Struggling with shortness of breath and lump in throat

Posted by srm @srm, Sep 3 12:01pm

I’m new here so still a little lost.
After two chemo sessions and 33 radiation treatments to my throat I am finding every day more of a struggle. Now 8 weeks post radiation I am feeling worse than ever. The sore lump is on the opposite side of my treated tumour.
I had my feeding tube removed 3 weeks post treatment but am still on liquids. I have now lost 50 pounds.
The lump in my throat makes it very difficult to swallow and my stressed breathing is just about putting me over the edge.
Has anyone else had breathing issues after treatment?

Hello, @srm, I had radiation for Pyriform Sinus Cancer which is located by the vocal cords. Didn't do Chemo, because doctor said it would only increase cancer eradication by about 1%, yet could cause severe hearing loss! That was over almost two years ago. During the 2020 treatments, I developed Covid. That was a nightmare of coughing my guts out for months–even breaking ribs from force of the coughs. After that, the mucous in my lungs would not loosen so it was one year of antibiotics, ER visits, hospitalizations, on and on. The doctors could not figure out why I experienced shortness-of-breath attacks that left me feeling I could not get air in. In 2021, I had both Covid vaccinations Two weeks after the second vaccination, I came down with Covid again. Back in the hospital I went, whereupon I was informed after a scoping that my vocal cords were bilaterally paralyzed. I had many scopes done the entire year, and not one ENT told me they were frozen. So, I do not know to this day if Covid, the radiation, or a combination of both paralyzed my vocal cords. I was so short-of-breath all the time, I couldn't even bend down to pick a dandelion without feeling like drowning. The only thing that saved me was Over-The-Counter Primetene Mist Epinephrine 0.125 mg. Without this miracle spray, I would definitely be dead. None of he inhalers the doctors kept prescribing did any good. Although the Primetene greatly helped, I ended up getting a Tracheotomy just this last June. I can finally breathe, but that same mucous that would not come up before the Trach, is now constantly coming up. It is alot of maintenance. I am praying that my vocal cords will begin functioning properly once again, but the odds are not favorable in that regard. My advice to you is to get many opinions until you figure out why you are short-of-breath. Have your vocal cords checked out with a scoping/camera. I am sorry to say that many people suffer from this malady after having radiation to the throat area. Good luck to you. Stay close to God.

REPLY
@thomason

Hello, @srm, I had radiation for Pyriform Sinus Cancer which is located by the vocal cords. Didn't do Chemo, because doctor said it would only increase cancer eradication by about 1%, yet could cause severe hearing loss! That was over almost two years ago. During the 2020 treatments, I developed Covid. That was a nightmare of coughing my guts out for months–even breaking ribs from force of the coughs. After that, the mucous in my lungs would not loosen so it was one year of antibiotics, ER visits, hospitalizations, on and on. The doctors could not figure out why I experienced shortness-of-breath attacks that left me feeling I could not get air in. In 2021, I had both Covid vaccinations Two weeks after the second vaccination, I came down with Covid again. Back in the hospital I went, whereupon I was informed after a scoping that my vocal cords were bilaterally paralyzed. I had many scopes done the entire year, and not one ENT told me they were frozen. So, I do not know to this day if Covid, the radiation, or a combination of both paralyzed my vocal cords. I was so short-of-breath all the time, I couldn't even bend down to pick a dandelion without feeling like drowning. The only thing that saved me was Over-The-Counter Primetene Mist Epinephrine 0.125 mg. Without this miracle spray, I would definitely be dead. None of he inhalers the doctors kept prescribing did any good. Although the Primetene greatly helped, I ended up getting a Tracheotomy just this last June. I can finally breathe, but that same mucous that would not come up before the Trach, is now constantly coming up. It is alot of maintenance. I am praying that my vocal cords will begin functioning properly once again, but the odds are not favorable in that regard. My advice to you is to get many opinions until you figure out why you are short-of-breath. Have your vocal cords checked out with a scoping/camera. I am sorry to say that many people suffer from this malady after having radiation to the throat area. Good luck to you. Stay close to God.

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I’m so sorry to hear of your ongoing struggles. You have had way more than your share. I had a CT scan of my chest and another on my head and neck this past Monday. Possibly get some answers when I meet with my oncologist next Wednesday.
Thanks for the advice. I won’t let up until I get some answers.

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@srm

I’m so sorry to hear of your ongoing struggles. You have had way more than your share. I had a CT scan of my chest and another on my head and neck this past Monday. Possibly get some answers when I meet with my oncologist next Wednesday.
Thanks for the advice. I won’t let up until I get some answers.

Jump to this post

I can only tell you what my bf has experienced and what his symptoms have been with the treatments he has taken and where he now with current treatments, since his diagnosis started a year ago in March 2020.
He was in the hospital for something unrelated to cancer. However, when he was in hospital he said is the left side of my neck larger, it feels funny. I told him a little bit.
But that lil but went away before we left hospital.
Then it showed up again. Luckily, he has many doctor friends. His doctor friend told him he needs to call his family doctor and get into hospital for a mri scan if his neck and throat. And he needs to see and ENT doc right away.
Well, there was cancer in the back of his throat ( that’s was the mother ship) and it metatisized to the left side of his neck. The biopsy was performed and it was cancer.
He got into Mayo right away. The preformed surgery, extracted the tumor from back of throat, opened up both sides of his neck and took out the lymph nodes. Right side was clear( they still had removed nodes). He took 6 weeks of radiation and 6 weeks of cisplatin. Lost all his taste buds and saliva ( since has not come back). He has to put lotion on his neck 3 times a day so skin won’t turn to leather or get stiff and has a special fluoride everyday so he can try to prevent from loosing his teeth(all from the proton radiation). Yes, he had shortness of breath and very tired.
He did not opt for feeding tube, and boy oh boy was it difficult for him to swallow. However, he’s a fighter and he ate cause he knew he had too. I made everything as soupy and puréed the best I could. I knew he needed the calories.
So, after those treatments he was told he had a 98% cure rate. Then 3 months later they performed a pet scan. On the end of his wind pipe on a single lymph node ever so lightly lit up.
So, they did radiation and started him on Keytruda (immune chemo therapy drug) in September 2020.
He’s been on Keytruda fir just about a year. He was told they will take him off Keytruda after 2 years.
His side effects are really bad. He has them all except heart pain. He’s has shortness of breath, balance is so bad he cannot have a conversation unless he’s sitting(he has to concentrate on standing). Headaches, stomach hurts, nausea at times, tired, huge anxiety, depression, frustration, diarrhea for months, huge weight loss( hes 69 looked like Superman before 240lbs 34” waist, worked out, ate the perfect diet). He’s now under 190 lbs.
He was told if he gets off of Keytruda the cancer will come right back.
So this is what we have done.
I have read a lot of things and we are adding other supplements that may help him feel a lil better for sure maybe?
He has an appt with integrated doc and I’m hoping they can get something that will give him a boost nutrient wise to help him.
What bothers him the most, is he was so physically fit, he no longer can do those things he did before. We have a second home in the mtns, that home is a lot of work. We have tall pines that are 175ft tall that we always took down ourselves. He can no longer do this. I don’t trust him with a chainsaw when his balance is so bad.
Now in order for you to understand the type of cancer he has is why he’s in this situation today. And hopefully this will help someone else that you know.
When he was 26 years old, he was well to do. And in his era partied and had many sexual partners. At the age he got genital warts. Which he went to the doc and got cured. Well, that is a virus. It payed dormant in his body for 42 years. Then it pop it’s ugly face in March 2020.
If he would have known this, and on his late 50’s and early 60’s, all this could have been prevented. If he would have had his throat scoped every 3-6 months and pet scans this would have been caught before it went to his neck. And he would not be where he is today.
So anytime that had has genital warts had that virus. There is a vaccine. But if you’d over 40, your out of luck. So you need to be scoped etc.
This is his story and where’s he’s at right now. He has had pets and where just recently there was a flicker at the side of his left neck again but not attached to a lymph node.
They ruled it out as cancer, however that’s how keytruda works, it blocks the cancer. So it will show dark when he had hus next pets scan in October. This happened with his lung awhile back.
What I was told the lymph node at the end of his windpipe never dissolved, but is dark, also told back them that it he goes of Keytruda that it could come back to life.
So end if 2 years there is nothing more they can offer.
So, he may go in remission or not? We don’t know. He’s on God’s watch, and there’s nothing wrong with that either.
I personally could never endured what I have watch him go through. He is the strongest and bravest person I know. And I’m so glad he is part of my life. He’s a fighter so I stand with him to keep fighting.
This is his path to walk it how he chooses, and I’m glad I am able to share this with him.

REPLY
@lori58

I can only tell you what my bf has experienced and what his symptoms have been with the treatments he has taken and where he now with current treatments, since his diagnosis started a year ago in March 2020.
He was in the hospital for something unrelated to cancer. However, when he was in hospital he said is the left side of my neck larger, it feels funny. I told him a little bit.
But that lil but went away before we left hospital.
Then it showed up again. Luckily, he has many doctor friends. His doctor friend told him he needs to call his family doctor and get into hospital for a mri scan if his neck and throat. And he needs to see and ENT doc right away.
Well, there was cancer in the back of his throat ( that’s was the mother ship) and it metatisized to the left side of his neck. The biopsy was performed and it was cancer.
He got into Mayo right away. The preformed surgery, extracted the tumor from back of throat, opened up both sides of his neck and took out the lymph nodes. Right side was clear( they still had removed nodes). He took 6 weeks of radiation and 6 weeks of cisplatin. Lost all his taste buds and saliva ( since has not come back). He has to put lotion on his neck 3 times a day so skin won’t turn to leather or get stiff and has a special fluoride everyday so he can try to prevent from loosing his teeth(all from the proton radiation). Yes, he had shortness of breath and very tired.
He did not opt for feeding tube, and boy oh boy was it difficult for him to swallow. However, he’s a fighter and he ate cause he knew he had too. I made everything as soupy and puréed the best I could. I knew he needed the calories.
So, after those treatments he was told he had a 98% cure rate. Then 3 months later they performed a pet scan. On the end of his wind pipe on a single lymph node ever so lightly lit up.
So, they did radiation and started him on Keytruda (immune chemo therapy drug) in September 2020.
He’s been on Keytruda fir just about a year. He was told they will take him off Keytruda after 2 years.
His side effects are really bad. He has them all except heart pain. He’s has shortness of breath, balance is so bad he cannot have a conversation unless he’s sitting(he has to concentrate on standing). Headaches, stomach hurts, nausea at times, tired, huge anxiety, depression, frustration, diarrhea for months, huge weight loss( hes 69 looked like Superman before 240lbs 34” waist, worked out, ate the perfect diet). He’s now under 190 lbs.
He was told if he gets off of Keytruda the cancer will come right back.
So this is what we have done.
I have read a lot of things and we are adding other supplements that may help him feel a lil better for sure maybe?
He has an appt with integrated doc and I’m hoping they can get something that will give him a boost nutrient wise to help him.
What bothers him the most, is he was so physically fit, he no longer can do those things he did before. We have a second home in the mtns, that home is a lot of work. We have tall pines that are 175ft tall that we always took down ourselves. He can no longer do this. I don’t trust him with a chainsaw when his balance is so bad.
Now in order for you to understand the type of cancer he has is why he’s in this situation today. And hopefully this will help someone else that you know.
When he was 26 years old, he was well to do. And in his era partied and had many sexual partners. At the age he got genital warts. Which he went to the doc and got cured. Well, that is a virus. It payed dormant in his body for 42 years. Then it pop it’s ugly face in March 2020.
If he would have known this, and on his late 50’s and early 60’s, all this could have been prevented. If he would have had his throat scoped every 3-6 months and pet scans this would have been caught before it went to his neck. And he would not be where he is today.
So anytime that had has genital warts had that virus. There is a vaccine. But if you’d over 40, your out of luck. So you need to be scoped etc.
This is his story and where’s he’s at right now. He has had pets and where just recently there was a flicker at the side of his left neck again but not attached to a lymph node.
They ruled it out as cancer, however that’s how keytruda works, it blocks the cancer. So it will show dark when he had hus next pets scan in October. This happened with his lung awhile back.
What I was told the lymph node at the end of his windpipe never dissolved, but is dark, also told back them that it he goes of Keytruda that it could come back to life.
So end if 2 years there is nothing more they can offer.
So, he may go in remission or not? We don’t know. He’s on God’s watch, and there’s nothing wrong with that either.
I personally could never endured what I have watch him go through. He is the strongest and bravest person I know. And I’m so glad he is part of my life. He’s a fighter so I stand with him to keep fighting.
This is his path to walk it how he chooses, and I’m glad I am able to share this with him.

Jump to this post

Your bf has gone through a lot. I have been struggling with all the normal side effects. Mucositis, swallowing, dry mouth, sores in mouth and throat, fatigue etc. I am only 8 weeks post radiation and it seems as though I will have a lot to deal with going forward. Sometimes I think it is harder to be on the sidelines watching a loved one suffer than to be the one going through the pain and suffering. I really feel bad for my wife of 41 years. She feels so helpless yet there is nothing she can do except be there at my side.
Hopefully your friend will soon find some relief. He is lucky to have you.

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Hi @srm, I will also add my welcome. I think @alpaca @jeffk and @loli may have some tips to add to this discussion for you as well.

Srm, have you had any rehab or therapy to help with breathing?

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Hi @colleenyoung
So far no rehab or therapy. I’m meeting with my oncologist and team on Wednesday and am hoping for some answers/direction.

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@srm

Hi @colleenyoung
So far no rehab or therapy. I’m meeting with my oncologist and team on Wednesday and am hoping for some answers/direction.

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Hi srm, what did you learn at your last appointment? What are the next steps?

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Hi @colleenyoung
Basically I have been told to ride it out. Apparently everyone is different and for some, these types of symptoms could last for several months.
I saw a lung specialist yesterday. He will keep an eye on a couple of abnormalities in my lungs. I have another CT scan in October so will follow up after that.
Meanwhile, I endure the pain of my sores in my mouth and throat. I guess transitioning to soft foods is off the menu for a while. Too painful. I will continue with my liquid diet and weight loss for now.

REPLY
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