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Help- In Treatment - Dry Mouth

Chris and Marianne
Posts: 16
Joined: May 2013

I hope you can help. My husband is receiving Chemo(Cisplatin) and Radiation for a mass on the base of his tongue. He is struggling terribly with a disgusting taste in his mouth and lack of saliva, he's nauseus and he constantly is bringing up a foamy substance. They just put in a feeding tube because he cant even tollerate drinking water.

Are there any suggestions other than the Biotene and anti nausea medicine.? He is so misserable not being able to drink. He tries but then he feels like hes going to bring up the water and the food supplement.

Thanks,

Chris And Marianne

Hard12Find
Posts: 208
Joined: Sep 2012

Welcome to our little corner of the net, sorry to hear your husband is struggling....I don't know if I have any answers for you but I can tell you I had a very similar experience, and was nauseated most of my treatment. I couldn't keep anything down, particularly the formula. The feeding tube may help, but I am going to suggest that you begin to blend foods that he already likes and eats, I survived on malt o meal, smoothies,  blended oatmeal, blended soups, etc.....I lost 85 lbs., and now 4+ months post treatment, I am getting all of my nourishment by mouth, although it is mostly ice cream, soups, and soft foods, I am slowly gaining weight back, and finaly starting to feel human. I do like the biotene toothpaste, it seems to help with the dry mouth. I am sure others will chime in, but one other really very important thing is to keep him hydrated, I ended up in the ER several times due to dehydration, from vomiting all the time. Even if he needs to have fluids IV a couple times a week it will help......hope this helps, and hang in there. This cancer can be beat, and it does get better post treatment....

Jim 

MarineE5
Posts: 760
Joined: Dec 2005

Chris and Marianne,

Unfortunately, the food taste like cardboard and the fluids taste like aluminum. I found that the water was not tasting good at all. I found that room temperature or colder coffee with half and half in it coated my mouth and throat a little bit more then plain water. The only thing I can suggest is to find something that he is comfortable with and go from there. For me, it was mainly the canned nutrition, but I had part of my tongue removed, so it was awhile before I could try soft foods. Scrambled eggs with sugar free syrup was a part of my menu....

My Best to Both of You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

Chris And Marianne,

Welcome to the H&N forum, very sorry you find the need to be here.

I was drinking water by the bucket full all through treatment; I was told I had to by the H&N gang. I lived on 99% smoothies for 7 months so I know what it is like to hate the taste, no taste, feel and texture of food.

I had a utility room sink dedicated to the gag, spit, dry heave, mucus, the whole H&N gambit.  I also went through a 6 pack of Magic Mouth Wash and Lidocaine gel to help relieve pain in my throat, tongue and mouth.

I know it is difficult, but you need to find what works best for you and do it. Hydration and swallowing are extremely important.  You avoid a lot of problems by drinking water (whether it tastes, salty, metallic or like old gym socks).

Today at 14 months post from stage IVa, SCC, BOT, HPV+, 1 lymph node (surgery, rads & Erbitux) things are getting better.   I use Xylimelt tablets to help supplement the lack of saliva (with great success)

Hang in there, it doesn’t last forever.

Matt

Chris and Marianne
Posts: 16
Joined: May 2013

Thank you Sooo much for your responses.

Chris hasn't been able to eat or drink anything for weeks(except for very little sips). He just gags and it comes back up.

After he drinks a little he feels like the suplements taken through the tube will come up. Has been walking  around with a bottle of water in one hand and a "spit cup in the other. I feel so bad, he's beginning to look frail and much older than 53.

Any ideas to fight the bad taste in his mouth?

Thanks again for your support.

My prayers go out to you all.

Marianne

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

sips are a must, keep them going for the very least it keeps you swallowing automatically working. if you don't uses the muscles that do the swallowing you could loose them over a period of time. another way is to suck on crushed ice like a smootie

john 

 

 

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

i suggest when it gets this bad that IV Fluids is a must, for some it maybe everyother day or every third day. i would suggest to at least get them on fridays for the long weekend. you should be able to just ask for them and they will give them when needed. 

as for the crap in throat and mouth, i suggest a portable suction machine, the doc's can write a script for one, it has a want on it that can suck the crap out throat and mouth. i loved mine when i finally got one. 

i sure there are others but these worked best for me. 

sorry you had to join the group, but you have come to the right place for support, knowledge, experteese along with years of survivorship and caregiving. 

john 

Chris and Marianne
Posts: 16
Joined: May 2013

The suction thing sounds like it would be great. I think He gets iv fluid 1x week the weeks after the chemo. He s had 2 Chemos and 4wks of Rads so far.

Thanks for the help!

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

one time per week may not be enough, i know a few here locally that went every other day and it made a difference. 

for me starting week 5 of 7 1/2 weeks was the beginning of the worst, sure hope this is not the case for Chris

john 

 

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

This is a club no one wants to be a member of.  Last September I was diagnosed with base of tongue (bot) squamous cell carcinoma (scc).  Went through Chemo and Rads and have had all the issues your husband is dealing with.  I'm going to give you some ideas that worked for me and some warnings that are critically important.  First the warnings:  Your husband must drink, no options.  Two reasons are hydration and swallow muscles.  Lack of hydration will cause him life threatening problems so fluids (even through the tube if necessary) are mandatory.  Your Doc or nutritionist can tell you how much he must have every day.  Dehydration probably caused me more suffering than any of the treatment because I didn't follow the suggestions of the folks here. Not swallowing can quickly cause the throat muscles to atrophy and might not come back.  Think about how bad that would be to beat the disease and then not be able to swallow properly because you didn't keep the muscles working.  Ok, enough warnings.  Please check out the Superthread at the top of this page, it has a terrific amount of info that will help him out.  Here is a recipe for a mouth swish (don't swallow) that helped me a lot with both cleaning out my mouth and preventing/treating mouth sores:  1 teaspoon of salt, 2 teaspoons of baking soda, 1 qt. water.  Swish, gargle and spit a minimum of four times a day.  There is a prescription product (Chaphosol) that was a life saver for me that did all the things the recipe did but also helped with dry mouth.  They are great used alternating.  Ok, last thing, keep on the lookout for if his tongue turns white.  If it does he has Thrush (very common and described in the Superthread) and needs to get meds from the doc.

There's more, but I'm afraid I'll overwhelm you.  So, start here and ask more questions as things pop up.  By the way, might be a good idea to have your husband read this so he see's how serious the hydration and swallowing are.  We're here to help so don't be a stranger.

Joe

Chris and Marianne
Posts: 16
Joined: May 2013

Joe,

Chris has what you had. BOT SCC. Sorry, I don't know what u mean by 'Super Thread"?

marianne

p.s. I;m so happy we found this page. Your group is great.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

In case you still can't find it cut and paste this link:

http://csn.cancer.org/node/253694

boardwalkgirl
Posts: 263
Joined: Jun 2012

So sorry he is having to go thru this. Sounds very familiar. You might try these new lozenges that ACT is making for dry mouth, they have a nice mint taste to them and seem to help with my dry mouth. I have found I prefer the Act Fluoride Rinse over Biotene also, just seems to help me more. But like everyone else says, you just have to try different things and see what works for him.

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

Sorry you find yourself here, but you've found the best place on the internet to be.  I can't add much to what everyone else has said, except to reinterate that he HAS to swallow something everyday.  My Dr.'s put the fear of gawd into me about losing that ability....it can be forever!!   Water to me, tasted like it came from the ocean....salty....but since I knew it was just my taster out of whack, so I drank it anyway.  Dehydration brings with it a world of hurt, dizzy, weak, sick, everything miserable but thirsty (go figure).  I had good luck with plain old 4% milk. I could taste it, it gave me needed nutrition and needed hydration.  This is the time for experimenting with different things to see what might pass the gag test.  Like maybe flat 7-Up at room temp...crushed ice (one person here got a sno-cone machine which worked well for them).  

As for the dry mouth....I didn't like Biotene either.  I had good luck with Stoppers-4 (I think I got it at drugstore.com)....and I still use it at night 9 months out of treatment. 

Being constantly nauseus is miserable.  My Onc told me to use my anti-nausea meds anytime I felt sick....not just the week after chemo....and I did.  I had Zophran, Compazine and Ativan (lorazipam)....because I was getting Amifostine everyday I had rads, I used Ativan everyday...and that probably helped keep the nausea at a distance.  I'm wondering if he starts his day with anti-nausea meds, if he might stave it off??

You'll find the Superthread at the very top of the main page of this forum....it is always there, and is plum full of info.

p  

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

So sorry you are going thru this whole ordeal. As hard as it is, please try to keep in mind that it will get better.
I know a couple people have mentioned a few of these things earlier so sorry if I repeat but for me I got hydration 3 times a week because just doing it after my chemo wasn't enough. It really helped with the mucous, terrible taste and overall made me feel better.
I know the suction machine helped many members here but I didn't have one....so wish I did.
I also wanted to mention to have hubby checked for thrush. When I had it my mouth hurt and I had a terrible taste in my mouth! Once I started meds I had lots of relief. I ended up with thrush a few times during treatment and each time I had the bad taste too until the meds kicked in.
I hope that something that one of us mentioned will help your hubby. Let us know if you have any more questions.
Billie

HobbsDoggy
Posts: 165
Joined: Feb 2013

I was given some NeutraSal and it helped me quite a bit.  I think it requires a perscription.  No matter please talk over with your doctor before considering as I am not a medical person and have no clue as to side effects, etc.  Just a thought.

Duggie88's picture
Duggie88
Posts: 557
Joined: Feb 2010

Welcome to our club

I can't add much more to the above. So I will go back to my corner. Hang in there life seems to be at a stand still right now but it will get better.

      Jeff

Chris and Marianne
Posts: 16
Joined: May 2013

Thank You ALL

Your replies have been most helpful. He got a different med for the thrush today so hopefully that will help with the bad taste.

I'll keep u all posted.

God's blessings to you all!!

C&M

hsnmp1978
Posts: 44
Joined: Feb 2013

My husband started acupuncture from week two of radiation and he never lost his saliva completely and he is still getting his acupuncture and he has more than 80% of saliva. My husband is doing total of 24 treatment for saliva.

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