Nasal prosthesis help following rhinectomy

KC27
KC27 Member Posts: 5
edited July 2014 in Head and Neck Cancer #1

Hi,

I'm new to this network having stumbled across it while searching for information about a nasal prosthesis.

My beau, who is 73, was diagonosed with squamous cell carcinoma in his nasal cavity several years ago and before I came into his life. He had his septum removed and was told all was well. Less than a year into our relationship, his nose bleeds returned. He opted for radiation (40 doses) in 2012 but that was not successful. Finally, he had a complete rhinectomy in November 2013. His surgeon thought he would have to remove his front four teeth but he didn't -- and we're very grateful for that.

Due to the radiation, it took a long time for the wound to heal. At last, he received his nasal prosthesis. And due to the radiation, we were told he couldn't have implants to attach it. Therefore, the only way to attach the prosthesis is with glue. The problem is he is having trouble keeping it on unless he's wearing glasses. He's using Daro Adhesive Thirty Three. The doctor who made the prosthesis is out of the country and when he returns, may have my beau switch to a stronger glue but the doc doesn't want to do it just yet because my beau has very sensitive skin.

My question is, does anyone have experience with applying a prosthesis with glue. What kind of glue have you found to be successful? Any tips? We live in San Francisco, where the weather is often cool. However, my beau is finding out that he can't wear the prosthesis while working out because of the sweat. He's soooooo tired of wearing a gauge bandage over his nose and having everybody stare at him. Nothing would please him more than to be able to wear the prosthesis while in public after waiting so long for it.

Any suggestions would be helpful.

Thank you and best to you.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    KC27,

    Welcome to the H&N forum, it sounds like beau has been around the cancer block a few times, for this I m sorry.

    I have no experience with prosthesis, but I did find (as you know) stronger glues that Daro Adhesive 33, such as Daro Hydro Bond or the stronger solvent based glues.  I imagine with  his sensitive skin he’ll want to stay water based glues.

    I wish you both good luck and I hope someone chimes in who is able to help.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    KC27...

    Are you on Facebook?  There is a group there with a number of people who have lost their noses.  I can't think of but a couple people who came here, and they just kind of passed through.  Just thinking someone there might be able to offer suggestions.

    Let me know if you're a member there, I can befriend you and get you into that group.

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    kc, you would definitely

    kc, you would definitely benefit by joining facebook.  there is a group there who volunteer for this type of cancer.  there is one woman i know who is very much involved in volunteering for nasal patients as her husband is one.  if you would like her name on fb, pm me.  i truly believe that group would be good for you as they understand from expeience what you are going thru and will better be able to answer your questions.  i know her husband has a nose prosthese but i don't know how he attaches it.  they would not mind talking to you at all.  let me know if you are interested.

    God bless you,

    dj

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #5
    Glue

    I would certainly think that there is something that he could use.  If everything is clean for me I will be looking into a prosthetic for my eye.  I am not able to use a 'glass' eye, but something that attaches to the glasses.  Is there a reason that he soesn't want to wear his glasses?  I agree with the FB group, there are a few with the same situation.

  • KC27
    KC27 Member Posts: 5
    #6
    CivilMatt said:

    welcome

    KC27,

    Welcome to the H&N forum, it sounds like beau has been around the cancer block a few times, for this I m sorry.

    I have no experience with prosthesis, but I did find (as you know) stronger glues that Daro Adhesive 33, such as Daro Hydro Bond or the stronger solvent based glues.  I imagine with  his sensitive skin he’ll want to stay water based glues.

    I wish you both good luck and I hope someone chimes in who is able to help.

    Matt

    Thanks Matt

    Hi Matt,

    Thanks for the welcome and reply.

    This is a great site that I wish I would have discovered a couple of years ago.

    I wish the best for you too!

    KC27

     

  • KC27
    KC27 Member Posts: 5
    #7
    phrannie51 said:

    KC27...

    Are you on Facebook?  There is a group there with a number of people who have lost their noses.  I can't think of but a couple people who came here, and they just kind of passed through.  Just thinking someone there might be able to offer suggestions.

    Let me know if you're a member there, I can befriend you and get you into that group.

    p

    Thank you

    Thanks for the reply and the Facebook suggestion Phrannie. I sent you a msg.

    I'll be toasting you on Aug. 28.

    Cheers,

    KC27

  • KC27
    KC27 Member Posts: 5
    #8
    debbiejeanne said:

    kc, you would definitely

    kc, you would definitely benefit by joining facebook.  there is a group there who volunteer for this type of cancer.  there is one woman i know who is very much involved in volunteering for nasal patients as her husband is one.  if you would like her name on fb, pm me.  i truly believe that group would be good for you as they understand from expeience what you are going thru and will better be able to answer your questions.  i know her husband has a nose prosthese but i don't know how he attaches it.  they would not mind talking to you at all.  let me know if you are interested.

    God bless you,

    dj

    Thank you DJ

    Debbie Jeanne,

    Thank you for offering to put me in contact with the woman. Please do. I sent you a PM.

    May God continue to bless you too.

    My best,

    KC27

  • KC27
    KC27 Member Posts: 5
    #9
    KTeacher said:

    Glue

    I would certainly think that there is something that he could use.  If everything is clean for me I will be looking into a prosthetic for my eye.  I am not able to use a 'glass' eye, but something that attaches to the glasses.  Is there a reason that he soesn't want to wear his glasses?  I agree with the FB group, there are a few with the same situation.

    Glue

    Hi KTeacher,

    Thank you for giving a thumbs up to the Facebook group as well.

    My beau doesn't have anything against wearing his glasses, which he only needs to hide the top of the prosthesis since he recently had lens replacement surgery. We're hopeful to find a way to keep the nose attached at all times. It fell off yesterday at the coffee shop when he removed his sunglasses. This is still new for him so he's learning that he'll have to keep one hand on the prosthetic when he switches his glasses in public.

    I hope everything is clean for you so you can get a prosthetic eye. That's interesting that you can have it attach to your glasses.

    Good luck!

    KC27

  • JWB
    JWB Member Posts: 1
    #10
    Pros-Aide

    I use pros-aide.  It works for me.  They do not ship in the winter time.  I also have sensitive skin. 

  • CalCal
    CalCal Member Posts: 3
    #11
    debbiejeanne said:

    kc, you would definitely

    kc, you would definitely benefit by joining facebook.  there is a group there who volunteer for this type of cancer.  there is one woman i know who is very much involved in volunteering for nasal patients as her husband is one.  if you would like her name on fb, pm me.  i truly believe that group would be good for you as they understand from expeience what you are going thru and will better be able to answer your questions.  i know her husband has a nose prosthese but i don't know how he attaches it.  they would not mind talking to you at all.  let me know if you are interested.

    God bless you,

    dj

    Rhinectomy

    DJ,

    Is there another way to reach the woman who helps answer questions about rhinectomy patients?  I don't do FB (weird I know).  My father just had one but hasn't received the prosthesis - they couldn't do the magnets so he will have glue too.  Also they are telling him to do radiation but we are hearing some awful stores of patients losing taste/smell after the radiation.  I'd love to see if anyone else on this board has been through something similar before he agrees to the radiation.

    Thank you!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    CalCal said:

    Rhinectomy

    DJ,

    Is there another way to reach the woman who helps answer questions about rhinectomy patients?  I don't do FB (weird I know).  My father just had one but hasn't received the prosthesis - they couldn't do the magnets so he will have glue too.  Also they are telling him to do radiation but we are hearing some awful stores of patients losing taste/smell after the radiation.  I'd love to see if anyone else on this board has been through something similar before he agrees to the radiation.

    Thank you!

    CalCal....

    The only way I know of to contact the people in the FB group is via FB.  I do know that there are many people in that group who don't do Facebook per se.....they only participate in the group itself and nowhere else.  The group is a secret group, so no one outside of that group can see posts.  And there is a way to keep yourself secret on Facebook, also....it'd almost be like not doing FB....only different :).

    p

  • CalCal
    CalCal Member Posts: 3
    #13
    phrannie51 said:

    CalCal....

    The only way I know of to contact the people in the FB group is via FB.  I do know that there are many people in that group who don't do Facebook per se.....they only participate in the group itself and nowhere else.  The group is a secret group, so no one outside of that group can see posts.  And there is a way to keep yourself secret on Facebook, also....it'd almost be like not doing FB....only different :).

    p

    Thank you!  My sister has a

    Thank you!  My sister has a FB account - I am trying to see if she will let me use it so we can get in touch with the FB group. How do I reach out to them on FB if she will let me use it?

  • CalCal
    CalCal Member Posts: 3
    #14
    phrannie51 said:

    KC27...

    Are you on Facebook?  There is a group there with a number of people who have lost their noses.  I can't think of but a couple people who came here, and they just kind of passed through.  Just thinking someone there might be able to offer suggestions.

    Let me know if you're a member there, I can befriend you and get you into that group.

    p

    Facebook

    How would I get in touch with the facebook group?  

  • goodinfo14
    goodinfo14 Member Posts: 2
    edited September 2019 #15
    phrannie51 said:

    KC27...

    Are you on Facebook?  There is a group there with a number of people who have lost their noses.  I can't think of but a couple people who came here, and they just kind of passed through.  Just thinking someone there might be able to offer suggestions.

    Let me know if you're a member there, I can befriend you and get you into that group.

    p

    facebook group

    Hi phrannie51

    I was trying to locate people on facebook that have lost there noses like i have

    could you please tell me name of group so i can reach out to them

    Thank you  Jim  

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #16
    goodinfo14 said:

    facebook group

    Hi phrannie51

    I was trying to locate people on facebook that have lost there noses like i have

    could you please tell me name of group so i can reach out to them

    Thank you  Jim  

    Jim You May

    Want to private Message her also through CSN you may reach her quicker. I tried to private message you with this idea but it says private messaging is blocked-Take care-God Bless

  • goodinfo14
    goodinfo14 Member Posts: 2
    edited October 2019 #17
    wbcgaruss said:

    Jim You May

    Want to private Message her also through CSN you may reach her quicker. I tried to private message you with this idea but it says private messaging is blocked-Take care-God Bless

    Thank You

    Thank You

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