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Mugard

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

Hi, I am going to start a ten week program of continues 5 fu and 50 doses rad for tonsil cancer. I have read great things about mugard for mouth issues. Has anyone tried it? experiances? Any feedback would be great! Thanks in advance. John

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

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.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

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.

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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!!
John

kimsherman
Posts: 1
Joined: Jan 2012

My little boy had treatment for Lymphoma resulting in G-d awful Mucositis, it was a nightmare. I did tons of research, found MuGard which is not available for children, got my hands on it and never looked back. It worked so incredibly well, never had another ulcer and you can even swallow it, I recommend it strongly!

RogerRN43
Posts: 185
Joined: Sep 2011

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

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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

RogerRN43
Posts: 185
Joined: Sep 2011

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

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

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?

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

Now why didn't I think of that! I guess I am at the point of overlooking the obvious but thanks for your help.
John

Fire34
Posts: 352
Joined: Feb 2010

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
Dave

Bunnymom
Posts: 101
Joined: Apr 2014

Hi just read your post. I am scheduled to meet with Dr. Haraff and Dr Villaflor on May 6 at UiC. my surgeon is Dr. Langerman. 

I was diagnosed with tongue cancer in August 2013. Sept 2013, surgery to remove leison - clear margins. Oct 2013, lymph nodes removed - all clear. 

January 2014, PET showed activity in single lymph node. Surgery to remove lymph nodes and submandibular gland - clear margins only the single node found. Two weeks ago, PET shows activity near site of last surgery. Scheduled for fourth surgery on April 30 to remove. Then onto radiation and probable chemo. 

 

Did you you have a medical oncologist? How did you like Dr. Haraff? What type of radiation did you receive? IMRT? Most importantly, how are you doing? Just trying to get a handle on this. 

 

Thank you

BunnyMom

KTeacher
Posts: 949
Joined: Jan 2011

This is an old post, you might not get much help here.  You might want to start a new topic post to get regular posters information.

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

A

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

I asked my rad onco about Caphosol at my weekly Wed meeting, one of the folks I met HNC group meeting recommended it as it helped him greatly with his sore mouth. Onco wrote script for it and said he doesn't think my insurance will pay for it, has anyone here used it, did your insurance pay anything toward it, and if not do you have a ball park amount that you had to pay?

Linda

gibkoch's picture
gibkoch
Posts: 19
Joined: Apr 2011

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

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

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

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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!

John

gibkoch's picture
gibkoch
Posts: 19
Joined: Apr 2011

I took it towards the end of treatment. I hope that using it as you describe will lessen the not so pleasant side effects of the rads. God Bless.

Gib

SamandIrene's picture
SamandIrene
Posts: 10
Joined: Oct 2011

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.

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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

SamandIrene's picture
SamandIrene
Posts: 10
Joined: Oct 2011

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

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

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

SamandIrene's picture
SamandIrene
Posts: 10
Joined: Oct 2011

Starting early on taking the Mugard may be a great blessing - let us know how it turns out.

God Bless,
Irene

Hondo's picture
Hondo
Posts: 5837
Joined: Apr 2009

Mugard: Just read up on it, I sure hope it works as it said, it would be great. Please give us your feedback after trying it.

Thanks
Hondo

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

Radiotherapist gave me a starter bottle of this, as I have a pretty sore mouth with some mucositis, and some thrush problems. So with the caveat that I already have an active problem, I have tried Mugard and have several observations. It works fairly well for me, for several hours worth of relief after using it. It is certainly not a miracle cure. It also stings pretty strongly when first applied. The reason for this is likely evident in the formulation: it is an alcohol based product, which doesn't make a lot of sense in a product being used for mouth ulcers. It is also acidic, which is a problem when applied to a mucous membrane that is already irritated. It would have been a lot better if they had pH balanced this product.

I do use this product, but if it costs as much as was said above, I won't be buying it. Just my two cents.

Pat

Johnyjackpot's picture
Johnyjackpot
Posts: 22
Joined: Oct 2011

Hi to all.

6 weeks post treatment and doing pretty well. I'm back to work and gaining strength, although not back to anywere near normal yet. Eating is still painful due to lingering tounge sores, so im still supplementing with Boost for 50% of my calories. Are sores on the sides of the tounge a common issue?

I was very compliment in using mugard per instructions. Kept a journal to make sure that I took it as directed. Got mucositis right on sceadule a few days after my first week of inpatient rad. Progressed quickly and within a few days I could only get Boost down. It became difficult to use the Muugard as the pain worsened, as it does sting somewhat. I also found it difficult to keep on sceadule because I slept so much due to the pain Meds. My complance dropped about half way in, but i kept using it 2-3 times a day; until the last week or so. The good news is that I never needed a PEG! I was one of the few, or to my observations the only one I met walking around and waiting for treatment, who did not have to have one. Did the Mugard help? Not sure, but I know it didn't hurt. I think that not needing the tube is perhaps a good way to measure its success.

Best wishes to everyone, John

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

I'm not certain either. I'm 10 days post treatment now. I did use Mugard from time to time, but not routinely. I had trouble with magic mouthwash for a bit, then figured out I just couldn't swallow it because it so completely paralyzed my swallowing mechanism it made me uncomfortable. so I learned to just apply the magic mouthwash to the sore spots and nothing else.

I couldn't eat solid food during the last month of rads, it was just too sore for me to chew. But I ccould get liquids down, so I switched to a liquid diet. I'm still on liquids now, but my mouth is improving. I didn't need a PEG either. As this is the second time I've been radiated, and I've had lots more radiation side-effects this time, its hard for me to conclude one way of the other.

Back to the point. I used the mugard. A sample was given to me by the nuclear med doctor. It does help when used PRN, but personally, I got better relief from using the magic mouthwash up to four times a day, carefully applied.

And yes, sores on the side of the tongue are very common.
Best to you.

Pat

JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Hi, John... Not sure if you already ordered MuGard. Either way, feel free to read my input.

I used MuGard for the first time, starting on Oct. 29th, when the pain from the sores on the lateral sides of my tongue worsened to the point where swallowing water and soft food became excruciatingly painful. I have Non-Hodgkin's Lymphoma and am getting treatment with high dosage chemo in addition to intrathecal chemo (injected into my Central Nervous System). It was after my 4th cycle when this form of oral mucositis quickly crept up on me.

Report from government clinical trials should be coming out soon. Here's the latest update: http://clinicaltrials.gov/show/NCT01283906. My oncologist and nurse practitioner ordered it for me. I was also given Magic Mouthwash, to be taken before eating, and recommended to use MuGard after eating. You're supposed to wait an hour before drinking or eating to let the coating of MuGard take effect.

My condition gradually improved within a few days of taking MuGard and the soreness was completely gone after eight days of use. Since I was using it in conjunction with Magic Mouthwash, there's no easy way to distribute the success among the two products. In addition, I was prescribed methylprednisolone,a steroid to reduce oral swelling, which may have contributed to some improvement with swelling in the back of my throat. I was also prescribed dilaudid, a narcotic pain reliever, which had no intended effect (neither did the morphine they administered at the hospital).

All in all, I would say it's worth trying, if other prescriptions/products are not working. You could use it as a preventative measure, if your doctor considers it a good idea.

Good luck!
JP

AJW1966
Posts: 69
Joined: Nov 2012

for me at least it does. I started it on day one and now i finished 21 of 30 rads and my mouth is doing very well from the sores. I use it 3-4 times a day and when it does hurt, swish some around and i get comfort right away.
Now it doesn't always work for everyone but get a bottle and try it out. Apparently no know side effects and does not react with other meds. My Dr warned me about mixing too many different meds for your mouth. Try one, doesn't work, move on to the next.
All the best and God Bless.

Alan

gordenp
Posts: 2
Joined: Nov 2012

Tonsil ca here, stage 2, no chemo, 33 rad treatments, almost halfway through (#15 today). I'm also a biologist and coincidentally did some research 10-12 years ago on preventing oral mucositis, never imagining that I would become a guinea pig in real life.

The expert who designed the clinical trial of MuGard is Dr. Steven Sonis from Harvard Med School. Knowing him and his expertise from my earlier work, I contacted him when I learned about my upcoming radiation treatments to find out what the "latest-and-greatest" was in OM prevention. His answer was MuGard. I had it prescribed by my rad oncologist using Access Pharmaceuticals online forms. I have used it faithfully since day 2 of radiation treatments.

My oncologist is impressed with the status of my OM, which he expected to be much worse by now. I certainly have had plenty of pain, especially the back edge of my tongue and my throat. Virtually no saliva since day 2 of treatment, and no tongue taste since around treatment 5. Almost all but the very slipperiest foods are out of the question (cream of mushroom soup is OK, vanilla ice cream, egg noodles with enough olive oil), but liquids are fine for me. So I'm hydrated, reasonably well-nourished, and not losing much weight so far.

MuGard does sting my tongue at first, sometimes quite intensely, but after a less than a minute, that calms down. I've noticed that in the past 2-3 days, the intense soreness at the edge of my tongue has decreased dramatically, which is something I never expected to happen until after treatments ended. Also, that terrible lump in the throat feeling like you're trying to swallow a penny has decreased a lot over that same time.

In sum, I strongly recommend it. Use it as directed from the beginning of treatment, 4-6 times per day, don't eat or drink for an hour afterwards. Until something better comes along, it is so far the only proven medication for OM with a significant effect on pain, severity of disease, onset, and weight loss. I don't know how typical or atypical my own experience is, but take it for what it is worth.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Did folks here have to order through the website for Mugard? Or, did you just go to the pharmacy with the script?

Hoping its somewhat convenient!

Thanks, Kari

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

they told me they'd get me some, and later in the day a pharmacy from back east called me, to say they were going to send me my Mugard....that it was $358.00...after I took a gasp at the price the lady said, well how much can you pay for it...$100?? I said yes. A couple days later on this site, I told this story, and another member said I should have gasped twice, as he got his for $50...LOL.

I do remember this tho....he contacted the Mugard site himself and they sent it to him...they don't carry it in regular pharmacies, only the cancer pharms carry it.

Here is the website and how to get the ball rolling to get it...some Dr.'s don't seem to want people to use it, not because it has any side effects or anything, but because it's still in trial and they don't know if it works....it DOES!!...in the 8 months I've been on this forum, many people on here have benefited from it...just copy and paste the url into your address bar.

http://www.mugard.com/how-to-order-mugard-healthcare-professionals/

p

gordenp
Posts: 2
Joined: Nov 2012

I downloaded and printed the online prescription forms from the MuGard website and filled everything in. The doc then looked it over, filled in his parts, signed it, and faxed it in. I also spoke with the company by phone to make sure the order arrived and shipment was coming. It arrived at my house the next day, a box containing 6 pint bottles.

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

the shipment arrived overnight (even here in podunk Montana)....with 6 pint bottles. About a month or so, the pharmacy called me to see if I needed more...I didn't(my Onc had given me two pint bottles he had as samples)...so the pharm has very good customer service.

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Thanks I saw the web site and saw that it might be difficult. Our family dentist told me not to worry, he'd get it in the meantime.. Just hope we see it in time for treatment.. And so very nice to know you all had good experiences.

My husband is one that eats too many lemon drops and regrets it quickly.

Kari

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

I used to do the lemon drop thing as a kid...and regret it also...LOL.

Even if the Mugard gets there a few days late, it'll be ok...the first sign of mouth sore coming is a rough patch in the mouth, kinda like sandpaper. It takes a couple days for that to develop into a sore. I had the sandpaper patches by the the time the Mugard got here, but it still worked for me. It can sting like he** when you put it into your mouth, but that goes away quickly...and then he will feel the soothing begin...I always swallowed it, too...since I was afraid of getting sores in my throat. It is important not to eat or drink anything for an hour after (tho there were times when I wondered "how am I suppose to get enough to eat and wait an hour 6 times a day")....so if I accidently forget, I'd just rinse again after I drank my Ensure.

p

jcortney's picture
jcortney
Posts: 424
Joined: Sep 2012

My Onc sent in the prescription / reimbursement form yesterday and I got a call from the company today. My insurance picked up some of the cost but they told me it would be a $60 a month co-pay. I remembered that some here had bargained with them so I told them I'd need to think about it. They immediately waived the co-pay. Mailing it to me free to my home.

Joe

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

Ah...if only I'd known about being hesitant at the time I got the call...I would have gotten mine at bargain basement prices too....

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Our dentist sent in the form late this afternoon, Monday is our last day at home all day before treatment, so hoping we get the call and the Mugard in the first days. I am practicing my shock and disappointed sounds now!

It's amazing what I will do for this man!

Thanks! Kari

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