Possibly Liquid getting into lung

jackflash22

Im five years from startof treatment and been signed off. Since November 2018 I've had a cough and chest infections. Recently I had double pneumonia. They think I'm leaking my liquid drinks into my lungs. Has anyone had this start up after 5 years. I had back of tongue cancer. After a massive op....9 hours ..through side of neck and throat I had 6 weeks radiotherapy.....I've not had aspiration probs before this....why now. If it is ...what's my options. I know one could be back to feeding through a peg...is there any other options. I'm in uk but near great hospital in oxford. 

MickeyD

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.  

jackflash22

Thank you

thank you for quick answer. After my surgery and rads my throat completely closed for 18 months with scar tissue. I had an op to open it and it was successful. I had an aspiration X-ray and I wasn't leaking into the lungs. I've gone 3 years without problems now they think my chest probs and pneumonia 'might' stem from aspiration. I got used to a peg before and told myself it's better than nothing. I didn't like the protusion under my clothes. Maybe if I have to go back to formula feeds I could get a mic key button. Fingers crossed it was a bug that gave me the pneumonia not aspiration. I found this site very helpful in my early years. I read what to expect and wasn't too disturbed ....I find to be prepared is the best way. I hate the 'unknown'.

MickeyD

Hope you are able

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. 

patricke

Swallow Study

Hey Jackie, I'm very sorry to hear that you are having to deal with pnumonia, I pretty much know how much fun it isn't.  A bunch of years ago, I had aspiration pneumonia a number of times due to liquids getting into my trachea through the leaky voice prosthesis that I had at the time; the hospital named a wing after me.  If there is any suspicion that you are aspirating, I agree with MickeyD that it would be good idea to get a swallow study, which I believe would be able to determine whether or not there is leakage going on.  It's worth chatting with your doc about. Like you, I hope that it is a bug and not aspiration.   I send my best hopes, wishes, and positive energy to you. 

Patrick

SuzJ

Speech therapy

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

wbcgaruss

Hey Jackie

Just saying Hi. I was going through cancer treatment for throat cancer at the same time you were, my treatment started January of 2013, but was just a reader, not a member. Joined after my second bout of cancer, a spot on my tongue early last year. Just wanted to let you know I miss your picture. Also, I want to give you a word of encouragement to carry on and go with the swallowing tests because that shows them exactly what is going on and then you can be sure and hopefully find a solution for it if that is the case. I had one early in my treatment and I am not sure exactly why except they may have wanted a baseline view of my swallowing. Pretty neat I could see on a monitor my throat working and the swallowing mechanics. Jackie take care and God Bless You.

donfoo

wishing you well

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

Barbaraek

Get the swallow study

for sure! As we have just experienced within the last few weeks, radiation is the gift that unfortunately, keeps on giving. You may be experiencing some type of nerve damage which is affecting your swallowing ability, or sometimes fibrosis of the tissue can worsen over time and create a poor swallow. Once you determine whether your swallowing is intact, or if you are aspirating liquids or food, you can develop a plan. Best of luck to you.

barbaraek

Barbaraek

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.  

Vocal cord injection

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

 

MickeyD

Barbaraek said:

Vocal cord injection

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

 

To answer your question

The vocal chord injections are not related to vocal cord paralysis.  My ENT determined that my vocal cords were related to my aspiration difficulties and that the injections (2 on each side) would help resolve the swallowing problem.  Not sure I undertand all the technical aspects, but the injections would pump up the chords and thereby prevent aspirating into my lungs.   I do have some speech problems but that was not the reason for the injections.  Hope you and your husband can get some answers from your specialists. 

donfoo

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

wonderful

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.

nancytc

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

jackflash22

Thank you for listening.

thank you fellow sufferers. I know we all go through set backs. Like nancytc I was given swallowing excerise's. But I got over confident that they were working then  I stopped doing them. Now I want to do them againI find my neck has gone so wooden and painfully stiff that it's difficult to do them. Before November last year I was doing okay. I have liquid formulas in blitzed fruit, milkshakes...unable to swallow solid food because of scar tissue.... Nothing was going the wrong way ..I didn't cough excessively, but have since my radiation 5 years ago had a 'sometimes' cough. Since Nov 2018 I have been getting chest infections ending in double pneumonia. This week I had to go back to my GP for results of a infection blood test and found I have infection somewhere in my bodystill. I'm back on antibiotics and had another X-ray and sputum test. I have to get results in a weeks time and if I'm still coughing and have infection in my blood I will have to see the lung specialist. I'm waiting for an appointment for a swallowing test X-ray with blue dye. I guess they will track down what's causing the coughing soon....I hope. Otherwise,  now my strength is coming back I'm enjoying life again. Post cancer is like a see-saw one minute up the next down.