Struggling...

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CherieLW
CherieLW Member Posts: 472
in Head and Neck Cancer #1

Really could use some advice.  My dad went through treatment and radiation in 2013... He's still really struggling with mucous.  I notice him wheezing a lot when he talks. Sounds winded. I get scared because I saw him come on mucous and it took him a few moments for it to pass. Every time he eats he chokes.

He had a swallow test last week and doc says everything is trying to go down the wrong tube. He's losing weight like crazy and going to have to get a peg tube likely next week.  He's also starting treatment for multiple myeloma he was just diagnosed with...and speech therapy. I'm so worried about dad. My mom is so fearful that he's not gonna be around much longer. She has shingles bc she's so stressed. The doc said he looks healthy otherwise but I'm so fearful and hate seeing mom so worried too.

Anyone have this issue? It's pretty severe.  One thing I hate the most is watching one I love struggle with eating...now breathing at times. I just need some encouragement. I'm feeling down. I know none of us knows what the future will bring but some of your experiences have helped us through some pretty dark times.

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  • CherieLW
    CherieLW Member Posts: 472
    edited February 2017 #2
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    He chokes on mucous

    He chokes on mucous

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
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    Mucus

    Can be tough to deal with. Because the radiation thickens it, my husband's doctor prescribed Mucinex 1200 twice a day seven years ago and it works perfectly for Jim. Takes it every day.

  • CherieLW
    CherieLW Member Posts: 472
    #4
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    It is hard. I'm not sure what

    It is hard. I'm not sure what will help everything from going down the wrong pipe. I'm just feeling very discouraged and my dad has made comments about not being around much longer. My heart feeling broken.

  • Grandmax4
    Grandmax4 Member Posts: 723
    #5
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    Your Dad

    Mucus has been the worst part of my recovery, I'm 5 years,4 months out from surgery to remove my epiglottis and still have mucus, at times. I.m wondering if a suction machine would help, they're kinda pricey, but, if it helps, worth it. 

    About the swallowing, normally they teach you to drop your chin to your chest,cough, take a deep breath, hold it, swallow and cough. In my case, they discovered through a barrium x-ray, that when I dropped my chin, it made the food go to the wrong pipe..I just cough, hold my breath, swallow the food, and cough. Sounds complicated and it was for a while, now, it's second nature, don't even think about it.

    Speech therapy, with my Dr, covered so much more than speaking clearly, that is where my swallowing exercises were done, the speech therapist tried to feed me , applesauce with blue dye, to trace where it was going, I also did exercises for my whispery, raspy voice..and happy to say my voice is loud and clear.

    I sure hope your Dad gets some help soon, 4 years is a long time to be suffering with these issues, have you thought of a second opinion? Not sure where you are, but, The James , in Columbus Ohio is one of the best in the USA. If I can help in any way, just ask 

  • CherieLW
    CherieLW Member Posts: 472
    edited February 2017 #6
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    Thank you for your reply. I

    Thank you for your reply. I greatly appreciate any input. I'm just so worried about him. Did you ever get chokes up when breathing? Sometimes it sounds like he's gasping sometimes.  It's very worrisome.  I don't know if speech therapy will help but I hope. Has your eating improved a lot? Hope you're doing well. Dad's getting ready to start treatment for multiple myeloma now and they say that can deposit stuff on vocal cords too. I just want him to find relief. It's awful watching him struggle.

  • Raddude
    Raddude Member Posts: 84
    edited February 2017 #7
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    Have you tried

    a humidifer, also I use l-glutamine and helps a lot.

     

  • SASH
    SASH Member Posts: 421 Member
    #8
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    Suction Machine

    Maybe a suction machine would be appropriate to help remove the excess mucous.  Ask the doctor who can write a prescription for him if he feels this might be the best way of removing the mucous.

  • Grandmax4
    Grandmax4 Member Posts: 723
    edited March 2017 #9
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    CherieLW said:

    Thank you for your reply. I

    Thank you for your reply. I greatly appreciate any input. I'm just so worried about him. Did you ever get chokes up when breathing? Sometimes it sounds like he's gasping sometimes.  It's very worrisome.  I don't know if speech therapy will help but I hope. Has your eating improved a lot? Hope you're doing well. Dad's getting ready to start treatment for multiple myeloma now and they say that can deposit stuff on vocal cords too. I just want him to find relief. It's awful watching him struggle.

    Your Dad

    I noticed on another post, that your Dad was treated at the James. My eating is back to normal, I can and do eat everything. My Dr at the James is Dr Ricarado Carrau, I don't know if he gives 2nd opinions, he's the best. I can't believe he hasnt had speech therapy, mine started a couple weeks after being released, it took almost a full year, to start eating food, I had a feeding tube for a couple months, then graduated to pureed and soft diet, so, tell your Dad it's a long road. Praying the myeloma treatment is quick and easy..he deserves that

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