Has anyone found a way to get the salivary gland working again? The chronic drymouth is decaying my teeth. I would really love to have a moist mouth again. Biotene toothpaste and wash don't seem to help. Oasis drymouth spray is temporary but it sometimes burns my mouth (as does gum). I had aggressive radiation in my mouth almost 1 year ago but certain things still burn. I'd appreciate your input.
There are some drugs that may help. Salagen is an older example and Evoxac has come on the Market more recently. I am on Evoxac and it seems to work meaning that if I forget to take it I notice it. On occasion it may give you a most impressive night sweat (= wet bed)
Best
Markus
Kristy,
I use a product called "Caphosol". (
www.caphosol.com) At least I can get 4 or more hours of sleep without having to wake up and get my tongue unstuck from the roof of my mouth. I still drink a lot of water during the day and pee a lot but don't take the caphosol during the day. It does not burn at all but it is not cheap. I finished chemo/rad 9/17/07 and have hot spots on my tongue where almost everything burns also. Hope this helps.
Bruce (SCC Base of the tongue, Stage 3)
Darn good qustion. I have to use my feet to pry my tongue from the roof of my mouth...not a pretty picture.
One thing I miss is not being able to put my tongue out and lick my lips,,LOL.. gotta do it with my finger and it's embarassing in public..But I'll take it. Look like a kid with a sucker.
I have found that during "awake" hours the Biotene chewing gum does a good job. Anytime I am meeting and talking to a stranger I offer apology and explain the gum. Depending on the exact situation, I will sometimes just my water bottle handy instead of the Biotene.
The "fun" season is now here on us in terms of licking Christmas or other Holiday card envelopes in prep for mailing!
Bill D.
I finished treatments July 31st, and dry mouth is an issue now. I use the Biotene products, but they offer minimal help and pretty temporary. I am on pilocarpine (Salagen generic), and it helps, but just a little. If you take a full dose (10 mg 3x/day), you will sweat a lot at night. I actually went for acupuncture yesterday, first treatment, and saw some relief during treatment, but it didn't last. I know you need several to see the effect, so I will go to at least 3 or 4 more to see if it helps. I keep water close by at all times... I also had amifostine injections during radiation, so I hope eventually saliva comes back, they said it could take 9 months to a year...
Hope this helps a little.
Hi Kristy,
I am not here to discourage you but only to share with you my dry mouth experience. Treatment was over six years ago and all along these years, there is no sign of improvement in my mouth dryness.It certainly is worse than I felt a few years ago. I rely heavily on sugar free candies and gums to moisten my mouth so that I can speak clearly. A bottle of water is a must when I go out but I need not drink it often because one small candy can stay in my mouth for over an hour.I get used to it already and have deleted my hope of getting my saliva back. I haven't relied on any medical help or particular dental products. I learn to live with this frustrating situation and so far, it has not affected my social life, my daily activities. So far so good. Dental care is very important and I brush teeth after every meal and even a bite of cookie. I am happy to still have 28 teeth with me ( my wisdom has already left me a long time ago! grin)
While everyone's experience varies and cancer treatment has improved a lot, saliva may come back and your mouth dryness may be easier to cope with. Don't worry.
Karen
I had my 15 month post-Tx checkup with my ENT a couple of weeks ago at which time I discussed dry mouth with her. I asked her about a prescription of Salagen or Evoxac and she advised that now, 15 months post-Tx, my saliva production was probably as good as it will ever be. She further stated that her patients have given her feedback to indicate better results from Evoxac than Salagen and she went ahead and prescribed a 30 day supply for me to try. I have been taking now for the 2 weeks and cannot tell any difference. Overall, she was not impressed by results reported by patients taking either of the scripts.
Bill Dozier
Five years out, the dry mouth has not improved, but I have not let it affect my life in any negative way. The water bottle is a permanent part of my repertoire...as a lawyer I carry one to every court...and occasionally have to explain to a judge or bailiff in certain stupidly strict courts, that I have it for medical reasons. When I am playing golf, I carry it to the green as I get out of the cart, just in case I need a sip while waitng it for the rest of the group to chip or putt.
Certainly I would have liked for it to have improved, but apparently it will not. I used to use the Biotene Oral Jel at night when the dry mouth wakes me up...but now I seem to be able to get through the night just as well with just rinsing with water when I inevitably wake up at night. Probably the worst part is that food tends to get stuck in my teeth much more than before, but that can be remedied with a little mouth cleaning after a meal. It causes me to go to the bathroom more often than most men, but drinking water is supposed to be good for health anyway.
Yes, the dry mouth is worse than it sounded when hearing the Doctor's forecast before radiation, but in the grand scheme of things, it ain't all that bad.
Danny G.
I am about a 1 1/2 years post radiation treatment with issues of dry mouth as well. I haven't tried acupuncture yet but I am considering it.
I rely on water and sugar free gum during the day. I can sleep through the night but in the morning my mouth feels awful! And yes, my speech sometime s becomes affected due to the dry mouth.
I have all my teeth but one thing I really have to do is go to the dentist for teeth cleaning every 3 months. The typical 6 months is just too long. too much plaque builds up from my dry mouth even though I am more diligent now about flossing than ever!!
I also have burning sensations in my mouth. It happens when I drink any alcohol (so I don't), pepper or hot spices and minty stuff. I can't use regular toothpaste. Biotene is all I can handle.
I don't mean to be a downer but to let you know what my experience has been like. I also tried Biotene products. They are good- but everything seems temporary- unfortunately. Overall, I've adjusted and hope that one day, it will be much better.
It has been four years and ten months since my surgery. My jaw bone was replaced with a portion of my left leg bone. Afterwards I had radiation treatments. Dry mouth is a problem at night and has been since I began radiation treatments. I have tried biotene products, warm salt water, baking soda and water,and Colgates peroxyl. The Peroxly works best if I use it before bedtime and in the morning after getting up. I have found it is most helpful in getting rid of the thick mucous that you get during the night. Now for the amazing experience I had. I am from Arizona and we have a very low humidity climate. This September and early part of October I spend in Northwest Arkansas. I did nothing different than the routine I do in Arizona. Ate the same type of foods etc. In about three weeks I noticed a big change in the feeling in my mouth. It didn't burn nor did my tongue tingle. Even taste became better. The only thing different that I can figure helped me was the high humidity. I was good until I was back in Arizona for about ten days and the ole symptums returned. Anyone else noticed any change with the higher humidity?
I am 5 months out of treatment. I used acupuncture during treatment and have a few sessions since treatment ended. I had to chew gum alot at first, but now I am surprised that my mouth is no longer as dry as it was 2 months ago, and I no longer chew gum. I find that drinking water with lime or lemon kind of 'wakes' up saliva.
My mother is about to complete 5 months post Radiation Therapy and has the same problems of extemely dry mouth, occasional mouth sores, thrush, complete lack of appetite..
I'd been researching on this forum for the specific after-effects and have ended up presuming that saliva returns latest. I'm not sure but looks like that appetite problems also relate to lack of saliva. I went to get my mother examined yesterday and the physician was quite articulate in admitting that the saliva might need an year to return but from the posts I read today, I suspect that 1 year is too less a time to expect (sigh!).
She has lost a lot of weight waiting for appetite to come back and she feels pukish after every (a little heavy) meal... honestly speaking, we're expecting the after-effects to subside within 2-3 months post RT but seems like that my mother needs to act a little more brave and be lesser bothered about the after-effects.
Arvind - Perhaps eating smaller meals and more often would help relieve the "pukish feeling". Always having water handy helped my son, too. He is almost one year post treatment now and still has to have water handy whenever he eats a meal and his meals usually include some kind of gravy or sauce to help food go down. The worst time for him were the 2-3 weeks post treatment and it was really difficult to get him to eat. He said that his throat felt like knives were sticking into it whenever he tried to swallow anything. I remember the day he actually managed to swallow 3 noodles with his chicken broth, it was a big celebration! It is difficult to have an appetite with sores in your mouth and throat or when you can't taste but it is important to take in some nutrition so that you don't lose too much weight or get dehydrated. My son did not have a PEG (feeding) tube but came really close too having to get one. Maybe you could ask your doctor about this if you feel she has lost too much weight. There are many good suggestions above so keep in touch. Things do get better!
See my post in
Adjunctive Therapy .
Another option (recommended by my ENT), if you have
any remaining salivary function is use of the OTC drug, Mucinex 1200. It works by thinning secretions, and can actually improve mouth moisture. NOTE: This is a large pill, so if you have swallow problems, it may not be for you.
Thanks for all your input. I've tried the acupuncture but did't notice any change. Don't want to try any meds that create night sweats. Been there, done that with menopause.I do have to say it is not as bad as it was in November; however, I do need water with me at all times. I can chew gum now (which I couldn't before, too spicy) and that helps when I don't have "hands" (i.e. walking both dogs). I read a story in People about children that can't eat anything because food can kill them and decided right then to get off my "pity pot". Just had plastic surgery to remove my "turkey waddle" and I can't wait to heal and get out there and show off, water bottle in hand!
Kristy,,
Welcome to the boards.
To add your signature...go to top of page..tab "MY STUFF" then MY PROFILE...scroll down and you will see a box where you can add that info.
Congrats on gettin rid of that turkey thing....now, get out there!
Deb
Hi Kristy,
I am given to understand by my oncology dentist that it is not the quantity of saliva produced post-radiation that is the problem. Rather, the chemistry of the saliva produced is such that it no longer provides the protective function that it used to - hence the increased risk of cavities post-radiation treatment.
I asked my dentist many times whether I could stop my twice daily flouride treatments if my saliva glands produced enough saliva, and got a consistent "no" for an answer.
There is another thread on this subject, and hence different opinions on how much flouride to use, etc., but this is what I've been told.
Best wishes,
Chris
Kristy, For what it's worth, I take the max dose of salagen and I have never had night sweats. I was very worried about that potential side effect when I first started it(not to mention one of the other side effects which is blurred vision--I couldn't do my job if my vision was blurred, let alone drive to my job) but salagen has next to no side effects for me and it does improve the amount of saliva I have. It's worth trying it before assuming that you'll suffer the side effects.
Nelie
Hi all,
Yes there is another thread on fluoride. I decided to copy my post to this thread so that others can read it without trying to find it.
Hi all,
Gary makes a great point when talking about dry mouth and the use of fluoride. He has posted in great detail about his dental journey in the past and what he has experienced, and he has experienced it all, unfortunatly for him. As usual he is accurate and timely in his advice. I offer the following information to provide assistance to any who may require it.
When chemo/radiation impair the function of salivary glands the bodies natural protective mechanism for our teeth becomes impaired. The best way to protect your teeth when this hapens is with the regular use of topical fluoride. Fluoride application will also reduce tooth sensitivity caused by gum recession and dry mouth as well as strengthen the interface between fillings and enamel. Some fluoride releasing dental filling materials will as well be recharged with fluoride upon topical application these are commonly known as Glass Ionomers.
There are many choices when choosing a topical fluoride. Rinses, gels and foams. All are proven to have no significant differences when used properly. As Gary states, you should choose a pH neutral fluoride. It won't give you the burn feeling and as well, it will not affect adversly any porcelain or composite (bonding) that is present in your mouth.
Custom fabricated trays are a great idea. They fit well, hold the fluoride against the teeth and will cause you to use less fluoride. Fluoride can be toxic if ingested in some individuals if enough is consumed (mind you it takes a lot). It can also cause stomach and GI problems. Make sure you are using the appropriate concentration. It is recommended, and most manufacturers of topical fluoride products follow these guidlines, that for daily use a concentration of 0.05 neutral sodium fluoride be used. There are many different brands Oral B, Butler, NuFoam to name a few and most pharmacies in North America carry them or can order them for you. If not, your dentist can order it for you.
Weekly application should be a concentration of 0.25 neutral sodium fluoride. Your dentist should be your partner in this endeavor so that you have someone to guide you and answer any questions or address any problems that may occur.
Gary, the foam is a great product. Foam fluoride bottels should be stored at room temperature with the top of the cannister on the counter top or upside down. This will ensure that you will not waste the fluoride and that the "gas" that propels it out of the cannister is always pushing the fluoride out.
Fluoride foams basically have the same appearance of hair mousse. When utilizing foam products less is more. Fluoride is diffusive and will spread through your mouth or tray with the help of saliva even if you don't have a lot. A note of caution that should be mentioned when foams are being considered is that some manufactures use egg white protein to produce the foam. Anyone who is allergic to eggs should read the label carefully or choose a gel or rinse.
Discuss the protocols with your dentist and be sure to maintain your regular cleanings and exams and you may also want to increase the frequency of these visits even if there is an out of pocket expense.
Cheers,
Mike
Hope this helps.
Mike
I am presently using the flouride trays. I've lost 4 teeth (now have implants) and I have so far had 3 teeth crowned and need 4 more. I, too, switch back and forth every 3 months between the dentist and periodontist but the decay came up all of sudden and all at once. Everyone was looking at my bones, then all of a sudden they noticed the decaying. I read Bob Wilson's Adjunctive Therapy but need to find out what PO bid is to try his solution for drymouth.
KristyN,
"PO BID" is short form written on prescriptions it basically means; Orally Twice a day. It can also be written as "PO Q12h" which means taken orally every twelve hours.
I hope this helps.
Cheers,
Mike
I'm 18 mos. from radiation (entire oral cavity - 66gy) - very dry, trismus - on evoxac, trental, nystatin (rinse w/biotene)- need to drink water all the time especialy if I eat anything - need to wash down food also to stop pain. I think drymouth is also the culprit with mouth tissue irritation - teeth with no saliva rough up tissue and then causes pain.
Please tell me how logically PO BID = Orally twice a day?
Definition of p.o.
p.o.: Abbreviation meaning by mouth, orally (from the Latin "per os", by mouth). One of a number of hallowed abbreviations of Latin terms that have traditionally been used in prescriptions.
Some others:
a.c. = before meals (from "ante cibum", before meals)
b.i.d. = twice a day (from "bis in die", twice a day)
gtt. = drops (from "guttae", drops)
p.c. = after meals (from "post cibum", after meals)
p.r.n. = when necessary (from "pro re nata", for an occasion that has arisen, as circumstances require, as needed)
q.d. = once a day (from "quaque die", once a day)
q.i.d. = four times a day (from "quater in die", 4 times a day)
q._h.: If a medicine is to be taken every so-many hours (from "quaque", every and the "h" indicating the number of hours)
hope this explains
love liz
Thanks, Liz. Still weird though. How about BM 2xD.
Mike,
I noticed you are a dentist in Canada. I've read that primarily coming out of Canada, the dentists there use vis-a-lite or blue light technique to detect early stage oral cancer. My dentist, ENT or RO do not use - do you? what are your thoughts particularly for someone who has gone through oral radiation treatments for scc?
Thanks
Jim04,
Dentists are trained in Canada and the U.S. to perform a standard oral cancer screening. This includes but is not limited too; extra and intra oral visual inspection preferrably with magnification, extra and intra oral palpation and proper documentation and a clinical description of any areas that vary from normal. A follow-up examination is recommended for abnormal tissues within 2-4 weeks. At the follow-up examination if abnormal areas or tissues are still present then further investigation is recommended whether it be another re-examination, biopsy and/or referral. The Vis-A-Lite and Blue Light techniques are techniques that can be used by practioners to aid in their examination. I use the Velscope. These additional procedures and techniques, no matter which one, are adjuncts to the normal inspection that should be done. They all have their pros and cons but, provide information to the clinician that is not available to the naked eye.
Jim the Velscope was developed in Canada and has recieved much hype as have other diagnostic tools for the early detection of oral abnormalities but, the standard of care as far as I am aware in Canada and the U.S. is a proper medical history, visual and manual inspection. These additional aids are helpful but are unfortunatly underutilized, in my opinion. Dentists who do not incoorporate these additional procedures in their practice are not underservicing their patients as long as they are being diligent in their visual and manual inspections.
Brian has on several occasions posted about dental examinations and there is an extensive description for patients and dentists about examinations on this site. Unfortunatly many dentists do not perform regular comprehensive Oral Cancer screenings and examinations in their practices.
I hope this answers your question.
God Bless.
Mike
Kristy,
Here are a couple of links to some interesting solutions(albeit future)to dry mouth problems. Saliwell
http://www.saliwell.com/1_1.asp is a medical company that makes an implant type device that looks very interesting. The second link is a Google search for Dr. Bruce Baum.
http://www.nidcr.nih.gov/Research/ResearchResults/InterviewsOHR/TIS032007.htm He is, and has been actively researching gene therapy for salivary gland repair. His research seems most promising for head and neck cancer patients whose saliva glands have been damaged by radiation.
I too struggle with dry mouth and the associated dental ramifications caused by radiation, however, the Salogen has allowed me to eat almost anything, as well as return to work full time as an in home salesman. I'm approx 6 months post treatment myself.
Here are a few more links that may be of interest to all.
Regards,
Chris
http://scholar.google.com/scholar?q=%22author:B.+J.+author:Baum%22&hl=en&lr=&start=60&sa=N
http://www.webconferences.com/nihoba/731_Baum.pdf
A solution would be of great benefit to all of us.
This was very interesting-thanks for the info. This is Mary's biggest complaint-the constantly severe dry mouth. Mind you, she still plays raquetball with me-but occasionally we have to stop because her lips are stuck to her teeth!! This works for me because I usually need the breather. :~)
But, seriously, she says it is awful. And it is preventing her from advancing her diet.
Liz
Tell Mary that her dry mouth will likely get better over time than it is right now, mine did, but it probably won't improve to 100% per Tx.
Kristy,
could you elaborate more on how Salogen helps with dry mouth (and how it helps to keep pain down re: eating)?
Thanks
Gene therapy holds much more promise in all diseases than this simple appication, even in the survivability of oral cancers. Please check the OC in the news section of the web site for numerous articles we have been posting for more than a year on the NIDCR sponsored work in this area. There is one just from this last week even. Gene therapy, nano particles, and stem cells will likely spell the end of cancers as we know them, let alone salivary function.
You'll probably be carrying a bottle of water for the rest of your life. The Biotene wash seems to make sleeping better--mouth doesn't seem to get so dry w/ use of it each time my husband gets up during the night (due to so much water during the day for drymouth and for swallowing his food). It's been 4 years and this is still an issue; but he IS alive!
I don't agree that you'll be "carrying a bottle of water for the rest of your life!" I don't! Sure, my mouth is dry, I must use liquid to get food down and waking up with my tongue sticking to the roof of my mouth isn't fun, but I do manage to walk through life without being attached to a water bottle. I can even talk for 2-3 hours straight without water these days....and I'm not quite a year out from radiation. Don't forget that we are all individual and our healing is individual.
You are surer tough. I have to havw a bottle of water with me at all times. My mouth drys out in a matter of minutes and my tongue sticks to whatever it touches in my mouth. Be it my gums, the floor of my mouth or the roof of my mouth. I ran the weedeater yesterday for a couple of hours, and I needed 3 bottles of water to keep me going along with the biotene. We are all different and unique.
has anyone experienced declining saliva (and increasing trismus) after radiation (I'm nearly 2 years after full mouth radiation). most people indicate improvement further out from radiation.
My saliva had an initial period of no change, then some improvement, then a slight worsening. I attribute it to the fact that as time goes by, I have not necessarily kept up with the same level of water consumption as I did during treatment and immediately afterward, and drink more different things, including things that dry up saliva (coffee the primary offender). Same with food -- diet is more varied now, including things that dry out my mouth. I need to be more diligent on this.
I agree on the trismus --- while I probably do not have "trismus" per se, I do have considerable jaw tightness, which can become pretty good pain and spasm, especially when yawning. This has worsened, as has my neck/shoulder stiffness and discomfort.
Not fun, but beats the hell out of the alternative. I am going to start physical therapy for neck/shoulder, and I will just try not to yawn. ;-) Insofar as dry mouth is concerned, I have stepped up my Biotene, and need to actually take my Salagen as prescribed, not when I remember.
I'm not too far behind JeffL for with my surgeries and all. My mouth is still very dry and it seems if I don't carry water and biotene, My mouth gets as dry as the sahara.
Jim04,
I believe Gary and or Brian have warned us newbies that sometimes the saliva does get worse after several years but I can't find the post. Maybe they will comment again.
Actually, I can't think of anyone who has said their saliva has gotten worse further out. Though it makes sense that if you stop taking salagen regularly and drink less water it would seem that way. Usually people talk about it improving even when they are several years out sometimes.
Trismus, though,definitely can get worse even several years out. Escpeially if you stop doing the stretching exercises, and same with muscle cramping.
Radiation is truly the gift that keeps on giving!
Nelie,
Maybe it was the Trismus, which would make more sense as you say, they mentioned but the post, I believe by Gary, stuck with me and I really thought he was warning us not to feel to comfortable with our saliva recovery as it could get worse years out.
I am still doing same - my stretches with the therabite (ouch) and taking evoxac (2 times/day - interesting most people take salogen instead), trental. pain (later) after talking much, after eating and brushing. not intolerable still making it.
Maybe I finally got lucky with everything Ive gone thru. I stopped needing to carry a water bottle at about 6 months post treatment. Now Im 9 months post treatment (from chemo and radiation from my 1st round of OC) and have about 80% saliva without taking meds to stimulate saliva. Everybody is different really is very true when it comes to how people heal from this awful disease.
Christine
Christine,
That's remarkable that after only 6 months post Tx that you were able to leave the water at home. I was well over a year before I dared do that. Yes we all do recover at our own pace.
Hi I am 8 months finished with my treatments and still no saliva. Chronic drymouth is a norm in my life. I work with the public and out in the weather with its dryness. I carry a water bottle with me at all times. HAve to. Keep waiting but not stessing for the norma to return but am happy to be here.
Lep,
Have you not seen any improvement in your saliva since end of Tx? My dry mouth was pretty bad for a good year post Tx and it was 16 months post Tx before I was satisfied with my saliva recovery though still not close to 100%.
I remember that period of dry mouth (now about 2 years since rad - entire mouth) - drs said you will improve - they now say probably (sounds like its likely) permanent. Biotene toothpaste, mouthwash and their Oral Balance help me. what area was your radiation? my surgeries were really easy compared to rad. effects.
I had rad/chemotherapy 2 years ago and have had a dry mouth ever since. I found that as a snorer my mouth stayed open during sleep which caused my mouth to dry out and wake me every couple of hours. Biotene gel helped but wasn't a complete answer. I eventualy bought a chin strap which kept my mouth more or less closed during the night. It was transforming (but not very sexy). Now I wake up in the morning and because I haven't been chewing the inside of my mouth because it was so dry, my mouth is in much better condition, I get to sleep most of the night, my use of Biotene gel has reduced and I feel much happier and my mouth is much healthier.
I also carry an atomiser filled with either water or a saliver replacement product. This easily fits into my pocket and can be used in emergency(when I forget my bottle, which I leave in shops,cars, people's homes etc) or places where a bottle is intrusive.
I have been having physio on my neck, which had been welded rigid and swelled with odema after surgery and radio therapy. This has loosened up the tissue in my neck and reduced the swelling and seems to have improved my saliva production somewhat. I'm resigned to the fact that this is as good as it gets now and I have to live with it and get used to it. It is a minor problem which is easy to get round and as long as you keep your mouth moist and your teeth clean, you will get used to it.
Also I use a high flouride touthpaste and mouthwash which has reduced my visits to the dentist.
I must be an oddball to this group, because although I do have dry mouth occasionally, my problem is the thick, putrid-sweet- tasting mucus I constantly have in my mouth/throat. In the mornings it starts out as a frothy liquid coming up in my throat, then the rest of the day I constantly have the mucus/phlegm in my throat/mouth. It makes me nauseous and I have no appetite. I had something similar during and right after my treatments (completed Jan '9; 7 wks radiation with 1 day wk chemo for Stage IV squamous-cell tonsil cancer), but this is much worse. I have written before on the forum about this, but not too many others seem to be experiencing this. My doctors blame it on the radiation I had, but I'm wondering if something else is causing it since not too many others have mentioned they have/had it. I probably sound like a broken record, so forgive me. Right not I am waiting for a call from my doctor with results of my latest 3-month CT Monday. Pray for me. I'll let you all know my results when I get them. Thank you for listening.
julieann
Buy a water pik. Aim it at your cheeks and use warm water mixed with biotene mouthwash. Close your eyes and sort of open your mouth and let the water pik do its work as it cleans out that thick mucous from your mouth and it all goes down the drain. Works great.
I do this first thing in the morning when the mucous is worst for me - give it a try. I say close your eyes because I don't like to see it! Yulch but hey, its the price we have paid!
Donna
Thanks, Donna. The only trouble I have is that my mucus is CONSTANT. Even when I clear it out, it comes right back from somewhere. It's a constant thing all day. At night, for some reason, lying down seems to help stop it, or at least I sleep about 5 hours. When I get up, here it comes - sort of frothy at first, then it thickens. I spit all day in a kleenex, which I hate (try to find hiding places where people can't hear me
The other thing is the putrid sweet taste associated with it. I've been told others have the metallic taste associated with theirs when they're having their treatments, but mine changed to the sweet taste about 6 months ago and is constant. Again, thanks for your suggestion. I just wonder if others have had the sweet putrid taste associated with constant mucus all day.
Julieann
The Hyperbaric sure brings out the mucous, And that ia it brings it out when you ar shut in that thing. Have to take a wash cloth they give me or a handkerchef.YUK
Dear Danny,
Sounds like you've done a great job of coping with your dry mouth and intergrating different therapies to make it easier to live with. As a nurse I talk with many people with dry mouth. It seems that people 5+ years without cancer reurrence aren't as interested in finding a dry mouth cure but have learned to live with the dryness.
Thanks,
Linda
My name is Linda and I'm a cancer survivor but not head & neck. I'm here because I've been working with patients going through oral & Head & neck cancers for the last 15+ years.Have been focusing on the dry mouth/xerostomia problem so often seen in survivors.The article on "Wonders of saliva" by Rosie Mestel in the website needs updating. Dr.Bruce Baum (mentioned in the article)is currently using Aquaporin gene therapy to create saliva in people with radiation-induced xerostomia. Currently, results are temporary but favorable without side effects. The current study is a Phase 1 trial at NIH to prove safety and best dose level.The goal is to use gene therapy to create saliva on a long-lasting basis. Anyone interested in more information ?
www.drymouthstudy.com .
_________________________
Hx of stage IV non-oral cancer tx with radiation, chemo & surgery in 2005. Currently a research nurse with National Institutes of Health working on a clinical trial using gene therapy for radiation-induced xerostomia.
[email protected]
Linda --
Just FYI about that saliva article: Rosie Mestel was a medical writer for the Los Angeles Times (she's now the deputy health/science editor), and that article was published in the LAT on Jan. 21, 2002.
So yes, there have been quite a few advancements in the intervening years!
(Brian: you might want to put a date on that article, plus give credit to the LAT.)
The credit has been added. The majority of the article is still valuable and worth reading for those interested in saliva. Of course OCF has been a financial sponsor of salivary diagnostic research work by Dr. David Wong's team at UCLA, and much progress in identifying RNA's and proteins in saliva that lead to separating those most at risk for oral cancer (and now other diseases) from the general population. Those articles about his work can be found by doing a search of the OCF oral cancer news section where we have been posting updates since 2002.