Mugard
Comments
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Mugard
Looks promising on the Mugard website. I have also heard of Caphosol for treating it.
Myself, I've been using raw honey in boiling water like a tea. I hear glutamine is good as noted in the Superthread (lots of useful info):
http://csn.cancer.org/node/227992
I believe mucositis is one of the main reasons people begin to abandon swallowing and relying on their PEGs, unless there is a physical cause such as impairment in the swallowing mechanism or stricture. So whatever measures to prevent or treat, and keeping on top of pain control is a good idea. Maintaining swallowing as much as possible, even sipping room temp water helps shorten the time to eating again enough to have the PEG removed. Ideally, we don't want our throats to forget how to swallow and to have to learn it again.
Since to an extent we can't control if it becomes more of a problem or not, most of us have wonderful swallowing treatment programs at our cancer centers if we do have to learn it again. That said, I have heard from a few their mucositis never got that bad, one who bought Caphosol and never ended up using it.
If Mugard as a preventative measure isn't too expensive or in your budget, sure, why not? Maybe someone else who has used it can comment.
Just curious where you are and what type of rad, I haven't heard the plan of 50 rads. I always thought 35 was the current standard.
Best wishes,
Roger0 -
Yes I am going to try it.Greend said:Mugard
I'd never heard of it but if the press release is right it sounds good. Good luck with the treatments and let us know if you use the Mugard.
I spoke to my local sales rep and he has it placed with northwestern in Chicago. He is trying to get his foot in the door with it at my hospital, u of c. Says that no patients who have used it had to get peg tubes and 40 percent reported no to very low mouth discomfort. Sounds almost too good to be true! But I am convinced enough to try it. I will post my experiances. Starting Dec 2!!
John0 -
RadRogerRN43 said:Mugard
Looks promising on the Mugard website. I have also heard of Caphosol for treating it.
Myself, I've been using raw honey in boiling water like a tea. I hear glutamine is good as noted in the Superthread (lots of useful info):
http://csn.cancer.org/node/227992
I believe mucositis is one of the main reasons people begin to abandon swallowing and relying on their PEGs, unless there is a physical cause such as impairment in the swallowing mechanism or stricture. So whatever measures to prevent or treat, and keeping on top of pain control is a good idea. Maintaining swallowing as much as possible, even sipping room temp water helps shorten the time to eating again enough to have the PEG removed. Ideally, we don't want our throats to forget how to swallow and to have to learn it again.
Since to an extent we can't control if it becomes more of a problem or not, most of us have wonderful swallowing treatment programs at our cancer centers if we do have to learn it again. That said, I have heard from a few their mucositis never got that bad, one who bought Caphosol and never ended up using it.
If Mugard as a preventative measure isn't too expensive or in your budget, sure, why not? Maybe someone else who has used it can comment.
Just curious where you are and what type of rad, I haven't heard the plan of 50 rads. I always thought 35 was the current standard.
Best wishes,
Roger
Hi rodger,
I counted 50 this way. Week in week out. The in week is 5 days, told twice a day. 10 week program, so 5 weeks equals 50. Perhaps I'm missing something. I am at university of Chicago which is extremely well regarded for HNC. My Doctor Haraff has done numerous studies and papers on this protocol, using 5fu in conjunction with the rad. Is my count off? Perhaps on Friday it's only one rad. I'll ask. Doing weekly chemo now and while energy is not norm I'm working and also keeping up with our usual social life of dining out almost every night ( I'm on 18 in a row!) ( bills are much less with no drinks) Hoping I've found something with Mugard. Nobody gets sold more than a salesman, but the rep was so enthusiastic!!!! Not one person who started before the first rad has has a peg. I'm in!
Thanks for response,
John0 -
ARogerRN43 said:Mugard
Looks promising on the Mugard website. I have also heard of Caphosol for treating it.
Myself, I've been using raw honey in boiling water like a tea. I hear glutamine is good as noted in the Superthread (lots of useful info):
http://csn.cancer.org/node/227992
I believe mucositis is one of the main reasons people begin to abandon swallowing and relying on their PEGs, unless there is a physical cause such as impairment in the swallowing mechanism or stricture. So whatever measures to prevent or treat, and keeping on top of pain control is a good idea. Maintaining swallowing as much as possible, even sipping room temp water helps shorten the time to eating again enough to have the PEG removed. Ideally, we don't want our throats to forget how to swallow and to have to learn it again.
Since to an extent we can't control if it becomes more of a problem or not, most of us have wonderful swallowing treatment programs at our cancer centers if we do have to learn it again. That said, I have heard from a few their mucositis never got that bad, one who bought Caphosol and never ended up using it.
If Mugard as a preventative measure isn't too expensive or in your budget, sure, why not? Maybe someone else who has used it can comment.
Just curious where you are and what type of rad, I haven't heard the plan of 50 rads. I always thought 35 was the current standard.
Best wishes,
Roger
A0 -
PEGJohnyjackpot said:Rad
Hi rodger,
I counted 50 this way. Week in week out. The in week is 5 days, told twice a day. 10 week program, so 5 weeks equals 50. Perhaps I'm missing something. I am at university of Chicago which is extremely well regarded for HNC. My Doctor Haraff has done numerous studies and papers on this protocol, using 5fu in conjunction with the rad. Is my count off? Perhaps on Friday it's only one rad. I'll ask. Doing weekly chemo now and while energy is not norm I'm working and also keeping up with our usual social life of dining out almost every night ( I'm on 18 in a row!) ( bills are much less with no drinks) Hoping I've found something with Mugard. Nobody gets sold more than a salesman, but the rep was so enthusiastic!!!! Not one person who started before the first rad has has a peg. I'm in!
Thanks for response,
John
Sounds like you are being treated at a major center in the U.S. so that's good whatever specialized protocol they have come up for you.
BTW, my family lived in Chicago for a brief period when I was a toddler and my dad went to Northwestern.
(I live in Canada now, near Toronto).
Many have said get the PEG while you feel well, and maybe you will never use it. For others, they survived on it.
My ENT put it in when I got my tonsillectomy. My stomach hurt for a week but now I don't notice it, I do "practice" and put in a can almost daily through it. For whatever reason, I had to build tolerance to a can as I would feel bloated like it was coming up my throat too whereas if I drank it, I could just chug it down without a problem.
Without a PEG, people are forced to maintain swallowing. If for whatever reason that becomes impossible, surgically putting in a PEG at that time may be a hardship. I would consult your docs about it. If you don't have one, the decision is ultimately yours, but you can see the flipsides of the coin.
Enjoy your meals and over indulge, AYCE every night if you can. It's a good time to gain some weight. I'm on rad 14, my taste is almost gone and I miss those days. Hoping your side effects are minimal.
Roger0 -
Same As MineJohnyjackpot said:Rad
Hi rodger,
I counted 50 this way. Week in week out. The in week is 5 days, told twice a day. 10 week program, so 5 weeks equals 50. Perhaps I'm missing something. I am at university of Chicago which is extremely well regarded for HNC. My Doctor Haraff has done numerous studies and papers on this protocol, using 5fu in conjunction with the rad. Is my count off? Perhaps on Friday it's only one rad. I'll ask. Doing weekly chemo now and while energy is not norm I'm working and also keeping up with our usual social life of dining out almost every night ( I'm on 18 in a row!) ( bills are much less with no drinks) Hoping I've found something with Mugard. Nobody gets sold more than a salesman, but the rep was so enthusiastic!!!! Not one person who started before the first rad has has a peg. I'm in!
Thanks for response,
John
John
That was the same protocol here. I only had 49 though as a holiday week was during mine. Are you also doing Erbitux & Hydroxyurea during your inpatient time? That was part of the clinical trial I was on. I sure hope the Mugard works for you and the twice daily rads are easier on you than they were on me. The positive attitude works wonders keep it up.
Wishes & Prayers
Dave0 -
Mugard ...
I tried multiple options w/regards to mouthwashes/rinses as my mouth sores were extreme. So to answer your question, yes I tried Mugard. I have nothing bad to say about it but I can honestly say for me, it did nothing in terms of healing my sores.
I wish you the best as you progress. God Bless.
Gib0 -
TasteRogerRN43 said:PEG
Sounds like you are being treated at a major center in the U.S. so that's good whatever specialized protocol they have come up for you.
BTW, my family lived in Chicago for a brief period when I was a toddler and my dad went to Northwestern.
(I live in Canada now, near Toronto).
Many have said get the PEG while you feel well, and maybe you will never use it. For others, they survived on it.
My ENT put it in when I got my tonsillectomy. My stomach hurt for a week but now I don't notice it, I do "practice" and put in a can almost daily through it. For whatever reason, I had to build tolerance to a can as I would feel bloated like it was coming up my throat too whereas if I drank it, I could just chug it down without a problem.
Without a PEG, people are forced to maintain swallowing. If for whatever reason that becomes impossible, surgically putting in a PEG at that time may be a hardship. I would consult your docs about it. If you don't have one, the decision is ultimately yours, but you can see the flipsides of the coin.
Enjoy your meals and over indulge, AYCE every night if you can. It's a good time to gain some weight. I'm on rad 14, my taste is almost gone and I miss those days. Hoping your side effects are minimal.
Roger
My taste went South on about rad #7 after 6 weeks of no taste and about the same on saliva I am getting tired of Ensure. Now I have rad burns on my neck to go along with the mouth sores. I was surprised that the burns on the neck did not appear until the last week of treatments so I forgot about that little present. My mouth sores are mostly on the edge of my tongue. I use a little pain med but what really works is just a little of the Magic Mouth Wash, just enough to coat the tongue.
Unrelated, but how do I post a comment to the main thread instead of a response to comment like I did here?0 -
jtljtl said:Taste
My taste went South on about rad #7 after 6 weeks of no taste and about the same on saliva I am getting tired of Ensure. Now I have rad burns on my neck to go along with the mouth sores. I was surprised that the burns on the neck did not appear until the last week of treatments so I forgot about that little present. My mouth sores are mostly on the edge of my tongue. I use a little pain med but what really works is just a little of the Magic Mouth Wash, just enough to coat the tongue.
Unrelated, but how do I post a comment to the main thread instead of a response to comment like I did here?
To put a reply at the end of the main thread, instead of in-between in answer to a post, just hit the word "reply" on the original poster's post, instead of the little envelope on a post that was a reply to the OP. I have no clue if you will understand that. Just hit "reply" on the original post and it should go to the end of the thread.0 -
Hi Gib,gibkoch said:Mugard ...
I tried multiple options w/regards to mouthwashes/rinses as my mouth sores were extreme. So to answer your question, yes I tried Mugard. I have nothing bad to say about it but I can honestly say for me, it did nothing in terms of healing my sores.
I wish you the best as you progress. God Bless.
Gib
It appears that you
Hi Gib,
It appears that you did not start using Mugard until after you started Rad treatment. Is this correct? I'm told that the results are very much better if you use it continually ; starting before your first treatment. As I understand; the product is a preventative not really a medicine. The FDA has approved it as a device not a drug. It coats your mouth with a type of plastic that acts/coats like the lining your body would normally have. Anyway I'm optonistic, and perhaps overestimating its value, but it helps me cope,hoping it works.
Best of luck to you and your recovery.
John0 -
dry mouthJohnyjackpot said:Hi Gib,
It appears that you
Hi Gib,
It appears that you did not start using Mugard until after you started Rad treatment. Is this correct? I'm told that the results are very much better if you use it continually ; starting before your first treatment. As I understand; the product is a preventative not really a medicine. The FDA has approved it as a device not a drug. It coats your mouth with a type of plastic that acts/coats like the lining your body would normally have. Anyway I'm optonistic, and perhaps overestimating its value, but it helps me cope,hoping it works.
Best of luck to you and your recovery.
John
sounds with your description....It coats your mouth with a type of plastic that acts/coats like the lining your body would normally have.....
If i use this thought later down the road many months post treatment once the mouth heals and the major dry mouth starts especially at bed time, that the Mugard when used at bed time would coat your mouth so the moisture on the skin would not dry out and become paste.
maybe this would be something to try.
John0 -
Hi John,fisrpotpe said:dry mouth
sounds with your description....It coats your mouth with a type of plastic that acts/coats like the lining your body would normally have.....
If i use this thought later down the road many months post treatment once the mouth heals and the major dry mouth starts especially at bed time, that the Mugard when used at bed time would coat your mouth so the moisture on the skin would not dry out and become paste.
maybe this would be something to try.
John
I am by no means
Hi John,
I am by no means any expert on this product, but perhaps you could inquire about it with Access pharma.
Hope your dryness improves soon!
John0 -
Now why didn't I think of that! I guess I am at the point of overlooking the obvious but thanks for your help.sweetblood22 said:jtl
To put a reply at the end of the main thread, instead of in-between in answer to a post, just hit the word "reply" on the original poster's post, instead of the little envelope on a post that was a reply to the OP. I have no clue if you will understand that. Just hit "reply" on the original post and it should go to the end of the thread.
John0 -
Mugard, Miles Mouthwash and Lidocaine
My husband used Mugard during his treatment along with the Miles Mouthwash. For the mouth sores they were invaluable. He actually got his doctor to prescribe straight Lidocaine gel too - which he used each time before eating - it numbed the area so he could tolerate foods/liquids better.0 -
Hi, did your husband thinkSamandIrene said:Mugard, Miles Mouthwash and Lidocaine
My husband used Mugard during his treatment along with the Miles Mouthwash. For the mouth sores they were invaluable. He actually got his doctor to prescribe straight Lidocaine gel too - which he used each time before eating - it numbed the area so he could tolerate foods/liquids better.
Hi, did your husband think that Mugard was a big factor or the other wash? How bad was his throat discomfort? Any info specifically about mugard would be helpful. Did he start on it before his first treatment?
Thanks very much in advance for any help, and best to your husband. Hope this is well behind you.
John0 -
Mugard was invaluable - more so than the Miles mouthwashJohnyjackpot said:Hi, did your husband think
Hi, did your husband think that Mugard was a big factor or the other wash? How bad was his throat discomfort? Any info specifically about mugard would be helpful. Did he start on it before his first treatment?
Thanks very much in advance for any help, and best to your husband. Hope this is well behind you.
John
Hi John - Yes, the Mugard was a big factor in soothing his mouth sores, more so than the Miles mouthwash. He had quite a bit of discomfort in his throat - so we were very grateful when the Radiation Nurse gave him a sample at about the time of his 15th treatment. His insurance would not cover it and it is around $280 a bottle! But....the Cancer Center he was going to was able to give him a few bottles for free! There is a contact I can get for you at the actual company that makes the stuff. Let me know if you want the contact info and I will see if I can find it. Wish you the best of luck in your treatment!
God Bless,
Irene0 -
Thanks for the info Irene! ISamandIrene said:Mugard was invaluable - more so than the Miles mouthwash
Hi John - Yes, the Mugard was a big factor in soothing his mouth sores, more so than the Miles mouthwash. He had quite a bit of discomfort in his throat - so we were very grateful when the Radiation Nurse gave him a sample at about the time of his 15th treatment. His insurance would not cover it and it is around $280 a bottle! But....the Cancer Center he was going to was able to give him a few bottles for free! There is a contact I can get for you at the actual company that makes the stuff. Let me know if you want the contact info and I will see if I can find it. Wish you the best of luck in your treatment!
God Bless,
Irene
Thanks for the info Irene! I am all set up to get it, so I can start before my first treatment. Starting early I'm told, yields far superior results. I will keep this board posted on my results! I have my first rad on Dec. 4th.
Best, John0 -
You are welcome John!Johnyjackpot said:Thanks for the info Irene! I
Thanks for the info Irene! I am all set up to get it, so I can start before my first treatment. Starting early I'm told, yields far superior results. I will keep this board posted on my results! I have my first rad on Dec. 4th.
Best, John
Starting early on taking the Mugard may be a great blessing - let us know how it turns out.
God Bless,
Irene0
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