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How do I produce more saliva?

byzas
Posts: 9
Joined: May 2009

Good Morning everyone,
I haven't been here for a while.
I had tonsil cancer, stage 3, in January 07 and I'm doing well. I had 39 treatments of radiation, one cisplatin and 7 erbitux.
I know the dryness in my mouth has improved very slowly since the end of my treatment. I know on this discussion board we are all at different stages so I would like to know if anyone has discovered a way to produce more saliva?
I have asked my doctors and I am aware of sprays, gels and mouthwashes, so I'm thinking of foods or vitamins or treatments out there that I may not know yet. Thanks.
Wishing the best for everyone, Linda

Bonj
Posts: 17
Joined: Aug 2009

Linda,

My husband was given a medication to help produce more saliva. It worked well for him. He hasn't taken it in a while but I'll see if I can remember what it was.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

At the caregiver's area, I noted that a nurse proposed the use of Salagen or Evoxac. I asked the below question, but there was no response. May be you can check with your doctor for your use.

"....I was very interested in Nurse Creager's response concerning Salagen and Evoxac. I have a question for her. I have serious saliva problems based on radiation treatment over eleven years ago. Since that much time has lapsed, will It still help my saliva problems?"

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

You can try lozenges, mints, suckers, etc. Normally anything that is sitting in your mouth that needs saliva it might help stimulate your salivary glands.

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

I have used both Salagen & Evoxac and did not find either one worked very well for me, but none of us are alike, what works on one may not work at all for someone else.

I have found that mouth sprayer’s work best for me, especially at night when trying to get a good nights sleep. I can go almost 6 to 8 hours with out waking up for the need of water.

The one that works best for me is Stoppers4 Dry Mouth Spray and I get it on line at http://www.drugstore.com/

Wish you all well in finding what works best for you.

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I am 2 1/5 years out of treatments. I went for my follow up with my rad doc a few weeks ago and asked him if my salivary glands would eventually get better. I had left tonsil cancer. He showed me the graph where the radiation was targeted. The graph shows that my left salivary glands got direct hits and therefore would most likely never recover. He then showed me where the right salivary glands were not directly hit with the radiation and told me that the right ones should recover some. He doesn't think they will recover fully, but feels that they still might improve some more over time, even though it has been more than two years since treatments. I was told that your saliva has two parts to it....a viscous (thick) part and a watery part. My rad doc said that the radiation usually kills the production of the watery part, but they don't know why. That's why what little saliva we H/N cancer patients have left, if any, is very thick and ropey. I keep hoping things will get better but, realistically, they most likely will not so I will just have to adapt to my "new normal". The lack of saliva and limitations on eating has been one of the hardest things for me to accept and get used to. I have used both the Salagen and the Evoxac but noticed very little improvement. This is just my personal experience.

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

I too had left tonsil cancer. Diagnosed 1st week of February, 2009. Completed 7 rounds of Chemo (Cisplatnin...taxatera....and 5fu) and 35 STRAIGHT days of radiation therapy. They pretty much messed me up, but thank goodness for the peg tube. Finished treatment June 8th of this year. Just now learning to swallow (soups..soft foods...liquids). Have lots of "tingling" in my fingers and mostly my feet which was caused by Chemo and will evidentually go away (THEY SAY...I hope). Guess my saliva glands on the left side are gone too. I've been using to some success, Caphosol. It's two plastic vials of a clear, tasteless liquid that you mix together and swish in your mouth for one minute. Like I say, it works okay for me, but I'm always willing to try something else. My tumor is totally gone (for now)according to my pet-scan of last week. Still lots of ringing in my left ear and some balance problems, but by golly I made it.

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Glad to hear you are hanging in there, when I finish Radiation & Chemo I too could not walk straight, I would hit the side of the doors trying to walk through it, needless to say how much it hurt. I starting using a product called Ambrotose and with in a few days was walking better and not running into the walls.

After Radiation and Chemo everyone’s body reacts differently so this might or might not work for you, but it was a blessing to me, I am back at work again as I work for a large Diving company doing maintenance.

If you are interested I think the web site is www.mannatech.com

Take care God bless.

Tootsie47
Posts: 8
Joined: Oct 2009

Hi Hondo, I read your comment under How do I produce more saliva. In what areas do you think the Ambrotose helped you. My husband is 2 1/2 months out of treatment Head and Neck SCC, Occult Primary. His saliva is nonexistent and taste horrible so having extreme difficulties finding things to eat. Thank goodness for old "PEG." We have heard about Ambrotose from a friend and are mulling getting it so really curious about your experience. They use it for arthritis. Can't say my husband had the walking into walls problem--except when talking Ambien. That stuff is scary!

Still lots of phlegm and trouble sleeping at night due to the dry mouth.

Thanks for any help you can give.

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

Hi Hondo, Appreciate all your considerate posts on this forum. I have ordered a couple of bottles of the Stoppers4 to arrive in Oz about when I get there for the Xmas Vacation. The shipping was a knockout but will be well worth it if it works as I am really starting suffer from the dry mouth. I am willing to try most things. I will also be doing Acupuncture when I get organized as a busy week now with Drs Friday in HK then probably PEG removal Monday. As I live in China it makes logistics to the Docs a bit arduous with having to pass through immigration and rely on ferries/buses to get there. Anyway i will report back on how the Stoppers4 goes and also the acupuncture. Shame you can't find an acupuncturist in your neck of the woods.

Cheers for now
Scambuster

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Hope the Stoppers4 works as well for you as it does for me, also please let me know how the acupuncture works for you and what type of acupuncture you will be taking. I have a trip to Singapore coming up and that might be the right time to get the acupuncture done.

Take care
Hondo

hisnibs
Posts: 5
Joined: Oct 2009

I started Acupuncture after reading the OCF's forum (Oral Cancer Foundation)I have only had three or 4 sessions. The doctor said we could try 6 sessions 2 times a week and 4-6 more weekly after that. I have minimal optimism for this but had to try it after 33 or 35 rad TXs.

I hope to report back with positive news, but survivors in the OCF forum thought acupuncture yeilded best results over medication. How meesed up are the saliva glands? Different for everyone I suspect.

seenanN
Posts: 24
Joined: Oct 2009

I used Salagen for more than 2 years and Onc told me to stop since it did not help. I have tried other moisturizers such as Oasis, Oral balance, OralMoist, Salivart, 6 sessions (12 times) of acupuncture and they did not work for me either. I am stage 4 NPC so all my saliva glands I guess are already gone. In the last 3 years I just cope with the dryness without using these med. Like Hondo said above these were not working for me but it might work for you. You need to try them.

Best wishes,

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Let me know how you do with the Acupuncture, I have been looking at this for opening the Jaw bone but can’t find anyone in Louisiana that can do it.

hisnibs
Posts: 5
Joined: Oct 2009

Accupuncture did not have major success. My saliva is better but just noticeably and I am not sure Accupuncture is responsible for it. My last treament was on the 7th of Nov 2011.

What was interesting about accupuncture was how the thick saliva glands stopped overproducing during my treatments. I expected the high production to stop but it was like over a couple of days that it became what I consider for normal. Can't say it was accupuncture but it seemed to be and gone quicker than I would expect from normal healing.

My mouth does have saliva as long as I do not breath through my mouth or talk too long. It is not enough to help eating... not much anyway.

It is not enough to keep me from waking up 2-3 times a night since my mouth tends to open when I sleep.

mermaid52
Posts: 9
Joined: Oct 2009

My husband is a survivor of H&N stage IV. we are ready to celebrate 7 years in remission. He has dry mouth and excessive post nasal drip.
I found several homeopathics that have helped with making saliva.
You can order them from www. affordable Natural Supplements.com

for increasing saliva we use Nux Moschata 200c

for post nasal drip we use Hydrastis Canadensis 30c

My husband could not speak after Radiation treatment so I took him to an accupuncturist from Korea who got his voice back after 40 min
of treatment. It was a much more aggressive treatment than Chinese accupuncture. He also treated him a 2nd and 3rd time to help stimulate saliva ... this worked...it was amazing. I could actually really kiss my husband again.

It is a journey of discoveries....I do recommend that ALL cancer patients stay off sugar. Cancer feeds on sugar. If you do not believe me see how the PET scans work.

Take fish oil and flax oil every day. Four medical doctors my husband went to advised this course of action to limit the spread of cancer.
Take 200mcg of Selenium every day ...20mg zinc ...and a GOOD multi vitamin&mineral...along with green tea extract.
God bless everyone ...remember there are guardian angels to guide you through this difficult time ...do not give up.

mermaid52
Posts: 9
Joined: Oct 2009

My husband is a survivor of H&N stage IV. we are ready to celebrate 7 years in remission. He has dry mouth and excessive post nasal drip.
I found several homeopathics that have helped with making saliva.
You can order them from www. affordable Natural Supplements.com

for increasing saliva we use Nux Moschata 200c

for post nasal drip we use Hydrastis Canadensis 30c

My husband could not speak after Radiation treatment so I took him to an accupuncturist from Korea who got his voice back after 40 min
of treatment. It was a much more aggressive treatment than Chinese accupuncture. He also treated him a 2nd and 3rd time to help stimulate saliva ... this worked...it was amazing. I could actually really kiss my husband again.

It is a journey of discoveries....I do recommend that ALL cancer patients stay off sugar. Cancer feeds on sugar. If you do not believe me see how the PET scans work.

Take fish oil and flax oil every day. Four medical doctors my husband went to advised this course of action to limit the spread of cancer.
Take 200mcg of Selenium every day ...20mg zinc ...and a GOOD multi vitamin&mineral...along with green tea extract.
God bless everyone ...remember there are guardian angels to guide you through this difficult time ...do not give up.

mermaid52
Posts: 9
Joined: Oct 2009

My husband is a survivor of H&N stage IV. we are ready to celebrate 7 years in remission. He has dry mouth and excessive post nasal drip.
I found several homeopathics that have helped with making saliva.
You can order them from www. affordable Natural Supplements.com

for increasing saliva we use Nux Moschata 200c

for post nasal drip we use Hydrastis Canadensis 30c

My husband could not speak after Radiation treatment so I took him to an accupuncturist from Korea who got his voice back after 40 min
of treatment. It was a much more aggressive treatment than Chinese accupuncture. He also treated him a 2nd and 3rd time to help stimulate saliva ... this worked...it was amazing. I could actually really kiss my husband again.

It is a journey of discoveries....I do recommend that ALL cancer patients stay off sugar. Cancer feeds on sugar. If you do not believe me see how the PET scans work.

Take fish oil and flax oil every day. Four medical doctors my husband went to advised this course of action to limit the spread of cancer.
Take 200mcg of Selenium every day ...20mg zinc ...and a GOOD multi vitamin&mineral...along with green tea extract.
God bless everyone ...remember there are guardian angels to guide you through this difficult time ...do not give up.

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Glad to see someone agrees with me about the process sugar thing, I had the same question doing a PET scan, I could not believe it what he told me they use radiated sugar water to help them see where the cancer is, because the Cancer fees on the sugar.

Also John Hopkins just did a report on how process sugar and cancer work together. Normal sugar we get in the things God has made is good for the body, but the process stuff is a killer.

I would like to know where you did your acupuncture, I live in Louisiana and there is no one here that I trust to do that.

Thanks

hisnibs
Posts: 5
Joined: Oct 2009

Never new it was available. As reported above, I got minimal results from chinese accupuncture. My doctor was confident that it would get better but at the same time didn't fkinch when I said there was little to no improvement. I still have some faith in Accupucture working for some. So if I can locate a korean practice I may have to try it.

fsdman
Posts: 51
Joined: Jul 2009

My radiologist showed me a study of accupuncture for radiation induced xerostomia-dry mouth. I had to find someone who would follow the proven protocol and knew about the specific treatment. I did and he researched the pin positions. After a few weeks I noticed MAJOR improvement in taste buds ,my tounge stopped burning after 5 weeks and generally my mouth problems got much better.Saliva increased with sugar free lozenges during treat ment.I did 13 weeks and I am very much better in many ways.Pin position is important .2 in the ear and 1 in each forefinger.I got more out of this than I expected.

naturenaw
Posts: 26
Joined: May 2009

I am 4 years post-treatment. I get saliva with Orbit sweet-mint chewing gum or mositen the mouth with water. I have tried Saligen and Evoxac (prescriptions) and didn't get much improvement from them although I know a gentleman that has had a great improvement with them. I also tried all the rinses and gels and like the Biotene products the best. Water truly is the main lubricant for my throat. I have found great improvement and soothing relief to my throat with liquid fish oil. It was quite by accident that I discovered this would help me.... I got it for my young son to take so got Carlson's lemon (or orange) flavored liquid fish oil (a recommendation from his pediatrician) and he absolutely hated it and said it tastes horrible. I don't taste a lot of things with my taste buds having been ruined from the radiation, so I tried it and found it to be very soothing. It works great for me - just a teaspoon. It doesn't promote saliva, just soothes the dryness. One thing my doctor also had me try was a very tart orange vitamin C pill (thinking the citrus would stimulate the salivary glands). But this didn't work for me. Worth a try though. Good luck!

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

I too did not have much luck with the Saligan or Evoxac, of course I had radiation twice to the same area and what the first time did not destroy the second time did. I do find help using Stoppers4 mouth spray, it cost about 5.95 so you can’t go wrong trying it once, I get it at www.drugstore.com, works great for me at night so I can sleep. Also I have been experimenting using Hydrogen Peroxide 3% as a mouth wash; I cut to about 25% Peroxide to 75% water; what ever you do don’t swallow it. I am not sure if it is helping or not but I sure feel like my saliva if better now then before, only been doing it for a week.

Take care

drevman
Posts: 2
Joined: Oct 2009

Hi Dr. Drevyanko (A head and neck cancer victim)

Hopefully you had IMRT or similar treatments so that some of your salivary galnds were spared. Gum will make your remaining salivary glands work harder, not too hard, they don't burn out that easily. Choose a gum that is pleasant to you. This is the hard part. Now that you have been irradiated if you choose the wrong gum, those that are advertised as intense, you will be drooling all of the time!! Pick something that would be considered a classic. Not intense but flavored. PS I gave this advice to one of the internists who happened to get tonsilar cancer after I did and it worked for him.

Dr. Drevyanko

naturenaw
Posts: 26
Joined: May 2009

Husband is a dentist and recommends biotene gum or Orbit.
I like Orbit Sweet mint flavor the best. (Sweet mint doesn't burn like some of the other mints can.)
It can get some moisture going too.

Norton
Posts: 8
Joined: Nov 2009

I'm about to start rad and maybe chemo. I have spuamous cell cancer in the lymph node. I had surgery last week.
When they do rad do your salivary glands always get wiped out ?

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Hi Norton,

Not in all cases. It all depends where they have to aim the beams and if your salivary glands are in the path.

Dazey
Posts: 86
Joined: Sep 2009

right - I am four weeks out from radiation treatment - no chemo- I would rate my saliva, taste and swallowing at about an 8 out of ten. Still inflamed, lots of mucous, but assured by my doctor today that I am healing, have patience and the CAT scan from last week is "perfectly normal" Stay positive! Dazey

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

HI Norton,

I would ask your radiotherapy team who will make your mask and set the beams etc to PLEASE SAVE YOUR SALIVARY GLANDS !

They are usually professional types but it wouldn't hurt to emphasize your concern so they take extra care.

All the best with yr treatment.

Craig - Scambuster

Johnlb09
Posts: 4
Joined: Nov 2009

Hi

I also had squamous cell carcinoma - started in my left tonsil (interesting that most seem to have started here on this chat page) and then also ended up in my lymph node - in my case it was not encapsulated just in the node but also was in the surrounding area - so the radiation destroyed my left saliva gland. Now they were also concerned that it may spread to my right node so they also destroyed the saliva gland on my right side as well. They use conventional ration therapy (CRT) which is more spread out. if it was more encapsulated in the node then they have been able to use Intensely modulated Radiation Therapy (IMRT). SO it really depend on your situation - you should talk with your radiation therapist. I ended up with 37 radiation treatments (daily) and three high dose chemos. I handled it fairly well as I was relatively young (45) and physically fit. I lost 20 pounds during treatment. Then after treatment and the last chemo, I couldn't keep anything down (even water) and lost another 25 pounds in three weeks. I never needed a feeding tube and have since gained back about 10-15 pounds from the 45 I lost. I work out regularily and that helps. This happened from May to June this year. then last month they did a neck dissection to remove any remaining tissue from the cancer (part of my jugular vein, some muscle tissue and a bunch of nodes). The operation went well and except for a bit of swelling I am feeling pretty good. Through it all I never lost my appetite. I find I am always hungry now, although I am at a healthier weight. I have a little saliva from under my chin area - aside from that I am pretty dry - drink a lot of water when I eat and try to sleep with my mouth closed. I take salogen pills, I don't know if they really work much but they do make me sweat.

At the end of the day though, the alternative was not good (being death), so all in all, although I wish my mouth wasn't this dry, I am happy to be alive and cancer (I am assuming) free. I hope to live another 40-50 years.

John

naturenaw
Posts: 26
Joined: May 2009

As far as possibly saving some salivary gland function.... Look into IMRT (Intensity Modulated Radiation) instead of standard radiation. It can help save parotid glands, and aid in less dry mouth after this is all done. Although if you have some cancer in the parotid gland, they may just have to treat it harsher anyway. But it's worth asking about. If it's not available where you live (it wasn't available in our town but was available an hour away), ask where is the closest location that does have it.

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