triple whammy frustration

kellmare
kellmare Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
I am new to chat rooms of any kind, just never felt the connection until the frustrations my husband and I are facing related to his recovery from the radiation he had for base of the tongue cancer sounded so much like so many I have read in the past 3 hours of reading the Head and Neck comments. And responses were so kind and supportive.

In April of 07, my husband finished his rounds of chemo and radiation with a modified radiacal neck dissection and total reliance on a peg for nutrition. The radiation really did a number on his throat for here we are 14 months later, 5 dilations, swallow therapy etc and he has not been able to swallow anything for any length of time due to a "soft" stricture that formed above his esophagus, a poorly functioning epiglottis, and horrific mucous( to the point he carries a styofoam "spit cup" around with him all day).

The good news is, one doctor finally found the right combination of meds to help him sleep so his energy level is greatly improved in the past 2 weeks, and I see his "real" personality back.

If we could get some kind of handle on this very thick mucous situation we would feel so much better, but nothing works - and no one seems to know where it is coming from, why, or even if it will ever get better/go away.. We are looking at atleast one more dilation, but even after this one 4 days ago, whenever he takes even a tbl of water, thick mucous forms, he can't swallow it, he begins coughing. Any ideas, help, medical facilities anywhere on the East Coast if you've had this problem, would be truly appreciated. He's lost 38 pounds yet is handling his not eating better than I am. Thanks.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    I have been out of surg since oct of 05 (for head and neck) and out of chemo and rads for that since early 06 and mucous is still a slight problem.

    It DOES seem to work itself out, mostly, after time, but your husband's lengthy time is odd, for sure.

    You must be aware that rads can nuke the saliva glands and, in any event, leave his moisture routine completely haywire.

    To be honest with you, what I did was to deal with it. And to deal with it now as well, although it is not so bad now.

    I went from sleeping two hours at a time between times when I had to get up and regurgitate the junk to a full night's sleep and just occasional trips to the sink. When it bothers me, I gargle with a small bit of water and eject the phlegm and move on.

    I am not aware of a better answer with respect to that issue at this time or I would be all over it myself.

    As for the loss of weight, this is a very serious issue, and should be addressed at once. Since he is on a PEG tube, there is no reason why he should be losing weight (listen to me :))...you should get in touch with the nutritionist or the local ACS folks or whomever is supplying his liquid diet. They can add supplements for protein, suggest vitamins, etc.

    For example, I include something called ProSource that is a protein additive, and also include Centrum for iron.

    I am not endorsing them, but advising that you look into some of the things that can go into his tube that will help him to get all of the stuff he needs to stay or get healthy and gain some needed weight.

    I would start with the nutritionist you SHOULD have available to you. If that is not the case, you should do your best to make it so, or, depending on your situation, request that your oncologist point you to someone skilled in that regard.

    It will be alright! It takes time, and some changes are forever. But it will be alright.

    There will be lots of frustration and maybe even depression, but if he wants to, he can get past all of that. I have a hard time with it, but I manage. Please have a look at my page on this site (my friends say to warn people to bring a soda and popcorn). It's not medically-oriented. It is about hope and humor.

    Take care,

    Joe
  • sassyque
    sassyque Member Posts: 44
    #3
    Hi Those of us who have been thru this know exactly what you are feeling.I finished my treatment 5 years ago and I still have the thick mucous and I'm not sure if that will ever change.My doctors tell me to drink lots and lots of water.It helps some.As for him losing weight on the Peg Tube.I also did that and it was simply the food that they were sending me.They had to change the feeding.It does take time and I know how frustrating it can be.Wish I could be more help.All I can say is hang in there and the thick mucous will improve.Everyone is different.Take care and God Bless you and your Hubby...Sassyque
  • kellmare
    kellmare Member Posts: 7
    #4
    soccerfreaks said:

    I have been out of surg since oct of 05 (for head and neck) and out of chemo and rads for that since early 06 and mucous is still a slight problem.

    It DOES seem to work itself out, mostly, after time, but your husband's lengthy time is odd, for sure.

    You must be aware that rads can nuke the saliva glands and, in any event, leave his moisture routine completely haywire.

    To be honest with you, what I did was to deal with it. And to deal with it now as well, although it is not so bad now.

    I went from sleeping two hours at a time between times when I had to get up and regurgitate the junk to a full night's sleep and just occasional trips to the sink. When it bothers me, I gargle with a small bit of water and eject the phlegm and move on.

    I am not aware of a better answer with respect to that issue at this time or I would be all over it myself.

    As for the loss of weight, this is a very serious issue, and should be addressed at once. Since he is on a PEG tube, there is no reason why he should be losing weight (listen to me :))...you should get in touch with the nutritionist or the local ACS folks or whomever is supplying his liquid diet. They can add supplements for protein, suggest vitamins, etc.

    For example, I include something called ProSource that is a protein additive, and also include Centrum for iron.

    I am not endorsing them, but advising that you look into some of the things that can go into his tube that will help him to get all of the stuff he needs to stay or get healthy and gain some needed weight.

    I would start with the nutritionist you SHOULD have available to you. If that is not the case, you should do your best to make it so, or, depending on your situation, request that your oncologist point you to someone skilled in that regard.

    It will be alright! It takes time, and some changes are forever. But it will be alright.

    There will be lots of frustration and maybe even depression, but if he wants to, he can get past all of that. I have a hard time with it, but I manage. Please have a look at my page on this site (my friends say to warn people to bring a soda and popcorn). It's not medically-oriented. It is about hope and humor.

    Take care,

    Joe

    I appreciate your detailed response, Joe, and the one from Sassyque too. I will look at your web page next. That the mucous is something you each have in varying degrees even at your point does help me see that his is not fully unique . My husband does seem to be unique with the length of time on the peg in his oncologist's group. The doctor is working with us as far as dilations, swallow specialists, etc. It just seems my husband's body took an intense hit.

    He does have regular contact with the dietition, who has been monitoring him closely, even changing his supplement twice until he found this one that agrees with him. He has been on it for the majority of the time. The more caloric one did not agree. Now he is trying to add more cans per day. We are just hoping for the day when he can swallow lots of fluids to help with the mucous.

    Again, thanks for your quick replies. All our best to both of you.
  • kellmare
    kellmare Member Posts: 7
    #5
    soccerfreaks said:

    I have been out of surg since oct of 05 (for head and neck) and out of chemo and rads for that since early 06 and mucous is still a slight problem.

    It DOES seem to work itself out, mostly, after time, but your husband's lengthy time is odd, for sure.

    You must be aware that rads can nuke the saliva glands and, in any event, leave his moisture routine completely haywire.

    To be honest with you, what I did was to deal with it. And to deal with it now as well, although it is not so bad now.

    I went from sleeping two hours at a time between times when I had to get up and regurgitate the junk to a full night's sleep and just occasional trips to the sink. When it bothers me, I gargle with a small bit of water and eject the phlegm and move on.

    I am not aware of a better answer with respect to that issue at this time or I would be all over it myself.

    As for the loss of weight, this is a very serious issue, and should be addressed at once. Since he is on a PEG tube, there is no reason why he should be losing weight (listen to me :))...you should get in touch with the nutritionist or the local ACS folks or whomever is supplying his liquid diet. They can add supplements for protein, suggest vitamins, etc.

    For example, I include something called ProSource that is a protein additive, and also include Centrum for iron.

    I am not endorsing them, but advising that you look into some of the things that can go into his tube that will help him to get all of the stuff he needs to stay or get healthy and gain some needed weight.

    I would start with the nutritionist you SHOULD have available to you. If that is not the case, you should do your best to make it so, or, depending on your situation, request that your oncologist point you to someone skilled in that regard.

    It will be alright! It takes time, and some changes are forever. But it will be alright.

    There will be lots of frustration and maybe even depression, but if he wants to, he can get past all of that. I have a hard time with it, but I manage. Please have a look at my page on this site (my friends say to warn people to bring a soda and popcorn). It's not medically-oriented. It is about hope and humor.

    Take care,

    Joe

    It is clear I am new to discussion groups as I sent myself :) a longer response that was meant for you and Sassyque - it goes along with my replies. Hopefully you can get to it as I really appreciate your response.
  • MLC53
    MLC53 Member Posts: 109
    #6
    I am one year out of treatments for tonsillar cancer. I have a slight problem with phlem but not much. Water seems to wash it down pretty well. I still have my peg tube because I've had issues with esophageal strictures as well. My GI doctor doesn't want to remove the tube until he's sure that the stricture won't come back. Hopefully I will be getting it out soon because I don't really use it much anymore. When I was using it on a daily basis, I used Jevity 1 Cal that was prescribed by my doctor and paid for by my insurance company. They have it shipped to my house once a month. The Jevity 1 Cal wasn't too heavy on my stomach like the higher calorie Jevity supplements were and I did about six cans a day in order to maintain the calories I needed. It worked fine for me. I gradually started drinking Ensure Plus in the chocolate flavor (after having several dilations) to wean myself off the tube feedings. Now I am eating some solid foods in small amounts and supplementing them with Ensure Plus. We all react to the treatments differently, but with some similarities. I hope this helps. Hang in there!
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
    kellmare said:

    It is clear I am new to discussion groups as I sent myself :) a longer response that was meant for you and Sassyque - it goes along with my replies. Hopefully you can get to it as I really appreciate your response.

    Your responses have been received :). Re the time on the PEG tube, I still have mine in after more than two years. It sounds as though that may be the realization for your husband as well, if he is still not taking in any nutrients orally yet.

    IT DOES GET BETTER. I have made a game of it, of sorts, albeit sometimes a very frustrating game!

    The only thing I can think of that might help is to gargle with water to assist with ejecting the mucus, and then trying to down some water or yogurt or whatever immediately after. Certainly the mucus cannot re-generate that quickly, IF that is the only problem he is having.

    If the swallow tests show he is not aspirating (how has he done with the tests?...do they show him capable of swallowing?) then this is the only thing I can come up with, except for one other obvious one: to use special toothpaste and mouthwash for those with 'dry mouth' and to use them religiously. I feel rather confident that you have already been through this, but throw it out there in the offhand chance that you have not.

    IT WILL GET BETTER! Hub needs to stick with it and to get competitive with it, to will himself toward improvements, in whatever ways work for him.

    Best wishes. I wish I could help. Of course, if either of you simply need to talk, we are always here, and up for most anything.

    Take care,

    Joe
  • kellmare
    kellmare Member Posts: 7
    #8
    MLC53 said:

    I am one year out of treatments for tonsillar cancer. I have a slight problem with phlem but not much. Water seems to wash it down pretty well. I still have my peg tube because I've had issues with esophageal strictures as well. My GI doctor doesn't want to remove the tube until he's sure that the stricture won't come back. Hopefully I will be getting it out soon because I don't really use it much anymore. When I was using it on a daily basis, I used Jevity 1 Cal that was prescribed by my doctor and paid for by my insurance company. They have it shipped to my house once a month. The Jevity 1 Cal wasn't too heavy on my stomach like the higher calorie Jevity supplements were and I did about six cans a day in order to maintain the calories I needed. It worked fine for me. I gradually started drinking Ensure Plus in the chocolate flavor (after having several dilations) to wean myself off the tube feedings. Now I am eating some solid foods in small amounts and supplementing them with Ensure Plus. We all react to the treatments differently, but with some similarities. I hope this helps. Hang in there!

    My husband's esophageal stricture has been quite a problem, but we are hoping the one he had last week will be the start of better things. HE has been swallowing chamomile tea well. After 14 months, he is totally tube dependent- the dietition wanted him to try Jevity for more calories but it didn't sit well with him. I'd been thinking that once we got a handle on the phlegm and improved that piece of his swallowing problem, then we could move to the next step - but that requires keeping the stricture open. He just is at the tail end of people in the support group at the hospital and seems to have had more of the impediments to even getting a regular pattern to slightly thicker things than tea. Once he was up to a few tblsp of cream soup and tiny bites of thin ham, but then the stricture kicked in - I think that is one of the sources of frustration. We thought we were on the first step of the road to some solid food- and it was lost and back to 0.

    Reading your words and those of others do help. Thanks for sharing - and best wishes to you.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #9
    kellmare said:

    My husband's esophageal stricture has been quite a problem, but we are hoping the one he had last week will be the start of better things. HE has been swallowing chamomile tea well. After 14 months, he is totally tube dependent- the dietition wanted him to try Jevity for more calories but it didn't sit well with him. I'd been thinking that once we got a handle on the phlegm and improved that piece of his swallowing problem, then we could move to the next step - but that requires keeping the stricture open. He just is at the tail end of people in the support group at the hospital and seems to have had more of the impediments to even getting a regular pattern to slightly thicker things than tea. Once he was up to a few tblsp of cream soup and tiny bites of thin ham, but then the stricture kicked in - I think that is one of the sources of frustration. We thought we were on the first step of the road to some solid food- and it was lost and back to 0.

    Reading your words and those of others do help. Thanks for sharing - and best wishes to you.

    I know you have mentioned swallow tests, and I'm not looking at previous posts on the thread so maybe even speech therapy.

    I found that speech therapy was no substitute for what I would describe as swallow therapy. That is not to denigrate the benefit of speech therapy, of course. But I managed to get hooked up with a physical therapist who was working with another person like me (and it is a very limited field at this time, apparently) and we did a lot of stuff with massage and heat and repetitive exercises designed to alleviate some of the problems caused by radiation and surgery.

    When I went to her the first time, I could open my mouth only about 20mm. When I left, I was almost to 30mm, which doesn't sound like much, but really is. As a point of reference, your average guy is probably at 45mm.

    The thing is, hubbie needs to KEEP doing the things he was successful with at one time. These will keep his mouth and all of the mechanics there from atrophying, as mine seem to do when I get lax.

    There is also something called a therabyte (sp?) or some such, a plastic device that you can use at home to help improve your mouth movement. It is expensive, but my insurance covered it. If yours does not, it is really not much more than what you could do on your own (his own) with a couple of popsicle sticks: it is designed to help you open your mouth more and to work those muscles.

    The main thing is, you are not at point zero. You KNOW that he can do the cream soup and the thin slices of ham. He has done them before.

    The problem, from my experience, is that we grow weary quickly of eating the same stuff, and we then simply become weary.

    We have to fight ourselves as well as our affliction. Part of that is recognizing the frustration and possible depression that come with failure and moving past those things. This is your most important job, my friend...to make sure that he does not get bogged down with failure or boredom.

    I know this, I do. I've been there, and it is as clear as a bell to me. I came to HATE potatoes for a spell, came to HATE ice cream for a spell, because it seemed like they were all I could eat.

    IT DOES GET BETTER! But he has to fight for it. That is what I am saying, I guess. He has to fight for it.

    You don't leave point zero and find yourself there again. One step back, two steps forward.

    Take care,

    Joe
  • kellmare
    kellmare Member Posts: 7
    #10
    soccerfreaks said:

    I know you have mentioned swallow tests, and I'm not looking at previous posts on the thread so maybe even speech therapy.

    I found that speech therapy was no substitute for what I would describe as swallow therapy. That is not to denigrate the benefit of speech therapy, of course. But I managed to get hooked up with a physical therapist who was working with another person like me (and it is a very limited field at this time, apparently) and we did a lot of stuff with massage and heat and repetitive exercises designed to alleviate some of the problems caused by radiation and surgery.

    When I went to her the first time, I could open my mouth only about 20mm. When I left, I was almost to 30mm, which doesn't sound like much, but really is. As a point of reference, your average guy is probably at 45mm.

    The thing is, hubbie needs to KEEP doing the things he was successful with at one time. These will keep his mouth and all of the mechanics there from atrophying, as mine seem to do when I get lax.

    There is also something called a therabyte (sp?) or some such, a plastic device that you can use at home to help improve your mouth movement. It is expensive, but my insurance covered it. If yours does not, it is really not much more than what you could do on your own (his own) with a couple of popsicle sticks: it is designed to help you open your mouth more and to work those muscles.

    The main thing is, you are not at point zero. You KNOW that he can do the cream soup and the thin slices of ham. He has done them before.

    The problem, from my experience, is that we grow weary quickly of eating the same stuff, and we then simply become weary.

    We have to fight ourselves as well as our affliction. Part of that is recognizing the frustration and possible depression that come with failure and moving past those things. This is your most important job, my friend...to make sure that he does not get bogged down with failure or boredom.

    I know this, I do. I've been there, and it is as clear as a bell to me. I came to HATE potatoes for a spell, came to HATE ice cream for a spell, because it seemed like they were all I could eat.

    IT DOES GET BETTER! But he has to fight for it. That is what I am saying, I guess. He has to fight for it.

    You don't leave point zero and find yourself there again. One step back, two steps forward.

    Take care,

    Joe

    Hello-
    Reading your response is like looking in a mirror. Our road has been pretty bumpy, windy, detours, potholes, etc. So much of what you mention is so familiar. My husband has not needed speech therapy, but has had many sessions of swallow therapy, dialtions followed by barium swallow tests, more swallow therapy..He does swallow exercises nightly, and has the therabyte which was given to him when he left the hospital after his last chemo in April 2007. The good thing is he has managed to open his mouth to 41mm. This is needed for the dialtions.

    Our problem has been that re-forming stricture - but it was softer when the dr. dilated last week. So there is hope it is improving. :)

    He has to be careful with foods and start all over when he is dilated each time; his epiglottis slowness causes him to cough with most foods as that natural reflex is preventing aspiration. So it is a slow go. Today he did try 2 very small bites of very creamy homemade potato salad, and was very successful with the first, coughing with the second. But definitely something to smile about.

    You are so right about getting weary of certain foods. He used to LOVE pudding; it's down on the list now.

    As you said, frustration comes in not seeing consistent forward progress- and wanting to join events involving food ( and there are sooo many)) disappointment has to be fought and we just have to remember what we've faced and keep on plugging. Thanks for your strong words of support. Take care.
  • dihawkes
    dihawkes Member Posts: 2
    #11
    Hi Kellmare,
    My husband has the mucus problem too but not as severe as your husbands, I am with you as I feel so helpless and just want him to feel "like his old self again", my husband lost 50lbs, he has only gained 5 back, it is sooo hard to see him this frail..

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