Hello....I have decided to join this forum in hopes of helping my father. He had a barium swallowing test today.....well they didn't get any fluid down......after they decided his epiglotis wasn't working and they didn't want him to aspirate. He has had a peg tube for a little over one year now and is totally frustrated. He still suffers from excessive mucous and says it is like glue. He had part of his tongue removed, some jaw bone last summer and completed radiation. I should probably mention that he is almost a 16 year survivor of a stem cell transplant for leukemia back in 1994..... So dad is an extreme case when dealing with side effects of radiation. He just soooo wants to eat again. Does anyone know of treatment for helping the epiglotis? He had one third of his tongue removed, so I'm sure that doesn't help with the swallowing. He can't even get down one sip of water without it going the wrong way. They are talking vital stim therapy to try and help. The dr. In Omaha said he is still feeling long term effects of so much radiation. When is enough enough? He is such a good man. If anyone has any ideas for helping his mucous to stop or ways to proceed with treatment options, I would sure appreciate it. I've learned a lot of this forum already....such brave people!!!!

Welcome to OCF. I will try to help you. I am assuming that your father is an oral cancer survivor who went thru radiation treatments. Is that correct? When did he finish radiation? Where was his cancer, tongue or jaw or both? Has he been treated at a cancer center? Im not sure what the stem cell transplant has to do with his current radiation related problems. Radiation causes many after effects which are detrimental to a good quality of life. We all have our share of these issues.

Mucous is something many of us deal with on a daily basis. Sometimes musinex will help. I take sinutab which helps my damaged sinuses which in turn produces less mucous in my throat.

Has your father seen a speech therapist? That has helped some people with the swallowing. This is something that cant be forced. If he cant swallow then sadly, he cant eat. Nobody like depending on a feeding tube but for soem people it is necessary. I have one myself.

Please add a signature when you can. Its located under the "My Stuff" tab, then profile, the box on the bottom is where you can add your fathers info. Hope I was able to give you some useful info.

Yes, please add some info so we know how to help you. I'm assuming he finished treatment about 1 year ago since he's had a peg that long.

I'm sorry but I don't know what to do about the excessive mucus, I had that problem but only for a short time before it turned into dry mouth issues.

I don';t know if having the epiglottis stretched would help, I'm sure some others can help out.

I had 1/2 of the base of my tongue, along with my right lower jaw removed. Swallowing was very hard after radiation, I aspirated alot! I still have a peg tube for nutrition but with alot of therapy I'm slowly regaining my ability to swallow without choking anymore.

Not sure how bad his swallow study was but you may want to ask the dr if adding a thickener to water may help, that way his epiglottis has time to close off the airway before it goes down.

Welcome to OCF!

I can really relate to your father's frustration. It can't hurt to try VitaStim therapy which is just electrical stimulation of the swallowing muscles. I had very high hopes for it, but unfortunately it did not work for me.
As to the mucous, I have learned to swish some water around and gargle then spit the mucous out. It took some practice and lots of dribble and spray down the chest and face at first, but it is a great relief to get the mucous out. I even swab my mouth with a tissue to wipe up the especially sticky "glue" like mucous. My oconology dentist made me a palate drop so I can spit better and talk better but nobody has had any success in restoring my ability to swallow.
If his epiglottis is "frozen", there is a chance that it will slowly improve. Unfortunately I don't have any easy answers or remedies for your dad, just empathy.
Charm

Hi there...have you tried Robitussin for lessening the mucus a little? My husband is having a real hard time with that also and someone suggestion a "suction machine" which I will check into the first thing next week...I'll let you know!

My husband has seen many doctors for the same problems. Thick, glue like mucos and inability to swallow. He is also 16 years post radiation with a small portion of his tongue removed. He had a peg installed 3 years ago and has accepted the fact he will not eat again. What did help was to get a button tube. Since it is low profile, very small, and the extension set can be removed when needed for a feeding, it provides a certain amount of normalcy. I strongly recommend Applied Medical Technologies MiniOne non ballon button.

My husband has also started using a portable oral suction machine for the mucas. This may be something your father might want to try.

Hi there...I haven't spoken much, but my husband, Goldy had not eaten for three years (feeding tube) and mucus galore. We were fortunate to find a specialist called an laryngologist at the U of Wash. hospital. They did testing and also said the epiglotis might not be working. They did a barium swallow,also and liquids would not go down. It wasn't until he had one of drs in Gastoenterology go inside to see what the problem was that the esophagus had been closed off by a membrane. And the Dr. opened it up. He went in a second time...the esophagus closed up again!! Then they proceeded with esophagus dialations every few month. He is now able to drink water, liquids, smoothies and eventually food in smaller pieces. He also went to San Diego for the Vitalstim therapy. The last time they dialated his esophagus they were able to go beyond a pediatric size. We never knew that there were specialist ... its worth it research. We had orginally been going to the VA here, but we doing know there were specialist in this type of situation. Also he doesn't have to swab his mouth all the time...because it goes down now. He still has dry mouth but can drink water now orally. He is MUCH better and is so much happier.

Hi, I have been cancer "free" for 3 years since a 90% glossectomy. My lower teeth were removed when they split my jaw. I still have a peg and a suction machine which I still use. I have drooling problems and then dry mouth at night but the mucus issue is slowly improving and I am better able to spit it out but this took awhile.. I am now trying to drink liquids other than water but I have to use a spoon and stand up and I am eating puddings, jello, soup, oatmeal and coffee and ice cream. I can eat applesauce but it has to be followed by water due to the thickness. I highly recommend the mucus machine. For 2 years I would not go anywhere for long or overnight without the machine. I literally took it with me, tubes and all. I just caught myself yesterday not having to use it for several days. Good luck.
Patty 100

Hi All:

I also suffer from the thick mucus and it seems to be getting worse, rather than better (finished my treatments January 2008). Also, I've yet to hear anyone describe a sweet putrid taste like I have associated with mine. Does anyone have such a problem? In the mornings I wake up with a very dry mouth, but after I'm up, the thick, sometimes sticky mucus starts, always with that taste and continues all day. Sometimes the crap is so sweet, it actually burns my tongue and lips. Just wondering if anyone has that taste, or any taste, associated with their excessive mucus.
Thanks.
julieann

Julieann,

I don't know if this will help you but my brother thought it was great for the mucous. I bought him club soda. Pour it into your mouth while it is still fizzing and swish it around for as long as you can. It pulled a lot of mucous out of his mouth and after 3 trys, he sounded better and speech was more easily understood. He does this a couple of times a day and swishes it for 2-3 times. Hope it helps if you decided to try it.