6 years out Base of tongue cancer

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6 years out Base of tongue cancer

by HaroldU on Wed Jul 19, 2017 10:50 AM

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It will 6 years next month that I had 44 Radiation treatments for base of tongue cancer. Yes...the HPV virus can and will cause cancer. But here's the problem (s). First of all...remember everyone is different, this is what "I'm" dealing with. Fatigue, yes..doctors are looking for "other" reasons for this. PAIN...lower jaw up the right side of my head. Pain meds help me eat...but physicians are "reluctant" to prescribe.....all because these stupid ass people in the world have become addicted to opiates. Thanks! This really helps a "chronic pain" cancer survivor patient. Swallowing problems, dry mouth, and most of all...the teeth. They can and will break, shatter, disinagrate while just eating mac and cheese. Started with 32 teeth now I'm down to 14 and 4 of them are bad. I need some info as to what "other" people are doing with this situation. Please advise ....as I'm running out of options and teeth.

RE: 6 years out Base of tongue cancer

by PopPop on Wed Jul 19, 2017 03:10 PM

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Harold,

Glad to see you are a 6 yr survivor, but sorry that you are dealing with some of the same issues I have as well. 

About the teeth, yes, they are brittle for sure and I, like you had a tooth shatter eating Cheerios. One survivor on another site CSN (Cancer Survivors Network) not sure if I can mention them here, but we are here to help each other.

His name is SASH and last year went thru the process of getting posts placed in his jaw so he could get teeth. He would be a good source of information for you and what he had to deal with to get his teeth. He had to do a series of Hyperbaric Chamber dives before the implant of the posts followed by some more dives after the procedure.

He had similiar number of Radiation treatments, maybe a few more. I hope that may be of some help to you. He is close to being a 20 yr survivor. 

My Best to You and Everyone Here

RE: 6 years out Base of tongue cancer

by HaroldU on Wed Jul 19, 2017 06:42 PM

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Pop Pop, Thanks for the response...appreciative. Yes...we are "here" to help or at least give some insight to finding a road to quality of life. Hyper baric was a discussion I had with my oncologist a few years back. One of the problems I have is "ear problems" my whole life. Heavy wax, sinus and ear canal problems that has eliminated that possible treatment. I was about to take a chance with it...at one time, but side effects from that procedure sealed the answer...no... I can't take the chance. Ear drums have been blown, eyes have been destroyed. So.....I'm still looking for some relief. Thanks again...I have been on the CSN site...but honestly it's been a while. Thanks for the reminder...I WILL check it out.

RE: 6 years out Base of tongue cancer

by Shirleyperez on Fri Oct 20, 2017 12:21 PM

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Has anyone ever been able to receive dental coverage when teeth go bad from radiation? Doesn’t seem fair. I have spent thousands?

RE: 6 years out Base of tongue cancer

by virginia57 on Fri Oct 20, 2017 06:52 PM

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On Jul 19, 2017 3:10 PM PopPop wrote:

Harold,

Glad to see you are a 6 yr survivor, but sorry that you are dealing with some of the same issues I have as well. 

About the teeth, yes, they are brittle for sure and I, like you had a tooth shatter eating Cheerios. One survivor on another site CSN (Cancer Survivors Network) not sure if I can mention them here, but we are here to help each other.

His name is SASH and last year went thru the process of getting posts placed in his jaw so he could get teeth. He would be a good source of information for you and what he had to deal with to get his teeth. He had to do a series of Hyperbaric Chamber dives before the implant of the posts followed by some more dives after the procedure.

He had similiar number of Radiation treatments, maybe a few more. I hope that may be of some help to you. He is close to being a 20 yr survivor. 

My Best to You and Everyone Here

A 20 year survivor is someone i need to speak to. My husband was a plumber and rebuilt cars. SNUC is so scary and i want to know what i can do to make sure my husband can live as long as possible with this. And if he is taking supplaments or what?

Any information will be helpful. Thank you, Virginia

RE: 6 years out Base of tongue cancer

by JohnnyO on Wed Oct 25, 2017 02:53 PM

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I've never tried, but I agree that insurance should cover it.  I any other organ/body part were damaged by the radiation, your insurance would cover it.  Teeth are generally not subject to coverage because they are so susceptible to decay with improper maintenance, but this is not a maintenance issue.

If I end up with teeth issues due to radiation, I would push my doctor and the insurance companies for covering it.  It won't be easy, but I think it's possible.

RE: 6 years out Base of tongue cancer

by Proxielocks on Thu Oct 26, 2017 03:56 AM

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On Jul 19, 2017 10:50 AM HaroldU wrote:

It will 6 years next month that I had 44 Radiation treatments for base of tongue cancer. Yes...the HPV virus can and will cause cancer. But here's the problem (s). First of all...remember everyone is different, this is what "I'm" dealing with. Fatigue, yes..doctors are looking for "other" reasons for this. PAIN...lower jaw up the right side of my head. Pain meds help me eat...but physicians are "reluctant" to prescribe.....all because these stupid ass people in the world have become addicted to opiates. Thanks! This really helps a "chronic pain" cancer survivor patient. Swallowing problems, dry mouth, and most of all...the teeth. They can and will break, shatter, disinagrate while just eating mac and cheese. Started with 32 teeth now I'm down to 14 and 4 of them are bad. I need some info as to what "other" people are doing with this situation. Please advise ....as I'm running out of options and teeth.

So sorry, my husband has been going through it now since being diagnosed in December 2008. His teeth are falling out and this could have been pervented if the doctor had told him that he should pull his teeth before starting the radiation treatments. Now it is to late and they cannot pull them because they said that his gums would never heal and could get an infection. He was on a feeding tube when he started treatments in Feb 2009 for eighteen months. He was doing pretty good for about five years and was back to eating pretty good. Then he got to where he had a hard time swallowing anything. If he ate any food he would choke on his food and asperate. We went to UCSF and he was told that there was nothing else that they could do for him. His options were to have a Laryngectomy or get the feeding tube put back in him. We went back to the car and hugged each other and cried together. We decided to have the feeding tube put back in and he has now been back on it going on 15 months. He hates feeding through the tube and not being able to eat anything. The three most things he loved most in life was #1 eating #2 talking #3 running. He was a runner and ran 9 miles a day. He loved food but was always thin because he ran. He loved to talk and now he cannot speak but very little and limited. He has a tablet that he types in what he want to say and it speaks for him.  This has been HELL FOR HIM. He sweats at night, he gets the chills, and for two days was he coughing up blood. He is supose to go in for a chest xray. Hope all works for you.

Patty

RE: 6 years out Base of tongue cancer

by Proxielocks on Thu Oct 26, 2017 04:08 AM

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On Oct 20, 2017 12:21 PM Shirleyperez wrote:

Has anyone ever been able to receive dental coverage when teeth go bad from radiation? Doesn’t seem fair. I have spent thousands?

My husband has spent thousands of dollars also, until he just quit going at all. They said they cannot pull them because of infection will set in and that they would never heal. So I guess he has to just ride it out until they all fall out. He is DAMMED if he does pull them and DAMMED if he don't.

Patty

RE: 6 years out Base of tongue cancer

by Sdurnell on Sun Oct 29, 2017 08:42 AM

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On Oct 20, 2017 12:21 PM Shirleyperez wrote:

Has anyone ever been able to receive dental coverage when teeth go bad from radiation? Doesn’t seem fair. I have spent thousands?

Shirley,

I am not in your situation, but I did get my medical insurance to pay for extracting all my teeth (a good decision, especially after the fact) before beginning radiation.  I was initially denied, so I had all my doctors (ENT, radiation oncologist, two oral surgeons) write to my insurer to explain the medical necessity.  Each of them insisted that another doctor would be a better choice to write the letter, but I begged, pleaded, pressured, and cajoled each of them to do it separately, and it worked.  It took quite a while, but eventually we were reimbursed the $6000+ we'd paid out of pocket, which really helped as we were dealing with all the other bills.  They even reimbursed the small amount our dental insurance covered.

So I'd keep trying if I were you.  It can't hurt.

All the best with this,

Susan

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