Caphasol or mugard?

Sam999
Sam999 Member Posts: 319 Member
in Head and Neck Cancer #1
I start my radiation next week. Laralyn and Phrannie, i have been all your posts and see that mugard seems to be helping you. Overall you both are doing okay and that is reducing my anxiety a bit.

I read information on mugard and caphasol and looks like mugard might be better. However my doctor insists on caphasol, did not explain why.

I am wondering if anyone knows the difference between the two.

Also is it okay to just tell the dotor that i would rather go with mugard ?

Thanks,
Sam

Comments

  • Laralyn
    Laralyn Member Posts: 532
    #2
    Glad you asked!
    I asked my doctor the same question. He said he preferred either MuGard or Caphasol, and I chose to go with the MuGard. To be honest, it was mostly because of the testimonials on their website and some of their early data that showed such tremendous success in trials.

    There are a couple reasons your doctor may be choosing caphasol. MuGard is not covered by many insurance companies now, and it's expensive. I think even caphasol may be hard to get, but MuGard wasn't even listed yet for my insurance. It's that new.

    He may also be going with the one that has more available data. Caphasol has been out a bit longer, so they probably have more studies. I was interested in the MuGard studies that showed it seems to STOP mucositis rather than the Caphasol studies that show it REDUCES THE SEVERITY of mucositis.

    There is a form on the MuGard site that you can fill in and ask your doctor to send to them. All he has to do is sign and put in the diagnosis. In my case, since insurance wouldn't cover it, MuGard sent a sample of six bottles to my doctor to give to me--enough for my full treatment. They're trying to get the word out, and they may choose to do that for you as well. http://www.mugard.com/how-to-order-mugard-healthcare-professionals/

    It's your body and your choice. Tell your doctor what YOU want to do. If you decide to try the MuGard (whether your insurance covers it, they send samples, or you pay out of pocket), tell your doctor that you will be the guinea pig for the treatment center, and everyone can get first hand info on how/whether MuGard makes a difference. That's what's happening at both my radiation and chemo centers. They ask every week how it's doing, and as I go into week four with no mucositis (or maybe one teeny spot on my uvula that may be mucositis or may be thrush), they're paying more and more attention!

    Watch the testimonials on the MuGard site. The one with the mom actually made me cry, and it's what convinced me. And I'm not usually convinced by testimonials or ads.
  • osmotar
    osmotar Member Posts: 1,006
    #3
    Caphasol
    I learned about caphasol from another HN patient at a group meeting, I asked my rad doc and he wrote a script for me...I used it 4x's a day for 7 1/2 weeks of rads and never had an issue with sores or burns in my mouth. I also continued in between with baking soda/salt solution. I will say while caphasol is expensive, my insurance paid all but $50 of the script. I don't know anything about the mugard, but would use the caphosol again if I had to. I think your doc should explain why he chooses one over the other and then let you make your decision.

    Linda
  • Sam999
    Sam999 Member Posts: 319 Member
    #4
    osmotar said:

    Caphasol
    I learned about caphasol from another HN patient at a group meeting, I asked my rad doc and he wrote a script for me...I used it 4x's a day for 7 1/2 weeks of rads and never had an issue with sores or burns in my mouth. I also continued in between with baking soda/salt solution. I will say while caphasol is expensive, my insurance paid all but $50 of the script. I don't know anything about the mugard, but would use the caphosol again if I had to. I think your doc should explain why he chooses one over the other and then let you make your decision.

    Linda

    I think my doctor wants to
    I think my doctor wants to stay with caphasol becuase that is what she has exp with. I perosnally think they should read more and evaulate more. As Laralyn said mugard seems to stop the mucosities verses caphasol reducing it.

    My insurance is covering only part of the cost, i have to pay $250 per bottle. I think it costs about $700.

    Linda, i am happy to hear that you had good exp with caphasol as i might end up using it if that is what my doc is comfotable with. I do like the doc and trust her just a bit unhappy about how she is handling my concern on caphasol verses mugard.

    Laralyn, i will definately give a try to mugard link you sent and it will be great if they can do the same for me.

    Thanks,
    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Laralyn said:

    Glad you asked!
    I asked my doctor the same question. He said he preferred either MuGard or Caphasol, and I chose to go with the MuGard. To be honest, it was mostly because of the testimonials on their website and some of their early data that showed such tremendous success in trials.

    There are a couple reasons your doctor may be choosing caphasol. MuGard is not covered by many insurance companies now, and it's expensive. I think even caphasol may be hard to get, but MuGard wasn't even listed yet for my insurance. It's that new.

    He may also be going with the one that has more available data. Caphasol has been out a bit longer, so they probably have more studies. I was interested in the MuGard studies that showed it seems to STOP mucositis rather than the Caphasol studies that show it REDUCES THE SEVERITY of mucositis.

    There is a form on the MuGard site that you can fill in and ask your doctor to send to them. All he has to do is sign and put in the diagnosis. In my case, since insurance wouldn't cover it, MuGard sent a sample of six bottles to my doctor to give to me--enough for my full treatment. They're trying to get the word out, and they may choose to do that for you as well. http://www.mugard.com/how-to-order-mugard-healthcare-professionals/

    It's your body and your choice. Tell your doctor what YOU want to do. If you decide to try the MuGard (whether your insurance covers it, they send samples, or you pay out of pocket), tell your doctor that you will be the guinea pig for the treatment center, and everyone can get first hand info on how/whether MuGard makes a difference. That's what's happening at both my radiation and chemo centers. They ask every week how it's doing, and as I go into week four with no mucositis (or maybe one teeny spot on my uvula that may be mucositis or may be thrush), they're paying more and more attention!

    Watch the testimonials on the MuGard site. The one with the mom actually made me cry, and it's what convinced me. And I'm not usually convinced by testimonials or ads.

    Nobody even mentioned Caphasol to me......
    it was MuGuard from the git go. My Oncologist gave me a sample bottle, and said if I ran out to just ask for another sample bottle. A sample bottle is big, like 4.5 oz's....Now I'm getting nervous....I wonder how much it is for a bottle??

    I sure works, tho! If you get sores, it starts clearing them up right away...wish I'd started it before I got any.

    p
  • Laralyn
    Laralyn Member Posts: 532
    #6
    phrannie51 said:

    Nobody even mentioned Caphasol to me......
    it was MuGuard from the git go. My Oncologist gave me a sample bottle, and said if I ran out to just ask for another sample bottle. A sample bottle is big, like 4.5 oz's....Now I'm getting nervous....I wonder how much it is for a bottle??

    I sure works, tho! If you get sores, it starts clearing them up right away...wish I'd started it before I got any.

    p

    Might be worth asking for another bottle in advance
    You're actually supposed to use the MuGard every 4-6 hours. They said on the website you can start to feel when its effect is fading off, and it's true. My mouth starts to feel "hot" and the cheek linings feel thin and burn a little.

    I take it roughly every 6 hours unless I feel like its worn off earlier.
  • Sam999
    Sam999 Member Posts: 319 Member
    #7
    Sam999 said:

    I think my doctor wants to
    I think my doctor wants to stay with caphasol becuase that is what she has exp with. I perosnally think they should read more and evaulate more. As Laralyn said mugard seems to stop the mucosities verses caphasol reducing it.

    My insurance is covering only part of the cost, i have to pay $250 per bottle. I think it costs about $700.

    Linda, i am happy to hear that you had good exp with caphasol as i might end up using it if that is what my doc is comfotable with. I do like the doc and trust her just a bit unhappy about how she is handling my concern on caphasol verses mugard.

    Laralyn, i will definately give a try to mugard link you sent and it will be great if they can do the same for me.

    Thanks,
    Sam

    Thanks Laralyn

    I called Mugard as you suggested and they will cover the cost that my insurance will not, so for me all will be covered.

    Hope it works for me as it has for you guys. How many times do you use? Do you use it before the radiation session as well? How about night?

    Thanks,
    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    Sam999 said:

    Thanks Laralyn

    I called Mugard as you suggested and they will cover the cost that my insurance will not, so for me all will be covered.

    Hope it works for me as it has for you guys. How many times do you use? Do you use it before the radiation session as well? How about night?

    Thanks,
    Sam

    Sam....I use it first pop in the morning....
    ...then right before I leave for amifostine and rads......again when I get home....and the last thing before bed at night...Start using it before you get anything going in your mouth...

    p
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #9
    phrannie51 said:

    Sam....I use it first pop in the morning....
    ...then right before I leave for amifostine and rads......again when I get home....and the last thing before bed at night...Start using it before you get anything going in your mouth...

    p

    MuGard.
    I filled in the order form from the MuGard web site and my Dentist signed
    Of on it, they contacted me and said I would have to pay $60 for 6 bottles
    Which I did and they delivered it. I took it on and of (I'm not very consistant
    When it comes to taking meds or things) but what I did take it seemed to help
    But I also used sodium bicarb / salt and aloe so who knows.
    I'm almost 4 weeks out of rads and still have no taste or saiva and the throat
    Still hurts to swallow, so I take lortab before my evening meal to take away the pain
    cause magic mouthwash does nothing for me (tonight I had steak, ff's, veg & gravy)
    It takes time but I manage to eat it. So at least I'm eating one good meal a day as
    Well as the shakes and supplements.

    God bless
    Tonsil Dad,

    Dan.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    phrannie51 said:

    Sam....I use it first pop in the morning....
    ...then right before I leave for amifostine and rads......again when I get home....and the last thing before bed at night...Start using it before you get anything going in your mouth...

    p

    I was starting a new sore this morning..........
    tonight it's gone, or almost gone....and I give credit to 4 times usage of the MuGuard.

    When I was getting the amifostine today, I told them I'm running low, and out came another sample bottle :). The Nurse Practioner told me, that she's having really good luck with people who use it before stuff starts. MuGuard (she said)...doesn't do much for those in full blown mouth sores. (tho I wonder if that's because it can be sooooo damn stingy, that people shudder at the thought)...I just bit the bullet the first few days, and am glad I did.......

    Dan.......you are eating SO good!! Steak and fries? :) Good job!

    p
  • Laralyn
    Laralyn Member Posts: 532
    #11
    phrannie51 said:

    I was starting a new sore this morning..........
    tonight it's gone, or almost gone....and I give credit to 4 times usage of the MuGuard.

    When I was getting the amifostine today, I told them I'm running low, and out came another sample bottle :). The Nurse Practioner told me, that she's having really good luck with people who use it before stuff starts. MuGuard (she said)...doesn't do much for those in full blown mouth sores. (tho I wonder if that's because it can be sooooo damn stingy, that people shudder at the thought)...I just bit the bullet the first few days, and am glad I did.......

    Dan.......you are eating SO good!! Steak and fries? :) Good job!

    p

    Every 4-6 hours
    I use my MuGard every 4-6 hours. You really do get to the point where you can feel when it's worn off. Your mouth just feels... different!

    You swish around 5-10 ML for a minute and then I try to swallow it at least once a day so it can get any sores starting in my throat. It can be hard to swallow because of the consistency for me (I have thrush, and it makes me gag on thick liquids right now), but it's worth the effort if you can get it down.

    It's great that they're getting the bottles out to people who need it! Let's keep spreading the word! After my treatment, I'm going to write an impassioned plea to insurance boards to get it covered.
  • rocky99
    rocky99 Member Posts: 15 Member
    edited May 2020 #12
    Tonsil Dad said:

    MuGard.
    I filled in the order form from the MuGard web site and my Dentist signed
    Of on it, they contacted me and said I would have to pay $60 for 6 bottles
    Which I did and they delivered it. I took it on and of (I'm not very consistant
    When it comes to taking meds or things) but what I did take it seemed to help
    But I also used sodium bicarb / salt and aloe so who knows.
    I'm almost 4 weeks out of rads and still have no taste or saiva and the throat
    Still hurts to swallow, so I take lortab before my evening meal to take away the pain
    cause magic mouthwash does nothing for me (tonight I had steak, ff's, veg & gravy)
    It takes time but I manage to eat it. So at least I'm eating one good meal a day as
    Well as the shakes and supplements.

    God bless
    Tonsil Dad,

    Dan.

    Need link to fill out MuGard Order form

    Hello Dan,

    How did you fill out the Order form on MuGard web site? 

    Do you have that link to share with me? 

    Pleaes advise.

    Thanks.

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