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Dry Mouth and Radiation

Pnktopaz10
Posts: 56
Joined: Oct 2008

I have non-hodgkins lymphoma in my neck. I have finished chemo R-CHOP and have gone through 10 of 25 radiation treatments. How do I deal with the dry mouth and inability to eat? Any advise would be more then welcome. Also am curious about how long the dry mouth condition lasts after the radiation is completed. Thanks so very much! Pnktopaz10

sandybe
Posts: 40
Joined: Aug 2008

I had the same problem with radiation. I found no matter how much water I drank, it did not help with the dry mouth. There are remedies you can get at the drug store if you ask the pharmacist. You can get a gel that will act as fake saliva, although I didn't find this very helpful myself. I chew gum all the time. The only solution I found was to chew gum containing xylitol. Stride gum is the only one I found containing xylitol so far, but it really helps. As far as food goes, there are some foods that are just impossible to eat with dry mouth, and it does give many foods a different taste. Gravies and sauces help as well as eating moist food, I eat a lot of fruit now and veggies, mostly because I have a hard time with alot of food. Foods I really loved before I am turned off of now, any cakes and chips are like chewing saw dust. Red meat is also difficult. It really is incredible how much you need saliva just to break down the food in your mouth. Good luck with this. Get the gum, it is the biggest help, other gums I find just dry out my mouth more. By the way, I finished my radiation July 4,2008. I also had a total of 25 radiation treatments, 22 of those ending on June 2,2008. I had terrible side effects and ended up in a bad way with pneumonia, they gave me a month off and finished the last three on July 4,2008. The dry mouth is not as bad as it was during treatment, but is still there.

sandybe
Posts: 40
Joined: Aug 2008

Not sure what kind of side effects you are having. If you are unable to eat, please tell your doctor as soon as possible, or tell the radiation technologist and they will guide you down the right path. Don't wait, things can get worse real quickly. If you are having problems swallowing, you may need to go on a liquid or pureed diet for awhile. I know it really sucks, but you have to do what you have to do. If it is painful to swallow, let them know and they have meds for that too. I couldn't swallow water without morphine and dexamethasone. It does get better!!

Pnktopaz10
Posts: 56
Joined: Oct 2008

Sandybe

thank you so much for giving me advice. I will go out and get the gum. I know what you mean about cakes and chips etc. I have had no interest in any of that. Congratulations on finishing your radiation treatment! I have been through 2 weeks of radiation and have three more to go. I do eat soups and some fruit but even the fruit is hard to swallow right now. I suppose it will get worse with 3 more weeks to go. I do have biotene gel and toothpaste and mouth wash for dry mouth and it works for a while but not all that long. I do drink a lot of water but you are right that does not help. Did you lose a lot of weight on radiation? I hope you don't mind the questions but I have not talked with anyone esle who is going through or has gone though this. Whatever advice you may have I am all ears. Thanks so very much Pnktopaz 10 (my name is Pat)

Racht's picture
Racht
Posts: 40
Joined: Nov 2005

Hi there Pnktopaz10
I understand what you're talking about! I had dry mouth for over 2 years after treatment. (HL survivor)
I learned of something that helps tremendously: coconut water. It is available at natural food stores or by ordering online. Try the ONE brand. It's best tasting. or Zica. Also, I found a natural mouth rinse that helped tremendously too. It is called perio-wash, formulated by an integrative dentist. Gum can be tricky on the digestive tract so I'd give these a shot first. It may take some time but it will go away. Don't be afraid to drink a lot of water too though! We need about 1/3 our weight in oz of water. Especially after all the treatment you've had your body is dehydrated! I wish you good health and peace! Rachel

Mr Taipei
Posts: 10
Joined: Aug 2008

Hi,

Dry mouth and mucositis are very common in a whole range of head and neck cancers as well as lymphoma. You might like to read on the head and neck cancer board, as this has some good comments on the subject, especially dry mouth. My wife has had treatment for Nasopharyngeal cancer, which involved 35 radiotherapy sessions on her neck-area, so I empathise.

Anyway, my sister is a pharmicist, and this was her evidence on dry mouth:

-----------------------------------------------------------------------------------

Non-drug methods:

Dry mouth
Helpful local measures include partly frozen drinks, while frequent sips or sprays of plain cold water are as effective as artificial salivas. Applying petroleum jelly to the lips prevents sore cracked lips. Glycerin, which dehydrates the mucosa further, and lemon juice, which rapidly exhausts salivary secretion, should be avoided.

Dry mouth

Semifrozen tonic water and gin

Semifrozen fruit juice

Frequent sips of cold water or water sprays

Petroleum jelly rubbed on lips

--------------------------------------------------------------------------------

This section is general to all causes of dry mouth, some of which is irrelevent to your condition.

General Pilocarpine info:

Dryness of the mouth (xerostomia) resulting from decreased salivary secretion is often an adverse effect of therapy with drugs such as antimuscarinics, antihistamines, tricyclic antidepressants, and diuretics. Other causes include dehydration, anxiety, Sjögren's syndrome (see Dry Eye, ), and radiotherapy of the head and neck. Dry mouth can cause eating difficulties and lead to oral disease such as candidiasis, dental caries, and bacterial infections.1,2 Where possible any underlying disorder should be treated first.

Frequent sips of fluids help to relieve dry mouth. Artificial saliva products are also important in the symptomatic treatment of dry mouth. They aim to mimic normal saliva and generally contain viscosity-increasing agents, such as mucins or cellulose derivatives such as carmellose,3,4 as well as electrolytes, including fluoride; they seldom relieve symptoms for more than 1 or 2 hours. It may be possible to stimulate saliva production with sialogogues such as sugarless chewing gum or citrus products but the low pH of the latter can damage the teeth. Malic acid has also been used as a sialogogue.

A number of systemic therapies have also been tried. Pilocarpine is an effective sialogogue, increasing salivary production where some function remains,5 and is used in dry mouth following radiotherapy; it may also be effective in Sjögren's syndrome or other causes of dry mouth. Adverse effects, particularly increased sweating, may, however, limit its use.6

With the oral use of pilocarpine, sweating is a common problem; caution is needed to avoid dehydration in patients who may sweat excessively and who cannot maintain an adequate fluid intake. Paradoxical hypertension and constipation, confusion, and increased urinary frequency have also been reported. Licensed product information states that it should not be given when miosis is undesirable such as in patients with acute iritis or angle-closure glaucoma. Blurred vision or dizziness may affect the performance of skilled tasks including driving. In addition pilocarpine should be given with care to those with cognitive or psychiatric disturbances, with renal calculi or renal impairment, or with biliary-tract disorders. Dosage should be reduced in patients with hepatic impairment

Onset and Duration
A) Onset

1) Initial Response

a) Mydriasis, ophthalmic solution: 10 to 30 minutes (USP, 1994).
b) Xerostomia oral: 20 minutes (Prod Info Salagen(R), 1998).
c) Xerostomia, oral, controlled-release: within 1 hour (Lockhart et al, 1996).

2) Peak Response

a) Glaucoma, ophthalmic solution: 2 to 4 hours (Barsam, 1972a).

B) Duration

1) Single Dose

a) Mydriasis, ophthalmic solution: 4 to 8 hours (USP, 1994).
b) Glaucoma, ophthalmic solution: 12 to 24 hours (March et al, 1982; Drance et al, 1974).
c) Xerostomia, oral: 3 to 5 hours (Prod Info Salagen, 1998).

2) Multiple Dose

a) Xerostomia, oral: over 10 hours (Lockhart et al, 1996).

4.5.M Radiation-induced xerostomia

FDA Labeled Indication
1) Overview

FDA Approval: Adult, yes (oral formulation); Pediatric, no

Efficacy: Adult, Effective; Pediatric, Evidence favors efficacy

Recommendation: Adult, Class IIa; Pediatric, Class IIb

Strength of Evidence: Adult, Category B; Pediatric, Category C

See Drug Consult reference: RECOMMENDATION AND EVIDENCE RATINGS

2) Summary:

Pilocarpine is approved for the treatment of XEROSTOMIA or DRY MOUTH from salivary gland hypofunction caused by radiotherapy for cancer of the head and neck (Prod Info Salagen(R), 1998). Availability of pilocarpine oral tablets provides an effective alternative to standard therapies (citric acid 2% solution, saliva substitutes, prednisone, cyclophosphamide, bethanechol) in the treatment of xerostomia in cancer patients (LeVeque et al, 1993; Carr & Noble, 1988; Greenspan & Daniels, 1987).

3) Adult:

a) Pilocarpine improves the symptoms of xerostomia. In a retrospective, subjective study, patients who received 5 milligrams oral pilocarpine four times a day perceived significantly less xerostomia than patients who received no pilocarpine. Patients were given radiotherapy for head and neck cancer. Most patients did not require pilocarpine therapy for longer than 3 months to lessen the discomfort of xerostomia (Zimmerman et al, 1997).

c) In a two-armed study, one a fixed-dose protocol and the other a dose-titration protocol, clinically significant improvement in xerostomia induced by radiotherapy was reported with pilocarpine treatments in an oral regimen of 5 milligrams three times a day for 12 weeks. The combined study indicated a 44% improvement in the primary subjective response, the sensation of oral dryness. A "global improvement" question used in the studies indicated a 48% overall improvement with pilocarpine compared to a 25% overall improvement with placebo and a 28% reduction in the use of alternative oral comfort agents with pilocarpine use compared to 11% with placebo (Rieke et al, 1995).

d) Administration of pilocarpine 5 to 10 milligrams (mg) three times a day has been effective in stimulating saliva secretion in volunteers with normal salivary function (Valdez et al, 1993; Johnson et al, 1993; Miller, 1993). There may also be some stimulation of the salivary tissue outside the field of radiation; however, the drug had no beneficial effect on the glands of two patients who had been completely irradiated (Valdez et al, 1993). Pilocarpine 2.5 mg offered no symptom improvement. Marked response has been seen at 8 to 12 weeks following initiation of therapy. Greatest improvements have been seen in oral dryness, mouth and tongue comfort, and speaking ability.

sandybe
Posts: 40
Joined: Aug 2008

Just wondering how things are going for you now Pnktopaz10.

Pnktopaz10
Posts: 56
Joined: Oct 2008

I am doing ok. Saw the nutritionist today so that I don't lose an more weight. she gave me some very good plans. Have 8 more sessions of radiation and if at all possible the dry mouth seems worse... but I am hanging in there! thanks for asking. Pnktopaz10

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi. Slickwilly here! I had NHL in my face in 2003. I lost half of my saliva glands, taste buds and nasal membraines. So I know what a mouth full of mud feels like. Its constant and frustrating. I had Chop+Rituxin and 25 Radiation treatments. I think everyone is a bit different here because of the exact location of the cancer and the direction of the radiation. And some Radiation facilities are better than others. But the bottom line is dealing with the side effect. Lemon drops sound good until your teeth start falling out because of the sugar. And most normal mouth washes contain Alcohol which drys the mouth worse. Gum containing Xyletol or mints containing the same thing are good. Biotene tooth paste will help with the teeth and can be found at most larger stores. It helps with the bacteria that eat teeth and boosts the remaining saliva. Chlorhexidine Gluconate oral rinse can be prescribed by your doctor and I find it to be great at bed time. I wake up with my mouth feeling much better and its alcohol free. Biotene also makes a mouth moisturizing gel that I have not tried yet. Its a saliva substitute. To help save my teeth I will be getting a flouride tray from my dentist that I can keep in during my morning shower. Well that is what I use. Best of luck Slickwilly

Daniel_NJ
Posts: 1
Joined: Aug 2009

Hi, I'm a NHL survivor and had chemo and 22 radiation sessions in April 2008.
I have been experiencing dry mouth condition and tried most of the products on the market. Some of them worked for me, some of them didn't.
The one that worked best for me has been the Sours Ice breakers, cheap and pleasant, especially the iced tea flavor. However my tooth got slightly damaged, than my doctor suggested Evoxac 330 mg. I take that 3 times a day and it's much better.
Good luck, good health and I hope this helps.
Daniel

Lymphoma_2010
Posts: 3
Joined: Nov 2012

I have sjogrens syndrome and than it developed in malt lymphoma. i got prescribed the evoxac and only take it twice a day. Cant tell if really working since so dry? How does it work for you?

altoman's picture
altoman
Posts: 7
Joined: Oct 2009

Hi all. I battled T4 Squamous Cell Carcinoma in 2007. I had 2 surgeries followed by radiation and chemo therapy. As a result I have chronic dry mouth. My salivary glands are permanently destroyed. I tried dozens of commercially available solutions but none of them work. My radiation head therapist told me that (salt)water is the best thing and I think she is right. She told me to carry a bottle around with me. But that is a little inconvenient especially when I'm asleep :O)

The effects of dry mouth are worse when 1) I speak, 2) I exercise, and 3)when I sleep. Anytime a lot of air passes through my air ways, my mouth parts all stick together.

So, instead of carrying a sipping bottle around I use the XEROS Dry Mouth Pump. I strap it on my waist. It's in a compact waist pack. It is programmable. I can set it to squirt small amounts of water into my mouth at certain intervals. There's a button for day time use and a slower button for night time use when I'm asleep. It also has a boost button when I need extra wetness. You can also use an anti-bacteria prescription if you want to help protect your teeth. It has a small tube which I place underneath my shirt. The tip is a soft wet sponge.

It works for me and maybe it will work for you. Just Google Xeros Dry Mouth Pump.

Sunstar5503's picture
Sunstar5503
Posts: 4
Joined: Jun 2012

I am three years out from Chemo, Rdiation and Surgery. The cancer I experienced is Tongue Cancer, a 4cm tumor at the base of my tongue.

We learn through treatments that we are all different. This is just my experience and I hope some of what I learned, am still learning, will help someone else.

During radiation I gargled with baking soda and salt endlessly. The Miracle Mouth Wash made me sick it was so strong. The baking soda/salt combo gave me a few minutes peace.

I also began at one time mixing aloe vera juice with filtered water in all of my water bottles. All. I have a selection and am always with one of them. It does get to be a habit. I have one of the Camel (with a nipple like top) at the head of my bed.
I do use the Biotene products, the mouth wash particularly. And the Oral Jell especially before bedtime. I know it will not last through the night and quite often I get up and squeeze another little bit.

Eating is tricky. I learned early on, for me, tomatoes, mushrooms, onions and olive oil grilled go down easily. As do most vegetables. Not broccoli. I grill out a bit in the little tin trays each with a different veggie and each in olive oil. I make a good eggplant parmigana complete with a little bit of crumpled sausage. Olive oil is great and good for us for the most part.

I can eat small bites of tenderloin with an accomapnying bite or two of tomatoe. The local farmer of grass fed, organic, hormone free beef saves me the little tenderloujn tails that look very fatty but are more moist than the other cuts. This is my protein.

I also discovered after my throat healed a good bit, that Indian food is good for swalloing, the spices are healing and I get veggies and protein. The Indian restaurants in the area have been very accommodating. They make sure to keep my glass filled with water o tea because I use it to help swallow.

I know this is a difficult path for many of us and quite frankly I see it as a game. I survived the treatment. I have a good diet of fish, veggies and fruit and some choice beef...

If I can be of help to anyone, please let me know. Good luck.

Sunstar5503's picture
Sunstar5503
Posts: 4
Joined: Jun 2012

I am three years out from Chemo, Rdiation and Surgery. The cancer I experienced is Tongue Cancer, a 4cm tumor at the base of my tongue.

We learn through treatments that we are all different. This is just my experience and I hope some of what I learned, am still learning, will help someone else.

During radiation I gargled with baking soda and salt endlessly. The Miracle Mouth Wash made me sick it was so strong. The baking soda/salt combo gave me a few minutes peace.

I also began at one time mixing aloe vera juice with filtered water in all of my water bottles. All. I have a selection and am always with one of them. It does get to be a habit. I have one of the Camel (with a nipple like top) at the head of my bed.
I do use the Biotene products, the mouth wash particularly. And the Oral Jell especially before bedtime. I know it will not last through the night and quite often I get up and squeeze another little bit.

Eating is tricky. I learned early on, for me, tomatoes, mushrooms, onions and olive oil grilled go down easily. As do most vegetables. Not broccoli. I grill out a bit in the little tin trays each with a different veggie and each in olive oil. I make a good eggplant parmigana complete with a little bit of crumpled sausage. Olive oil is great and good for us for the most part.

I can eat small bites of tenderloin with an accomapnying bite or two of tomatoe. The local farmer of grass fed, organic, hormone free beef saves me the little tenderloujn tails that look very fatty but are more moist than the other cuts. This is my protein.

I also discovered after my throat healed a good bit, that Indian food is good for swalloing, the spices are healing and I get veggies and protein. The Indian restaurants in the area have been very accommodating. They make sure to keep my glass filled with water o tea because I use it to help swallow.

I know this is a difficult path for many of us and quite frankly I see it as a game. I survived the treatment. I have a good diet of fish, veggies and fruit and some choice beef...

If I can be of help to anyone, please let me know. Good luck.

Sunstar5503's picture
Sunstar5503
Posts: 4
Joined: Jun 2012

I am three years out from Chemo, Radiation and Surgery. The cancer I experienced is Tongue Cancer, a 4cm tumor at the base of my tongue.

We learn through treatments that we are all different. This is just my experience and I hope some of what I learned, am still learning, will help someone else.

During radiation I gargled with baking soda and salt endlessly. The Miracle Mouth Wash made me sick it was so strong. The baking soda/salt combo gave me a few minutes peace.

I also began at one time mixing aloe vera juice with filtered water in all of my water bottles. All. I have a selection and am always with one of them. It does get to be a habit. I have one of the Camel (with a nipple like top) at the head of my bed.
I do use the Biotene products, the mouth wash particularly. And the Oral Jell especially before bedtime. I know it will not last through the night and quite often I get up and squeeze another little bit.

Eating is tricky. I learned early on, for me, tomatoes, mushrooms, onions and olive oil grilled go down easily. As do most vegetables. Not broccoli. I grill out a bit in the little tin trays each with a different veggie and each in olive oil. I make a good eggplant parmigana complete with a little bit of crumpled sausage. Olive oil is great and good for us for the most part.

I can eat small bites of tenderloin with an accompanying bite or two of tomatoe. The local farmer of grass fed, organic, hormone free beef saves me the little tenderloin tails that look very fatty but are more moist than the other cuts. This is my protein.

I also discovered after my throat healed a good bit, that Indian food is good for swallowing, the spices are healing and I get veggies and protein. The Indian restaurants in the area have been very accommodating. They make sure to keep my glass filled with water or tea because I use it to help swallow.

I know this is a difficult path for many of us and quite frankly I see it as a game. I survived the treatment. I have a good diet of fish, veggies and fruit and some choice beef...

If I can be of help to anyone, please let me know. Good luck.

Sunstar5503's picture
Sunstar5503
Posts: 4
Joined: Jun 2012

I am three years out from Chemo, Radiation and Surgery. The cancer I experienced is Tongue Cancer, a 4cm tumor at the base of my tongue.

We learn through treatments that we are all different. This is just my experience and I hope some of what I learned, am still learning, will help someone else.

During radiation I gargled with baking soda and salt endlessly. The Miracle Mouth Wash made me sick it was so strong. The baking soda/salt combo gave me a few minutes peace.

I also began at one time mixing aloe vera juice with filtered water in all of my water bottles. All. I have a selection and am always with one of them. It does get to be a habit. I have one of the Camel (with a nipple like top) at the head of my bed.
I do use the Biotene products, the mouth wash particularly. And the Oral Jell especially before bedtime. I know it will not last through the night and quite often I get up and squeeze another little bit.

Eating is tricky. I learned early on, for me, tomatoes, mushrooms, onions and olive oil grilled go down easily. As do most vegetables. Not broccoli. I grill out a bit in the little tin trays each with a different veggie and each in olive oil. I make a good eggplant parmigana complete with a little bit of crumpled sausage. Olive oil is great and good for us for the most part.

I can eat small bites of tenderloin with an accompanying bite or two of tomatoe. The local farmer of grass fed, organic, hormone free beef saves me the little tenderloin tails that look very fatty but are more moist than the other cuts. This is my protein.

I also discovered after my throat healed a good bit, that Indian food is good for swallowing, the spices are healing and I get veggies and protein. The Indian restaurants in the area have been very accommodating. They make sure to keep my glass filled with water or tea because I use it to help swallow.

I know this is a difficult path for many of us and quite frankly I see it as a game. I survived the treatment. I have a good diet of fish, veggies and fruit and some choice beef...

If I can be of help to anyone, please let me know. Good luck.

iyampopeye
Posts: 1
Joined: Dec 2013

  Is this the forum for posting about our experiences with radiation dry mouth? I have squamous cell carcinoma at the base of my tonggue. I have only finished my first week of chemo and radiation, yet my mouth is already dry beyond belief. It grew suddenly worse over the past 24 hours. I have never in my life experienced such discomfort. It's as if my mouth has become the center of my universe. I am hoping to find something I can use for relief. I have been using a bacon soda & salt mouthwash, which helps for about thirty seconds. I also am using Biotene toothpaste and mouthwash, I have tried a lot of other stuff. I just sipped some of the juice off of a bottle of giardianaria. The combination of vegetable juices in it seemed to satisfy, but I know it won't stop the dry mouth for long and may actually make it worse.

  Since my mouth has become a giant black hole, from which there is no escape, I have been sleeping almost continuously for the past day. But a person can only excape that way for just so long. My poor puppy dog is wondering what's up with me. She is the one who sleeps all day and all night. She's not used to seeing me do that.

  With this dry mouth, it comes as no surprise that I am not eating all that well. I eat whatever sounds good, and nothing sounds good, in small quantities many times a day. I body must be absorbing everything I put into it, because I haven't had a good B,M. for two days. I'm not constipated, though. There's just nothing left over to come out.

  My next appointment for rads is also my next for chemo. I have had three days off. I am hoping to feel some imrovement before my next treatment on Tuesday.

  I hope that someone will respond to this post. I see that most posts on this thread are over a year old. Today is January 19, 2014

cyu

Popeye

 

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