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ropey saliva following chemo and radiation

Bill D
Posts: 2
Joined: Dec 2009

As you can tell we are newbies to this site but I've noticed that there is a LOT of information out there from everyones' experiences! My husband was diagnosed with a strange cancer located at base of tongue with lymph node involvement, so he had chemo (cisplatin),followed with 36 rounds of radiation in 08 which didn't do anything, so he had surgery this past June, 09. The Sloan Kettering people did a forearm free flap procedure on his tongue with a neck dissection and since he "failed" the swallowing evaluation post surgery, he is now on a feeding tube because he can't swallow anything. Recent scans still show cancer so he just finished another 6 chemo sessions. My husband rarely complains, but he's having trouble with the ropey saliva stuff. Is there anything out there to help with this? Keep in mind he can't swallow so I was wondering if there was a drug that would dry this stuff up a little so that he could get some sleep! Thanks for any information you can give him. Bonnie

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Bonnie,

I congratulate your husband for surviving, and for doing so despite what are really great measures, without complaint, or with very little complaint. I salute you, as well, for being the caregiver that you are.

To answer your questions, or at least to try to, let's begin with the barium swallow test. You do not fail this test and thinking of it as pass/fail (as I once did) is likely to send you to a bad place, a place of frustration and even depression if you are of the sort who prefers strongly not to fail.

This exam is used to measure the ability to swallow at a given point in time. There is a long, long line of folks who discover that they cannot quite do the things they once did with their mouths and tongues and throats following surgery and other treatments. It is not failure. It is simply an inability at a given point in time to do things that one previously did without even thinking about it, an inability that may be corrected, usually is, via subsequent treatments, those provided by speech therapists, physical therapists, and the like. (Okay, it is failure and I should have been a politician, but you really cannot think of it like that: it is a measurement and a starting point, a mark on the wall to see where you are so that in the future you can know how much you have grown as well as a way for those who will provide therapy to know where the issues are so that they can better treat those issues.)

This will get better. It will. Even if other things get worse, and let us hope they do not, this will get better. At least to some degree.

With respect to the ropey saliva, this is the bane of all who go through the experience that your husband has endured. I am fairly certain that early on, after the surgery and during the following rads and chemo, the saliva thing woke me every two hours without fail.

I AM familiar with it, and I am not alone.

There are any number of posts over at least the last four or five years that speak to this issue, and you might find some enlightenment therein if you have time to peruse them.

In the meantime, my suggestion is that this is something he has to deal with, if only for a few months (it does get better). I used products specifically designed to reduce dry mouth and these seemed to help with the mucous over time. I am not an endorser of products, but one company was Oasis, and the other, the one I still use on occasion, is Biatene (sp?).

It is CRITICAL for hub to take care of his mouth, especially if, as you describe, I think, the salivary glands are not working yet. I urge you to advise him to do the mouthwash and to brush his teeth several times a day.

If there are magic cures for the mucous, I am not aware of them, Bonnie. I dealt with it, everyone seems to deal with it, but it does go away or at least abate over time. I advise that hub keep a water bottle near him at all times, as hydration is fundamental to getting over this particular issue, I think.

Incidentally, in that regard, I have been advised that sports drinks are not so good for you, as they leech important elements, while seltzer water, of all things, is apparently even better for you than regular water (this from my personal Onco Man).

Ultimately, I think hub may need to resign himself to waking every two hours or so for a month or two, Bonnie. In fact, I am not sure that 'getting dry' is the right strategy. It is a lack of moisture, in my recollection, that causes this onslaught of nastiness.

I wish your husband and all of those who love him the very best. Please be sure to consider this, Bonnie: to be a good caregiver, you must take good care of the giver. Do not forget yourself in these trying times.

Take care,

Joe

Bill D
Posts: 2
Joined: Dec 2009

Thank you all for the information. We came home from the hospital with one of those suctioning machines, so maybe I'll go find it again. Since my husband can't swallow he has to sleep sitting up so he doesn't choke on his own saliva! We're going to another swallowing evaluation today and maybe some therapy if my husband "qualifies". The procedure we're hoping for is called a vita-stim I think, where electrodes are placed on the neck to stimulate the swallowing mechanism muscles. Has anyone tried this procedure? Thanks again for the info. This is a great place to go to for information! Bonnie

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

Dairy products help promote the ropey stuff so stay away.

To get rid of it, I used unscented puffs tissues. I always had a box with me no matter where I went. When my mouth would fill, I would just grab a few tissues and stick them in my mouth and let them soak up the stuff. It worked pretty well.

Watch out for strong winds as they may catch the saliva and carry it high into the air while still connected to the mouth. I had this happen in a parking lot and had a line of spit at least 8 feet above my head. It was quite a sight.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

showboating again, I see, SASH :)

Here is my favorite true story, sash, one you will appreciate, no doubt (and don't reply that you have doubt, as that would be cliche):

I had a trache in early on after surgery and tended to forget that I did. This meant that whenever I had to sneeze or cough, I would reflexively cover my mouth while the goods were coming out of a hole in my throat.

My doctors had to dodge me as a result :). One day, I had this lovely, absolutely lovely Asian-looking nurse tending to me, so lovely that I would have been in love if she were not also so stern (I know you like 'em stern, SASH), and when I sent one, accidentally of course, and it hit her, she was one angry lady.

I never saw her again. She truly thought I meant to hit her with that glob.

Or so I suspect.

Anyway, when my son came to see me finally, unable to deal with it, clearly, the cancer I mean, not the way I lost the Asian lady, I told him that story along with how others ducked when I managed to shoot one all the way across the room to the opposite wall.

Guys laugh at the stupidest things :).

Take care,

Joe

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Bonnie,

No experience myself, but I have read others' suggestions. Several said that Selzer water helped.

I've also read that it's possible to rent a machine to help - much like the machine they use at the dentist's office to suction out your mouth. Some people said they got a prescription for it - some said they didn't but rented the machine on their own - some people warned of the potential for harming yourself with the machine.

Hope you find something that works.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Yes, indeed. You can get the same sort of suction device used by your doctor or dentist. I had one. As you indicate, Pam, I got a prescription for one. In fact, I came home from the hospital with one.

(If you and others are speaking of the same device, that is.)

This device has its uses. It is used to clear the mouth of unnecessary fluids, including the phlegm, and that is a good call, Pam. I had forgotten about it altogether.

The problem with it is that it is not there for you at two AM. Or four AM. Or six AM.

I did use mine, to be sure, during the day, but really did not find it all that effective in the long run or even the short run. After a couple of weeks post-surgery I gave up on it.

It is an option, and maybe it will help.

Take care,

Joe

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Boy, that sounds like a tough one! Not being able to swallow is a problem I never dealt with. I went a long time not being able to swallow food but never had problems with water or pills. I cannot imagine the problems that could develop

I had surgery to remove all my teeth prior to treatment so I did not have gum ot tooth issues either. I cannot remember any of the mouth washes because they tasted so terrible I chose to spit rather than rinse. There is a sour candy sold at stores that is sugar free and cut the mucous more than anything and it did not taste bad to me. It comes in a round green box and is found in the checkout isle as you bag your products. I am sorry I cannot remember the name. They have two types. Surprisingly the sugar free worked best for me.

I like the tissue idea. Wish I would have thought of that for me. I carried a can just like the old red necks I grew up with who were spitting tobacco. It was nasty but I did not have any spittle get on anyone either. I remember attending a gala affair with my wife and I had to go to the bathroom every ten minutes to get rid of the phlegm. We only stayed an hour but I got tired walking back and forth. The can worked for me.

It all gets better with time. Staying positive is the best option. I cannot stress enough to anyone to make sure that your mental health is also considered while on your journey. Don't ask how I know. LOL!! Good luck and check in often!

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