to realize that at this point we eat for other purposes, eat to live and not the other way around. food will either taste horrible or like nothing at all or a little of both. Once he gets his PEG he still needs to swallow to exercise those muscles. It is true what the others have said, you can lose the ability to swallow if you allow those muscles to harden from radiation. You need to use them or lose them. and lastly, if he's not eating he's not being properly hydrated either. That in itself is very dangerous. I myself spent a mini vacation in the hospital due to that. This is all serious and needs to be taken care of. I bet as soon as he gets some nutrition he will begin to feel better too. He most likely won't feel good/great until treatment is over but nutrition and hydration will make a noticable difference.
    I'm sorry you are both going thru all of this. There is light at the end of the tunnel as many of us can vouch to. I wish you luck getting the treatment he needs. We are always here, come back often,
    Take good care,
    Billie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Billie67 said:

    Connie
    Welcome to this site, sorry you had to look us up but glad you found us.
    I can only stress what all of the others have said. First and foremost I would demand a PEG for your husband. I can relate to the dr saying no however. My radiology oncologist said "not yet" every time I'd ask. I am much like Phrannie, I started out at 100lbs and I was losing weight rapidly.
    The RNs at the office agreed with me and called my chemo oncologist office and he was quick to order it for me. That might be an option for you.or if your insurance permits, go straight to a GI yourself and express the need. Honestly that is crucial at this pointing his journey.
    I can guarantee he already felt crappy and then to lose so much weight, that just adds to feeling miserable.
    Next he needs to realize that at this point we eat for other purposes, eat to live and not the other way around. food will either taste horrible or like nothing at all or a little of both. Once he gets his PEG he still needs to swallow to exercise those muscles. It is true what the others have said, you can lose the ability to swallow if you allow those muscles to harden from radiation. You need to use them or lose them. and lastly, if he's not eating he's not being properly hydrated either. That in itself is very dangerous. I myself spent a mini vacation in the hospital due to that. This is all serious and needs to be taken care of. I bet as soon as he gets some nutrition he will begin to feel better too. He most likely won't feel good/great until treatment is over but nutrition and hydration will make a noticable difference.
    I'm sorry you are both going thru all of this. There is light at the end of the tunnel as many of us can vouch to. I wish you luck getting the treatment he needs. We are always here, come back often,
    Take good care,
    Billie

    Hmmmm...this makes no sense...(the doctor I mean)
    Unless a medical condition ...why would the doc not order a feeding tube...I lost 70lbs during my entire treatment!! I was a very big guy to start...so I did okay......

    I know each person is different and I get why those who did not need a tube might disagree with me ...but for the purpose of "insurance" why don't all doc team of H&N strongly suggest a feeding tube just to prevent the situations I've read on this board...if you never need it great, but if you find you absolutely must have one ...it's not when you are at your worst and weakest...???!!!

    Tell your husband sorry he has to go through this (as well as you too) but if he will not eat for himself, he should eat for his loved ones who have to watch him go through what he is going through ...time to help others feel better at this time .....I had my wife and five children to worry about ...watching them stress and fear for me was hard and made me do what I had to do to fight and get better!!

    I hope that does not sound like I am not sympathetic to him or you ...or preaching at you both ....I know this is tough stuff and I whispered a prayer things will get better.

    Best,

    Tim
  • Matt29
    Matt29 Member Posts: 62
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    Tim6003 said:

    Hmmmm...this makes no sense...(the doctor I mean)
    Unless a medical condition ...why would the doc not order a feeding tube...I lost 70lbs during my entire treatment!! I was a very big guy to start...so I did okay......

    I know each person is different and I get why those who did not need a tube might disagree with me ...but for the purpose of "insurance" why don't all doc team of H&N strongly suggest a feeding tube just to prevent the situations I've read on this board...if you never need it great, but if you find you absolutely must have one ...it's not when you are at your worst and weakest...???!!!

    Tell your husband sorry he has to go through this (as well as you too) but if he will not eat for himself, he should eat for his loved ones who have to watch him go through what he is going through ...time to help others feel better at this time .....I had my wife and five children to worry about ...watching them stress and fear for me was hard and made me do what I had to do to fight and get better!!

    I hope that does not sound like I am not sympathetic to him or you ...or preaching at you both ....I know this is tough stuff and I whispered a prayer things will get better.

    Best,

    Tim

    DOESN'T MAKE SENSE
    I went to Md Anderson and i was 150lbs they told me up front that if i lost 10% of my body weight i would get a feeding tube well 4 weeks in i was getting the feeding tube i'm not going to sit here and tell you he will like it because he wont its weird and uncomfortable but it works he should have already had one the problem is once you start losing weight it goes fast very fast so its hard to catch up other than that do the protien shakes if you can and demand a feeding tube doesn't make sense also keep a bottle of water everywhere you go must keep swallowing even if its a little bit and it hurts.
  • ConnieHolley
    ConnieHolley Member Posts: 12
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    Matt29 said:

    DOESN'T MAKE SENSE
    I went to Md Anderson and i was 150lbs they told me up front that if i lost 10% of my body weight i would get a feeding tube well 4 weeks in i was getting the feeding tube i'm not going to sit here and tell you he will like it because he wont its weird and uncomfortable but it works he should have already had one the problem is once you start losing weight it goes fast very fast so its hard to catch up other than that do the protien shakes if you can and demand a feeding tube doesn't make sense also keep a bottle of water everywhere you go must keep swallowing even if its a little bit and it hurts.

    thank you and yes we keep
    thank you and yes we keep bottle of water everywhere.
  • dales2loud
    dales2loud Member Posts: 45
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    Try drinking shakes!
    I'm so sorry you are both going through this, I to was to the point of having to re-install my peg because of the weight loss and my Doc gave me a case of ensure and said if this don't work then we have to put the peg back in (my peg/feeding tube became infected and was removed after two painful weeks). I took the ensure home and prayed to God that I would be able to drink them. He answered, the ensure tasted good from day one until 6 months later when I had my last one. I always thought hey were chocolate but found out months later that they were vanilla, the lord works in mysterious ways.
    Please also try shakes and smoothes made with fruit or ice cream mixed in with ensure. The coolness will feel better then the taste since there probably is none.
    A guy near Jefferson City survived on egg nog, you just need one food that tastes good or taste
    ok keep some weight on.

    Lot's of love, luck and prayer.

    Dale
  • ConnieHolley
    ConnieHolley Member Posts: 12
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    Tim6003 said:

    Hmmmm...this makes no sense...(the doctor I mean)
    Unless a medical condition ...why would the doc not order a feeding tube...I lost 70lbs during my entire treatment!! I was a very big guy to start...so I did okay......

    I know each person is different and I get why those who did not need a tube might disagree with me ...but for the purpose of "insurance" why don't all doc team of H&N strongly suggest a feeding tube just to prevent the situations I've read on this board...if you never need it great, but if you find you absolutely must have one ...it's not when you are at your worst and weakest...???!!!

    Tell your husband sorry he has to go through this (as well as you too) but if he will not eat for himself, he should eat for his loved ones who have to watch him go through what he is going through ...time to help others feel better at this time .....I had my wife and five children to worry about ...watching them stress and fear for me was hard and made me do what I had to do to fight and get better!!

    I hope that does not sound like I am not sympathetic to him or you ...or preaching at you both ....I know this is tough stuff and I whispered a prayer things will get better.

    Best,

    Tim

    Well believe it or not we
    Well believe it or not we had a family meeting last week and he is working hard at eating something even if not much. Our children really stress to him how hard this is to watch him go through this but that they do not want to loose him.

    In looking at your picture I would bet you are a hunter so is my husband and opening day of deer season is this coming Saturday so I have been bribing him with food and if he eats I will go with him Saturday if he feels like it.

    connie
  • ConnieHolley
    ConnieHolley Member Posts: 12
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    CivilMatt said:

    protein drinks are easy to swallow
    Hi ConnieHolly,

    Welcome to you and your husband for finding this forum. We strive to be helpful to Head & Neck patients. I had stage IVa, SCC, BOT, HPV+, surgery on tongue and neck followed by radiation and chemo. Similar to your husband.

    Since he does not have a PEG and I imagine his throat and mouth feel like crap. The only suggestions I can make are high calorie protein drinks and soft foods. Some recommend baby food and others mashed potatoes. I myself, hated the feel and taste of food so much, I don’t know how people manage to eat, but I guess your husband is doing it. I had a PEG, so it wasn’t an issue. Even with the PEG I managed to drink one meal a day. I lived on smoothies for 7 months after treatments ended. Oh, I lost 43 pounds, seems to be a common thread between all of us.

    The soft food people and real brains to this site will be along soon. Best of luck to you and your husband.

    Best,

    Matt

    he has already lost 60lbs he
    he has already lost 60lbs he is a large man though 6'7" and he weighed 320lbs starting out so we have a little wiggle room. I have purchased Ensures and he is drinking at least one a day.
    his attitude has changed a little since the first post and he knows that if he is going to be bet this eating is the way.

    thanks,

    connie
  • hwt
    hwt Member Posts: 2,328 Member
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    thank you and yes we keep
    thank you and yes we keep bottle of water everywhere.

    Unwilling or unable
    If your husband is simply unwilling to eat then he may need to speak to a professional about his state of mind. Something doesn't sound right about a patient who lost 70 pounds in a month and a doctor who doesn't think he needs a feeding tube. Several of us had good luck drinking milk but of course that's not going to solve your situation. Hydration and nutrition are key to success.