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any new treatments for dry mouth

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

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

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

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?

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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's picture
abbimom
Posts: 81
Joined: Sep 2010

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's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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's picture
Greg53
Posts: 830
Joined: Apr 2010

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's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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

I have tried it by adding sunflower seeds.

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

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

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

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's picture
abbimom
Posts: 81
Joined: Sep 2010

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

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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's picture
hawk711
Posts: 525
Joined: Jan 2010

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
Posts: 351
Joined: Feb 2010

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

Lena Rose
Posts: 73
Joined: Apr 2010

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.

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

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

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

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

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

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

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

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

Take care
Hondo

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

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's picture
staceya
Posts: 701
Joined: Jan 2010

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.

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

Interesting article, I've been very curious about acupuncture...this may help me to give it a go.

Best to all,
Chuck.

http://www.sciencedaily.com/releases/2009/04/090420151232.htm

timreichhart
Posts: 195
Joined: Aug 2010

I am just wondering when did you start getting dry mouth? Because I am about 2 months done with all cancer treatments and now I am starting to get dry mouth. Radiation doctor told me while I was getting radiation treatments he was going to try to protect my saliva glands but I think he lied to me about that. Is there anything I can lower complete dry mouth? because I am drinking alots of water and taking 5mg of salagen x 3 times a day.

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

Timreichhart
Just another unknown for both the doctors and you. Small reminder that the day your treatments stopped was not the day the radiation stopped working. they say it takes approx. 6-8 weeks after last treatment stop hurting the good and bad things.

I know for me I go thru times durning the year that weeks go by and I am very dry and then go weeks where I do really well. After 14 plus years there does not appear to me anything that effects it to going dry. At least nothing I can control. I do know one time a year and I call it harvest time that I always find a good amount of time to fight the dryness.

Salagen did not work for me, i tried it several time without help. It does not work for everyone. One success i found after many years of searching and trying is called Stoppers4. This is the only place i have found to get it since they stopped having it on the shelf at Walgreens a years ago. http://www.jocottbrands.com/cart.php?m=product_detail&p=85&c

I and many others use it when needed. Espy. at bed time. There is no limit on how often you can use. Be aware the first couple times may not be friendly but it does become friendly quickly.

Bioteen makes one that is on the counter at Walgreens but does not compare at all to Stopper4

Good luck
John

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