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mugard

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

had ron's oncologist fax in an order for the mugard, they said if insurance wouldnt cover it it would be about $1500 for a months supply!

well, was told my insurance wouldnt cover it. so gave up on it.

got a call today from mugard rep. they are sending a months supply to rons oncologist in his name, no charge. told

me that when he gets to the last bottle , have the dr fax in the enclosed form and they will send another month of samples for

no charge.

I feel lucky.

on the other hand, ron has soooo much fatigue I drove up and met him with a friend and we drove him home, he is out on disbility now.

week 1 not even finished and he is out of it and exhausted.

oncologist said normal and will see him on monday for labs, before chemo.

I told them to look at the last lab ranges prior to 1st chemo, he was low on potassium and all the ranges were barely registing a normal.

they might have to give him potassium and magnesium IV on monday along with the 4 and 1/2 hour chemo.

35 more rads to go and 8 more chemos.

trying to stay positive and keep plugging along to keep up on daily life and keep him comfortable.

It is exhausting.

BUT, at least he will get the mugard that ya'll recommended.

hope it helps some.

thankyou,

janet

 

 

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

Janet

 

That is great. If you don't mind me asking how did the rep find out about Ron?

Prayers are answered.....................tell Ron to fight on.

      Jeff

donfoo's picture
donfoo
Posts: 1156
Joined: Dec 2012

I've been watching mugard and there is definately something going on with this product, the company and where the big push is coming from to get this product through trials and fully FDA approved. I have done zero research so everything said here is pure speculation. The only facts I know is the stock of the company behind Mugard is on a rocketship the past few years. My own RO asked me to participate in a clinical trial of mugard. He said he would NOT prescribe it to me but then offers me a clinical trial for it. Hummmm... Then there are these "from the cracks" shows up mysterious mugard sales folks. Then are the oh, we'll work out the payment thing, like zero cost. They have been giving the stuff away for years.

There is definately something going on like this drug is getting close to the market officially and all stops are out to get the cash coming in big time on this drug. There is a lot going out, in terms of free product, and aggressive sale group, as well as a bunch of heavy greasing of doctors backsides to push this stuff.

Like I said I have no idea of what is going on other than how a pharma company in general has to spend huge huge dollars for a very long time before they start clawing back huge and huge amounts of money once drugs are fully approved and in the pipeline.

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

Don

Your right, drugs are big money. Being a trustee on a health and welfare fund I see the costs of  drugs until the patent runs out and the price drops. But during that period they make boo koo bucks. $1500 a month is not bad compared to the cost of some of the other drugs on the market.

 

I guess you answered my question on how they found out.

      Jeff

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

For those who are wondering how the rep found out about Ron ... Ron's wife, Janet, said in her post that she asked Ron's oncologist to fax in a prescription so obviously Ron would have become known to the Mugard reps through that prescription request.  When my son was first diagnosed in July 2012 and before tx started, I did a lot of searching for anything that would help him get through this ordeal.  In searching online, I found the Mugard.com website and other web pages with comments from patients who felt that they were helped by using it during tx.  My son's Rad Onc had never heard of it but was willing to let my son try it (he now prescribes it for all his patients).  I gave the Rad onc nurse the web address of the Mugard website and she printed out the online prescription request and faxed it into Mugard since there were no pharmacies where it was available in our area at the time.  I did take note of the fact that MD Anderson in Houston had just added Mugard to their formulary last year but it was still relatively unknown across most of the US. Upon receiving the faxed in prescription, the Mugard customer rep contacted my son's insurance company to find out if they would cover it ... but insurance coverage for it was denied.  This was on the Friday before my son was to begin Rad tx on Monday.  The Mugard rep kept in touch with us by phone and arranged to have a free supply expedited in order to arrive by Monday so that there would be no delay between the beginning of Rads and the use of the Mugard.  They had a rep deliver it in person to my son's Rad onc office on Monday morning.  In conversations with the Mugard rep, I was led to understand that they were trying to raise awareness with the oncologists and the insurance companies about the benefits of this relatively new product and hoped that providing it free to patients who could not afford it out of pocket would allow benefits from the use of Mugard to be recognised. I am very grateful for the kind communication and concern for my son shown by the Mugard customer service rep (her name was Bonnie) and for the way the company reached out to provide their product at their own expense with such efficiency.  My son used Mugard every few hours every day beginning the first day of Rads and I believe Mugard is responsible for the fact that he never developed any mouth sores.  He did have pain deep in his throat which made swallowing difficult at the end of tx ... possibly because he did not swallow the Mugard and only coated his mouth with it...but his mouth, lips, and tongue never developed sores.  I know that many of the large pharmaceutical firms do have 'compassionate care' programs to provide expensive drugs to patients with limited income who do not have insurance that will cover those products. For instance, I developed wet macular degeneration at the age of 64 and the monthly injections of Lucentis needed to save my vision were $2,000 each when I was first diagnosed.  That was four months prior to my becoming 65 and eligible for medicare.  My insurance at the time would not cover Lucentis and my 67yo husband and I were trying to recover financially from losing our home in a 2005 hurricane by living frugally on social security.  Genetech, the company who makes Lucentis provided it free to me for those four months until I was covered by medicare.  I am simply grateful.

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

hello

yes a script was faxed to mugard , but reluctantly by rons oncologist, he thought it was just a glycering product. that was over a week ago.

ron strted rads this week with chemo, having a tough time.

on wednesday mugard called me, the oncologist did in fact decide to fax the script in, he checked into it and decided to give it a try. I guess ron is a guinea pig for

him.

I am a nurse and we have a lot of drug reps come thru, and there are a lot of help programs out there for patients, you have to jump thru hoops and we do

a lot of paper work and begging for our patients to get assistance. patients also usually have to provide proof of income. Mugard did not ask for any assistance of payment or even ask for proof of income which shocked me. they didnt even ask me if we still wanted it since our insurance denied it. they just called me and said they were shipping it to rons oncologist asap.

I had heard of it on these threads from phrannie and another patient(sorry I cant remember her name, sleep deprivation is getting to me) who sent me the

website.

I will do anything to help ron stay as healthy and comfortable during this time. I was even willing to pay some for it. They gave it for free and said for 2 months. and he is to use it up 5 times a day, swish and let dry and dont drink for an hour. definitely use it prior to rad treatment. I was concerned that he might be too late since he already started rads this week., but they are confident in their products ability and I am willing.

I still plan on having ron use the magic mouthwash with lidocaine also since alot of our patients had ok to good results with it. and thankyou don about the viscious lidocaine, will be checking into that. and since most of the offices are now electronically we depend on what has been entered into the database by history, we sometimes dont have the exact thing to click on when prescribing to the pharmacy, love the electronical age. pharmacies now are requiring us to send electonic scrips , its a "bonus" per the insurance companies and our government . well, if its not in the data base of our office software, we usually can call our IT dpartment and have them hand program in exactly what we want listed. or we usually can use a generic form in the software to get the exact formula needed. so I hope Donfoo to get extra vicious lidocaine. sounds like a rabbid dog. lol

thankyou all who gave me advice and please keep it coming, ron is really having a tough tome and only 4 days in.

janet

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Janet,  getting into a logical routine is helpful.  There are so many things to do everyday that it can seem overwhelming.  For mouthcare, it makes sense to use use the lidocane/magic mouthwash immediately prior to eating followed by brushing teeth, then rinsing with salt/baking soda solution and finally using the Mugard.  That way the Mugard is allowed to remain as the final coating on the oral tissues.  The salt/baking soda rinse followed by Mugard should also be used between meals and at bedtime.  Slathering the neck with whatever skin cream the onc team recommends is also easier to remember if it is done after showering and then after each use of Mugard just to establish a regular pattern of use.  Having all those supplies together in a sectioned plastic tote of some sort also helps.  One of the challenges, especially if your husband is feeling well enough to get out of the house to enjoy an activity or go to the library or socialize, is trying to maintain the structured mouth care routine as many times as reccommended.  As treatment progresses and side-effects increase while his energy levels drop; the challenge may become balancing your husband's desire to sleep away most hours of every day with the need to maintain a care routine.  The fact that you are a nurse will be a huge plus in knowing what will help with juggling all that needs to be done.  Having you there to help him remember and accomplish all those details is such a blessing. 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thankyou,

he seems to be getting the symptons early on.

barely eating, will drink but now the nausea is back. i guess his 3 day emend by IV has worn off. But at least he is 1 week down and 7 more to go.

He is sleeping 2 hours and functioning 1 to 2 hours before he needs another nap.

thankyou about the routine, we have one but wasnt sure which to do first since my brain is fried from sleep deprivation. He is also using some L-glutamine

swish and swallow.

This is very tiring and I have a 6 year old too. Luckily my sitter takes him all the time, they are like grandparents to him.

Hoping to get thru this fast and minimal symptons as possible.

Thankyou

janet

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

What chemo regime is he on?

As far as Mugard. I called our insurance and they said it was not covered. Doc faxed the scrip to them and Mugard called me and said it was covered with a $100 co-pay. I was shocked they somehow got it covered. Then in the next breath she said if we could not afford the co-pay they would right it off.

I told her I am the only one working and really couldn't afford it. She said no problem and we had it the next day. 

Rob was out of work 5 days in. Exhaustion got him fast. He has suffered from chemo fog brain and can't concentrate on anything. 

We are now 2 weeks out. He is sleeping less but still takes 2 naps a day. No food by mouth now for over 3 weeks. Mucous is thinning and no mre gagging. Still spitting. He vomited twice and gagged many times but it really gets me with the sptting. I hate spitting. The glutamine thinned his mucous within a day of using it in his water. 

Today is the first day he stepped out of the house in 7 days. He was outside talking to the neighbor for about 20 minutes. Maybe we are making baby steps to healing.

Good luck with everything.

Sandy

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

hi sandy,

ron is on cisplatin, was supposed to get 3 big doses thru out but they broke it up to once weekly for 9 weeks. gets 39 rads

one week down and fatigue got him bad , didnt even make it the 4th day.

was eating but now between nausea and fatigue hardly eating. But at least he is not driving that long drive to and from work and then to and from rads.

Good to hear about how rob is doing, it is encouraging. Did he start out with a peg tube? Did the mugard help with the mouth sores at all?

you said the glutamine helped with the mucous? thru out?

sorry so many questions, I am trying to do all this alone, we dont have family nearby, only my babysitter and her husband who are like grandma and grandpa to

my son.

thankyou,

janet

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

sandy,

I dont know what kid of cancer does rob have and what is his treatment?

I know you had told me in past and other threads but cant remember, tried to look on your profile but its not listed.

thankyou,

janet

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

Tonsil with lymph node involvement. He is in rough shape but I think everyday is taking baby steps. Talking more.

He got the PEG at 3 1/2 weeks in. He has had a very bad time with thrush. The Mugard has helped soothe the sores and keep his mouth moist. He says it is a life saver at bedtime and he has not really had a hard time sleeping. Woke up gagging less than a handful of times.

We started the glutamine a little late. His mucous was thick for about a week and as sson as he started it, it thinned out within hours. 

You can find L-Glutamine tablets at Walmart. I just crush up 2 of them and put it in a 16oz bottle of water for him. He likes it in the bottle so he can shake it up everytime he drinks some.

Just tell him to sleep when he wants, rest is a great healer. Rob hasn't worked since April 20. He will get testy with you at times, just remember not to take it personal, but at the same time I didn't let up when he didn't want to do this or that. Especially getting hyddrated and fed. I had to fight him on many a day. I know he will thank me for staying on him. 

I am glad that I am so busy doing and going, it keeps me from having time to worry to much. Luckily since treatment began I have only shed some tears once when I was truely exhausted. Hang in there it will end and he will make it through. 

Prayers to you and you husband, there is a light at the end of this. Try to rest when you can. Keep yourself nourished and hydrated also. Don't get run down.

Sandy

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thankyou sandy,

Its been a tough weekend with ron.

one sone in and out of the ER, and the other son might be moving. so tired but seeing what you posted gives me encouragement.

Hoping to get some sleep tonight once my youngest gets to bed. No appts tomorrow so no having to get up early, so might get to sleep past

5am, lol

keep me posted on any advice.

thankyou,

janet

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

wants it's product to be used by HNC patients.  After they called me, I got my "one month" suppy for $100...somebody else on here got it for $50.  That one month supply lasted me all thru radiation and I still have one bottle in my cuboard.  You may never have to get anymore for the rest of treatment.

I loved the stuff....has one he** of a kick when you first put it in your mouth, but then you feel the relief begin....

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou phrannie,

I would have never known about it or l-glutamine if not for you and another lady on here who I cant remember her name,sorry.

we should be able to pick it up tomorrow.

I hope it works.

ron had a bad week, I was worried, nausea, fatigue was horrible, he stopped eating thursday, friday but by sat was able to barely eat. today he had no pain and was awake most of the day. he ate very well, and even asked for pizza!

I guess since he doesnt get rads on weekends that he can rest some.

we start all over in the am. full day of dr's , rads and chemo.

again thanks for all the advice and tips.

janet

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