In 2009 I discovered a lump in my throat. I was diagnosed as having squamous cell carcinoma of my left tonsil. I choose the University of Chicago for my treatment. I agreed to partake in a clinical trial that called for 50 radiation treatments (7500 rads per exposure) and chemo. I left the hospital in November of 2009. Cancer free. I remain cancer free today.
However, 50×7500 rads of exposure burned me up inside and outside. I discharged from the hospital looking like I just survived Hiroshima. This was a huge ordeal. My epiglottis stopped functioning as a side effect of the radiation. I was further diagnosed as suffering from dysphagia due radiation treatment. High potential for aspiration kept me on a feeding tube for almost 3 years.
Somehow I was able to teach myself to swallow again and had been enjoying a limited diet until January of last year.
Seems I developed ORN in my left lower jaw. Needless to say the jaw finally fractured.
In April of 2018 I underwent a surgery to remove a dead and diseased portion of my lower left jaw. It was then replaced with a section of my left fibula. This was a huge operation that took about 10 hours. This miracle was accomplished at Loyola Hospital.
The area around my mouth is now numb because nerves were severed during the surgery. I am once again on a food tube and this time I believe it's permanent.
Food for thought concerning your treatment.
It is March 10, 2019. My sore throat has returned with a vengeance. I am again using clotrimazole, hoping it will kill the thrush and stop the soreness. I am having extreme difficulty swallowing and problems with lethargy, some days sleeping all day. I am extremely miserable with this sore throat.
Jim, I'm so sorry to hear that the sore throat monster has returned big and more fierce than ever. I'm tagging @karly@skoshi@alpaca to return and commiserate. I can imagine that you're miserable. When did you start with the clotrimazole again? Hopefully it will have an effect soon.
It is March 10, 2019. My sore throat has returned with a vengeance. I am again using clotrimazole, hoping it will kill the thrush and stop the soreness. I am having extreme difficulty swallowing and problems with lethargy, some days sleeping all day. I am extremely miserable with this sore throat.
In 2009 I discovered a lump in my throat. I was diagnosed as having squamous cell carcinoma of my left tonsil. I choose the University of Chicago for my treatment. I agreed to partake in a clinical trial that called for 50 radiation treatments (7500 rads per exposure) and chemo. I left the hospital in November of 2009. Cancer free. I remain cancer free today.
However, 50×7500 rads of exposure burned me up inside and outside. I discharged from the hospital looking like I just survived Hiroshima. This was a huge ordeal. My epiglottis stopped functioning as a side effect of the radiation. I was further diagnosed as suffering from dysphagia due radiation treatment. High potential for aspiration kept me on a feeding tube for almost 3 years.
Somehow I was able to teach myself to swallow again and had been enjoying a limited diet until January of last year.
Seems I developed ORN in my left lower jaw. Needless to say the jaw finally fractured.
In April of 2018 I underwent a surgery to remove a dead and diseased portion of my lower left jaw. It was then replaced with a section of my left fibula. This was a huge operation that took about 10 hours. This miracle was accomplished at Loyola Hospital.
The area around my mouth is now numb because nerves were severed during the surgery. I am once again on a food tube and this time I believe it's permanent.
Food for thought concerning your treatment.
Fortunately, for me, my treatment was less intense. I was given 35 doses of radiation directed very targetedly at the source of my cancer. I am only 6 weeks after the radiation and am beginning to recover from its side effects. Hopefully, I won't have to endure the long term issues you are encountering. Thank you for your input.
In 2009 I discovered a lump in my throat. I was diagnosed as having squamous cell carcinoma of my left tonsil. I choose the University of Chicago for my treatment. I agreed to partake in a clinical trial that called for 50 radiation treatments (7500 rads per exposure) and chemo. I left the hospital in November of 2009. Cancer free. I remain cancer free today.
However, 50×7500 rads of exposure burned me up inside and outside. I discharged from the hospital looking like I just survived Hiroshima. This was a huge ordeal. My epiglottis stopped functioning as a side effect of the radiation. I was further diagnosed as suffering from dysphagia due radiation treatment. High potential for aspiration kept me on a feeding tube for almost 3 years.
Somehow I was able to teach myself to swallow again and had been enjoying a limited diet until January of last year.
Seems I developed ORN in my left lower jaw. Needless to say the jaw finally fractured.
In April of 2018 I underwent a surgery to remove a dead and diseased portion of my lower left jaw. It was then replaced with a section of my left fibula. This was a huge operation that took about 10 hours. This miracle was accomplished at Loyola Hospital.
The area around my mouth is now numb because nerves were severed during the surgery. I am once again on a food tube and this time I believe it's permanent.
Food for thought concerning your treatment.
I have posted to this blog a few times in the past. I was diagnosed with squamous cell in my throat, close to my left tonsil. I decided to go with the 35 radiation treatment, which ended in early January. It had numerous difficult side effects, but most were mild compared with the aftermath, through which I am still enduring. My sore throat is finally abating. To add to the issues, I also developed thrush which did not respond to the first antibiotic my radiation doctor prescribed, so my encologist decided to try clotrimazole which had immediate results. I will not know for certain if the radiation destroyed the cancer for a couple of more weeks.
I have posted to this blog a few times in the past. I was diagnosed with squamous cell in my throat, close to my left tonsil. I decided to go with the 35 radiation treatment, which ended in early January. It had numerous difficult side effects, but most were mild compared with the aftermath, through which I am still enduring. My sore throat is finally abating. To add to the issues, I also developed thrush which did not respond to the first antibiotic my radiation doctor prescribed, so my encologist decided to try clotrimazole which had immediate results. I will not know for certain if the radiation destroyed the cancer for a couple of more weeks.
To all of you who have suffered with esophageal cancer my heart goes out to you. My husband was diagnosed Aug 2016 with it. He had 4 strong rounds of chemo then he had his stomach stretched to recreate his esophagus.(1/2017) Within 3 months afterwards he was having a problem swallowing. Fortunately he still had the jtube. He had 6 dilations from March to July. The doctor couldn’t understand why he couldn’t swallow. Finally a stint was placed in his throat. Then he couldn’t breathe they removed the stint because it was being covered by scar tissue then when it was removed both of his vocal folds were paralyzed and then a tracheostomy. At this time we were told there was no cancer. I kept asking this. But thinking back no one really checked. Then we find out after being sent to Stanford the end of July within the scar tissue There was cancer!!! He has not had anything to eat or drink by mouth since. It has been mentioned that if he can be cancer free they will place a stint so that he could eat and swallow his spit. The doctor at Stanford even mentioned another type of surgery but His PETs keep showing up with a little cancer here and there. Then chemo or radiation. The last doctor we saw told us that his cancer was high in his throat where usually it is lower. Then she explains that the longer you stretch a rubber band it is smaller and tighter so my question is, why did he have this surgery since it was so high up? Deep down I feel there were mistakes made along the way. If I had to do this again I would get a 2nd and 3rd opinion. It is just that when you hear cancer you freak out! My husband was very healthy so we never saw hospitals for anything! This was and is all new to us. It is so sad to see him just sit my heart breaks. He can’t swallow, he can hardly talk. He is constantly battling with this trach. I wished I could have said way back then WAIT we need another opinion or two. Good luck to you all and my prayers are with you and your healing. My thought is that esophageal cancer comes on slowly you may have it for quite awhile before you are actually diagnosed so take the time and get that 2nd or 3rd opinion. Ask a lot of questions.
I didn't have that problem, but have also heard of stretching the esophagus as a remedy for what you describe. Your ENT should be able to direct you. Good luck.
Hello @keith123 I am not aware of scar tissue removal but have heard of people having their esophagus stretched to help them swallow. I assume you are seeing a speech/swallow pathologist and have had swallowing tests. I know this is a terrible problem for many head and neck cancer patients who have had radiation in the throat area. My surgery and radiation was to the front part of my mouth so I can swallow all right but can't bite or chew so have to have very soft foods. It is certainly worth asking around to see what treatment is out there.
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This is an incredible story. I think radiotherapy is a lot more targeted these days.
Jim, I'm so sorry to hear that the sore throat monster has returned big and more fierce than ever. I'm tagging @karly @skoshi @alpaca to return and commiserate. I can imagine that you're miserable. When did you start with the clotrimazole again? Hopefully it will have an effect soon.
It is March 10, 2019. My sore throat has returned with a vengeance. I am again using clotrimazole, hoping it will kill the thrush and stop the soreness. I am having extreme difficulty swallowing and problems with lethargy, some days sleeping all day. I am extremely miserable with this sore throat.
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Helpful -
Hug
2 ReactionsFortunately, for me, my treatment was less intense. I was given 35 doses of radiation directed very targetedly at the source of my cancer. I am only 6 weeks after the radiation and am beginning to recover from its side effects. Hopefully, I won't have to endure the long term issues you are encountering. Thank you for your input.
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Like -
Helpful -
Hug
1 ReactionIn 2009 I discovered a lump in my throat. I was diagnosed as having squamous cell carcinoma of my left tonsil. I choose the University of Chicago for my treatment. I agreed to partake in a clinical trial that called for 50 radiation treatments (7500 rads per exposure) and chemo. I left the hospital in November of 2009. Cancer free. I remain cancer free today.
However, 50×7500 rads of exposure burned me up inside and outside. I discharged from the hospital looking like I just survived Hiroshima. This was a huge ordeal. My epiglottis stopped functioning as a side effect of the radiation. I was further diagnosed as suffering from dysphagia due radiation treatment. High potential for aspiration kept me on a feeding tube for almost 3 years.
Somehow I was able to teach myself to swallow again and had been enjoying a limited diet until January of last year.
Seems I developed ORN in my left lower jaw. Needless to say the jaw finally fractured.
In April of 2018 I underwent a surgery to remove a dead and diseased portion of my lower left jaw. It was then replaced with a section of my left fibula. This was a huge operation that took about 10 hours. This miracle was accomplished at Loyola Hospital.
The area around my mouth is now numb because nerves were severed during the surgery. I am once again on a food tube and this time I believe it's permanent.
Food for thought concerning your treatment.
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4 Reactions@jimchardy
I have posted to this blog a few times in the past. I was diagnosed with squamous cell in my throat, close to my left tonsil. I decided to go with the 35 radiation treatment, which ended in early January. It had numerous difficult side effects, but most were mild compared with the aftermath, through which I am still enduring. My sore throat is finally abating. To add to the issues, I also developed thrush which did not respond to the first antibiotic my radiation doctor prescribed, so my encologist decided to try clotrimazole which had immediate results. I will not know for certain if the radiation destroyed the cancer for a couple of more weeks.
-
Like -
Helpful -
Hug
1 ReactionTo all of you who have suffered with esophageal cancer my heart goes out to you. My husband was diagnosed Aug 2016 with it. He had 4 strong rounds of chemo then he had his stomach stretched to recreate his esophagus.(1/2017) Within 3 months afterwards he was having a problem swallowing. Fortunately he still had the jtube. He had 6 dilations from March to July. The doctor couldn’t understand why he couldn’t swallow. Finally a stint was placed in his throat. Then he couldn’t breathe they removed the stint because it was being covered by scar tissue then when it was removed both of his vocal folds were paralyzed and then a tracheostomy. At this time we were told there was no cancer. I kept asking this. But thinking back no one really checked. Then we find out after being sent to Stanford the end of July within the scar tissue There was cancer!!! He has not had anything to eat or drink by mouth since. It has been mentioned that if he can be cancer free they will place a stint so that he could eat and swallow his spit. The doctor at Stanford even mentioned another type of surgery but His PETs keep showing up with a little cancer here and there. Then chemo or radiation. The last doctor we saw told us that his cancer was high in his throat where usually it is lower. Then she explains that the longer you stretch a rubber band it is smaller and tighter so my question is, why did he have this surgery since it was so high up? Deep down I feel there were mistakes made along the way. If I had to do this again I would get a 2nd and 3rd opinion. It is just that when you hear cancer you freak out! My husband was very healthy so we never saw hospitals for anything! This was and is all new to us. It is so sad to see him just sit my heart breaks. He can’t swallow, he can hardly talk. He is constantly battling with this trach. I wished I could have said way back then WAIT we need another opinion or two. Good luck to you all and my prayers are with you and your healing. My thought is that esophageal cancer comes on slowly you may have it for quite awhile before you are actually diagnosed so take the time and get that 2nd or 3rd opinion. Ask a lot of questions.
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7 ReactionsI didn't have that problem, but have also heard of stretching the esophagus as a remedy for what you describe. Your ENT should be able to direct you. Good luck.
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1 ReactionHello @keith123 I am not aware of scar tissue removal but have heard of people having their esophagus stretched to help them swallow. I assume you are seeing a speech/swallow pathologist and have had swallowing tests. I know this is a terrible problem for many head and neck cancer patients who have had radiation in the throat area. My surgery and radiation was to the front part of my mouth so I can swallow all right but can't bite or chew so have to have very soft foods. It is certainly worth asking around to see what treatment is out there.
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Hug
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