mouth and throat "sunburn"
Comments
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Solutions
Hi and welcome aboard....
I had the STG III tonsil, and a lymphnode, also chemo (nine weeks), chemo/rads (seven weeks)...
I didn't have much pain until around weeks three. I didn't have a PEG and for me it wasn't a problem not having it, others swear by it.
I used the solution also, like you said it ususally only lasts a few minutes. Long enough to drink down some Ensure Plus, and water....mainly what I survived off of for the last four weeks of rads and next three weeks after rads. If you haven't heard yet, he'll still be cooking for about three - four weeks after the rads are done, so don't get down or discouraged, everyone goes through it....
In additional to the thick solution, I'd also use either the liquid hydrocodone, oxicontin, or ground up percosets...they would take the edge off of the pain for a little longer.
They had also prescribed morphine, but I couldn't handle that. It made me sick and did nothing for the pain for me...
Stay with us, and have your brother pariticipate if he can. It'll do him a world of good.
John0 -
Sorry your brother has to go
Sorry your brother has to go thru this. There are products that can help with the burn. Aquafour, Silvadine cream, and I used radiaplex. He can ask his RO for perscriptions for the latter two. The former you can buy otc.
I have a PEG Tube. I have had mine going on 15 months now. I would have died without mine. As it is I went down to 88lbs. I did not want to have it either because I was scared, but I changed my mind, and I am very very glad I did. There really is nothing to be scared of. If I can do it anyone can. Honest. If you click on my name and go to my expressions page I have a picture of two out of the three types I have had. You can see what they look like, and it kind of takes "the unknown" away. If I am understanding it correctly he has only had one week of treatment and he is having problems with his throat hurting already? That sounds like me. It is cumulative and gets worse, so I would get a PEG before it gets too bad if weight is an issue. I started at 5'2" and only 125 lbs.
I did not have chemo, only radiation. I understand what he is going through. I was on 75mcgs on Fentanyl during my radiation. Are they helping him with pain management? It is very hard. I lost my voice for a couple of months and did not eat or drink by mouth for about 5 months. I am still having some complications, but I am out of treatment for a year on 5-15-10. Your brother can do this.
Maybe he can join the forum for some support as we all know and understand what he is going through. He is very lucky to have you for support too.
We all will try to help, anything just ask.0 -
sunburn mouthSkiffin16 said:Solutions
Hi and welcome aboard....
I had the STG III tonsil, and a lymphnode, also chemo (nine weeks), chemo/rads (seven weeks)...
I didn't have much pain until around weeks three. I didn't have a PEG and for me it wasn't a problem not having it, others swear by it.
I used the solution also, like you said it ususally only lasts a few minutes. Long enough to drink down some Ensure Plus, and water....mainly what I survived off of for the last four weeks of rads and next three weeks after rads. If you haven't heard yet, he'll still be cooking for about three - four weeks after the rads are done, so don't get down or discouraged, everyone goes through it....
In additional to the thick solution, I'd also use either the liquid hydrocodone, oxicontin, or ground up percosets...they would take the edge off of the pain for a little longer.
They had also prescribed morphine, but I couldn't handle that. It made me sick and did nothing for the pain for me...
Stay with us, and have your brother pariticipate if he can. It'll do him a world of good.
John
Thanks John. I called him and recommended crushing up his next pain med into dust and try to hold it in his mouth for a few min to get absorbed. -Jess0 -
sunburn in mouthsweetblood22 said:Sorry your brother has to go
Sorry your brother has to go thru this. There are products that can help with the burn. Aquafour, Silvadine cream, and I used radiaplex. He can ask his RO for perscriptions for the latter two. The former you can buy otc.
I have a PEG Tube. I have had mine going on 15 months now. I would have died without mine. As it is I went down to 88lbs. I did not want to have it either because I was scared, but I changed my mind, and I am very very glad I did. There really is nothing to be scared of. If I can do it anyone can. Honest. If you click on my name and go to my expressions page I have a picture of two out of the three types I have had. You can see what they look like, and it kind of takes "the unknown" away. If I am understanding it correctly he has only had one week of treatment and he is having problems with his throat hurting already? That sounds like me. It is cumulative and gets worse, so I would get a PEG before it gets too bad if weight is an issue. I started at 5'2" and only 125 lbs.
I did not have chemo, only radiation. I understand what he is going through. I was on 75mcgs on Fentanyl during my radiation. Are they helping him with pain management? It is very hard. I lost my voice for a couple of months and did not eat or drink by mouth for about 5 months. I am still having some complications, but I am out of treatment for a year on 5-15-10. Your brother can do this.
Maybe he can join the forum for some support as we all know and understand what he is going through. He is very lucky to have you for support too.
We all will try to help, anything just ask.
Thank you for your response.
Is the aquafour for the lips only? -Jess 0 -
aquaphorbrotherslittlehelper said:sunburn in mouth
Thank you for your response. Is the aquafour for the lips only? -Jess
no, not just for your lips. it is like vaseline, but it is water based. i liked my radiaplex better, but i did use both.
http://aquaphorhealing.com/#/main/skincare/products
you want the one in the jar that looks like vaseline. my dad got me some in walmart, i think it was between 9-10 dollars. not the lotion kind.
http://www.drugstore.com/products/prod.asp?pid=183554&catid=10400
radiaplex:
http://www.door-stepmedical.com/pc-50-17-radiaplex.aspx
http://www.mpmmedicalinc.com/productdetails.aspx?pin=c.OC.3.p.70 -
Medsbrotherslittlehelper said:sunburn mouth
Thanks John. I called him and recommended crushing up his next pain med into dust and try to hold it in his mouth for a few min to get absorbed. -Jess
Just dissolve it in a little water, and take it after the liquid solution... If his taste isn't messed up yet it will be, he won't be able to taste it.
If his burns externally get to bad there is a cream called Silvadene (Silver Sulfadiazine) that they give to burn victims that I have heard is good....0 -
Don't be scared of that PEG.Skiffin16 said:Meds
Just dissolve it in a little water, and take it after the liquid solution... If his taste isn't messed up yet it will be, he won't be able to taste it.
If his burns externally get to bad there is a cream called Silvadene (Silver Sulfadiazine) that they give to burn victims that I have heard is good....
Don't be scared of that PEG. little diconcerting in the beginning but I was glad to have mine. I lost 35 pounds even with it so can't imagine without it. I could not eat anything for 4-6 weeks so the nutrition through the PEg was it except for sipping water to keep my throat muscles working. For my skin on the outside I used the green aloe vera gel with lidocaine in it. Burned like heck when you applied it but within a few minutes fely huge better. Good luck and regards to your brother. I wish him well.
Mike0 -
Sorry, butLandranger25 said:Don't be scared of that PEG.
Don't be scared of that PEG. little diconcerting in the beginning but I was glad to have mine. I lost 35 pounds even with it so can't imagine without it. I could not eat anything for 4-6 weeks so the nutrition through the PEg was it except for sipping water to keep my throat muscles working. For my skin on the outside I used the green aloe vera gel with lidocaine in it. Burned like heck when you applied it but within a few minutes fely huge better. Good luck and regards to your brother. I wish him well.
Mike
You are in a good place for advice.
Aquaphor- I only used on my lips, around the mouth, and on the rad-burned neck. Rad Dr. did tell me there's not a problem with getting it in the mouth.
Magic Mouthwash is the standard used for mouth sores/burning. Yes, it doesn't last all that long as major relief, but does help longer than one thinks it does. Pain meds help as much/more. Like John, I didn't like the morph, but did use for 4 out of 5 consecutive post-chemo weeks. Stuff kinda scared me, so it was a worst-of-times use. Vicodin/Hydrocodone was what I used much more often. You might also consider the Xanax- does help one's attitude in coping with it all.
As for the PEG- I'm one of those who was not given an option due to my chemo delivery. Nobody likes them, but a good many of us fully realize how essential they were in helping to get the NECESSARY NUTRITION the body needs to get thru the treatment the best one can.
I had my PEG for some 15-months, and came to know it as only a slight nuissance over the last year. I, like a few others, doubt I would have made it thru without the PEG; and, bottom-line, I can't think of anyone who had one and used it a lot during treatment that regrets having it. PEGs bypass the problem areas by providing a direct line into the stomach for liquid Nutrition, and that is a very good thing. I most certainly have no regrets.
Please keep us informed- we are here to help
kcass0 -
The BrotherKent Cass said:Sorry, but
You are in a good place for advice.
Aquaphor- I only used on my lips, around the mouth, and on the rad-burned neck. Rad Dr. did tell me there's not a problem with getting it in the mouth.
Magic Mouthwash is the standard used for mouth sores/burning. Yes, it doesn't last all that long as major relief, but does help longer than one thinks it does. Pain meds help as much/more. Like John, I didn't like the morph, but did use for 4 out of 5 consecutive post-chemo weeks. Stuff kinda scared me, so it was a worst-of-times use. Vicodin/Hydrocodone was what I used much more often. You might also consider the Xanax- does help one's attitude in coping with it all.
As for the PEG- I'm one of those who was not given an option due to my chemo delivery. Nobody likes them, but a good many of us fully realize how essential they were in helping to get the NECESSARY NUTRITION the body needs to get thru the treatment the best one can.
I had my PEG for some 15-months, and came to know it as only a slight nuissance over the last year. I, like a few others, doubt I would have made it thru without the PEG; and, bottom-line, I can't think of anyone who had one and used it a lot during treatment that regrets having it. PEGs bypass the problem areas by providing a direct line into the stomach for liquid Nutrition, and that is a very good thing. I most certainly have no regrets.
Please keep us informed- we are here to help
kcass
Morning I'm Bill the Brother that this thread is about. Thank you all for your information but as I'm a bit muddy due to the painkillers that are not killing pain let me ask a few specific Questions.
Norco seems to help my throat a little as long as I don't drink or eat anything so is there any reason to stay on it rather than going back to Tylenol 3 w/ codine since neither is really doing anything?
Crushing up the norco. Then what swish and swallow the paste? I'd assume that would count as one of the doses for the day.
Does this pain get worse or pretty much just stay at excessivly annoying?
I am not having any burn issues on the outside yet face/neck but I do have the lotions they gave me and one is that rad stuff someone was talking about earlier.
Is there ever a time your mouth throat is pain free?
I think thats it for now. Thank you in advance for your responses.
Bill0 -
PainkillersDukarchon said:The Brother
Morning I'm Bill the Brother that this thread is about. Thank you all for your information but as I'm a bit muddy due to the painkillers that are not killing pain let me ask a few specific Questions.
Norco seems to help my throat a little as long as I don't drink or eat anything so is there any reason to stay on it rather than going back to Tylenol 3 w/ codine since neither is really doing anything?
Crushing up the norco. Then what swish and swallow the paste? I'd assume that would count as one of the doses for the day.
Does this pain get worse or pretty much just stay at excessivly annoying?
I am not having any burn issues on the outside yet face/neck but I do have the lotions they gave me and one is that rad stuff someone was talking about earlier.
Is there ever a time your mouth throat is pain free?
I think thats it for now. Thank you in advance for your responses.
Bill
Hi Bill. I'm relatively new to this site myself. I have Stage 4 SCC on right tonsil that went into lymph nodes on both sides of neck. I had neck dissection (not painful) and tonsillectomy (very painful for a week or so). I finished 35 rad and chemo treatments 3 1/2 weeks ago. As far as the pain, my tonsillectomy hurt worse for a couple weeks than my throat sunburn, even though that did hurt. I may not be the person to give advice since I'm allergic to Tylenol and it seems everything has Tylenol in it.
During the worse of my pain they started me off with Darvon and it was not effective. They switched me to liquid morphine which did not help and just made me goofy (or more goofy than usual). Finally gave me the Fentanyl patch which did the trick and still made me feel loopy. Only used that after tonsillectomy then switched back to Darvon for sunburn pain.
My sunburn pain is still there but not as bad. About the 4th week of rad it really bothered me but I think I got used to it, because eventually the Darvon took care of that pain. Throat pain is still there after 3 1/2 weeks but since treatments ended, pain has subsided signifigantly, but that's just me. Everyone is different. Yawning and sneezing stil hurt like the dickens though. I think Percoset is the painkiller that is the same as Darvon (maybe a bit stronger) that has Tylenol in it. I have PEG and everything goes thru that.
Hang in there!
Greg0 -
ThanksGreg53 said:Painkillers
Hi Bill. I'm relatively new to this site myself. I have Stage 4 SCC on right tonsil that went into lymph nodes on both sides of neck. I had neck dissection (not painful) and tonsillectomy (very painful for a week or so). I finished 35 rad and chemo treatments 3 1/2 weeks ago. As far as the pain, my tonsillectomy hurt worse for a couple weeks than my throat sunburn, even though that did hurt. I may not be the person to give advice since I'm allergic to Tylenol and it seems everything has Tylenol in it.
During the worse of my pain they started me off with Darvon and it was not effective. They switched me to liquid morphine which did not help and just made me goofy (or more goofy than usual). Finally gave me the Fentanyl patch which did the trick and still made me feel loopy. Only used that after tonsillectomy then switched back to Darvon for sunburn pain.
My sunburn pain is still there but not as bad. About the 4th week of rad it really bothered me but I think I got used to it, because eventually the Darvon took care of that pain. Throat pain is still there after 3 1/2 weeks but since treatments ended, pain has subsided signifigantly, but that's just me. Everyone is different. Yawning and sneezing stil hurt like the dickens though. I think Percoset is the painkiller that is the same as Darvon (maybe a bit stronger) that has Tylenol in it. I have PEG and everything goes thru that.
Hang in there!
Greg
Yeah forgot yawning coughing and sneezing are a new experience in pain. Plus I got the bonus plan they removed a tumor from my sinus cavity which in the words of my surgeon took my sinus cavity that is originally a bunch of small cavities in people to one big one. So I tend to be very careful with the Pressure created from a sneeze or cough.0 -
L-Glutamine
Helper,
Check out L-Glutamine powder, available at most health Supplement stores. Its a tasteless white powder that will ease some of the burning in his mouth.
More importantly, it aids in healing and recovery of the mucosa (all internal tissues of the entire intestinal tract, including the mouth and throat. It is an essential animo acid. It has no side effects. You can mix it in water and rinse and swallow. Google it for more information.
Scambuster0 -
BillScambuster said:L-Glutamine
Helper,
Check out L-Glutamine powder, available at most health Supplement stores. Its a tasteless white powder that will ease some of the burning in his mouth.
More importantly, it aids in healing and recovery of the mucosa (all internal tissues of the entire intestinal tract, including the mouth and throat. It is an essential animo acid. It has no side effects. You can mix it in water and rinse and swallow. Google it for more information.
Scambuster
For me, NPC, the mouth/tongue condition was the major issue, and what made the traditional method of eating impossible. Unfortunately, that's something all of us who get chemo and a major mouth zapping of rads have to deal with. And with your surgery- makes you even more so. Worst of times is during treatment, especially post-chemo. However, things will significantly improve once it is done- but even then does take time. I was luckier than some, in those regards. I used my PEG for all my feeding for 7 of the 8 weeks my treatment lasted, and that was because of the mouth condition- which is why PEGs exist. Onco gave me no option, so I just accepted that and did what I had to- to fight this battle the very best I could.
H&N is a rough road to travel, Bill. Have read testimony that Drs. even acknowledge it as one of the roughest; and, from things said to me by my Onco, and the rad technicians who zapped me, I got the impression my med team knew what they were putting me thru. But our chances of survival are excellent- we're talking some 95% survival. Yeah, it do get rough, Bill, but we've all been there, and survived. I'm 18-months, now, and I'm still one of the youngsters on this forum. Do everything you can to get yourself past this rough stretch of road, and you'll find the road beyond the tunnel of treatment is quite all right, and you'll be glad you opted to take the route you're on. Trust me, and
Believe
kcass0 -
Check with Rad Doctor on dosageScambuster said:L-Glutamine
Helper,
Check out L-Glutamine powder, available at most health Supplement stores. Its a tasteless white powder that will ease some of the burning in his mouth.
More importantly, it aids in healing and recovery of the mucosa (all internal tissues of the entire intestinal tract, including the mouth and throat. It is an essential animo acid. It has no side effects. You can mix it in water and rinse and swallow. Google it for more information.
Scambuster
Helper,
I reread your post and wonder why your Bro is hurting so much so early in treatment. From my recollection, most of us did OK till weeks 2, 3 or 4. (Chime in folks to correct me.)
You may want to check with Rad techies that they have the right dosage set up. (Don't be afraid to ask, it's his body and life they are treating). Just get them to double check the dosage of Rads.
You can say you know a bunch of folks (your friends) who didn't get such pain till much later in treatment. Why is it so ??
He may just be sensitive as some of us needed heavy pain relief. My dopes were: Morphine (Syrup and later IV), Vicodin, Paracetamol, Tramodol, Lyrica and even Pethadine. I didn't cope well but was Ok till about week 3. The problem with most of these (Esp morphine) is they can cause constipation or generally mess with the gut. I was given Maxolon (Generic Name: Metoclopramide hydrochloride) which was good for pain and nausea as well as helping the upper digestive tract to keep moving (Peristalsis).
Unfortunately, they give you one drug, and then need to give you another to counter the effects and the vicious cycle starts. Always keep track of what are giving him (keep a note pad / diary) and don't be afraid to ask questions.
I hope he's doing OK.
Scam0 -
Well got back in hospital tonight for my second round of chemo/rad. told Told the Doc and nurses about the pain and they added oxycodoneo in addition the tylox and after an hour NO Pain. I was able to eas solid food for a change it was nice I know it'll most likely last but atleast now I know they can reduce or remove the pain.Scambuster said:Check with Rad Doctor on dosage
Helper,
I reread your post and wonder why your Bro is hurting so much so early in treatment. From my recollection, most of us did OK till weeks 2, 3 or 4. (Chime in folks to correct me.)
You may want to check with Rad techies that they have the right dosage set up. (Don't be afraid to ask, it's his body and life they are treating). Just get them to double check the dosage of Rads.
You can say you know a bunch of folks (your friends) who didn't get such pain till much later in treatment. Why is it so ??
He may just be sensitive as some of us needed heavy pain relief. My dopes were: Morphine (Syrup and later IV), Vicodin, Paracetamol, Tramodol, Lyrica and even Pethadine. I didn't cope well but was Ok till about week 3. The problem with most of these (Esp morphine) is they can cause constipation or generally mess with the gut. I was given Maxolon (Generic Name: Metoclopramide hydrochloride) which was good for pain and nausea as well as helping the upper digestive tract to keep moving (Peristalsis).
Unfortunately, they give you one drug, and then need to give you another to counter the effects and the vicious cycle starts. Always keep track of what are giving him (keep a note pad / diary) and don't be afraid to ask questions.
I hope he's doing OK.
Scam0 -
i am so glad that you were able to eat and that you felt relief for a while. outstanding. always good to hear good news.Dukarchon said:Well got back in hospital tonight for my second round of chemo/rad. told Told the Doc and nurses about the pain and they added oxycodoneo in addition the tylox and after an hour NO Pain. I was able to eas solid food for a change it was nice I know it'll most likely last but atleast now I know they can reduce or remove the pain.
0 -
Buster,Scambuster said:Check with Rad Doctor on dosage
Helper,
I reread your post and wonder why your Bro is hurting so much so early in treatment. From my recollection, most of us did OK till weeks 2, 3 or 4. (Chime in folks to correct me.)
You may want to check with Rad techies that they have the right dosage set up. (Don't be afraid to ask, it's his body and life they are treating). Just get them to double check the dosage of Rads.
You can say you know a bunch of folks (your friends) who didn't get such pain till much later in treatment. Why is it so ??
He may just be sensitive as some of us needed heavy pain relief. My dopes were: Morphine (Syrup and later IV), Vicodin, Paracetamol, Tramodol, Lyrica and even Pethadine. I didn't cope well but was Ok till about week 3. The problem with most of these (Esp morphine) is they can cause constipation or generally mess with the gut. I was given Maxolon (Generic Name: Metoclopramide hydrochloride) which was good for pain and nausea as well as helping the upper digestive tract to keep moving (Peristalsis).
Unfortunately, they give you one drug, and then need to give you another to counter the effects and the vicious cycle starts. Always keep track of what are giving him (keep a note pad / diary) and don't be afraid to ask questions.
I hope he's doing OK.
Scam
I talked to my
Buster,
I talked to my brother this morning....he joined the site here and is "Dukarchon". You are very correct in the whole "giving you one things to treat the symptom's of another" That has been going on from the begining of all this- especially for painkillers and constipation. He actually had a fairly painless evening last night..if you read his posts in this thread, you will see what they have done for him....but They keep talking about adjusting his meds. It seems that EVERYTHING takes so long to decide then approve that he just asked them to give him today what they did yesterday so that he doesn't start with the major pain again. But it was GREAT to hear that he finally had some relief!!!0
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