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Saliva Question

timreichhart
Posts: 195
Joined: Aug 2010

Hi Guys
I know this topic comes up alot but I can not understand this part of the saliva. I am almost 2 months out of all the chemo and radiation treatments that means no more of that stuff. But my question is why now after month or so being done I have no saliva or little bit of it I mean during chemo and radiation treatments I had alot's of saliva but could not eat anything because of mouth sores and throat being so raw. I also went through that part with thick mucus after radiation for about 4-6 weeks now that I got that thick mucus part taken or should I say under control now I have little or none saliva and its making my sleeping like crap because I get dry mouth now and making my day like crap. Is there anything I can do try to get saliva back or is it going to take time like 6 months to a year as the paper said that that my radiation doctor gave me?

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I was told that it might never return. Sorry, not what you wanted to hear. I had radiation on both sides of my neck, and my radiation oncologist told me that my parotid glands got cooked, so to speak. Those are the main producers of saliva, although I understand that there are a lot of smaller saliva glands in various places in your mouth that are more likely to start working again.

I had saliva throughout my treatment, but somehow realized during that last week or so of radiation that things werre getting seriously cooked. I am one of the rare ones who didn't completely hate all the mucous, because at least the mucous was keeping my throat and mouth somewhat moisturized. When the mucous dried up about four weeks after treatment, I was as dry as the sahara, and I still am.

Using Biotene gels, rinses, sprays, and liquids. I keep them all next to the bed, with a big glass of water. I wake up frequently at night, take a slug of water, reapply one or the other of the moisturizing products, then go back to sleep. I remain hopeful that thins will improve. I am four months out from treatment now.

Hang in there. I guess you don't have any choice, but to hang in there.

Deb

timreichhart
Posts: 195
Joined: Aug 2010

Well I had IMRT/3D radiation done and my radiation doctor told me that he was going to try to protect the saliva glands from being damaged. I don't know if your doctor promised you that but I was not hoping I would not have to deal with this but I guess I am going have to now.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I agree with Deb, at least the mucous was something lubricating my mouth. I am as dry as dust now. I am about 18 months out, but I also had my left salivary gland removed during my neck dssection it was attached to my tumor.

I have been using all the biotene products and GC Dry mouth gel helps at night to get more than one hr of sleep at a time. It stinks. I drink milk during the day and it doesn't even help. Milk never bothered me with mucous or pleghm. I never could understand when people said it gave them that side effect.

Hope that it will get better in time for you. My RO also put in a perscription for me to take three times a day. It only made me sweat profusely but no increase in saliva. The backs of my hands were wet. Lol. Guess it doesn't work for everyone.

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

No one can really say if and how much you will get back. I went through a similar time frame and saliva story as you. I was on some meds that helped me sleep for several months when i finished treatments and I think that kept me oblivious to the night waking from dry mouth and allowed me good sleep = good recovery.

When it was clkear to me I had very little saliva, I saw my Rads Onc Dr. and he glumly shook his head (the wrong way). I then look around for alternatives and I started Acupuncture. I have been getting it sporadically for 9 months now and have regained about 15%-20% with a slightly more consistent amount through the day, so days are mostly fine. Night is the worst time, and now I'm off the sleep meds I do wake up a lot and the loss of sleep is not good.

I think a good dose of the mouth gel will help the first part of the night, and either reapply during the night, have water of course, and all here have said the Stoppers4 spray is excellent. i can't buy it here so will order some online again after the 1st attempt failed. i think the Acupuncture is worth a try.

Scam

timreichhart
Posts: 195
Joined: Aug 2010

how does Acupuncture work I mean what do they do?

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I've been very curious about acupuncture and it's effect on dry mouth...I want to try it.

http://www.acupuncturetoday.com/archives2000/nov/11drymouth.html

http://www.mdanderson.org/newsroom/cancer-newsline/past-episodes/acupuncture-eases-radiation-induced-dry-mouth.html

timreichhart
Posts: 195
Joined: Aug 2010

I wonder if acpuncture do hurt or not because if it doesn't I am willing give it a try if its going to help.

Rick2924's picture
Rick2924
Posts: 22
Joined: Jan 2010

I am 18 months post treatment having had 35 IMRT for SCC at the base of my tongue, including 70 cGy to both sides of my neck. They told me they hoped to minimize damage to the salivary glands, but I think we all know how that story goes. Six months after my treatment ended I found an acupuncture physcian who was experienced with radiation induced xerostomia. I had 2 treatments a week for 3 months. After a month or so I noticed a definite increase in saliva production. It's hard to quantify, but I say things were 15 to 20 percent better. I then went once a week for 2 months and now go to see her once a month. I'm sure this won't help everybody, but I feel it was a big help for me. I think that finding an acupuncturist who had experience with xerostomia was the key.

I still get dry at night and I find that Xylimelts (drugstore.com) help me. During the day, I like MedOral MedActive spray which I've been getting at MD Anderson.

Belive me, after what we have all been through, acupuncture needles won't be an issue. You wouldn't even feel them.

Good luck with your recovery.

Rick

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Hey Rick,
Where at MD Anderson do you get the MedOral spray??? Is is over the counter?

Thanks,
Chuck (in Cypress TX, btw;..)

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

You might have finish treatment a few months ago but your body continues to cook for weeks after sometime months after. It took a few years for my saliva glands to start working again. Also at night try using some of the sprayers on the market I use the Stoppers 4 and I get it on line at www.drougstore.com it works for me very well.

All the best to you my friend

timreichhart
Posts: 195
Joined: Aug 2010

I hope I can get my saliva back because I am 2 young I am only 24 and I would like to return eating normal solid food but as of right now I cant even eat anything solid or soft due to little or no saliva I mean my tease is back a little but I am still trying to heal. But as it was said earlier everybody is different on how fast they can heel and stuff.

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Mine is considerably better now. It started coming back about a year ago, but it is still far from what it was before. That happened at about year 9 post rads/chemo.

As far as eating, just take a small bite and if you need to take a sip of water to help moisten the food.

timreichhart
Posts: 195
Joined: Aug 2010

should I wait intill I get couple more months in of heeling before I start acupuncture or should I start it now?

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

Tim,

When ever you are ready, you can seek treatment from an acupuncturist. I don't think there is a 'too early' or 'too late' rule here. They use very fine needles and it is virtually painless or at the very least you feel a tiny pin prick - but compared to what you have already had, its nothing.

It is a bit hard to explain how or why it works as it form of Tradition Chinese Medicine (TCM) and hence works to balance the body Ying & Yang by stimulation through certain meridian (like pressure points). The Western idea is that Acupuncture works on your parasympathetic system and helps stimulate healing, pain relief etc.

Mine has helped and I also now carry a small tin of the sugarfee mints which help get the saliva going in no time. I eat with a fluid but it not as bad as it was 6 months ago.

Scam

matthewcplourde's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

Yes, someone mentioned it here - you just get used to taking a sip of whatever with each bite.

I was on a "saliva pill" for a little while after radiation, but I found it didn't help... After 1-2 years, I had enough back to not have constant dry mouth. Now, after 11 years, I'm still sipping with each bite, but sometimes I forget and it's okay... coming back slowly.

larryallen77
Posts: 1
Joined: Sep 2010

I am about six months out from treatment and lack of saliva continues to be a problem. I eat liquid based foods (soups, meat and mashed potatoes with gravy, Ensure). I have been on a pill for a couple of months to help with saliva but it does not seem to help. I pretty much have to eat by the clock because I never have an appetite. The doctors say it might improve as time passes. I use Biotene tooth paste and mouth spray which helps a bunch. Instead of Ensure I use Walgreens Nutritional Drink Plus (350 calories). It is equivelent to Ensure and costs a bunch less. It is normally priced two six packs for $12.00 but is often on sale for $4.95 for a six pack. Food is no longer a priority in my life and I have accepted that it may stay that way.

Does anyone have numb and tingling hands and feet? I continue to have this and it does not seem to be changing much.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

The numbness and tingling in hands and feet is the "peripheral neuropathy" side effect of the chemo that they may or may not have warned you about. I didn't get it right away, but it subsequently kicked in for me, about two months after treatment ended.

Here's hoping it subsides soon for you.

Deb

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

It is one step at a time, I am sure you will get a lot of your saliva back but it all takes time. It took almost two years for me to get about 70% of mine back and I have been radiated twice, so you should do even better

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

I was 21 when I was diagnosed, now I'm 31. What kind of cancer did you have? I don't see a lot of people in their 20's on here so when I saw that you were 24 I wanted to write. I had tongue cancer. surgery (partial tongue removal) and radiation, and chemo. I still have issues with eating and I know you don't want to hear that but everyone is different. I wish I took better care of my teeth in the beginning. Now I am, but my top 2 and bottom 2 are crowns and i've had so many route canals and just had my wisdom teeth removed. If you have any teeth pulled they recommend oxygen therapy before and after to help, I had it and it made healing better. My taste came back but there are still some things that taste odd to me. Right now I'm dealing with a throat stricture so I've had my throat dilated within the last 2 years twice. I know how frustrating it is not being able to eat and I hope you heal soon. for the dry mouth try biotene moisturizing spray, or online you can get something called stoppers 4 I've never tried it but others love it.
best wishes
Linda

fsdman
Posts: 51
Joined: Jul 2009

Tim,
everyone reacts differently,but in my case I had acupuncture for radiation induced xerostomia. Be sure your practioner knows the terminology and follows the accepted regimen. Worked well for me at 3 mos post tx.Also try sucking on sugar free lozengers. It seems to stimulate the glands and I felt they were trying to work. At 18 mos out now I can eat almost anything as regards saliva-I still need water but I dont panic anymore about not having any.My biggest issue now is a burning tongue.Everything seems to burn a little or a lot,but compared to my negative expectations I had last year,I am much,much better than I had hoped or expected. I aint what I was but I am alive and getting stronger all the time-thats the key apparently-TIME.Good luck.
Bob

timreichhart
Posts: 195
Joined: Aug 2010

Hi abbimom
the type of cancer I have is NPC aka Nasopharyngeal Cancer and it was in the early stage so the doctors felt that it was treatable. Tonight I was able to eat a cup full of cheerios with milk without any problems so I am happy for that and yes that was the first time I had anything really to eat in 4-5 months since I started radiation.

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

I had 35 rads and 3 Cisplantin, last rad was last December 17th. I got saliva back during the day but still to this day suffer the overnight dry mouth. I will say that if you can, train yourself to sleep with your mouth closed. This is difficult but if you can do it, this will work better than any medicine or spray or anithing, that inhale exhale with the mouth wide open will dry it out everytime. Taking meds to make you sleep helps too, because even if you cant keep your mouth closed while you sleep, youll be so sound asleep you wont even notice the dry mouth til you wake up.

GRAVEY

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Tim,

I had base of tongue cancer 10 years ago, and the radiation fried my salivary glands. I can't swallow, thanks to radiation, so no saliva is a mixed blessing for me. At any rate, the OTC product Mouth Kote is one of my best buds- I always have a spray bottle with me. Nights are the wild card, I usually wake up a couple of times with desert mouth.

Patrick

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