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.
Hi Robert, I am so sorry to hear about your jaw surgery that made you go back to the feeding tube. I also was diagnosed with cancer of my right tonsil and had to undergo both radiation and chemo. The treatment has now caused me to suffer from dysphagia as well and has placed me in a feeding tube. I have been done with treatment for almost a year now and still am on the feeding tube, unable to eat any solids or anything other than watery liquids. I have been trying so hard to eat again but I don't know what else to do. If I may ask, how did you teach yourself how to swallow again the first time around?
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.
@maryemma Did you have radiotherapy? I'm afraid these problems are common in head and neck cancer survivors. Bread is difficult because it is too starchy and forms a sticky ball in the mouth. Some people lose their sensitivity to acidic foods and their dry mouth as times goes on. Sour cream can mitigate the acidity in some acidic foods. Wishing you good progress.
I am a year out of treatment for lymph node metastasis from tongue cancer. Have had esophageal stretching twice and am eating better but still have to be careful with certain foods. Especially bread and meat. Still have dry mouth and sensitive to anything acidic. Has anyone else experienced this? Even brushing my teeth is painful.
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.
@alpaca
More incredible than you realize.
In 1996 ,at age 44, I suffered a massive heart attack. The only reason I am still around is because I was already in Intensive Care when I went into cardiac arrest. Prior to this event , my overall health was excellant.
In 1999 I suffered a stroke resulting in partial paralysis to my left side. Over 90% of my muscle control returned after several months of therapy.
There is much more but these are the life threatening medical emergencies I've lived through.
Also have experienced 5 events which normally result in death. Electrocution, serious car accidents etc.
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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Hi Robert, I am so sorry to hear about your jaw surgery that made you go back to the feeding tube. I also was diagnosed with cancer of my right tonsil and had to undergo both radiation and chemo. The treatment has now caused me to suffer from dysphagia as well and has placed me in a feeding tube. I have been done with treatment for almost a year now and still am on the feeding tube, unable to eat any solids or anything other than watery liquids. I have been trying so hard to eat again but I don't know what else to do. If I may ask, how did you teach yourself how to swallow again the first time around?
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1 ReactionJust watched the video
Something I should consider, but I dread having to go there.
Thank you
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1 ReactionNo never
@skoshi and @maryemma
Here is a Mayo Clinic video with information about self-stretching (dilating) the esophagus,
@skoshi Have you had your esophagus stretched (dilated) previously?
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1 ReactionWhat exactly is involved in stretching the esophagus?
@maryemma Did you have radiotherapy? I'm afraid these problems are common in head and neck cancer survivors. Bread is difficult because it is too starchy and forms a sticky ball in the mouth. Some people lose their sensitivity to acidic foods and their dry mouth as times goes on. Sour cream can mitigate the acidity in some acidic foods. Wishing you good progress.
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1 ReactionI am a year out of treatment for lymph node metastasis from tongue cancer. Have had esophageal stretching twice and am eating better but still have to be careful with certain foods. Especially bread and meat. Still have dry mouth and sensitive to anything acidic. Has anyone else experienced this? Even brushing my teeth is painful.
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1 ReactionI was put on Dexamethasone/Nystatin solution..swish 3x daily, spit out. Seems to have helped..although I still get thrush occasionally
@alpaca
More incredible than you realize.
In 1996 ,at age 44, I suffered a massive heart attack. The only reason I am still around is because I was already in Intensive Care when I went into cardiac arrest. Prior to this event , my overall health was excellant.
In 1999 I suffered a stroke resulting in partial paralysis to my left side. Over 90% of my muscle control returned after several months of therapy.
There is much more but these are the life threatening medical emergencies I've lived through.
Also have experienced 5 events which normally result in death. Electrocution, serious car accidents etc.
Thrush is miserable when you have it in your throat. Here's hoping you get some relief soon.