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#197142 - 09/13/18 09:50 PM Swallowing issues  
Joined: Apr 2016
Posts: 65
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)

Joined: Apr 2016
Posts: 65
Massachusetts
I really can't believe what is happening to me my oncologist ordered a barium swallow study and that came out normal. But still having trouble swallowing but my local GI doctor ordered a manometry test, tube goes down the nose into stomach and the results said that my esophagus is no longer working and that my sphincter that keeps food down is no longer working and I have a hiatal hernia. I was told there is nothing they can do for me unless I start aspirating. My oncologist says I am fine. I am VERY frustrated and at the end of my rope. Has anyone ever heard of this. He said it is not from radiation cause he has seen other people without radiation with this problem. The last two nights I am wheezing and coughing and chest and back hurts. I just can't believe it. Can anyone give me advise. I received radiation in my mouth and neck, so I don't get why no one wants to tie the two together. Please anyone have a feed back on this matter. Thanks


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
#197145 - 09/14/18 01:12 PM Re: Swallowing issues [Re: msweet2995]  
Joined: Oct 2012
Posts: 997
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 997
Toronto, Canada
My husband’s esophagus was closed by scarring after radiation. Eventually, an interventional radiologist was able to re-open the esophagus by using a new prodcedure. So, John was swallowing, albeit, soft foods. However, three months after that, he got pneumonia. His oncologist ordered another wallowing test which determined that he was suffering from silent aspiration.

How long was it between your swallowing test and the manetry test? Could the swallowing difficulties have worsened in between the two tests? Many oral cancer patients lose their ability to swallow for one reason or another after radiation — I have run into a few while John was in treatment. So, it’s not unheard of. It can also be the esophageal muscles have become atrophied during the treatment period, that’s why patients are always advised to keep on doing their swallowing exercises even though they are not able to swallow much during treatment. So, I have no idea why your doctors say they have never heard of swallowing difficulties being tied to radiation.

At this point, if I were you, I would seek a second opinion. It is important to pay total attention when you are eating to ensure the food goes down properly. Are you wheezing and coughing because you have aspirated? John’s oncologist was able to determine he was suffering from aspiration by having his phlegm cultured because bacteria that’s normally not found in the gut showed up. Silent aspiration is when you have aspirated but you do not show a reaction at all. You don’t get the feeling that food has gone in the wrong way and you need to cough it back up. Go to your PCP and ask for a referral to another GI or a speech and language pathologist who specializes in swallowing problems.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#197155 - 09/14/18 09:05 PM Re: Swallowing issues [Re: msweet2995]  
Joined: Apr 2016
Posts: 65
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)

Joined: Apr 2016
Posts: 65
Massachusetts
Hi Gloria, it was only a month or so difference, the barium swallow showed normal but the esophagus and sphincter was very weak and not working properly and I have a hiatal hernia. I had radiation in 2009 so I guess I am lucky I am still alive, plus 2 times I had oral cancer. In 2009 I could only drink small sips of water and could not eat anything food and acid would come back up a stomach tube kept me alive. I had an endoscopy in June which was normal. This local GI doctor said there is nothing they can do that I will either die from aspiration or malnutrition. I asked my PCP and Oncologist if they would refer me for a 2nd opinion to a GI doctor in Boston, I am hoping but not sure if want a permanent stomach or tube in my intestines. I always say that quality of life is very important, very confusing but moving on one day at a time. So sorry to see the loss of your husband, this disease is truly terrible. Take care and thank you for posting.


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
#197168 - 09/17/18 06:30 PM Re: Swallowing issues [Re: msweet2995]  
Joined: Oct 2012
Posts: 997
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 997
Toronto, Canada
Hi Msweet,

I have taken sometime to reflect on my response. Getting oral cancer sucks. Just when one thinks one is out of the woods with an NED, then the long terms side effects kicks in. I understand perfectly how you’re feeling. My husband, John felt he had been robbed of all quality of life when he realized that his esophagus was blocked. He actively searched for treatments for his swallowing even though his cancer had already metastasized. He even contemplated going to the US for treatment (we’re from Canada) although taking that step would mean we would have to mortgage the house and go into debt. He would sneak sips of pop when I was not watching and absolutely refused to eat puréed food. The problem was he kept aspirating and was once hospitalized for three weeks, which, in Canada where we have socialized medicine, was a big, big deal.

As his caregiver, I knew how frustrated he was and yet, caring for him when he would not heed the SLP’s advise was frustrating for me. I was scared all the time.

At this point, you might have to weigh between health and having a feeding tube. Neither is an easy choice. If you choose a feeding tube, it would mean missing out on eating good, properly cooked food. Some people I know chew the food in their mouths and spit it out after. Would that be an acceptable course of action for you? If you choose to forego a feeding tube, you have to be very, very careful about what you put in your mouth. Aspiration pneumonia is exceedingly dangerous and if you get successive bouts, you will be weakened.

Is there someone you can talk to about your choice, a pastor or a counselor, for example? What about members of your family?

Most people do not really understand the struggles people with swallowing difficulties go through. It’s beyond most people’s imagination. If you’ve been through a barium test, you would know there only a flimsy piece of skin (the epiglottis) that guards our windpipe from the food that goes into the esophagus. John used to say maybe that’s a design flaw in the human body. Whatever that might be, I fully understand how discouraged you may be feeling.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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