long term side effects of radiation for head/neck cancer

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RE: long term side effects of radiation for head/neck cancer

by cagy2 on Thu Feb 01, 2018 04:52 PM

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On Feb 01, 2018 4:40 PM Cavman wrote:

I am 12 years out from stage 4 scc right tonsil/nodes. I have and do have teeth issues, swallowing issues and other issues, but a really bad one is a muscle type cramp I get occasionally on the tumor side of neck that is bad. It pulls as it locks up my neck with excruciating pain. Doc says he is aware of it, but they don`t know what causes it.

But we need to remember the lawn mower isn`t on top of us...

Ron in Florida

I'm out 7 years from the 1st bout and going on 2 years from esophageal cancer.  I have the same stricking pain up the back  along side my neck but I think it's from laying back on my pillow watching computer and TV.

RE: long term side effects of radiation for head/neck cancer

by Sister58 on Thu Feb 01, 2018 10:25 PM

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Hey, Ron. My brother had tonsillar cancer in 2001 (?). He has had a couple of bouts since then. The most recent was last June. They removed his larynx and tongue. Good news is he healed really fast, got back on his feet, and gained his weight and strength back. About 6 years ago, again (?), he began to have sharp pain in his neck and shoulder on surgery side. Many, many Dr. visits later, a sports Dr. diagnosed him with brachial nerve plexopothy. He said he had only seen one other case in his years of practice. Unfortunately, James lost the use of his right arm, and still has the pain and severe nerve tingling on that side. They have found no treatment. I certainly am not saying this is your problem, but it can't hurt to ask your doctor. James's problem was caused massive radiation treatment. He has had lifetime max radiation. His recent pet scan showed he was cancer free, but at his appointment with his surgeon this week, they found a small nodule in the back of his throat. Removed it for biopsy. We are praying it will come back clean. Keep the faith. Beverly

RE: long term side effects of radiation for head/neck cancer

by john19382 on Thu Feb 01, 2018 11:08 PM

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I am 4 1/2 years out - had tonsil cancer and a mass in my neck.   Treatment included a modified radical neck dissection, an additional robotic neck surgery to remove any cancer at ths source (tonsil) follow by 30 Proton radition treatments...

I too get cramps in my neck at times which feel intense like a charley horse.    Fortunately they tend to pass quickly.   Also started getting similar cramps in my tongue.   If I feel one of this coming on, I can often stop the progression by drinking some water.   These last from 30 seconds to about 1 - 2 minutes.

The doctors have thoughts and have put me on pentoxifylline 400 MG ER tablet twice a day along with 1000 IUs of Vitamin E....

Doctor tells me to stay hydrated which seems humorous to me given I drink about a gallon of liquids each day...

My neck is tight - always - feels like it is being squeezed on surgery (and primary radition) side constantly.    Stretching provides some temporary relief as do hot showers and heating pads. 

I still am glad to be above ground and really glad for early detection as well as my health care team.  

Thank you to everyone who shares their experiences here, I find it very helpful.  

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Thu Feb 01, 2018 11:18 PM

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On Feb 01, 2018 11:08 PM john19382 wrote:

I am 4 1/2 years out - had tonsil cancer and a mass in my neck.   Treatment included a modified radical neck dissection, an additional robotic neck surgery to remove any cancer at ths source (tonsil) follow by 30 Proton radition treatments...

I too get cramps in my neck at times which feel intense like a charley horse.    Fortunately they tend to pass quickly.   Also started getting similar cramps in my tongue.   If I feel one of this coming on, I can often stop the progression by drinking some water.   These last from 30 seconds to about 1 - 2 minutes.

The doctors have thoughts and have put me on pentoxifylline 400 MG ER tablet twice a day along with 1000 IUs of Vitamin E....

Doctor tells me to stay hydrated which seems humorous to me given I drink about a gallon of liquids each day...

My neck is tight - always - feels like it is being squeezed on surgery (and primary radition) side constantly.    Stretching provides some temporary relief as do hot showers and heating pads. 

I still am glad to be above ground and really glad for early detection as well as my health care team.  

Thank you to everyone who shares their experiences here, I find it very helpful.  

It scary hearing stories about surgery with esophageal cancer.  Is it just used by certain Dr's?  It was never mentioned to me and I was stage 4 and cured now.  Fingers crossed!

RE: long term side effects of radiation for head/neck cancer

by AZLinda on Thu Feb 01, 2018 11:39 PM

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I too had cramping in my tongue. Notice I said “had” — I could feel when one was about to happen and just had to wait for it to pass. Just as mysteriously as the cramping started, it stopped. It always felt necessary to exercise my tongue after an episode. These lasted for two years between year two and four post surgery and radiation. I highly recommend regular massage to relieve neck tension and rigidity. I am seven years out, base of tongue robotic surgery and neck dissection.

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Fri Feb 02, 2018 12:54 AM

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Cagy,

The guy you are replying to had head and neck cancer, not esophageal cancer. So his treatment was different from what you would face or have faced.  

Surgery for H&N cancer is common, both for the primary location and for the lymph nodes.  Other folks need it for the base of tongue or sometimes the tongue itself.  And yet others, especially if their tumors are HPV related, don't have surgery at all. 

They never could find my primary tumor, so I only had surgery to remove the lymph nodes on one side--a modified radical neck dissection.  And then 25 days of radiation.  That was 7 years ago and I'm cured too.

Susan

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Fri Feb 02, 2018 01:31 AM

Quote | Reply

On Feb 02, 2018 12:54 AM Sdurnell wrote:

Cagy,

The guy you are replying to had head and neck cancer, not esophageal cancer. So his treatment was different from what you would face or have faced.  

Surgery for H&N cancer is common, both for the primary location and for the lymph nodes.  Other folks need it for the base of tongue or sometimes the tongue itself.  And yet others, especially if their tumors are HPV related, don't have surgery at all. 

They never could find my primary tumor, so I only had surgery to remove the lymph nodes on one side--a modified radical neck dissection.  And then 25 days of radiation.  That was 7 years ago and I'm cured too.

Susan

My cancer in 2010 was tongue cancer.  In 2016 it was in the upper third of my throat.  I had kidney cancer in 2010 at the same time and that was removed.  They didn't tell me that for 3 months because if the tongue wasn't cured then it wouln't have mattered.

RE: long term side effects of radiation for head/neck cancer

by john19382 on Fri Feb 02, 2018 02:18 AM

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Thanks AZLinda, good to hear that this may pass in time. The folks at work are getting accustomed to my pauses when the tongue wants to do its own thing.

RE: long term side effects of radiation for head/neck cancer

by radiationtonsil on Sun Feb 25, 2018 03:06 AM

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On Feb 01, 2018 11:39 PM AZLinda wrote:

I too had cramping in my tongue. Notice I said “had” — I could feel when one was about to happen and just had to wait for it to pass. Just as mysteriously as the cramping started, it stopped. It always felt necessary to exercise my tongue after an episode. These lasted for two years between year two and four post surgery and radiation. I highly recommend regular massage to relieve neck tension and rigidity. I am seven years out, base of tongue robotic surgery and neck dissection.

Hi everyone,

I am one year ten months out from 33 radiation treatments.  I had one Chemo treatment ...The Chemo almost killed me. 

   My HPV+16 was massed on my right tonsil and under my tongue.    I had three massed lymph nodes.  The cancer lined my throat from my nose to my Adam's Apple.   The Doctors were not optimistic.

  Recently, my two front upper teeth seem to be disintigrating from the bottom up.  I have experienced thousands of dollars in dental bills in the last year ... lots of cavities and crowns. I went to the Dentist today with pain and a loose bottom front tooth I had been ignoring for two weeks. The dentist extracted TWO Teeth (the front lower tooth and the one next to it) THIS MORNING. The Dentist said the extracted teeth were very brittle.  He implicated I may lose more teeth.  Osteonecrosis may  disolve parts of my jaw.   I have members of my HNSCC support group missing parts of the jaw.  

Anyone who would like to share similar experience ... I would like to know.

  I also have been having cramping along scar tissue that runs from my right ear down to my Adams apple.  I look like I am having a palsy seizure.  I found a Chinese neck massage does wonders but it cost$$$.

Hopefully my extracted teeth will allow me to eat solid food tomorrow.

Good Luck to All.

Greg in Chicago

RE: long term side effects of radiation for head/neck cancer

by cagy2 on Sun Feb 25, 2018 01:09 PM

Quote | Reply

On Feb 25, 2018 3:06 AM radiationtonsil wrote:

On Feb 01, 2018 11:39 PM AZLinda wrote:

I too had cramping in my tongue. Notice I said “had” — I could feel when one was about to happen and just had to wait for it to pass. Just as mysteriously as the cramping started, it stopped. It always felt necessary to exercise my tongue after an episode. These lasted for two years between year two and four post surgery and radiation. I highly recommend regular massage to relieve neck tension and rigidity. I am seven years out, base of tongue robotic surgery and neck dissection.

Hi everyone,

I am one year ten months out from 33 radiation treatments.  I had one Chemo treatment ...The Chemo almost killed me. 

   My HPV+16 was massed on my right tonsil and under my tongue.    I had three massed lymph nodes.  The cancer lined my throat from my nose to my Adam's Apple.   The Doctors were not optimistic.

  Recently, my two front upper teeth seem to be disintigrating from the bottom up.  I have experienced thousands of dollars in dental bills in the last year ... lots of cavities and crowns. I went to the Dentist today with pain and a loose bottom front tooth I had been ignoring for two weeks. The dentist extracted TWO Teeth (the front lower tooth and the one next to it) THIS MORNING. The Dentist said the extracted teeth were very brittle.  He implicated I may lose more teeth.  Osteonecrosis may  disolve parts of my jaw.   I have members of my HNSCC support group missing parts of the jaw.  

Anyone who would like to share similar experience ... I would like to know.

  I also have been having cramping along scar tissue that runs from my right ear down to my Adams apple.  I look like I am having a palsy seizure.  I found a Chinese neck massage does wonders but it cost$$$.

Hopefully my extracted teeth will allow me to eat solid food tomorrow.

Good Luck to All.

Greg in Chicago

Greg, I had the same thing as you in 2010.  All your teeth will have to come out due to the radiation so don't waste any more money on dentists.  It goes with the treatment.  I had mine rebuilt for two years at the free dental clinic that roams the state.  That really doesn't fix the problem.  Dentures are enivitable .  You can fly to Poland or Mexico and save on the total bill.My Humana insurance didn't cover a dime.  Extraction $2800, dentures $4500,  John in Florida

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