mouth sores post radiation

2

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    John
    You realize I still have no clue how to make a link. I just use the template you made for me every time. :) Plus you did color. Lol.

    COLOR
    LOL, I got so carried away telling you about the Italics an Color...I spelled BOLD instead of COLOR, LOL....
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Skiffin16 said:

    COLOR
    LOL, I got so carried away telling you about the Italics an Color...I spelled BOLD instead of COLOR, LOL....

    Color.
    Oh. Lol. I see. :)
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Jimbo55 said:

    Way to Go Dom
    Dominic, Sounds like you're doing great. My first pizza several weeks post treatment smelled so good but tasted like cardboard. One bite was all I could manage. 6 months later and the pizza tastes great. I believe your taste will improve sooner rather than later. I began to notice improvement after about 1 week and it has been a steady progression since. Cheers

    Jimbo

    Dom
    I echo the welcome Deb, Sweet and Jimbo have extended, and great to hear of your Positive handling of C and treatment. Excellent.

    I also echo John and Hondo's contributions to this thread. For me, Hydrocodone was with me all thru treatment (got 100 pills/prescription), except when the Morph became necessary. I didn't have trouble getting rid of the Morph, but must advise that is probably because I didn't care for where it took me, so I didn't like the stuff. Would advise to not be wary of the pain meds, as they can also do good by reducing the stress the body experiences.

    kcass
  • Clearblue
    Clearblue Member Posts: 186
    Kent Cass said:

    Dom
    I echo the welcome Deb, Sweet and Jimbo have extended, and great to hear of your Positive handling of C and treatment. Excellent.

    I also echo John and Hondo's contributions to this thread. For me, Hydrocodone was with me all thru treatment (got 100 pills/prescription), except when the Morph became necessary. I didn't have trouble getting rid of the Morph, but must advise that is probably because I didn't care for where it took me, so I didn't like the stuff. Would advise to not be wary of the pain meds, as they can also do good by reducing the stress the body experiences.

    kcass

    14 days in
    Hi

    She is now 14 days into rads.inside cheek sores, lips and tounge.
    Her chin is red and lip, speacially bottom one is like blistered. Did u use the aquafor for the skin. Does it actaully help?

    Wish we could find something that actually anaethetises her mouth so that she can eat.
    For first time today, she said that she has a terrible taste in her mouth and also that most of the food burns or tastes bad.So eating less. The eating issues is worrying, just wish i could find something that would be palateable.

    She also asked me for first time what you guys say about this.
    Her breathing , has taken on a wheezing sound and she coughs alot, possib;y from phlegm or just swollen inside throat. So her sleep is disturbed.

    Got some of the MI paste. Is this like a flouride type mouthcare product?
    It reads like this?

    I wonder if its ok to use biotene stuff, eventhough she doesnt feel that she has drymouth?

    This is so familiar to all of you, i know.
    Cant imagine that if this is the dynamic, what each week will be like and how much shell be compromised.

    Hondo, SWEET, Deb,Kent, Rat ,Ekden,Jimbo,Connie,Sabrine
    Keep on posting, and personal tnx

    Clear
  • DrMary
    DrMary Member Posts: 531 Member
    Clearblue said:

    14 days in
    Hi

    She is now 14 days into rads.inside cheek sores, lips and tounge.
    Her chin is red and lip, speacially bottom one is like blistered. Did u use the aquafor for the skin. Does it actaully help?

    Wish we could find something that actually anaethetises her mouth so that she can eat.
    For first time today, she said that she has a terrible taste in her mouth and also that most of the food burns or tastes bad.So eating less. The eating issues is worrying, just wish i could find something that would be palateable.

    She also asked me for first time what you guys say about this.
    Her breathing , has taken on a wheezing sound and she coughs alot, possib;y from phlegm or just swollen inside throat. So her sleep is disturbed.

    Got some of the MI paste. Is this like a flouride type mouthcare product?
    It reads like this?

    I wonder if its ok to use biotene stuff, eventhough she doesnt feel that she has drymouth?

    This is so familiar to all of you, i know.
    Cant imagine that if this is the dynamic, what each week will be like and how much shell be compromised.

    Hondo, SWEET, Deb,Kent, Rat ,Ekden,Jimbo,Connie,Sabrine
    Keep on posting, and personal tnx

    Clear

    Thickener
    You can get the thickener from Resource (Nestle) - it's called "ThickenUp" and comes in packets that you mix with 6 oz of liquid. Doug didn't really like the texture but it did seem to be easier to swallow for the day or so that things were going down the wrong way.

    He also wheezed and coughed a lot, from the "thick saliva" - when he was really dehydrated and unable to take his spit pills, this was very bad. He coughed and spat rather than swallow for many weeks, but it did keep him from sleeping well.

    I was very worried about aspiration pneumonia because he really couldn't swallow well and had the wheezing. It turned out to be not much of a problem, but neither of us slept well during those times.

    Biotene burned - Caphasol seemed to help the most for the mouth sores. It seemed like forever at the time, but he got better very fast after the radiation stopped.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    DrMary said:

    Thickener
    You can get the thickener from Resource (Nestle) - it's called "ThickenUp" and comes in packets that you mix with 6 oz of liquid. Doug didn't really like the texture but it did seem to be easier to swallow for the day or so that things were going down the wrong way.

    He also wheezed and coughed a lot, from the "thick saliva" - when he was really dehydrated and unable to take his spit pills, this was very bad. He coughed and spat rather than swallow for many weeks, but it did keep him from sleeping well.

    I was very worried about aspiration pneumonia because he really couldn't swallow well and had the wheezing. It turned out to be not much of a problem, but neither of us slept well during those times.

    Biotene burned - Caphasol seemed to help the most for the mouth sores. It seemed like forever at the time, but he got better very fast after the radiation stopped.

    Clearblue
    The magic mouthwash or magic swizzle will numb her mouth. It is prescription. It's benedryl, maalox and lidocaine. The Biotene will probably burn her mouth. Aquaphor does help, I had a perscription for Radiaplex and I think it was better.

    I had blisters on my lips too and then the dang mask stuck to my lips and when they took the mask off it ripped off some of my lip. :/ Not good. We then put Saran Wrap on my lips before putting on the mask so that it wouldnt rip off my lip and keep making it bleed.
  • Clearblue
    Clearblue Member Posts: 186

    Clearblue
    The magic mouthwash or magic swizzle will numb her mouth. It is prescription. It's benedryl, maalox and lidocaine. The Biotene will probably burn her mouth. Aquaphor does help, I had a perscription for Radiaplex and I think it was better.

    I had blisters on my lips too and then the dang mask stuck to my lips and when they took the mask off it ripped off some of my lip. :/ Not good. We then put Saran Wrap on my lips before putting on the mask so that it wouldnt rip off my lip and keep making it bleed.

    lip service
    Her parched lip has very superficially startd to bleed and looks like skin on jaw might be headed in that direction too. Does she just continue to put these creams on it?
    Also ive heard from some that goats milk is good for mouth sores? Anyone got a goat?
    Clear
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Clearblue said:

    lip service
    Her parched lip has very superficially startd to bleed and looks like skin on jaw might be headed in that direction too. Does she just continue to put these creams on it?
    Also ive heard from some that goats milk is good for mouth sores? Anyone got a goat?
    Clear

    Old Goat's
    I think Dawn has a few in her immediate vicinity...;)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Skiffin16 said:

    Old Goat's
    I think Dawn has a few in her immediate vicinity...;)

    John!!!!!
    Omg! You are so bad!! Very funny. I feel slightly guilty for laughing out loud. Now I am coughing and cannot stop.
  • Clearblue
    Clearblue Member Posts: 186
    DrMary said:

    Thickener
    You can get the thickener from Resource (Nestle) - it's called "ThickenUp" and comes in packets that you mix with 6 oz of liquid. Doug didn't really like the texture but it did seem to be easier to swallow for the day or so that things were going down the wrong way.

    He also wheezed and coughed a lot, from the "thick saliva" - when he was really dehydrated and unable to take his spit pills, this was very bad. He coughed and spat rather than swallow for many weeks, but it did keep him from sleeping well.

    I was very worried about aspiration pneumonia because he really couldn't swallow well and had the wheezing. It turned out to be not much of a problem, but neither of us slept well during those times.

    Biotene burned - Caphasol seemed to help the most for the mouth sores. It seemed like forever at the time, but he got better very fast after the radiation stopped.

    learning sometjing new every day/
    "spit pills"?
    Clear
  • Clearblue
    Clearblue Member Posts: 186
    Clearblue said:

    learning sometjing new every day/
    "spit pills"?
    Clear

    proplois
    Ive read sporadic articles on propolis mouth gel for mouth sores,
    but cant seem to find a brand of the stuff anywhere.
    see article:

    http://www.associatedcontent.com/article/6052578/a_new_natural_mouth_ulcer_gel.html?cat=70
  • akbear49
    akbear49 Member Posts: 51
    7 days post treatment
    I completed my 35 radiation treatments 7 days ago and my 3rd and final round of Cisplatin 14 days ago

    I have been gargling with salt and baking soda for the entire treatment phase and that seemed to work quite well keeping my mouth and throat from ever getting too sore. The Biotene mouthwash seemed to make my saliva thicken and I really didn't care for it.

    Now I have mouth sores and an earache which brought me here. Wish I had found this site earlier. It seems like the medical community doesn't share a lot of their knowledge with you unless you ask a specific question. I suspect it is because we are seeing so many care providers they all just assume someone else must have already told you.

    As far as eating goes, I gave up on any solid foods about a month into treatment, everything I tried to eat tasted the same, like crap. I quickly developed a very salty taste in my mouth that persists to this day. I can still taste foods but the salty taste quickly overwhelms any taste and turns the food into a ball of crap that my stomach signals to me "don't send that down here or its coming right back up"

    My "meals" now consist of Carnation Instant Breakfast fortified with protien powder, Ensure, some consomme soups, and a special coffee that I add syrup and flavorings to jack up the caloric content - I've lost 16 pounds so far ( I started at 217 ). I also drink flat ginger ale to ease my stomach.

    My tongue burns too and I rinse my mouth out frequently with just plain water - seems to help a little.

    One last comment - by my 2nd round of chemo I had decided to take my anti-nausea drugs ahead of symptoms, that is, I didn't wait to feel nausea I just assumed I would and took the drugs faithfully for a few days. It worked for me.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    akbear49 said:

    7 days post treatment
    I completed my 35 radiation treatments 7 days ago and my 3rd and final round of Cisplatin 14 days ago

    I have been gargling with salt and baking soda for the entire treatment phase and that seemed to work quite well keeping my mouth and throat from ever getting too sore. The Biotene mouthwash seemed to make my saliva thicken and I really didn't care for it.

    Now I have mouth sores and an earache which brought me here. Wish I had found this site earlier. It seems like the medical community doesn't share a lot of their knowledge with you unless you ask a specific question. I suspect it is because we are seeing so many care providers they all just assume someone else must have already told you.

    As far as eating goes, I gave up on any solid foods about a month into treatment, everything I tried to eat tasted the same, like crap. I quickly developed a very salty taste in my mouth that persists to this day. I can still taste foods but the salty taste quickly overwhelms any taste and turns the food into a ball of crap that my stomach signals to me "don't send that down here or its coming right back up"

    My "meals" now consist of Carnation Instant Breakfast fortified with protien powder, Ensure, some consomme soups, and a special coffee that I add syrup and flavorings to jack up the caloric content - I've lost 16 pounds so far ( I started at 217 ). I also drink flat ginger ale to ease my stomach.

    My tongue burns too and I rinse my mouth out frequently with just plain water - seems to help a little.

    One last comment - by my 2nd round of chemo I had decided to take my anti-nausea drugs ahead of symptoms, that is, I didn't wait to feel nausea I just assumed I would and took the drugs faithfully for a few days. It worked for me.

    Akbear
    Salty taste. Yep. I had that too. I am over two years out, and I still avoid salt and packaged foods because the salt content just makes it inedible.

    Biotene could still be too strong for you. It took me a very long time before I could use it. Actually it still burns, but it is doable.

    Not sure if you have ever heard of l-glutamine. There is research to support that it helps with mucositis and quite a few of us on here have used it with good results. It comes in powder form and you just mix a heaping tsp into a glass of water and swish and swallow. It can be found on line or a place like GNC or vitamin world or Health food and whole food stores. If you would like to read more about it, i have supplied links for info about it on the HNC Superthread, which is found on the first page of our board.

    Welcome to our board.
  • postie65
    postie65 Member Posts: 13
    New kid on the block

    Hi there, I have been reading all your posts and soaking in the infor. I am a Canadian girl, 47, with stage 2 Squamous Cell Carcinoma of the tongue. I am going for rad #10 of 30 today and have had one round of Cisplatin of 3 treatments. Round 2 is on Feb 19th 2013. I can't believe how much my mouth changed overnight as far as pain. A day or two ago I was telling everyone how great I was feeling and this morning I woke up at 4 a.m. coughing and choking with dry mouth and pain. It feels like if I try and lift my tongue the skin underneath will tear. I cant imagine the kind of pain I am in for by the end of week 6. Please tell me that I won't choke to death in my sleep :( I have consulted a Natuopathic Doctor along with my regular Docs and the L-glutamine was suggested to me too. Of course I didn't start using it till yesterday, because up until now I've been great. I hope I didn't screw things up by waiting. I know with radiation everything gets worse days after treatments, so I should have been smarter and done some preventative care. Anyway, I enjoy reading the tips from everyone and because you are all still posting, I'm assuming that I too will survive this crap. Oh yeh, I can relate to the food tasting like crap...I am in love with food, and this taste thing is like the ultimate curse to me. Again, I'm only into week 3 of 6 and already I feel doomed :( I will keep reading and hope for the best. Brenda

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    postie65 said:

    New kid on the block

    Hi there, I have been reading all your posts and soaking in the infor. I am a Canadian girl, 47, with stage 2 Squamous Cell Carcinoma of the tongue. I am going for rad #10 of 30 today and have had one round of Cisplatin of 3 treatments. Round 2 is on Feb 19th 2013. I can't believe how much my mouth changed overnight as far as pain. A day or two ago I was telling everyone how great I was feeling and this morning I woke up at 4 a.m. coughing and choking with dry mouth and pain. It feels like if I try and lift my tongue the skin underneath will tear. I cant imagine the kind of pain I am in for by the end of week 6. Please tell me that I won't choke to death in my sleep :( I have consulted a Natuopathic Doctor along with my regular Docs and the L-glutamine was suggested to me too. Of course I didn't start using it till yesterday, because up until now I've been great. I hope I didn't screw things up by waiting. I know with radiation everything gets worse days after treatments, so I should have been smarter and done some preventative care. Anyway, I enjoy reading the tips from everyone and because you are all still posting, I'm assuming that I too will survive this crap. Oh yeh, I can relate to the food tasting like crap...I am in love with food, and this taste thing is like the ultimate curse to me. Again, I'm only into week 3 of 6 and already I feel doomed :( I will keep reading and hope for the best. Brenda

    Hi Brenda

    A sudden increase in mouth symptoms, while on chemo and rads, often means oral thrush.  You should get them to look at your mouth today or tomorrow, as this is a common, and very treatable problem.  Most of us get at least one episode during treatment.  This is an old thread we are posting on, dead for a couple of years.  When you post it is suggested you start a nex thread, otherwise lots of potential helpers will miss your message.  Welcome to the board.  Keep coming back.

     

    Pat

  • postie65
    postie65 Member Posts: 13

    Hi Brenda

    A sudden increase in mouth symptoms, while on chemo and rads, often means oral thrush.  You should get them to look at your mouth today or tomorrow, as this is a common, and very treatable problem.  Most of us get at least one episode during treatment.  This is an old thread we are posting on, dead for a couple of years.  When you post it is suggested you start a nex thread, otherwise lots of potential helpers will miss your message.  Welcome to the board.  Keep coming back.

     

    Pat

    Ummm..I'm a dummy..

    I don't know how to do what you asked me to with this old page and I was wondering why all the posts are so old. Can you tell me what to do? lol The canadian Cancer society doesn't even have a blog that I can find, so i was glad to join this one.

  • phrannie51
    phrannie51 Member Posts: 4,716
    postie65 said:

    Ummm..I'm a dummy..

    I don't know how to do what you asked me to with this old page and I was wondering why all the posts are so old. Can you tell me what to do? lol The canadian Cancer society doesn't even have a blog that I can find, so i was glad to join this one.

    At the top of the main page....

    on the left side just under the "Search" thingee, you see "Post New Forum Topic"....click that and you will have your own thread going.  You'll get a lot of responses.

    I used L-glutamine when my mouth sores got really bad from the 5FU chemo....during the radiation part of treatments I used MuGard, which is basically a preventative (it really worked for me)....Mouth sores were absolutely the MOST miserable part of treatment....I cried on here for days on end.  I could at least put L-glutamine and water into my mouth without the stinging, which also kept me hydrated.  I also got thrush at the same time....Diflucon cured it fast.

    p

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome Brenda...

    Most everything I can think of regarding mouth pain has been covered... Of course always check an communicate with your MD's, they might have something new.

    I never had mouth issues and was very lucky compared to many. I did have pain from the rads, lost all taste and saliva for many weeks.

    Eventually after a month or so, I did have very slow improvement... After just a few months, I definitely could survive on what taste I had gotten back along with limited saliva... After two years I completely had all taste return and around 95% of the saliva...life is good...

    You too will more than likely have most taste and saliva return..., unfortuantely it's never as fast as we would like...

    Best ~ John

  • postie65
    postie65 Member Posts: 13

    At the top of the main page....

    on the left side just under the "Search" thingee, you see "Post New Forum Topic"....click that and you will have your own thread going.  You'll get a lot of responses.

    I used L-glutamine when my mouth sores got really bad from the 5FU chemo....during the radiation part of treatments I used MuGard, which is basically a preventative (it really worked for me)....Mouth sores were absolutely the MOST miserable part of treatment....I cried on here for days on end.  I could at least put L-glutamine and water into my mouth without the stinging, which also kept me hydrated.  I also got thrush at the same time....Diflucon cured it fast.

    p

    I tired... :(

    Not sure why but I  hav elooke and there is no search line and there is no where that says "post new forum topic"...I swear I have looked and paged thru from the main page and have looked everywhere. But I am happy that people can at least see me and read my stuff. I will keep looking thru the pages tho. Thanks for the response tho :)

  • postie65
    postie65 Member Posts: 13
    Skiffin16 said:

    Welcome Brenda...

    Most everything I can think of regarding mouth pain has been covered... Of course always check an communicate with your MD's, they might have something new.

    I never had mouth issues and was very lucky compared to many. I did have pain from the rads, lost all taste and saliva for many weeks.

    Eventually after a month or so, I did have very slow improvement... After just a few months, I definitely could survive on what taste I had gotten back along with limited saliva... After two years I completely had all taste return and around 95% of the saliva...life is good...

    You too will more than likely have most taste and saliva return..., unfortuantely it's never as fast as we would like...

    Best ~ John

    thanks john...

    I've been reading all of the posts, and on my tablet I was actually on the page that had the current ones. For some reason this old site is the only one i have access to on my CU and I can't seem to find where the new ones are. Anyway, you guys have all given me great tips thru this crappy jouney :)