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Joined: May 2022
Posts: 1
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Joined: May 2022
Posts: 1
About 4 years ago, dad had throat cancer near vocal cords.
During first doctor visits to get diagnosed it didn't seem to bad except maybe a cold.

Two to three months later was told it was stage 4 and getting into lymp nodes. Radiation and chemo was done. All was ok for about 5 months.

Then suddenly the throat closed up and couldn't breathe and went to the ER to get emergency surgery to make a stoma in his neck to breathe. At first it was very heavy mucus and needed suction a lot.

Now it's been about 3-5 years since the surgery.
But there's still a big problem.

The epiglottis flap is damaged so doesn't work right to eat or drink.
Thin liquids, juice, water, fruit juices, little foods like rice, peas, things that crumble or are dry, and other things cannot be eaten. That isn't the worst of the problem, but it still sucks only being able to eat certain things. But the wrong foods get aspirated and he coughes so much when they try to go down his airway.

The worse part is when he gets mucus built up and has a hard time coughing it up and it gets thick. He gets red and gasps for air and almost choking to cough out the mucus. After a while it either comes out or has to be sectioned. I'm not sure if it's the dry air that causes it when he it outside, but it can happen inside too. He gets daily humidity breathing treatments over it and only suction as needed.

Can anyone give advice on how to prevent the mucus?
Does anyone choke on it and feel like gasping and can't breathe and hard time getting it out?

Does he need to wear a device to moisten the air over the stoma more? But that's not comfortable to wear a lot tho and can't talk with it. Can he? Isn't that type only for humidity?

And he has said when he wears it, he can't get much air in with a talking valve (the one used to not have to cover the stoma with finger to talk).

Would a total laryngectomy fix the aspiration and epiglottis problem?
He never wants to get that done.

Can anyone give advice on this?
Seeing him choking on mucus and trouble coughing it up is the worse.

Joined: Mar 2002
Posts: 4,900
Likes: 34
OCF Founder
Patient Advocate (old timer, 2000 posts)
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,900
Likes: 34
My stoma eventually healed in when it was no longer necessary, it sounds like his is a permanent end result. But the mucous issue has never gone away over the years. I have taken antihistamines when it get really bad which help sone but the by product of that is my very dry mouth gets worse.

His problem is common, and humidifiers are only a modest help. The suction machine is necessary and the means for dealing with the worst of it, but years later it is still a problem for many. As to the nerve damage that keeps his throat from channeling liquids and food in the right direction, there are some swallowing exercise protocols to try and strengthen his safe swallow. Many people like me never are able to get that function back. The risk of aspiration of liquids and the resulting repeated aspiration pneumonia is a dangerous problem. While antibiotics will deal with this initially, repeated pneumonia will create antibiotic resistance and they no longer are effective. When that happens there is no alternative but to have a PEG tube put in to eat and drink through. I’ve lived with nothing by mouth for four years now and I miss normal food more than anything else. I blend all my meals in a Vitamix blender, and do not eat that canned pharma company junk. But it’s a lot of effort to eat this way. The alternative is much worse.

I think you should have his swallowing evaluated at the hospital and have them determine if he is a candidate for some kind of swallowing therapy to see if this can be managed as a first step. Getting a feeding tube isn’t the end of the world, but it’s a lifestyle change of major proportions and requires a mental adaptation from him as well. Pretty sure he won’t like the idea if things go that way, but there are few alternatives.

You don’t want him having a larygectomy and losing his voice. That will not impact his safe swallow issue.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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