Hard to eat

keep_the_faith
keep_the_faith Member Posts: 49
in Head and Neck Cancer #1
After jaw cancer surgery, has any one had trouble eating. I have to puree all my food as everything sticks to the roof and sides of my mouth and I can't swallow.
«13

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Keep the Faith
    I too have Jaw problems not to the extent of pureeing all my food but getting close. All this is due to a damaged nerve in the left side of my face. It is a living hell sometimes trying to eat.
    Sorry to hear you have all these problems as well my friend and hope that in time it will get better for you.

    PS: Also welcome to our little family here on CSN hope you stay and become part of us.
    Thanks
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Keep the faith
    Did you have radiation as well? I didn't have jaw surgery, but after radiation my tongue wouldn't move the food around my mouth very well to chew and manipulate the food the way it should to chew, eat and swallow stuff easily. Between that and no saliva, it's not easy to eat. I wonder if the jaw surgery could have somehow affected your tongue movement. I think that can happen with neck dissections.

    The only thing I can think of is to talk to your doctors about meeting with a speach pathologist or therapist. Maybe a swallowing study? Not sure, but it would be a place to start.
  • mixleader
    mixleader Member Posts: 267 Member
    #4
    Eating Problems
    Yeah, add me to that list. Two surgeries to the right side of my face did it for me. The doc had to remove quite a bit of the muscle that works the jaw and that left me with a small mouth opening and a very painful TMJ disorder. Thank God the facial pain is gone now but we don't know if it was due to the nerve meds they put me on, or the further destruction of the facial nerve due to the cancer. And, with lips that don't work either, eating has gotten a whole lot harder to do, but I manage. I have to eat a BK Whopper with a fork and I sure can't bite anything off; such as an apple or a sandwich. Add to that the fact that the chemo has my tongue very sensitive and that further reduces my dietary options. And, a lot of things taste different now or have no taste, also thanks to the chemo. But, I'm still eating. Some things are just too important to let go.

    Roger
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #5
    Hondo said:

    Hi Keep the Faith
    I too have Jaw problems not to the extent of pureeing all my food but getting close. All this is due to a damaged nerve in the left side of my face. It is a living hell sometimes trying to eat.
    Sorry to hear you have all these problems as well my friend and hope that in time it will get better for you.

    PS: Also welcome to our little family here on CSN hope you stay and become part of us.
    Thanks
    Hondo

    Hi Hondo
    I love this site. It's more informative than my support group at the hospital. Here I can relate to everyone.

    I want to be able to travel. I guess I'll just have to pack a large can of protein powder and then mix it with fruit juice in the hotel room.

    As time goes on, the nerves should regenerate in your face. Try massaging your face several times a day to get better blood flow. I don't know if this will work but I do this on my throat and on my arm where they took a vein out for my mouth.

    Thanks for writing,
    Keep the Faith
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #6
    sweetblood22 said:

    Keep the faith
    Did you have radiation as well? I didn't have jaw surgery, but after radiation my tongue wouldn't move the food around my mouth very well to chew and manipulate the food the way it should to chew, eat and swallow stuff easily. Between that and no saliva, it's not easy to eat. I wonder if the jaw surgery could have somehow affected your tongue movement. I think that can happen with neck dissections.

    The only thing I can think of is to talk to your doctors about meeting with a speach pathologist or therapist. Maybe a swallowing study? Not sure, but it would be a place to start.

    Sweetblood22
    Yes, I had radiation and chemo at the same time. They cut part of my tongue off and connected a flap to the end of it. I can only move my tongue a little from side to side. It hasn't been quite a year yet since I finished radiation and chemo. I did read on this site that it took someone 18 mos. before they could swallow. Everyone tells me that my voice is sounding more like me now. My mouth really dries out when I talk a lot.

    Thanks for sharing. This is a great discussion board. I'm so glad I found it.
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #7
    mixleader said:

    Eating Problems
    Yeah, add me to that list. Two surgeries to the right side of my face did it for me. The doc had to remove quite a bit of the muscle that works the jaw and that left me with a small mouth opening and a very painful TMJ disorder. Thank God the facial pain is gone now but we don't know if it was due to the nerve meds they put me on, or the further destruction of the facial nerve due to the cancer. And, with lips that don't work either, eating has gotten a whole lot harder to do, but I manage. I have to eat a BK Whopper with a fork and I sure can't bite anything off; such as an apple or a sandwich. Add to that the fact that the chemo has my tongue very sensitive and that further reduces my dietary options. And, a lot of things taste different now or have no taste, also thanks to the chemo. But, I'm still eating. Some things are just too important to let go.

    Roger

    Mixleader
    Roger,

    I've had about seven surgeries in my mouth and one more to go. I, too, had quite a bit of muscle removed from the bottom of my mouth. I still have facial pain from the jaw up to my nose but it's getting better.

    I look forward to the day when I can eat a burger. How long did it take before you were able to eat after chemo? Yogurt tastes terrible to me. As time goes on, your tastebuds will probably change again.

    Keep in touch,
    Anne
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #8
    keep_the_faith said:

    Sweetblood22
    Yes, I had radiation and chemo at the same time. They cut part of my tongue off and connected a flap to the end of it. I can only move my tongue a little from side to side. It hasn't been quite a year yet since I finished radiation and chemo. I did read on this site that it took someone 18 mos. before they could swallow. Everyone tells me that my voice is sounding more like me now. My mouth really dries out when I talk a lot.

    Thanks for sharing. This is a great discussion board. I'm so glad I found it.

    Keep the faith
    Ok, you had tongue, jaw, rads and chemo. Yeah, that makes more sense to me now. I didn't have chemo, tongue or extensive jaw surgery. (only a tongue biopsy, and my tumor had to be scraped off my jaw bone during my neck dissection)

    I would definitely ask about a therapist or speech pathologist. They may be able to give you exercises to do to get your tongue to move better and chew and swallow better. My tongue just from radiation was so bad. It still doesn't move like it used to, but it's much better and I can eat now, just super slowly. I had my peg for a long time, 18 months. Didn't eat at all by mouth for 9 months. I have been dilated twice since rads, but still have a structure from scar tissue from radiation. Lack of saliva is a huge issue for me. Not only because of the radiation, but they also removed my left submandibular salivary gland during the neck dissection. Sometimes it's hard for me to talk because my mouth is so dry. Hopefully you know about biotène and other products for dry mouth.
  • greg from pa
    greg from pa Member Posts: 86
    #9
    yeah, I can relate. 13
    yeah, I can relate. 13 months have past since I had chemo and radiation. sometimes wondered if I was ever gonna do solid food again. I was excited about getting dialated last dec. in hopes of being able to eat a regular Christmas dinner.It was not yet time ,I could not do it.Last summer saw a speech therapist and reciever shock therapy to the throat.This helped to a degree.I can now eat most things, it just took time to heal.I still eat slowly and drink almost a quart of milk with a meal to wash it down. best wishes to you. glad you found this site. Greg
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #10
    sweetblood22 said:

    Keep the faith
    Ok, you had tongue, jaw, rads and chemo. Yeah, that makes more sense to me now. I didn't have chemo, tongue or extensive jaw surgery. (only a tongue biopsy, and my tumor had to be scraped off my jaw bone during my neck dissection)

    I would definitely ask about a therapist or speech pathologist. They may be able to give you exercises to do to get your tongue to move better and chew and swallow better. My tongue just from radiation was so bad. It still doesn't move like it used to, but it's much better and I can eat now, just super slowly. I had my peg for a long time, 18 months. Didn't eat at all by mouth for 9 months. I have been dilated twice since rads, but still have a structure from scar tissue from radiation. Lack of saliva is a huge issue for me. Not only because of the radiation, but they also removed my left submandibular salivary gland during the neck dissection. Sometimes it's hard for me to talk because my mouth is so dry. Hopefully you know about biotène and other products for dry mouth.

    Sweetblood22
    I use either baking soda or biotene toothpaste then rinse my mouth with biotene mouthwash. The freshness in my mouth doesn't last long, only five minutes and then it's dry again. I use tic tacs and this really helps. I've had my G-tube in 11 months. Did they give you a local to take the tube out?
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #11
    greg from pa said:

    yeah, I can relate. 13
    yeah, I can relate. 13 months have past since I had chemo and radiation. sometimes wondered if I was ever gonna do solid food again. I was excited about getting dialated last dec. in hopes of being able to eat a regular Christmas dinner.It was not yet time ,I could not do it.Last summer saw a speech therapist and reciever shock therapy to the throat.This helped to a degree.I can now eat most things, it just took time to heal.I still eat slowly and drink almost a quart of milk with a meal to wash it down. best wishes to you. glad you found this site. Greg

    greg from pa
    I definitely will talk to my doctor next week about getting dialated and will mention shock therapy to the throat. By all the postings I have read, it looks like everything just takes a long time. I have always been very active and now I have to adjust to taking it easy and be patient.
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #12
    greg from pa said:

    yeah, I can relate. 13
    yeah, I can relate. 13 months have past since I had chemo and radiation. sometimes wondered if I was ever gonna do solid food again. I was excited about getting dialated last dec. in hopes of being able to eat a regular Christmas dinner.It was not yet time ,I could not do it.Last summer saw a speech therapist and reciever shock therapy to the throat.This helped to a degree.I can now eat most things, it just took time to heal.I still eat slowly and drink almost a quart of milk with a meal to wash it down. best wishes to you. glad you found this site. Greg

    greg from pa
    I definitely will talk to my doctor next week about getting dialated and will mention shock therapy to the throat. By all the postings I have read, it looks like everything just takes a long time. I have always been very active and now I have to adjust to taking it easy and be patient.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #13
    keep_the_faith said:

    Sweetblood22
    I use either baking soda or biotene toothpaste then rinse my mouth with biotene mouthwash. The freshness in my mouth doesn't last long, only five minutes and then it's dry again. I use tic tacs and this really helps. I've had my G-tube in 11 months. Did they give you a local to take the tube out?

    Biotene also makes a thicker
    Biotene also makes a thicker dry mouth gel, in a tube, and a liquid in a tiny bottle. If you use the rinse, and then stick a bit of gel in your mouth, it can last about an hour or two, if you keep your mouth closed, and don't talk. the gel is good for night time, because it's pretty thick.

    No local for the tube. When I had it removed, it was a balloon tube at that point. (I had three different kinds over the 18 months) It did sting and bleed a bit. It feels so wonderful to get that thing out. :)
  • Peeps
    Peeps Member Posts: 6
    #14
    Eating problems
    Yes, I've been there too. Creamed soups and milkshakes have been my diet mostly. My speech therapist recently gave me more tips to eat things a little more solid. He said to put my head down when I swallow to make the opening in the back of the throat smaller so the food will go down. Also to put the food on the side where the real tongue is because that side swallows better.

    I do find at times that the food is sticking to the roof of my mouth and won't move so I take the teaspoon and scrape it off. It takes me an hour to eat supper. It takes a half hour if I have pureed soup.

    My speech therapist also gave me tongue exercises to make it stronger and they help too.

    I'm grateful that I can still taste the food.
    Now if I could find a way to be patient! LOL!
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #15
    Same here!
    Still struggling somewhat, to eat normally, 18 months later. I had the surgery/radiation/chemo combination. I never got a stricture, but I have trouble swallowing. I discussed it again with my Stanford doc yesterday. The radiation apparently causes fibrosis of the throat muscles. They still work, only not so well, and the muscles don't all work together. A bite of food doesn't get hung up anywhere, but it can take three or four swallows before it gets all the way down. Water helps push it along. He says it will probably always be like this now.

    Dry mouth - I have so many coping mechanisms now, as I need to do a lot of talking at work, and sometimes public speaking. I have a small bag of ALL the Biotene products in my purse - which is now a small backpack, to allow me to carry along all the water I will need. Spray, gel, rinse, gum, toothpaste, fluoride floss...

    Deb
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #16
    Peeps said:

    Eating problems
    Yes, I've been there too. Creamed soups and milkshakes have been my diet mostly. My speech therapist recently gave me more tips to eat things a little more solid. He said to put my head down when I swallow to make the opening in the back of the throat smaller so the food will go down. Also to put the food on the side where the real tongue is because that side swallows better.

    I do find at times that the food is sticking to the roof of my mouth and won't move so I take the teaspoon and scrape it off. It takes me an hour to eat supper. It takes a half hour if I have pureed soup.

    My speech therapist also gave me tongue exercises to make it stronger and they help too.

    I'm grateful that I can still taste the food.
    Now if I could find a way to be patient! LOL!

    Peeps
    Peeps,

    I'm just waiting to get the referral to the speech therapist. It takes me forever to eat too. I have no appetite and have to force myself to eat. What kind of surgery did you have and how long has it been? It's tough to be patient, but I'm a trooper.
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #17
    D Lewis said:

    Same here!
    Still struggling somewhat, to eat normally, 18 months later. I had the surgery/radiation/chemo combination. I never got a stricture, but I have trouble swallowing. I discussed it again with my Stanford doc yesterday. The radiation apparently causes fibrosis of the throat muscles. They still work, only not so well, and the muscles don't all work together. A bite of food doesn't get hung up anywhere, but it can take three or four swallows before it gets all the way down. Water helps push it along. He says it will probably always be like this now.

    Dry mouth - I have so many coping mechanisms now, as I need to do a lot of talking at work, and sometimes public speaking. I have a small bag of ALL the Biotene products in my purse - which is now a small backpack, to allow me to carry along all the water I will need. Spray, gel, rinse, gum, toothpaste, fluoride floss...

    Deb

    D Lewis
    Deb,

    Toothpaste burns my tongue and mouth - can't use it. I use nothing but baking soda to brush my teeth and then it tastes salty. I drink milk, then a little water and then put a Tic Tac in my mouth for the dryness. The Tic Tac's really help the dryness.

    I choked on a vitamin pill and had to go to the hospital. Fortunately, I was able to get it down as it was a gel tablet. I'm so afraid that I'm going to choke on food.

    Anne
  • Hondo
    Hondo Member Posts: 6,636 Member
    #18
    keep_the_faith said:

    Hi Hondo
    I love this site. It's more informative than my support group at the hospital. Here I can relate to everyone.

    I want to be able to travel. I guess I'll just have to pack a large can of protein powder and then mix it with fruit juice in the hotel room.

    As time goes on, the nerves should regenerate in your face. Try massaging your face several times a day to get better blood flow. I don't know if this will work but I do this on my throat and on my arm where they took a vein out for my mouth.

    Thanks for writing,
    Keep the Faith

    Hi Anne
    Massaging the face is what I do everyday as it hurts and some how massaging it makes it feel better. I am trying acupuncture but had to hold off for a few weeks due to problems with infection in the head again. But I really can’t complain because there are so many others who are far worse then I am so I just sing my little song one day at a time sweet Jesus.

    Wishing you well
    ╠╣ONDO
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #19
    Hondo said:

    Hi Anne
    Massaging the face is what I do everyday as it hurts and some how massaging it makes it feel better. I am trying acupuncture but had to hold off for a few weeks due to problems with infection in the head again. But I really can’t complain because there are so many others who are far worse then I am so I just sing my little song one day at a time sweet Jesus.

    Wishing you well
    ╠╣ONDO

    Will do
    Hondo,

    Thanks, I will start massaging my face. I just love everyone's responses.

    I wish you well too!
    Keep the Faith
  • Hondo
    Hondo Member Posts: 6,636 Member
    #20
    keep_the_faith said:

    D Lewis
    Deb,

    Toothpaste burns my tongue and mouth - can't use it. I use nothing but baking soda to brush my teeth and then it tastes salty. I drink milk, then a little water and then put a Tic Tac in my mouth for the dryness. The Tic Tac's really help the dryness.

    I choked on a vitamin pill and had to go to the hospital. Fortunately, I was able to get it down as it was a gel tablet. I'm so afraid that I'm going to choke on food.

    Anne

    Hi Anne

    I thought I was the only one who had to go to the ER for a pill stuck in the throat. I knew it was too big when I looked at it but like a knucklehead I put it in and took a big swallow with a big glass of water and nothing happened. The water went down but the pill was stuck between my throat and nasal way and nothing I could do would move it. When I got to the ER and after paying my 300 dollars the doc looked at me and said oh it will dissolve in about 20 min and you will be OK. Now days I have a pill crusher it only cost 3.00 dollars. So I save me 297 dollars every time I use it.

    Wishing you well
    ╠╣ONDO
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #21
    Hondo said:

    Hi Anne

    I thought I was the only one who had to go to the ER for a pill stuck in the throat. I knew it was too big when I looked at it but like a knucklehead I put it in and took a big swallow with a big glass of water and nothing happened. The water went down but the pill was stuck between my throat and nasal way and nothing I could do would move it. When I got to the ER and after paying my 300 dollars the doc looked at me and said oh it will dissolve in about 20 min and you will be OK. Now days I have a pill crusher it only cost 3.00 dollars. So I save me 297 dollars every time I use it.

    Wishing you well
    ╠╣ONDO

    Hi Hondo
    You got off cheap. It cost me $800. I went to the hospital by ambulance - what a rip off for a 5 minute ride. Never again, I'll drive myself. Okay, so you crush your pills. I have a pill crusher too but I don't think that the Vitamin E horsepills come in a crushable pill, only gels. I did find a bottle of liquid vitamins at Costco.

    P.S. I also felt like a knuclehead when I tried to swallow that multivitamin horsepill. I knew it was too big.

Discussion Boards