Eating Ability

KDDavis
KDDavis Member Posts: 34
in Head and Neck Cancer #1
Before I was diagnosed with tonsil cancer I was the kind of fellow that made the management of the all you can eat buffets nervous. Now, 13 weeks post treatment, I can east solid foods again without assistance from meds like Mary's Magic. As a matter of fact, I stopped taking all pain meds about a week ago (was taking roxicet but thought I was getting to used to it).

I still have to take it very easy when eating and can't eat with a gusto like before because it still hurts a tad to swallow. I don't think there are any sores of significance because I can even eat spicy foods to a much greater extent than a month ago. I can't describe it but swallowing just isn't as easy now. In some dark corner of my brain I like this because I don't want to pack on the 45 pounds I lost as a result of the cancer treatments.

So, my question to those of you way past the treatment stage is this: Does the ability to eat and swallow ever return to the ease you had before cancer or have you experience continued difficulty to some extent?

Many thanks!

Kent
«1

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    eating
    If treatment included surgery and/or radiation, there is a possibility that your esophagus has been scarred to some degree, and that there may even be swelling. Talk to your docs, if this is the case, about getting a dilation or two to expand the esophagus. It is better to control your diet through will than lack of ability, I am sure you will agree.

    Take care,

    Joe
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Kent
    It all depends on the type of C you had, I know with me having NPC three times eating is a very difficult thing. My mouth only opens 20mm and my Swallowing was damaged by a damage nerves from the treatment so I eat very slow. What takes someone only a few minutes to eat may take me an hour. I was 230lbs before this and now I am 156lbs and try as I may can’t gain a pound.

    Wishing you the best
    Hondo
  • adventurebob
    adventurebob Member Posts: 691
    #4
    Eating
    Different for each of us but I've almost got all of mine back. A little dry sometimes but barely noticeable. It did take 3-4 months though.

    AB
  • CajunEagle
    CajunEagle Member Posts: 408
    #5
    Nope........It doesn't
    I'm 27 months from the end of treatment for Tonsil C, and I'm resigned to the fact that I'm stuck with taking sips of liquid with everything that I attempt to swallow. Or heck, it might be that I'm just in a bad habit of doing so, or I'm not wanting to aspirate or gag on any food source again......I don't know. The taste of anything that I eat is not a problem. Must be my lack of saliva glands that are the main culprit, but then again WAAD.
    (we are all different).

    Larry
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    For me, I am not anywhere
    For me, I am not anywhere near like I was before cancer, but I ' have come a long way, baby.' I am at least able to eat pretty normal foods now, and through sheer perseverance I have managed to get to 115 pounds. I was 120-125 before cancer. I have to work pretty hard at eating, and have had to learn to push through, and keep eating when it takes me two hours to eat a plate of food. I don't think buffets will be in any fear when they see me coming, for sure.

    I think if you are doing this well, eating solid food already, and you are only 13 weeks out, then you will likely get it all or most of it back. My issues are the stricture, and I only have the one salivary gland left, which was fricasseed by radiation. :)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Ahhhh Yes It Does
    Hi Kent,

    In my case it has returned to at least 90 - 95%, buffett's get nervous when they see me, LOL....

    I'm over two years post treatment for STGIII SCC HPV+ Tonsil Cancer. I had pretty near the full regime' minus a neck dissesction. I had the tonsils out then basically sixteen weeks of chemo and chemo/rads.

    I also had anything from percocet, oxicotin, hydrocodon to roxanal (morphone) either liqguid or capsuls.

    It took more than a year and actually I think I'm still improving taste wise. But eventually little by little most has been restored.

    Hang in there and hopefully you'll eventually get more taste and saliva back.

    I did have some problems for a long time with drier and crunchy foods, breads, crackers, chips, etc...always felt like I had a popcorn kernel stuck in my throat...it also went away eventually. Some meats are still more dry than they used to be, but I have compensated by learning what works best and try the others later in time.

    Best,
    John
  • KDDavis
    KDDavis Member Posts: 34
    #8
    Hondo said:

    Hi Kent
    It all depends on the type of C you had, I know with me having NPC three times eating is a very difficult thing. My mouth only opens 20mm and my Swallowing was damaged by a damage nerves from the treatment so I eat very slow. What takes someone only a few minutes to eat may take me an hour. I was 230lbs before this and now I am 156lbs and try as I may can’t gain a pound.

    Wishing you the best
    Hondo

    Hondo, many thanks! I have
    Hondo, many thanks! I have scar tissue as well from my tonsillectomy and tumor removal and can't open my mouth as wide as before. Matter of fact, I dread the feeling of a yawn coming on because it's not a very pleasant experience. I can't keep up with eating next to my kids (8 & 10) anymore because they get done with theirs and then ask if I'm going to eat the rest of mine. Bear in mind I'm eating as fast as I can!

    Thank you again for sharing your experiences.

    Kent
  • KDDavis
    KDDavis Member Posts: 34
    #9
    Hondo said:

    Hi Kent
    It all depends on the type of C you had, I know with me having NPC three times eating is a very difficult thing. My mouth only opens 20mm and my Swallowing was damaged by a damage nerves from the treatment so I eat very slow. What takes someone only a few minutes to eat may take me an hour. I was 230lbs before this and now I am 156lbs and try as I may can’t gain a pound.

    Wishing you the best
    Hondo

    Hondo, many thanks! I have
    Hondo, many thanks! I have scar tissue as well from my tonsillectomy and tumor removal and can't open my mouth as wide as before. Matter of fact, I dread the feeling of a yawn coming on because it's not a very pleasant experience. I can't keep up with eating next to my kids (8 & 10) anymore because they get done with theirs and then ask if I'm going to eat the rest of mine. Bear in mind I'm eating as fast as I can!

    Thank you again for sharing your experiences.

    Kent
  • KDDavis
    KDDavis Member Posts: 34
    #10
    CajunEagle said:

    Nope........It doesn't
    I'm 27 months from the end of treatment for Tonsil C, and I'm resigned to the fact that I'm stuck with taking sips of liquid with everything that I attempt to swallow. Or heck, it might be that I'm just in a bad habit of doing so, or I'm not wanting to aspirate or gag on any food source again......I don't know. The taste of anything that I eat is not a problem. Must be my lack of saliva glands that are the main culprit, but then again WAAD.
    (we are all different).

    Larry

    Larry, I think I stil have
    Larry, I think I stil have my salivary glands - I think they just don't produce much in the way of saliva anymore. I'm right there with you when it comes to having to take sips of liquid to get stuff down. I can barely eat a sandwich without a 5 gallon bucket of water next to me.

    Kent
  • KDDavis
    KDDavis Member Posts: 34
    #11
    sweetblood22 said:

    For me, I am not anywhere
    For me, I am not anywhere near like I was before cancer, but I ' have come a long way, baby.' I am at least able to eat pretty normal foods now, and through sheer perseverance I have managed to get to 115 pounds. I was 120-125 before cancer. I have to work pretty hard at eating, and have had to learn to push through, and keep eating when it takes me two hours to eat a plate of food. I don't think buffets will be in any fear when they see me coming, for sure.

    I think if you are doing this well, eating solid food already, and you are only 13 weeks out, then you will likely get it all or most of it back. My issues are the stricture, and I only have the one salivary gland left, which was fricasseed by radiation. :)

    Sweetblood - you are a true
    Sweetblood - you are a true trooper and I have a great deal of admiration for how you have handled your treatment and subsequent trials of recovery. I am now eating like my Mother always told me to - slowly! I think mine will come back as well but I can already tell my tastes for some of my old favorites, i.e. ice cream have a long way to go.

    Take care and thanks for the note back!

    Kent
  • KDDavis
    KDDavis Member Posts: 34
    #12
    Skiffin16 said:

    Ahhhh Yes It Does
    Hi Kent,

    In my case it has returned to at least 90 - 95%, buffett's get nervous when they see me, LOL....

    I'm over two years post treatment for STGIII SCC HPV+ Tonsil Cancer. I had pretty near the full regime' minus a neck dissesction. I had the tonsils out then basically sixteen weeks of chemo and chemo/rads.

    I also had anything from percocet, oxicotin, hydrocodon to roxanal (morphone) either liqguid or capsuls.

    It took more than a year and actually I think I'm still improving taste wise. But eventually little by little most has been restored.

    Hang in there and hopefully you'll eventually get more taste and saliva back.

    I did have some problems for a long time with drier and crunchy foods, breads, crackers, chips, etc...always felt like I had a popcorn kernel stuck in my throat...it also went away eventually. Some meats are still more dry than they used to be, but I have compensated by learning what works best and try the others later in time.

    Best,
    John

    John, did you ever feel as
    John, did you ever feel as if you were developing an addiction to the pain medicine? The reason I ask is I was taking roxicet for a while and thoroughly enjoyed the complete mellowness it brought on. My doctor gave me my first prescription with 500ml. I got a second one when it ran out. When the second one was getting low I started getting nervous! I remember being very anxious when I called to get it refilled but he did with no questions asked. I've stopped taking it now because it had me so concerned! Course, the pain isn't nearly as bad as it was.

    Kent
  • KDDavis
    KDDavis Member Posts: 34
    #13
    soccerfreaks said:

    eating
    If treatment included surgery and/or radiation, there is a possibility that your esophagus has been scarred to some degree, and that there may even be swelling. Talk to your docs, if this is the case, about getting a dilation or two to expand the esophagus. It is better to control your diet through will than lack of ability, I am sure you will agree.

    Take care,

    Joe

    Joe, yes, I do agree
    Joe, yes, I do agree wholeheartedly. Perhaps when it's all said and done it will be the motivation I need to continue a more healthy diet. Thanks for the note.

    Kent
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    KDDavis said:

    Hondo, many thanks! I have
    Hondo, many thanks! I have scar tissue as well from my tonsillectomy and tumor removal and can't open my mouth as wide as before. Matter of fact, I dread the feeling of a yawn coming on because it's not a very pleasant experience. I can't keep up with eating next to my kids (8 & 10) anymore because they get done with theirs and then ask if I'm going to eat the rest of mine. Bear in mind I'm eating as fast as I can!

    Thank you again for sharing your experiences.

    Kent

    Hi Kent

    Did you look into using a Therabite unit to try and get more opening in your Jaw. It is a pretty good device and does help to get back some movement in the jaw bone. Kind of expensive a little over $500.00 bucks but worth the price if it opens you mouth.

    http://www.craniorehab.com/therabite-jaw-motion-rehab-system.html?gclid=CJeuq_q--KoCFShjTAodSyPiLg

    Let me know what you think.
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    KDDavis said:

    John, did you ever feel as
    John, did you ever feel as if you were developing an addiction to the pain medicine? The reason I ask is I was taking roxicet for a while and thoroughly enjoyed the complete mellowness it brought on. My doctor gave me my first prescription with 500ml. I got a second one when it ran out. When the second one was getting low I started getting nervous! I remember being very anxious when I called to get it refilled but he did with no questions asked. I've stopped taking it now because it had me so concerned! Course, the pain isn't nearly as bad as it was.

    Kent

    Percocet, Oxycodone, Hydrocodone & Roxanol
    I used all of these, either tablet or liquid....

    I never really worried about it personally. I have always felt if used as prescribed and for the purpose prescribed that I wouldn't become dependent. Not saying that some people don't, they are heavy drugs.

    My feelings ere that I need them for the pain to get me through treatment. If I became dependent upon them, I'd deal with that after the fact. I needed to stay alive through treatment first.

    My MD's monitored me pretty close, also telling me that if I needed anything or had some symptom to let them know, they had something for it.

    I even had a prescription for Liquid Roxanol (morphine) when my Percocets ran out. But it made me nauseous doing nothing for my throat pain. So she prescribed more Percocets for me...I'd dissolve one in a little water.

    If you need pain meds, ask for them...that's what they are for, deal with the other later if need be.

    Best,
    John
  • buzz99
    buzz99 Member Posts: 404
    #16
    Eating
    It took about 2 months after the end of treatment for Buzz to start eating again. Now at 7 months post treatment, he can eat just about anything with the exception of spicy foods and dry foods. Gravy has become his best friend. He has pretty much maintained his weight but is 17 pounds lighter than he was pre-treatment. You will get to the point where you will enjoy food again. Karen
  • Greend
    Greend Member Posts: 678
    #17
    Eating
    I had tonsil cancer and never regained any of my saliva. I too would take a bite and then a sip of water. I recall the first and only time I tried a steak, one hour and a gallon of water I was done. I juat had to accept I would be the last one finished at any meal which is ironic because before C I was always the first one done.


    My new normal.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #18
    Skiffin16 said:

    Percocet, Oxycodone, Hydrocodone & Roxanol
    I used all of these, either tablet or liquid....

    I never really worried about it personally. I have always felt if used as prescribed and for the purpose prescribed that I wouldn't become dependent. Not saying that some people don't, they are heavy drugs.

    My feelings ere that I need them for the pain to get me through treatment. If I became dependent upon them, I'd deal with that after the fact. I needed to stay alive through treatment first.

    My MD's monitored me pretty close, also telling me that if I needed anything or had some symptom to let them know, they had something for it.

    I even had a prescription for Liquid Roxanol (morphine) when my Percocets ran out. But it made me nauseous doing nothing for my throat pain. So she prescribed more Percocets for me...I'd dissolve one in a little water.

    If you need pain meds, ask for them...that's what they are for, deal with the other later if need be.

    Best,
    John

    John

    I should have known when I first saw you that you were a druggy, lol, Oxycodone & Hydrocodone here as well. I agree we need to do what we need to do to stay alive and get us through treatment, deal with everything else afterwards.

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    Hondo said:

    John

    I should have known when I first saw you that you were a druggy, lol, Oxycodone & Hydrocodone here as well. I agree we need to do what we need to do to stay alive and get us through treatment, deal with everything else afterwards.

    Hondo

    PEGLESS
    SHHHH, now you know my secret of getting through treatment without having a PEG, LOL....
  • nwasen
    nwasen Member Posts: 235 Member
    #20
    Eating ability
    I was diagnosed with stage 4 tongue and 3 nodes a year ago tomorrow (!)my treatments started the end of Oct and my last treatment was the week before Xmas. Had help in spring from speech therapist and two throat stretches. Had my PEG removed in July. It is a long frustrating journey but I am very thrilled to say that for the most part, I can eat about 80 percent of what I did before.
    We are all different and I guess I have been one of the lucky ones. I still have a bit of trouble swallowing some things (cereal in milk, bread, some meats) but I am EATING and I never thought last January that it would ever be again.
    Hang in there and keep trying. See a therapist if you have trouble swallowing. There are things you can do.
    good luck to you!
    peace, Nancy aka toughcookie
  • Mashedpotatoe
    Mashedpotatoe Member Posts: 3
    #21
    No problems swallowing
    I'm approximately 2.5 years out from completing treatment for stage IVa SCC on my tonsils. My treatment included a tonsilectomy followed by six weeks of IMRT radiation therapy twice a day concurrent with two sessions of high dose cisplatin (scheduled for three but cancelled last treatment due to ototoxicity. I can tell you that, at this point, I have no significant degradation in quality of life in any aspect; including ability to eat and enjoy food! It took about 9 months for my tastes to return to "normal" and I have not noted any issues with eating since then. I did force myself to eat during my treatment because I did not want to deal with a feeding tube during treatment. I found that ramen noodles (drained with no flavor pack mixed) and milk with carnation instant breakfast mixed (chocolate flavor) was tolerable with the change/loss of taste resulting from the radiation and chemo treatments and the ramen noodles in particular pack in a lot of calories. I have had some productive changes in taste since my treatment: I now prefer dark chocolate over milk chocolate and certain vegetables taste better than they used to (e.g. asparugus, brocholli, and spinach). I don't recall how long it took for my swallowing to feel normal but I believe it took several weeks.

    From what I have read, I think forcing myself to eat during treatment helped prevent some of the complications others have had with eating post treatment.

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