Can never eat or drink orally again

58HarleySportsterman

Hello, I received forty doses of radiation for my stage 4 Squamous Cell Carcinoma of the inner tonsel, right half of the tongue, right perotid gland, right corotid artery, and 32 lymphnodes. In addition to wekly does of Erbitux during my initial tretments for my cancer, that was quite an aggressive case at the time. I then underwent one failed chemotherapy treatment after it was discovered that the radiation treatments did not kill (or shrink) the cancer in the tongue. Since surgery was out of the question due to the strutural damage it would have done, and the concern over whether they would even be able to reconstruct that area, I was placed on a two year treatment program of monthly doses of Opdivo. One year into those treatments it appeared the cancer had gone into remission, yet I continue to treat for the recommended two year period. Unfortunately, as a result ot the radiation treatment, I've been left with a lot of damage and issues associated with it.

 

Has anyone who has undergone similar treatments for like cancer of the neck and throat had their esophagus and epiglottis destroyed, in addition to their thyroid gland? To the point that the esophagus is dead and does not sqeeze the food and liquids downward from the mouth to the stomach, or the epiglottis does not seal the trachea correctly, thus allowing food and liquids to aspirate into the lungs in dangerous levels. I was diagnosed with this issue almost two years post radiation treatment, and prior to having the swallow test that resulted in this diagnosis, was constantly choking and gagging on every sip of liquids I drank and food I swallowed. To the point of having to have the Heimlich Maneuver performed on my four different times to save me from choking to death. Another issue I'm experiencing is a constant buildup of phlegm or mucus in the throat that is so thick, that it is sometime almost impossible to clear, and extremely hard to cough up and spit out. Causing me to almost suffocate at times (more often than not). When I do cough it up, it is yellowish in color, and extremely hard (if not impossible) to break up and wash down the drain wiith water. I never had this issue prior to radiation treatment. My doctors seem to have no answers for this symptom, and can only say that it is apparently some type of secretion in the throat as a result of the radiation.

 

Has anyone else experienced this, and can you share what you've gone through and if you found a way to deal with it? I cannot even lay down to sleep at night or I almost choke to death in my sleep. The wife is coonstantly having to wake me up, so I just recently began sleeping sitting up for some relief (and to save my life).

 

 

johnsonbl

No, I've not had treatment to the extent that you have...

I only had 30 treatments and my cancer was HPV+ so my radiation dose was low...  I have thick phlegm in the morning (chunks of yellow gunk) but throughout the day it's just a bit sticky...  I believe this is a standard byproduct of radiation and there is little that can be done about it.  Drinking as much water as possible can help, also staying in humid air might help.  You could try the saltwater and baking soda rinses...that may be helpful and you'd not really be out anything if it didn't work.

I wonder if a humidifying CPAP type mask might help by just keeping your airway more moist...  my phlegm seems worse when my mouth and throat get dry....

 

Good luck.

caregiver wife

Suction Aspirator (Old post)

Sorry to hear you are have such trouble.  Husband also maxed out radiation the entire length of his throat as he, too, was not a candidate for surgery.  We considered the aspirator for husband several years ago.  Found this old post.  The phlegm finally got better, but he too slept in a recliner for quite a while.

https://csn.cancer.org/node/197228

Husband has been on feeding tube for about 9 years now, I guess.  He has in the past year been eating some pureed cream soup and homemade custard.  For years he was on Boost and then Two-Cal canned nutrition through feeding tube.  He went to a speech therapist and got exercises that he did multiple times a day for about two years.  He was eventually able to swallow small sips.  Creamy texture easier than clear liquid. 

The best to you,

Crystal

wbcgaruss

caregiver wife

Just want to celebrate with you folks that your husband can finally swallow some food. Even if it is just custard or cream soup I remember what a great blessing it was just to be able to swallow some food again. And we all started again I believe by swallowing smoothies, pudding, cream soup etc. God bless

58HarleySportsterman

johnsonbl said:

No, I've not had treatment to the extent that you have...

I only had 30 treatments and my cancer was HPV+ so my radiation dose was low...  I have thick phlegm in the morning (chunks of yellow gunk) but throughout the day it's just a bit sticky...  I believe this is a standard byproduct of radiation and there is little that can be done about it.  Drinking as much water as possible can help, also staying in humid air might help.  You could try the saltwater and baking soda rinses...that may be helpful and you'd not really be out anything if it didn't work.

I wonder if a humidifying CPAP type mask might help by just keeping your airway more moist...  my phlegm seems worse when my mouth and throat get dry....

 

Good luck.

Wow! Mine was also HPV. I

Wow! Mine was also HPV+. I wonder why such a difference in the number of treatments, other than my stage 4 Squamous Cell Carinoma must have been far more wide spread and aggressive? I was originally scheduled for only 32 radiation treatments, but when we were down to the last two, my radiation oncologist apparently saw something in the x-rays, etc. that he didn't like and told me that they were adding eight more treatments to do some "patch up work" on me. Those last eight treatments literally burned me inside and out to where I looked like I had third degree burns of the skin on the neck.

I cannot drink water or any other types of fluids due to the aspiration caused by the radiation damage to the esophagus and epiglottis, and the humidity from the C-PAP machine could be an infection risk in the lungs for me.

 

58HarleySportsterman

caregiver wife said:

Suction Aspirator (Old post)

Sorry to hear you are have such trouble.  Husband also maxed out radiation the entire length of his throat as he, too, was not a candidate for surgery.  We considered the aspirator for husband several years ago.  Found this old post.  The phlegm finally got better, but he too slept in a recliner for quite a while.

https://csn.cancer.org/node/197228

Husband has been on feeding tube for about 9 years now, I guess.  He has in the past year been eating some pureed cream soup and homemade custard.  For years he was on Boost and then Two-Cal canned nutrition through feeding tube.  He went to a speech therapist and got exercises that he did multiple times a day for about two years.  He was eventually able to swallow small sips.  Creamy texture easier than clear liquid. 

The best to you,

Crystal

I've been on my feeding tube

I've been on my feeding tube for about a year and a half. Until I had my swallow test as few months ago, it was used to suppliment my limited oral diet by providing Osmolite for nutrition and water/Pedialyte. But once it was learned during te swallow test that I was severely aspirating, the feeding machine became a lifetime fixture on my back to sustain me. Along with anything that I could blenderize and push through a syringe and into my feeding tube. Well, in just the eight or so weeks that I have been living on this new "blenderized" diet of mine, I've developed quite the diet, including breakfast, lunch, a three course dinner, and yummy dessert afterwards. In fact, it has been the first time since I lost all my weight from the cancer, that I've been able to gain any back, and continually gain each week. Did you know that you can take an Arby's reuben sandwich and throw it into a Ninga blender, along with a cup of hot coffee (or your beverage of choice) and make dinner for a person on a feeding tube to enjoy! LOL I'm eating almost everything I loved to eat pre cancer, I just can't taste it now, unless I burb! Haahaahaa  I also do four cartons of Osmolite/day with it.

donfoo

58HarleySportsterman said:

I've been on my feeding tube

I've been on my feeding tube for about a year and a half. Until I had my swallow test as few months ago, it was used to suppliment my limited oral diet by providing Osmolite for nutrition and water/Pedialyte. But once it was learned during te swallow test that I was severely aspirating, the feeding machine became a lifetime fixture on my back to sustain me. Along with anything that I could blenderize and push through a syringe and into my feeding tube. Well, in just the eight or so weeks that I have been living on this new "blenderized" diet of mine, I've developed quite the diet, including breakfast, lunch, a three course dinner, and yummy dessert afterwards. In fact, it has been the first time since I lost all my weight from the cancer, that I've been able to gain any back, and continually gain each week. Did you know that you can take an Arby's reuben sandwich and throw it into a Ninga blender, along with a cup of hot coffee (or your beverage of choice) and make dinner for a person on a feeding tube to enjoy! LOL I'm eating almost everything I loved to eat pre cancer, I just can't taste it now, unless I burb! Haahaahaa  I also do four cartons of Osmolite/day with it.

good to hear

I was thinking feeding tube until I saw your update. It is a big change physically and mentally to adjust to need a tube for all your nutrition to stay alive but as you have experienced, it actually can improve your health and state of mind. Hang in there as many have done this for years and still here enjoying life.

caregiver wife

wbcgaruss said:

caregiver wife

Just want to celebrate with you folks that your husband can finally swallow some food. Even if it is just custard or cream soup I remember what a great blessing it was just to be able to swallow some food again. And we all started again I believe by swallowing smoothies, pudding, cream soup etc. God bless

Thank you

Sometimes he tastes food and spits it out, just for the "taste".  I am still amazed at how well he has taken every step.  I had two cancer sugeries is 2001.  He had open heart surgery after a heart attack a few years later.  We have been there for each other, and consider every single day a blessing.  It is amazing what you can be thankful for, after facing the alternative.

dnelson964

There is hope you can eat and drink again...

       In early 2016 I was also treated for a T4 squamous cell cancer but it was in my left sinus. I was scheduled for chemo with erbitux and cisplatin followed by 40 treatments of radiation. As there was a chance I might lose my left eye I researched and consulted with a Proton treatment facility also. My treatments next were switched to include Proton for my second half of the 40 or 20 treatments which I was glad I did. It was much easier to handle and less surrounding good tissue damage. After the first 4 weeks of radiation my mouth,throat, tongue and left palate were burned severely and I had to stop treatment for half a week and placed on pain meds. I never expected this to happen as the Doc's do not tell you. After all was concluded I also Had trouble swallowing and getting fluids down normally. I was also radiated along my left side neck nodes. It seemed the left side throat muscles were not working normally anymore. I also lost a few upper teeth, developed an opening in my face into my sinus, and one between the left sinus and nasal passage. loss of the teeth and part of my upper palate now created an opening also into my mouth. This created loss of the normal suction we have that helps pull the fluids and food down into the stomach after chewing and swallowing. At one point I developed some fluid into my lungs and had to be treated for pneumonia which followed. No fun. 

To help correct this air suction / swallowing problem I was fitted with an obturator and used bandages to close my face opening for better air tight function. Drinking I found easier with a straw which also was a good test for suction strength. If you can not draw in fluids easily you need to check for where you might have an air tight problem loss and fix it. I found aloe vera drink was the smoothest and easiest to drink down. Most meals I blended in a bullet blender with a bottle of boost so I could get it down

Later I had a facial prosthetic made for my face which I wear daily. I am about 3 years post radiation treatment now and still cancer free. Was told I am a rare case as many patients with stage 4 have the cancer return within 2 yrs. I can explain more about what I did to help make sure the cancer did not return if anyone wants that info. If you have a squamous cancer that is surface you can get to, you can buy some CURADERM topical cream online which works well to kill it.

I never used a feeding tube as I wanted to live a more normal life if possible. I make a breakfast bullet drink with 1 Boost drink added some fresh kale, 2 eggs, protein powder and a couple strawberries and or blue berries. I add a couple (3-4) apricot seeds for the B17. No straw anymore as I have normal swallowing power back. Half a sandwich at lunch or avocado. Chicken, mashed sweet potato, soft asparagus and apple sauce dinner.

I remain on a daily small doseage of Methadone 5mg and gabapentin 300mg 2x-3x/day which keeps any lingering pain in check well. My pain MD put me on that and it works great with no drowsy effects.

I hope I might have given you some good info here.

Good luck going forward.