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#61248 07-08-2007 07:54 AM
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Has anyone used artificial saliva over the counter products?
My husband has esopaghus strictures and gets dilated every 6 weeks. He can eat more food in very small bites but his dry mouth seems to be getting worse. This means that no matter how much he chews and drinks water, many times the food ends up as a dry ball that won't swallow. He has been on Salogen for months but no improvement.
His dentist suggested buying an artificial saliva over the counter product. I read this topic on OCF website and it sounds so..so..
I would appreciate hearing from anyone who has used this. We also live in the middle of nowhere and the local Eckard Drug store didn't have anthing except Biodene which we have already tried.

Paula confused


caregiver to Gil dx SCC 11/05 T2N2M0
finished tx 3/10/06 stage 4 rt tonsil,BOT,2 lymphnodes,35IRMT,6 chemo
#61249 07-08-2007 12:36 PM
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nelie, have you tried these?


caregiver to Gil dx SCC 11/05 T2N2M0
finished tx 3/10/06 stage 4 rt tonsil,BOT,2 lymphnodes,35IRMT,6 chemo
#61250 07-08-2007 02:10 PM
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Jordan, I've tried a few different things, and none work very well, or for very long.

YOu may want to try plain old glycerin ( any drugstore should have it) and mix it with distilled water to get the consistency that works best for him. It won't work a lot better than the store bought stuff, but it is a lot cheaper, and doesn't have any real taste
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#61251 07-08-2007 04:33 PM
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Hi Paula, The one I find works best is the biotene liquid that's kind of banana flavored. I squirt in a good amount before a meal, try to swish it around my mouth, then swallow what is left. Of course, banana flavor doesn't mix with everything I am eating but if I have really dry mouth I use it anyway.

Basically, because of my epiglottis, I really can't eat stuff that has much solidity to it anyway so, since everything i eat is fairly moist, I don't have that problem quite so much.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#61252 07-09-2007 04:16 PM
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Dragan,
Everything is worth a try and we appreciate your response.
I bought the glycerin and distilled water today. Did you rinse with this before or after eating? The glycerin says external only so I'm assuming rinse only. 2 or 3 parts are the directions- one teaspoon of glycerin to 2 parts water?
Thank you,
Paula

Nelie,
I have been really lax. I hadn't kept up with your posts except where you responded to others. You and Amy have been my foundation for getting thru this. You and Gil have been thru so much. he gets tired of me saying .. being positive.. but I will keep at this until there is nothing more to do for the stricture. His gastroenterologist says give these dilations 2 years (March 2008) to be sure the radiation isn't still working against him and then maybe .. some type of surgery on the scar tissue( no transplant.. too high morbidity rate).


caregiver to Gil dx SCC 11/05 T2N2M0
finished tx 3/10/06 stage 4 rt tonsil,BOT,2 lymphnodes,35IRMT,6 chemo
#61253 07-09-2007 06:09 PM
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I use biotene but I really only use it in the morning and at night. During the day I seem to do ok with my drinks and if Im really yucky feeling, I'll swish with some salt/water. Not sure why that makes my mouth feel good but it doesn. No idea if it helps my dry mouth, might make it worse for all I know!

I do know that my dry mouth has gotten slightly worse the past 4-5 months. Most likely further raidation damage happening.

Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#61254 07-13-2007 01:13 PM
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Minniea?

You talk about swishing with salt and water....how long has it been sense you finished radiation?

I finished June 22nd and my mouth is still yukky and dry.

Will I have to wait years before i'm over this?

Thanks in advance


Age 55, Right side throat with ear pain. Squamous cell carcinoma of the supraglottis with cervical neck metastasis. Stage IV disease with a T3, N2, MX

March 2008, diagnosed with Non-Hodgkins Folicular Lymphoma

Now taking Thyroid pills for side effects of Rad Treatments

And Life Goes On...
#61255 07-13-2007 02:57 PM
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Anne-Marie,

I finished radiation four years ago as of July 10th. As I'm sure you've been told, our saliva never returns to normal. Even if we get quite a bit of it back, it tends to be stringy and thicker. I've adjusted well to it, but at times I use salt/water swishes to soothe my mouth, especially during the change of seasons.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#61256 07-14-2007 12:41 AM
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The best over-the-counter products are those which mimic or enhance your own saliva, since natural saliva contains important enzymes and other compounds which protect and mineralize your teeth, reduce "alien" oral bacteria, initiate digestion as well as lubricate food during chewing.

The Biotene (LaClede) products are considered about the best by many, you want to try their "Oral Balance" products, either the new liquid (really, a thin gel) or the older gel in a tube. There are also Oasis products but these do not seem to contain the enzymes that Oral balance does. All of these are available at Target, Wal-Mart and also Rite-Aid (which has bought out Eckerd Drugs). Costs at the former two outlets is about 1/3 to 1/2 less than at the regular drug stores!

Salagen as a medication has been superceded by Evoxac, which works far better per our ENT who herself takes it for her dry mouth resulting from extensive (cobalt) radiation for a head/neck cancer 20 years ago. My husband takes Evoxac, originally 3x a day but now only 1-2x as in last two years his saliva has recovered very well (which does happen, even our ENT said it has gradually gotten better for her over the years). However both of these medications work only if some residual salivary gland function is left (which it should in most cases if IMRT was used and careful radiation planning was done).

Another option is to try to chew one of the xylitol-containing gums, the best probably being XyliMax as is is formulated for dentists to eliminate lingering sugar from mouth after eating, thus reduces dental caries, *and* to increase mouth moisture. The chewing action itself stimulates saliva production. My husband actually prefers to use the gum rather than any OTC product if his mouth feels dry. The Fruit flavor is less irritating to a sensitive mouth.

Saliva production can improve over time, sometimes this can be sudden, sometimes more gradual -- my husband notes that he chews far less gum now than in the past (now mostly just after eating) and drinks no more water with dinner now than I do. But it has been a gradual process....

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#61257 07-14-2007 02:48 AM
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Anne Marie,

You are not even a month post Tx so looking for improvements in the Dry Mouth arena are useless. I assume you had IMRT and if so the damage may be less to your saliva glands than the predessor RT but even if the damage is less, your saliva return will take many many months. I noticed my first improvement after 4 months and then another slight change after 5 months and now after 10 months I would say I'm close to normal but still far away.

Here's what I said after 4 and 5 months:

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

Hang in there.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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