Possibly Liquid getting into lung

I was diagnosed with squamous cell cancer of the parotid gland in Nov. 2014 and had 33 rad and 7 chemo treatments.  Two years later cancer returned and had additinal 30 rad and 7 chemo.  At first I was doing pretty good but as time went by started having problems, one of which was trouble swallowing.  Swallowing test in Aug. 2018 showed I  was aspirating to my lungs and I was put on a "nothing by mouth" and was given a PEG tube.   After tube was placed I started swallowing therapy at the outpatient department of the local hospital.  The therapist is a speech therapist who has received additional training to deal with swallowing problems.  I also recently had some outpatient surgery where my ENT performed a laryngoscopy with injection into my vocal cords.  I  am waiting for the ENT to schedule another swallowing test.  In the meantime, I had my gastroenterologist replace my PEG tube with a "Mic-Key" button.  The button stays close to your body and you connect to it to take meds and nurishment.   I think you might look into therapy to help get back to swallowing without aspirating and check with your ENT to see if he might be able to help.  The Mic-Key button or a conventional tube is a lot better than aspiration pneumonia.  Good luck.  

to avoid a PEG tube.  I, like you, had one for a few months after my first series of radiation treatments and did not want another one.  To me, the deciding factor was my age, 77.  Although I have stayed in reasonably good shape, I did not want to have to deal with a hospitalization for aspiration pneumonia at this point in my life. 

Did you do speech therapy? They can check if you are aspirating with a barium meal.

Hi Jackie,

You've been through a lot over the years and here you are at one more bump in the road. Never had chronic aspiration so no help there but if the docs have some ideas do follow up with them. There is likely options other than a lifetime PEG. Good seeing you again. don

MickeyD said:

Similar experience

I was diagnosed with squamous cell cancer of the parotid gland in Nov. 2014 and had 33 rad and 7 chemo treatments.  Two years later cancer returned and had additinal 30 rad and 7 chemo.  At first I was doing pretty good but as time went by started having problems, one of which was trouble swallowing.  Swallowing test in Aug. 2018 showed I  was aspirating to my lungs and I was put on a "nothing by mouth" and was given a PEG tube.   After tube was placed I started swallowing therapy at the outpatient department of the local hospital.  The therapist is a speech therapist who has received additional training to deal with swallowing problems.  I also recently had some outpatient surgery where my ENT performed a laryngoscopy with injection into my vocal cords.  I  am waiting for the ENT to schedule another swallowing test.  In the meantime, I had my gastroenterologist replace my PEG tube with a "Mic-Key" button.  The button stays close to your body and you connect to it to take meds and nurishment.   I think you might look into therapy to help get back to swallowing without aspirating and check with your ENT to see if he might be able to help.  The Mic-Key button or a conventional tube is a lot better than aspiration pneumonia.  Good luck.  

Could you message me or expand a bit about your vocal cord injection? was is for vocal cord paralysis? My husband had it done twice when one cord lost function. Unfortunately now the second cord is paralyzed and we are seeing some specialists trying to find the best course of action. The fact that both cords are not moving has compromised breathing, swallowing and speaking. Evidently this complication is pretty rare and I’m searching for others who may have walked the same path.

Barbaraek

nancytc said:

I am nearly 2 years NED 33

I am nearly 2 years NED 33 rounds rads and 2 rounds of Cisplatin. 5 month in a feeding tube. I was initially given the okay to swallow with a "swallowing study" 1 month after completing treatment, and given a set of exercises to follow to keep all the swallowing muscles strong and to stave off fibrosis. Unfortunately at the time, I had a downturn for a couple of months and completely disregarded doing the exercises. Fast forward to a year later, I noticed that my swallowing seemed to be getting to be a daily struggle. Food getting caugt at the base of my tongue every meal, and the feeling iike I was going to choke every meal unless I was injesting yogurt or whole milk. So I went for a second swallowing study. What a shock! I was told that the flap that goes back and forth that guides you food or air to either your esophagus or your trachea was slow most likely early stage of fibrosis. Also that my throat contractions when swallowing was slightly off, my muscles that force the food off of the base of my tongue were weak. And that if I guzzled liquid that is was barely missing my trachea. So bottom line I was at high risk for aspiration pneumonia which causes bacterial pneumonia and can be fatal. Also that if the liquid goes into your lungs I wouldnt even possibly notice or feel it as the nerves that signal my body to choke and avert this were damaged as well and I wasnt coughing when I should have been. If I could not stop this progression of the radiation damage it would most likely result in a feeding tube and no more eating or drinking ever. The news was devestating and definitely got me laser beam focused on getting better come hell or high water! I was given a series of approximately 10 exercises to perform daily (twice is better). For me, I get up a bit earlier and use my shower time as my launching pad to do the exercises. They take me about 15 minutes and I think of them as like a gym work out but in my throat. I cant tell you enough how seriously I take the advise I was given. I also use the shower time to to do my neck stretches and my lymph node massages to prevent wooden neck from late effect skin adhesions from scar tissue building up which can show up months or years after treatment. I am 2 months post my new exercise routine and I am so excited with my progress. My ability to swallow feels so much stronger and the feeling of stuck food and choking is much less often. You can definitely strengthen these swallowing muscles but sooner is better than later. I hope to be the poster child of success and encourage others who are in the same boat as I am/was. NEVER GIVING UP!!! Best, Nancy

Thanks for posting your experiences. It's really warm to hear how you've found ways to reduce the aspiration and mentioning that nerve damage can mask the reaction to aspiration taking place.