1. < Head & Neck Cancer

Late effect stage 4 tonsil & tongue cancer 18 years ago

Posted by mrsfootdoc @mrsfootdoc, Apr 13 11:41am

I have questions/comments I need some input about which I can’t seem to find. I am 18 years out from surgery, chemo and radiation. I am Blessed. I didn’t have any major late effects until about 5 years ago. I started having trouble swallowing and that progressed to having a paralyzed throat, I have not been able for to swallow for over 3 years. Unfortunately as few years before the cancer I had a gastric bypass so I no longer have a stomach, can’t really absorb anything. I have learned to cook things I can get to go down- mashed potatoes, homemade chicken noodle soup, will cook a roast in instant pot to get the liquid for gravy and so forth. I weighed 90 pounds last summer, but have been able to get up to 100 pounds now. I tried to get the university of Iowa to help me, they refused to give me feeding tube, their excuse was I was “to thin”. I seem to be able to get along. My worst problem is the chronic ulcers in my mouth and throat. That is my question, I use lidocaine viscous all day long. I have SLE lupus and sensitive skin. I take OxyContin for nerve pain. Supposedly all the nerve endings on my tongue and mucosis lining of mouth is totally gone. I have very little saliva. Is anyone out there that are 18 years out? Do you have ulcers in your mouth and what do you do for them to help pain. Any response would be greatly appreciated. Thank You Julie

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jersey3422 | @jersey3422 | Apr 13 9:36pm

My gosh. What a fighter you are. Sorry to hear all of theses things went wrong down the road. I don’t have any advice to offer. Just wanted you to know that we are here and you aren’t alone. Praying 🙏🏼 for some relief for you.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 14 7:49am

That's a lot of suffering for one person @mrsfootdoc. You are blessed to have a positive attitude and the strength to help yourself. My oral ulcers were only during and immediately after the radiation/chemo period. I also used lidocaine gel as well as magic mouthwash for comfort. In 12 years I have not had these symptoms recur but radiation was aimed at the base of skull under my ear, not my throat. A few questions for you: Are you regularly seeing a radiation oncology team member since they have the most experience in dealing with these symptoms? Have you been checked for an oral fungal infection? What does your PCP say about a feeding tube? Have you had speech therapy to try to regain any swallowing function? My suggestions are to ask your PCP about Gabapentin for nerve pain and a saliva substitute. If your salivary glands cannot produce saliva any more then perhaps you will get some healing of ulcers with a saliva substitute. I have not used one (yet) but survive my dry mouth with Biotene gel and spray and Xylimelts at night. Staying well hydrated with water and electrolytes thru the day is very important too. If this is the best that your medical team can do, I might be asking for a referral to get some more opinions on what might help.

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1 reply
kmlnj | @kmlnj | 6 days ago

I am so very sorry to hear you have gone through so very much.
- I do know from my deceased husband's ALS that doctors are very selective about feeding tube candidates. My husband had his inserted long before it was needed.
- are you supplementing your diet with liquid nutrition? I use Kate Farms. You can order it online. This is really important.
- be selective about what you eat. Everything you swallow must have nutritional value. By the end of the day, your total food intake should be highly nutritious. If you don't now you could make your own vegetable smoothies, or buy in supermarket.
- there are mouth washes for oncology. I would suggest you are rinsing your mouth at least 3 times a day. But it is best to consult a doctor who understands oral biology.
- you are an inspiration and I hope you regain your strength and health.
Take care

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mrsfootdoc | @mrsfootdoc | 4 days ago
In reply to @sepdvm "That's a lot of suffering for one person @mrsfootdoc. You are blessed to have a positive..." + (show)
@sepdvm

That's a lot of suffering for one person @mrsfootdoc. You are blessed to have a positive attitude and the strength to help yourself. My oral ulcers were only during and immediately after the radiation/chemo period. I also used lidocaine gel as well as magic mouthwash for comfort. In 12 years I have not had these symptoms recur but radiation was aimed at the base of skull under my ear, not my throat. A few questions for you: Are you regularly seeing a radiation oncology team member since they have the most experience in dealing with these symptoms? Have you been checked for an oral fungal infection? What does your PCP say about a feeding tube? Have you had speech therapy to try to regain any swallowing function? My suggestions are to ask your PCP about Gabapentin for nerve pain and a saliva substitute. If your salivary glands cannot produce saliva any more then perhaps you will get some healing of ulcers with a saliva substitute. I have not used one (yet) but survive my dry mouth with Biotene gel and spray and Xylimelts at night. Staying well hydrated with water and electrolytes thru the day is very important too. If this is the best that your medical team can do, I might be asking for a referral to get some more opinions on what might help.

Jump to this post

Thank you for listening, I have not seen oncology for 16 years. I have had every possible swallowing test available, several different times at different hospitals or clinics. I do have silent aspiration. I also had a menography ? Large, long tube done throat with sensors on it to assess is they can push water I drank down. No activity, paralyzed throat. If food gets in there I can’t push it down. I know different ways to turn my head to help but still involves a lot of choking , throwing up. .. I am able to “huff” what I call it and blow price of food out.
My husband and I went back last year to see if I could possibly get feeding tube. This time the excuse was I was “to thin “ I would have to gain 15 or 20 pounds before they would attempt it. Again Doc-my husband- and I and my PCP agreed that university of Iowa doesn’t really care. Basically again go off and die. Went to ENT2 years ago, he said nothing could be done to help mouth ulcers. Radiation had destroyed all my mucus membranes, also mentioned radiation changes DNA in areas, nothing can be done except for lidocaine. Tried to get into a neurologist to have him check brain scan, lots of memory and dizziness, again was told this could have been affected by radiation so close to brain tissue. He didn’t want to see me told me to go back to ENT. I am just really just giving up. My husband and I ran his podiatry practice, two different offices, for 26 years. We never once turned anyone away for any reason. He at one point was taking care of 9 different nursing homes, in a rural area with some hour away because no other Dr wanted to help them.We treated elderly patients in their home when long term patients and couldn’t get out. I am just whining now but to have did everything possible in our lives for others and then me not being able to get help is despicable. I have no shame in my heart, we did not treat our patients like this. I am just grateful there are people like you out there who understand. And to all the frightened patients who have been given a time limit. I was told surgeons could not get all of cancer tissue. They gave me 1 year time limit. Don’t live your life waiting for something that was told to you would happen. Just live you life happy!
Thank you for listening to me. Julie Hart

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1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | 3 days ago
In reply to @mrsfootdoc "Thank you for listening, I have not seen oncology for 16 years. I have had every..." + (show)
@mrsfootdoc

Thank you for listening, I have not seen oncology for 16 years. I have had every possible swallowing test available, several different times at different hospitals or clinics. I do have silent aspiration. I also had a menography ? Large, long tube done throat with sensors on it to assess is they can push water I drank down. No activity, paralyzed throat. If food gets in there I can’t push it down. I know different ways to turn my head to help but still involves a lot of choking , throwing up. .. I am able to “huff” what I call it and blow price of food out.
My husband and I went back last year to see if I could possibly get feeding tube. This time the excuse was I was “to thin “ I would have to gain 15 or 20 pounds before they would attempt it. Again Doc-my husband- and I and my PCP agreed that university of Iowa doesn’t really care. Basically again go off and die. Went to ENT2 years ago, he said nothing could be done to help mouth ulcers. Radiation had destroyed all my mucus membranes, also mentioned radiation changes DNA in areas, nothing can be done except for lidocaine. Tried to get into a neurologist to have him check brain scan, lots of memory and dizziness, again was told this could have been affected by radiation so close to brain tissue. He didn’t want to see me told me to go back to ENT. I am just really just giving up. My husband and I ran his podiatry practice, two different offices, for 26 years. We never once turned anyone away for any reason. He at one point was taking care of 9 different nursing homes, in a rural area with some hour away because no other Dr wanted to help them.We treated elderly patients in their home when long term patients and couldn’t get out. I am just whining now but to have did everything possible in our lives for others and then me not being able to get help is despicable. I have no shame in my heart, we did not treat our patients like this. I am just grateful there are people like you out there who understand. And to all the frightened patients who have been given a time limit. I was told surgeons could not get all of cancer tissue. They gave me 1 year time limit. Don’t live your life waiting for something that was told to you would happen. Just live you life happy!
Thank you for listening to me. Julie Hart

Jump to this post

Dear Julie, You really are an inspiration. You have lived a life of service and giving and I am so sorry that you have this long term suffering to deal with. I know the value of a podiatrist who will travel to help his patients while caring for my aunt and uncle in their 90s with dementia. I would love to give you a virtual hug for all the good you and your husband have done for our elderly population.
I have one more suggestion for healing your oral ulcers, after years of using Manuka honey for healing wounds on my canine and feline patients. Research it and see if you want to try it as a mouthwash or just holding it in your mouth before swallowing. It stimulates healing and protects against infection and perhaps it might help you. I use it daily as a sweetener in coffee for its healing potential. I buy the weakest Bees and Trees brand on Amazon. It is thick so you might need to mix it with warm water, but the taste is great. I hope you can keep your positive attitude, perhaps gain some weight and find someone to place a stomach tube for you. Be strong and thank you for sharing your story.

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thefarmer | @thefarmer | 2 days ago

Hello Julie .. my throat radiation of 10 years past was 100% effective in killing my toncil and tongue cancer. The radiation doesn't leave peacefully and causes harm that cannot be positively predicted as we would like. You are obviously a fighter and I tip my hat to you. I'm looking at using the manuka honey myself as a treatment to try, as suggested in another reply. I hope you find some relief and for once I'm glad to see the oxys are being put to proper use.

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