any new treatments for dry mouth

abbimom
abbimom Member Posts: 87 Member
edited March 2014 in Head and Neck Cancer #1
I keep asking my doctors but no one really gives me any ideas. Anything new or something that is working for someone for dry mouth. I've been living with this for 10 years and I can't believe they can't find anything that works. Thanks
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Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Have you tried this
    I am now almost 15 years and about 8 years ago I found Stoppers4 after trying everything I could. It has worked for me and about 15 or so in our local h&nc support group with only one it did not work for.

    The first couple times will struggle but after 2-3 you should see some help.

    here is the site we all get ours from, you might need to copy and paste to browser

    http://www.jocottbrands.com/cart.php?m=product_detail&p=85&c

    If you try let me know if it works for you
  • Pam M
    Pam M Member Posts: 2,196
    Accupuncture
    Never tried it, but have heard good things. Results for "regular" accupuncture (chinese methods) were mixed here. Korean got rave reviews - I think only a couple did Korean. I'm sure a current poster here has done the Korean, and another knows how to pick an accupuncturist (is that even a word?).

    Just looked it up - the post is "How do I produce more saliva?", started last fall. FDS man knew how to pick the person for the job. Mermaid52 took her hubby to a Korean practitioner, and gave him homeopathic remedies. Scambuster was hoping to have it done. I'm patting myself on the back now, for remembering. Good luck.
  • abbimom
    abbimom Member Posts: 87 Member
    fisrpotpe said:

    Have you tried this
    I am now almost 15 years and about 8 years ago I found Stoppers4 after trying everything I could. It has worked for me and about 15 or so in our local h&nc support group with only one it did not work for.

    The first couple times will struggle but after 2-3 you should see some help.

    here is the site we all get ours from, you might need to copy and paste to browser

    http://www.jocottbrands.com/cart.php?m=product_detail&p=85&c

    If you try let me know if it works for you

    thanks
    thank you firspotpe I will look into that. I was also wondering does anything spicy or any kind of spice burn your mouth because it does to mine?
  • abbimom
    abbimom Member Posts: 87 Member
    Pam M said:

    Accupuncture
    Never tried it, but have heard good things. Results for "regular" accupuncture (chinese methods) were mixed here. Korean got rave reviews - I think only a couple did Korean. I'm sure a current poster here has done the Korean, and another knows how to pick an accupuncturist (is that even a word?).

    Just looked it up - the post is "How do I produce more saliva?", started last fall. FDS man knew how to pick the person for the job. Mermaid52 took her hubby to a Korean practitioner, and gave him homeopathic remedies. Scambuster was hoping to have it done. I'm patting myself on the back now, for remembering. Good luck.

    maybe
    I've been thinking about trying it. thanks for remembering the info.
  • Scambuster
    Scambuster Member Posts: 973
    abbimom said:

    maybe
    I've been thinking about trying it. thanks for remembering the info.

    Acupuncture
    Hi Abbi,

    Yes I have been getting Acupuncture since Xmas and I think it has helped. I have about 15-20% now and a more even amount as earlier it went from 0-15% fluctuating through the day. My acupuncturist uses mainly points in the ears and sometime on the face, toes and fingers. Someone here posted a technique developed by an American Acupuncturist /Doctor. Mine tried it out on me and I noticed immediate effects and a longer term slight improvement. It was similar to what mine was already doing but a but weird as it had to to be done while sitting and sucking on sugar free lozenges. PM me and I can send you the brief. The techniques are a combo or Chinese, French, American and German studied points.
    Scam
  • hawk711
    hawk711 Member Posts: 566

    Acupuncture
    Hi Abbi,

    Yes I have been getting Acupuncture since Xmas and I think it has helped. I have about 15-20% now and a more even amount as earlier it went from 0-15% fluctuating through the day. My acupuncturist uses mainly points in the ears and sometime on the face, toes and fingers. Someone here posted a technique developed by an American Acupuncturist /Doctor. Mine tried it out on me and I noticed immediate effects and a longer term slight improvement. It was similar to what mine was already doing but a but weird as it had to to be done while sitting and sucking on sugar free lozenges. PM me and I can send you the brief. The techniques are a combo or Chinese, French, American and German studied points.
    Scam

    mouth spray
    I have been using the Biotene spray and it seems to work for awile. I spray it about 10 times a day! I just ordered the Stoppers4 that fisrpotpe offered up in his post. I hope it is that good for me as it was for him.
    Dry mouth is the bane all of us H&N cancer patients share. I can handle it as long as the cancer stays away!! I want the cancer out and I'll deal with the new normal as we say..
    Keep searching, who would have thought accupuncture would have worked???
    Stay positive and good luck
    Steve
  • Fire34
    Fire34 Member Posts: 365
    hawk711 said:

    mouth spray
    I have been using the Biotene spray and it seems to work for awile. I spray it about 10 times a day! I just ordered the Stoppers4 that fisrpotpe offered up in his post. I hope it is that good for me as it was for him.
    Dry mouth is the bane all of us H&N cancer patients share. I can handle it as long as the cancer stays away!! I want the cancer out and I'll deal with the new normal as we say..
    Keep searching, who would have thought accupuncture would have worked???
    Stay positive and good luck
    Steve

    Dry Mouth
    My med onc just prescribed salagen. I have just started it and haven't taken enough to let everyone know how it works. Has anyone else used it?
    Stoppers4 works a little for me, not as good as it does for Hondo though, but it helps me get thru the night. I still have a little glass of water on the night stand and that seems to be as good as anything.
    Wishes & Prayers
    Dave
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    abbimom said:

    thanks
    thank you firspotpe I will look into that. I was also wondering does anything spicy or any kind of spice burn your mouth because it does to mine?

    spice not good
    anything spicy including too much pepper does not work at all. I can not taste but sour things make me pucker. Do you have problem with opening your mouth. I can only get about 3/4" between my teeth.

    We have done well though for this long.
  • abbimom
    abbimom Member Posts: 87 Member
    fisrpotpe said:

    spice not good
    anything spicy including too much pepper does not work at all. I can not taste but sour things make me pucker. Do you have problem with opening your mouth. I can only get about 3/4" between my teeth.

    We have done well though for this long.

    spice sucks
    I feel like my mouth opening has gotten worse since I recently had my wisdom teeth removed. Sometimes I feel like my mouth is just getting worse the older I get. It is so funny to watch me eat a sandwich I have to smash it and then shove it in. It is amazing how much people take eating for granted. I shouldn't complain at least I can eat some things.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    abbimom said:

    spice sucks
    I feel like my mouth opening has gotten worse since I recently had my wisdom teeth removed. Sometimes I feel like my mouth is just getting worse the older I get. It is so funny to watch me eat a sandwich I have to smash it and then shove it in. It is amazing how much people take eating for granted. I shouldn't complain at least I can eat some things.

    Do not do any more
    I do not eat sandwiches because of the thickness and yes I did the same by smashing.

    Have you tried the sandwich thins? they are round about the size of bun, very thin. You can find them in the bead section of the store.

    We had a few friends over last night for small group. One of them is also a 2 year survivor of head and neck cancer, he tried it for the first time and loved it. Had his first hamburger on a bun of the grill in over 2 years and ate the who sandwich. ( I was more than trilled for him)

    Another I like to use is tortilla wraps. I like the ones that are the thinest. That way you do not need to smash them. You can put anything on them you want and the wraps are not like bread and become sticky when you try to eat and get caught in mouth and tongue. One that I like alot is peanut butter and banana. Spread peanut butter on shell, take a whole banana and lay on shell and roll up loosely. Then I flatter and heat in microwave for 25 approx. seconds. You can also cut up the banana and not have to smash or you can cut in 1/2" pieces and leave together like it is rolled up and then heat, eat with fork. I have share with many non survivors and they love this also.

    how did you do the the teeth removal and healing? I had two teeth removed do to infection in early May. The two are barely healed over yet today and am beginning to think they will not. another errr for us. Oh well.

    Your so right, I should have nothing to complain about. At least I can!

    John
  • Greg53
    Greg53 Member Posts: 849
    fisrpotpe said:

    Do not do any more
    I do not eat sandwiches because of the thickness and yes I did the same by smashing.

    Have you tried the sandwich thins? they are round about the size of bun, very thin. You can find them in the bead section of the store.

    We had a few friends over last night for small group. One of them is also a 2 year survivor of head and neck cancer, he tried it for the first time and loved it. Had his first hamburger on a bun of the grill in over 2 years and ate the who sandwich. ( I was more than trilled for him)

    Another I like to use is tortilla wraps. I like the ones that are the thinest. That way you do not need to smash them. You can put anything on them you want and the wraps are not like bread and become sticky when you try to eat and get caught in mouth and tongue. One that I like alot is peanut butter and banana. Spread peanut butter on shell, take a whole banana and lay on shell and roll up loosely. Then I flatter and heat in microwave for 25 approx. seconds. You can also cut up the banana and not have to smash or you can cut in 1/2" pieces and leave together like it is rolled up and then heat, eat with fork. I have share with many non survivors and they love this also.

    how did you do the the teeth removal and healing? I had two teeth removed do to infection in early May. The two are barely healed over yet today and am beginning to think they will not. another errr for us. Oh well.

    Your so right, I should have nothing to complain about. At least I can!

    John

    Elvis???
    John,

    I think you have a new nickname by eating those bannana and peanut butter sandwiches. We will now know you as Elvis (in my pic, that was my german shepard's name).

    There is actually a real cool place in St. Louis, one of the top restaurants, and one of their lunch specialities is exactly that and is on the menu as the Elvis Sam-ich.

    Greg
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Greg53 said:

    Elvis???
    John,

    I think you have a new nickname by eating those bannana and peanut butter sandwiches. We will now know you as Elvis (in my pic, that was my german shepard's name).

    There is actually a real cool place in St. Louis, one of the top restaurants, and one of their lunch specialities is exactly that and is on the menu as the Elvis Sam-ich.

    Greg

    Sweet
    I wonder if he actually enjoyed it or just a name.

    I have tried it by adding sunflower seeds.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Mom
    I use Stoppers 4 Dry mouth spray I get it on line at www.drugstor.com. works great for me.
  • abbimom
    abbimom Member Posts: 87 Member
    fisrpotpe said:

    Do not do any more
    I do not eat sandwiches because of the thickness and yes I did the same by smashing.

    Have you tried the sandwich thins? they are round about the size of bun, very thin. You can find them in the bead section of the store.

    We had a few friends over last night for small group. One of them is also a 2 year survivor of head and neck cancer, he tried it for the first time and loved it. Had his first hamburger on a bun of the grill in over 2 years and ate the who sandwich. ( I was more than trilled for him)

    Another I like to use is tortilla wraps. I like the ones that are the thinest. That way you do not need to smash them. You can put anything on them you want and the wraps are not like bread and become sticky when you try to eat and get caught in mouth and tongue. One that I like alot is peanut butter and banana. Spread peanut butter on shell, take a whole banana and lay on shell and roll up loosely. Then I flatter and heat in microwave for 25 approx. seconds. You can also cut up the banana and not have to smash or you can cut in 1/2" pieces and leave together like it is rolled up and then heat, eat with fork. I have share with many non survivors and they love this also.

    how did you do the the teeth removal and healing? I had two teeth removed do to infection in early May. The two are barely healed over yet today and am beginning to think they will not. another errr for us. Oh well.

    Your so right, I should have nothing to complain about. At least I can!

    John

    right now not eating
    right now I'm not eating because I have some sort of fungus in my throat and I recently had my throat dilated so I can't swallow much. As for the teeth the dentist had me do oxygen treatments before and after the removal to help with healing and it did.
    And you can complain all you want I think we all deserve that right.

    Linda
  • abbimom
    abbimom Member Posts: 87 Member
    Hondo said:

    Hi Mom
    I use Stoppers 4 Dry mouth spray I get it on line at www.drugstor.com. works great for me.

    thanks
    I will try it out. thanks I always love hearing new ideas!
  • Lena Rose
    Lena Rose Member Posts: 73
    Fire34 said:

    Dry Mouth
    My med onc just prescribed salagen. I have just started it and haven't taken enough to let everyone know how it works. Has anyone else used it?
    Stoppers4 works a little for me, not as good as it does for Hondo though, but it helps me get thru the night. I still have a little glass of water on the night stand and that seems to be as good as anything.
    Wishes & Prayers
    Dave

    Salagen
    My husband was hit with some heavy rads for BOT SCC. He has been taking salagen (pilocarpine) 3x a day for about a month now and it does seem to help with his saliva function. He isn't spraying his mouth constantly during the day. He saw his ENT yesterday (3 months post-treatment) and he was quite impressed with how some of his salivary glands are healing and producing.
  • uvm1978
    uvm1978 Member Posts: 33
    abbimom said:

    thanks
    I will try it out. thanks I always love hearing new ideas!

    Stoppers
    I'll be starting radiation in a week or two and just ordered it too. Thanks for all the suggestions.
  • Hondo
    Hondo Member Posts: 6,636 Member
    uvm1978 said:

    Stoppers
    I'll be starting radiation in a week or two and just ordered it too. Thanks for all the suggestions.

    Hi uvm
    All the best to you when you start your treatment, let us know how you are doing

    Take care
    Hondo
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    uvm1978 said:

    Stoppers
    I'll be starting radiation in a week or two and just ordered it too. Thanks for all the suggestions.

    great option uvm1978
    I so like it when those going to start treatments visit this and many other forums for head and neck cancer. When I had mine in Jan 1996 there was very little information, i do not recall any support from anywhere except nurses, family and friends. I am impressed that you are reading and prepping to use some of the history so many have used.

    What is amazing is when I started mine they have been doing the radiation and chemo together for a couple years only. Now they are doing pretty much the same except for some better chemo's and better equipment for radiation that pin points it many times better.

    Good luck to us and keep reaching out to all those here that want to help.

    John
  • staceya
    staceya Member Posts: 720
    uvm1978 said:

    Stoppers
    I'll be starting radiation in a week or two and just ordered it too. Thanks for all the suggestions.

    Dear UMV,
    Are you taking

    Dear UMV,
    Are you taking Amifostine? (Below info from wiki, which you probably know, but just in case you didn't...Check in with your doctor. I cannot confirm, but believe it has really helped with protection of saliva, I seem to have about 80-90% of pre radiation saliva.
    Stacey

    a cytoprotective adjuvant used in cancer chemotherapy involving DNA-binding chemotherapeutic agents. Also commonly known as WR-1065 in its active form. It is marketed by MedImmune under the trade name Ethyol.

    Amifostine is used therapeutically to reduce the incidence of neutropenia-related fever and infection induced by DNA-binding chemotherapeutic agents including alkylating agents (e.g. cyclophosphamide) and platinum-containing agents (e.g. cisplatin). It is also used to decrease the cumulative nephrotoxicity associated with platinum-containing agents. Amifostine is also indicated to reduce the incidence of xerostomia in patients undergoing radiotherapy for head and neck cancer.