during radiation, i'm having trouble swallowing anything

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CiAnnaBananna
CiAnnaBananna Member Posts: 105
edited March 2014 in Head and Neck Cancer #1
Hey Guys. I am 28 and have Hodgkins Lymphoma and usually post on those boards, but I decided you guys might be more help with this problem. I have just finished up 6 months of chemo and am currently going through radiation treatments. The doctor told me I may have trouble swallowing but I had no idea it would be this bad. My throat is so sore and swallowing anything feels like i'm swallowing shards of glass. I'm also having an insane problem with acid reflux and heart burn. The doctor gave me some stuff called "Larry's Solution" and I'm supposed to take it 15 minutes before I eat and it is supposed to help numb the esophagus to help with eating. WELL, naturally it isn't helping at all!

I'm wondering if there is any advice anyone can give me? I've read several topics tonight about eating egg drop soup, so that is going to be on my list tomorrow to try. I dont' even like swallowing my own saliva. I find myself just spitting it out. Apparently alot of you guys are doing that as well! Help!!!

-CiAnna

Comments

  • Pam M
    Pam M Member Posts: 2,196
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    Hi. I'm Pam. I'm Strong and Brave
    CiAnna,

    Sorry you're having a hard time. I finished my treatments in March - like many here, I had to use a feeding tube for a while.

    It may help to do a salt/baking soda/water rinse throughout the day. the amount of salt and baking soda in the water should be whatever you're comfortable with. I usually used a regular water bottle with a teaspoon each of salt and baking soda. Rinse (and gargle, if you can) several times a day.

    My doc gave me "Miles Mixture". Like you, I didn't feel it did much, if anything to help. Igot more help from viscous Lidocaine - it really helped me eat.

    During chemo, I developed acid reflux type issues. My doc put me on something like Prilosec or Previcid (don't recall the name); it seemed to help. Also, sleeping on your left side is better than sleeping on the right, and elevating your upper body help. I've also heard that Aloe juice really helps, but I never tried it.

    Very soon, you'll get several people posting, giving tips (gotta love this place!). I hope you get some useful advice. Do well.
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
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    Pam M said:

    Hi. I'm Pam. I'm Strong and Brave
    CiAnna,

    Sorry you're having a hard time. I finished my treatments in March - like many here, I had to use a feeding tube for a while.

    It may help to do a salt/baking soda/water rinse throughout the day. the amount of salt and baking soda in the water should be whatever you're comfortable with. I usually used a regular water bottle with a teaspoon each of salt and baking soda. Rinse (and gargle, if you can) several times a day.

    My doc gave me "Miles Mixture". Like you, I didn't feel it did much, if anything to help. Igot more help from viscous Lidocaine - it really helped me eat.

    During chemo, I developed acid reflux type issues. My doc put me on something like Prilosec or Previcid (don't recall the name); it seemed to help. Also, sleeping on your left side is better than sleeping on the right, and elevating your upper body help. I've also heard that Aloe juice really helps, but I never tried it.

    Very soon, you'll get several people posting, giving tips (gotta love this place!). I hope you get some useful advice. Do well.

    thanks
    alot of good advice in there! i'm desperate for any type of relief. I'll have to ask my doc monday about prilosec or something!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    thanks
    alot of good advice in there! i'm desperate for any type of relief. I'll have to ask my doc monday about prilosec or something!

    Sorry you are in so much
    Sorry you are in so much pain. You didn't say whether you have a peg tube or not. It is essential that you make sure you are getting nutrients, calories, and hydration at this critical time. I was in pain, with terrible mouth sores very quickly and had to rely on my tube alone. You do need to keep trying to swallow so that you don't lose your ability to swallow. Having said that, I wasn't able to continue.

    There is the magic swizzle, magic mouthwash you can get by perscription. It's liquid lidocaine, malox and benedryl. I also had to be put on a fentanyl patch and had a liquid narcotic for break thru pain.

    You don't look like you have any weight to lose so keep an eye on your weight. Best of luck to you.

    Blessings,

    Sweet
  • Pam M
    Pam M Member Posts: 2,196
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    thanks
    alot of good advice in there! i'm desperate for any type of relief. I'll have to ask my doc monday about prilosec or something!

    Off Chemo, Now?
    CiAnna,
    Are you off chemo now? Just remembered - part of what probably caused my pain was the fact that the chemo killed off my good bacteria in my GI tract. I did yogurt smoothies to help them regroup. If that's the case with you, you can do the yogurt smoothies. If you have mouth sores or the yogurt just burns your throat too much, you can get probiotics at the drugstore - just ask the pharmacist.

    Also - I found that cool or cold wraps around my neck seemed to provide a little relief.

    and - Is your hair personal choice, or result of chemo? Either way, I think it suits you.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Pam M said:

    Off Chemo, Now?
    CiAnna,
    Are you off chemo now? Just remembered - part of what probably caused my pain was the fact that the chemo killed off my good bacteria in my GI tract. I did yogurt smoothies to help them regroup. If that's the case with you, you can do the yogurt smoothies. If you have mouth sores or the yogurt just burns your throat too much, you can get probiotics at the drugstore - just ask the pharmacist.

    Also - I found that cool or cold wraps around my neck seemed to provide a little relief.

    and - Is your hair personal choice, or result of chemo? Either way, I think it suits you.

    I agree, your picture is
    I agree, your picture is strikingly beautiful! You are stunning!
  • KristynRuth86
    KristynRuth86 Member Posts: 140
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    I agree, your picture is
    I agree, your picture is strikingly beautiful! You are stunning!

    I also think you are
    I also think you are beautiful! As sweet already said, the fentanyl patch is what helped me be able to swallow anything. Before the patch I could hardly get a drip of water down. Good luck love, I hope everything turns out rosy for you!
  • skybo
    skybo Member Posts: 1
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    trouble swallowing
    HI.

    I went thru treatments nearly 3 years ago.

    My dentist saved me! well...along with radiation and chemo!

    I followed online advice to go see my dentist and get my teeth in shape before the treatments.

    He gave me a sample pack of BIOTENE products!! I still use them to this day!

    I started using the products before I started radiation, but I am sure these will help you now....

    this is what i did. and the Dr's were amazed at how well I went thru 12 weeks of radiation therapy! They insisted that I have a feeding tube put in BEFORE they would start my treatments, and said I would need to use it within a couple of weeks.

    I DID NOT HAVE TO USE IT ONCE! IT GOT CLOSE! but the advice from my dentist worked!
    this is what I did.

    BUY A WATERPIK
    BUY ALL THE BIOTENE PRODUCTS YOU CAN FIND. they make a rinse, toothpaste, mouth spray, jell.

    BUY A WATERPIK
    SODA
    BIOTENE RINSE
    BIOTENE JELL
    BIOTENE TOOTHPASTE
    'ACTIVE' YOGURTS

    In the waterpik, I mixed several ounces of Biotene rinse. a couple of tbls of soda, warm water.....put the waterpik on a low to med power level.....rinse your mouth several times a day! Now that you already have the sores, etc....Its gonna hurt! lowering the power level of the water pik will help ease that.

    mix this mixture up in a bottle of some sort and keep it with you! U CANNOT USE THIS ENOUGH!

    It helps heal the sores, IT WORKED!

    keep your mouth and throat 'moist', the 'active' ingredients of the Yogurt helps heal the sores also!

    Good luck! God Bless!
  • Scambuster
    Scambuster Member Posts: 973
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    L-Glutamine
    Hi CiAnna,

    Sorry to hear you are hurting. Rads can be brutal. I assume you getting it in the neck area ??

    For you poor throat and mouth, L-Glutamine powder is a very good and important supplement that will help heal the mucosa (all internal tissue from your mouth, right through your digestive tract). Get the powder form and take 2-3 heaped teaspoons mixed in a glass of water or leave a large glass mix around around to sip on through the day. You will find you can drink it and it won't hurt.

    For the acid reflux, probably the best med is NEXIUM. It is a PI (Proton pump inhibitor which reduce the production of gastric acids).
    If you are taking the Protein shakes from the hospital, they are possibly aggravating the symptoms, as they are dairy based. If you need a nutrition drink, try to find one that is vegetable based. PM me if you need more info.

    If you are losing too much weight, you should consider the PEG as an option. This a temporary very effective way to get nutrition into you if normal eating becomes too difficult.

    The Biotene products are excellent. I recently got an Oral B 'Sonic' Electric toothbrush and i highly recommend these.

    I was hospitalized for - 4 weeks during Rads and Chemo (SCC left tonsil), had the PEG, the pain and the reflux. I follow a regime of supplements and diet now which I believe has helped my recovery enormously. Your body, now more than ever. needs all the right nutrients to allow it to cope and recover, so I hope you consider this.

    Hope these ideas help you.

    Scambuster
  • ekdennie
    ekdennie Member Posts: 238 Member
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    radiation help
    CiAnna, I am currently going though radiation therapy. my mucous is thick and there is not much I am able to eat. I am currently taking morphine every 3-4 hours. I also use a 4 in 1 (Magic Mouthwash) before and while I try to eat or drink anything. I also use a mouth rinse called Caphosol. it is expensive, but it has helped so very much. you rinse with the solution 4-10 times per day, it acts like your saliva. it also has helped keep my saliva thin. I had developed a bunch of sores, and after I increased from 4 times to 9 times a day they have mostly healed up. they are still there, but they don't hurt as bad. I use a rinse of baking soda, salt and water in between doses.
    because the radiation causes burns you need to try foods that are cooler than you would normally eat, but not cold or frozen...that will hurt as well. try water without ice to help stay hydrated.
    I also take sips of water between every bite.
    I have found that room temperature slightly overcooked pasta with cheese based sauces goes down, but you could also put them in a blender and drink them.
    I drink a lot of Boost and a product called Scandishake. it has 600 calories in an 8 oz serving. 3 of those per day and I don't lose any weight. it is most important that whatever you try to eat is high in calories, that way you get the most bang for each bite.
    Since the pain seems to be in your throat you could buy some aloe from a health food store (not the kind you put on your skin, but there is a kind you can drink). it tastes bad, but it will help heal up your wounds.
    you need to try to swallow a little water every few minutes, it will hurt at first, but the more you drink the less it will hurt. hang in there...the radiation will be over before you know it! The water will also help with the saliva that you can't stand...it will make it thinner. it gets thick when you are dehydrated and from the lack of moisture from the radiation.

    I wish you a lot of luck and I am sending a hug with this note...everyone can use another hug! I have one more week of radiation left...I'll let you know if I find any other things that work...I am taking it a day at a time as my pain level keeps changing daily. Just try to remember that it will be over soon. if you lose too much weight, as for a PEG tube so that you can eat...you need some type of nutrition to help keep your strength up. please let me know if anything I said works for you!
    best of luck! keep up your strength! try to keep smiling! your picture is beautiful!
  • NW DINO
    NW DINO Member Posts: 31
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    RADIATION & SORE THROAT
    Hello! I just had my 14th radiation treatment Friday for BOT SCC. My 4th chemo treatment is Monday morning. I switched to Ebritux from Cisplatin due to increased ringing in the ears. My throat has just gotten quite sore & am using the PEG feeding tube (with a drip bag). I have found that just putting the 2 bottles of Ensure or the alternative formula in the drip bag is alot easier than using the syringe. Today was the 1st day where the saliva & mucous had become an issue (as it is VERY painful to swallow). I am asking for a rental unit to suck the saliva out - like a dentist. Two things I have found that helps the soreness in the mouth & throat; one is "Magic Mouthwash 2" & sipping FLAT diet ginger ale. Hope this helps - you are not alone!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    NW DINO said:

    RADIATION & SORE THROAT
    Hello! I just had my 14th radiation treatment Friday for BOT SCC. My 4th chemo treatment is Monday morning. I switched to Ebritux from Cisplatin due to increased ringing in the ears. My throat has just gotten quite sore & am using the PEG feeding tube (with a drip bag). I have found that just putting the 2 bottles of Ensure or the alternative formula in the drip bag is alot easier than using the syringe. Today was the 1st day where the saliva & mucous had become an issue (as it is VERY painful to swallow). I am asking for a rental unit to suck the saliva out - like a dentist. Two things I have found that helps the soreness in the mouth & throat; one is "Magic Mouthwash 2" & sipping FLAT diet ginger ale. Hope this helps - you are not alone!

    Flat diet Ginger ale.
    Flat MUG rootbeer also can work. Has to be Mug tho the others hurt.
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    Options
    Pam M said:

    Off Chemo, Now?
    CiAnna,
    Are you off chemo now? Just remembered - part of what probably caused my pain was the fact that the chemo killed off my good bacteria in my GI tract. I did yogurt smoothies to help them regroup. If that's the case with you, you can do the yogurt smoothies. If you have mouth sores or the yogurt just burns your throat too much, you can get probiotics at the drugstore - just ask the pharmacist.

    Also - I found that cool or cold wraps around my neck seemed to provide a little relief.

    and - Is your hair personal choice, or result of chemo? Either way, I think it suits you.

    I have finished chemo up
    I have finished chemo up about a month ago. I'm going through radiation now. And the haircut was not by choice. My hair started falling out back in May and i just buzzed it off. I could not handle all my hair falling out, it was just grossing me out.
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    Options

    Sorry you are in so much
    Sorry you are in so much pain. You didn't say whether you have a peg tube or not. It is essential that you make sure you are getting nutrients, calories, and hydration at this critical time. I was in pain, with terrible mouth sores very quickly and had to rely on my tube alone. You do need to keep trying to swallow so that you don't lose your ability to swallow. Having said that, I wasn't able to continue.

    There is the magic swizzle, magic mouthwash you can get by perscription. It's liquid lidocaine, malox and benedryl. I also had to be put on a fentanyl patch and had a liquid narcotic for break thru pain.

    You don't look like you have any weight to lose so keep an eye on your weight. Best of luck to you.

    Blessings,

    Sweet

    hey
    that picture was taken back in april when my chemo started. i gained 70lbs during chemo with all those dang steroids, so i've got the weight to lose. i just dont want to starve doing it! and no i don't have a tube or anything. the swallowing problem should only be temporary.
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    Options
    ekdennie said:

    radiation help
    CiAnna, I am currently going though radiation therapy. my mucous is thick and there is not much I am able to eat. I am currently taking morphine every 3-4 hours. I also use a 4 in 1 (Magic Mouthwash) before and while I try to eat or drink anything. I also use a mouth rinse called Caphosol. it is expensive, but it has helped so very much. you rinse with the solution 4-10 times per day, it acts like your saliva. it also has helped keep my saliva thin. I had developed a bunch of sores, and after I increased from 4 times to 9 times a day they have mostly healed up. they are still there, but they don't hurt as bad. I use a rinse of baking soda, salt and water in between doses.
    because the radiation causes burns you need to try foods that are cooler than you would normally eat, but not cold or frozen...that will hurt as well. try water without ice to help stay hydrated.
    I also take sips of water between every bite.
    I have found that room temperature slightly overcooked pasta with cheese based sauces goes down, but you could also put them in a blender and drink them.
    I drink a lot of Boost and a product called Scandishake. it has 600 calories in an 8 oz serving. 3 of those per day and I don't lose any weight. it is most important that whatever you try to eat is high in calories, that way you get the most bang for each bite.
    Since the pain seems to be in your throat you could buy some aloe from a health food store (not the kind you put on your skin, but there is a kind you can drink). it tastes bad, but it will help heal up your wounds.
    you need to try to swallow a little water every few minutes, it will hurt at first, but the more you drink the less it will hurt. hang in there...the radiation will be over before you know it! The water will also help with the saliva that you can't stand...it will make it thinner. it gets thick when you are dehydrated and from the lack of moisture from the radiation.

    I wish you a lot of luck and I am sending a hug with this note...everyone can use another hug! I have one more week of radiation left...I'll let you know if I find any other things that work...I am taking it a day at a time as my pain level keeps changing daily. Just try to remember that it will be over soon. if you lose too much weight, as for a PEG tube so that you can eat...you need some type of nutrition to help keep your strength up. please let me know if anything I said works for you!
    best of luck! keep up your strength! try to keep smiling! your picture is beautiful!

    i'm so excited that you are
    i'm so excited that you are almost done with radiation! I have 2 weeks left myself after going through 6 months of chemo. After reading everything that you guys are going through, i don't feel like i'm the only one out there going through this terrible swallowing issue.
  • ekdennie
    ekdennie Member Posts: 238 Member
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    i'm so excited that you are
    i'm so excited that you are almost done with radiation! I have 2 weeks left myself after going through 6 months of chemo. After reading everything that you guys are going through, i don't feel like i'm the only one out there going through this terrible swallowing issue.

    you are not alone!
    CiAnna, this swallowing issue has been the worse part of radiation for me, but the way I am trying to look at it is that a couple of weeks/months of difficulty is better than the alternative. I am keeping my fingers crossed that I don't have long term problems, but no one can guarantee that! You are not alone! I didn't have to have chemo...they were able to remove the whole tumor with clear margins. I am 31 and I had mucoepidermoid carcinoma on my hard palate that grew into my maxillary sinus and was pressing on my septum and my upper right jaw (intermediate grade, stage 4a clinically, stage 2 pathologically). they are doing an aggressive radiation treatment in hopes that I will never have a recurrence. (even with clear margins it is possible with my type of tumor...but I don't dwell on that). I am already planning what I will eat when it doesn't hurt to swallow so much! oh, and since it hurts to swallow and eat you might want to do jaw exercises three times a day (or more) so that your jaw doesn't lock up too much. I do at least three sets of 20 a day. followed by three sets of 20 sips of water to help with my swallowing. I have to numb my mouth for the jaw exercises, but I am unable to open very far and don't want it to get worse!
    I am a big fan of smiles and hugs...so you are getting both with this note! :) smile through the pain if you can...you are stronger than the pain of swallowing...you will overcome! :)
  • forme
    forme Member Posts: 1,161 Member
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    i'm so excited that you are
    i'm so excited that you are almost done with radiation! I have 2 weeks left myself after going through 6 months of chemo. After reading everything that you guys are going through, i don't feel like i'm the only one out there going through this terrible swallowing issue.

    Your not alone
    Hi CiAnna,
    I am glad to see you over here on the H& N board. I knew these wonderful folks would have tons of great advice for you. Your almost done, hang in..
    peaceful healing
    Lisha
  • CiAnnaBananna
    CiAnnaBananna Member Posts: 105
    Options
    ekdennie said:

    you are not alone!
    CiAnna, this swallowing issue has been the worse part of radiation for me, but the way I am trying to look at it is that a couple of weeks/months of difficulty is better than the alternative. I am keeping my fingers crossed that I don't have long term problems, but no one can guarantee that! You are not alone! I didn't have to have chemo...they were able to remove the whole tumor with clear margins. I am 31 and I had mucoepidermoid carcinoma on my hard palate that grew into my maxillary sinus and was pressing on my septum and my upper right jaw (intermediate grade, stage 4a clinically, stage 2 pathologically). they are doing an aggressive radiation treatment in hopes that I will never have a recurrence. (even with clear margins it is possible with my type of tumor...but I don't dwell on that). I am already planning what I will eat when it doesn't hurt to swallow so much! oh, and since it hurts to swallow and eat you might want to do jaw exercises three times a day (or more) so that your jaw doesn't lock up too much. I do at least three sets of 20 a day. followed by three sets of 20 sips of water to help with my swallowing. I have to numb my mouth for the jaw exercises, but I am unable to open very far and don't want it to get worse!
    I am a big fan of smiles and hugs...so you are getting both with this note! :) smile through the pain if you can...you are stronger than the pain of swallowing...you will overcome! :)

    good idea about the jaw
    good idea about the jaw exercises. last night i started coughing really bad and it led to me throwing up and eventually throwing up some blood. I think its because my throat is so raw that is just ripped it to shreds. i'm going to talk to my doctor today and see if there is anything else i can do cause my pain is out of control. i'm probably just being a big baby. this is terrible, but honestly for me, chemo was much worse. I at least don't feel that bad, i'm just sore. different kind of pain i guess.

    i'm glad you don't have to go through chemo, but i can only imagine the surgery wasn't very fun. And you are right, a few weeks or months of pain is much better than that alternative.

    hugs and smiles coming your way as well!
  • rozaroo
    rozaroo Member Posts: 665
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    Flat diet Ginger ale.
    Flat MUG rootbeer also can work. Has to be Mug tho the others hurt.

    CiAnna
    I am nine month's post treatment & suffered from terrible acid reflux. I couldn't keep anything down. Hubby ended up crushing up gravol & putting it in my tube & that helped. Dr finally prescribed medication called Pariat for acid reflux. Sip's of flat ginger ale & water to keep my swallowing in check. Eating was a huge challenge but the tube really helped & I did not loose any weight at all. I am now eating & my appetite is slowly coming back.I learned not to push the eating & kept making healthy shakes that would go down easy.
    Plus the baking soda & salt water mouth rinse helped immensly. U wish you my best during your treatment & recovery. By the way your photo is lovely!
    All my best
    Roz
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    SWALLOWING
    Hi CiAnna, welcome to this site. I had and am still having problems swallowing. I have so much mucous, I am also spitting out or suctioning away my own saliva. As far as the Acid Reflux goes, Can you take a Prevacid or Prillosec or something simillar. I switched to Zegarid as they make a powder form that my wife mixes with water and shoots into my PEG. I also supplement that with liquid Mylanta through the tube. I has just about knocked out all of the acid reflux I am having.

    I wish you the best on your journey.

    BEST!!!

    Mike
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    good idea about the jaw
    good idea about the jaw exercises. last night i started coughing really bad and it led to me throwing up and eventually throwing up some blood. I think its because my throat is so raw that is just ripped it to shreds. i'm going to talk to my doctor today and see if there is anything else i can do cause my pain is out of control. i'm probably just being a big baby. this is terrible, but honestly for me, chemo was much worse. I at least don't feel that bad, i'm just sore. different kind of pain i guess.

    i'm glad you don't have to go through chemo, but i can only imagine the surgery wasn't very fun. And you are right, a few weeks or months of pain is much better than that alternative.

    hugs and smiles coming your way as well!

    YOU ARE NOT A BABY
    You are human and the pain is more than most other people will ever experience. I use 150 Mics. of fentanyl via a skin patch and also use Liquid Concentrated OxyCodon as needed for the more severe pain. Make your Doc's treat the pain, they will. I can definitely say this is the worst medical pain I have ever been in, and like I said earlier, we are in a small group of people that others on the outside can never relate to unless they have to go through this.

    Hang in there and post often, the group has gotten me through more than one bad day.

    BEST!!

    Mike