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 radiationtonsil on Mon Nov 27, 2017 07:49 PM

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Rhubarb

I am one year seven months out from treatment.

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.

Anyone who can relate 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. It is a little scary but it does not last more than 5 minutes.  The cramping just started about 10 days ago.

Greg in Chicago

  

 

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

by Dlynn1210 on Mon Nov 27, 2017 09:22 PM

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I am 10 years out from treatment and have had numerous root canals and crowns. I have a tingling up the right side of my face several times a day with the number steadily increasing. I do not have any scar tissue on the outside - surgery was only tonsils removed. Diana in FL but diagnosed while living in Romeoville, IL

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

by Sister58 on Mon Nov 27, 2017 11:27 PM

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Greg, my brother had tonsillar cancer in 2001. Surgery in 2001 to remove tonsils. A year later he had a new tumor. More surgery and 31 days of radiation twice a day. About 4 years ago he began to have pain similar to what you are describing. His right arm began to have muscle spasms. You can actually see his muscles (what I call) crawling. They twitch very rapidly for several minutes. This happens all the time. He also began to have trouble eating. He would aspirate.. He is 6'4" tall and weighed about 175. Very athletic. He lost down to 124 lbs. After numerous visits to every type of Dr. you can think of, and every type of test you can imagine, he was diagnosed, by a sports Dr. as having brachial nerve plexopathy. His brachial nerve was damaged by the massive radiation. He was also diagnosed with a paralyzed vocal chord, (which was causing the aspirating.) He is now on a feeding tube, has had a laryngectomy, and his tongue removed, (from a new tumor). I know this sounds awful, but he is soon to be learning to eat and drink again, and will learn to speak with a vibration devise. His right arm is 75 to 85% paralyzed, and nothing can help that. He never gave up. With each new diagnosis, his response was "well, let's get busy and fix it." I believe his attitude is the reason he is still here. He walks a mile and a half every morning, and weighs 173 lbs. His dr. of 17 yrs. told him this past May to "go home, get your ducks in a row, say your goodbyes, and decide if you want to die with your boots on." James' response: He found a new doctor. This Dr. Saved his life. Don't quit, and above all seek out the right doctors. My prayers are with you.

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

by cagy2 on Mon Nov 27, 2017 11:47 PM

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I see far too many cases of surgery on here for this cancer.  Are they too quick to use the blade?  Like I have stated earlier, I have had this twice now and none of my Dr.'s ever mentioned surgery.  Radiation twice a day?  I hope it was a low dose.  Once a day is more like it or you will be scarred and burned.  Some say they received chemo every day.  Mine was once a week and then I had to stop it early because my creatine level rose too high.

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

by cagy2 on Tue Nov 28, 2017 12:23 AM

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On Nov 27, 2017 6:29 PM Marmaduke wrote:

Rhubarb: after reading your post of having to replace your teeth two years ago I am wondering how you are doing and if you healed well. I am just over two years out from treatment. I am still dependent upon a feeding tube to maintain my weight. Barely can speak above a whisper at times. Cough and choke a lot. Very low saliva which makes it difficult to eat much when I try. I still have no teeth issues, but it’s just a matter of time til I do according other posts I’ve read on here. I’ve done 60 dives with Hiperbaric treatments early on to help heal my mouth. Please post your experiences with your teeth replacement if you don’t mind. I would love hearing from you. It’s a tough time for sure and doesn’t seem to be getting any better for me right now. I still am thankful for my life such as it is, it’s still a life. Beats the alternative. I have a mentally handicapped daughter who is very worried about me and I am thankful God had seen fit to allow me more time with her. Look forward to hearing from you. Blessings, Donna

Reading your post begs me to inquire if you have looked into having your throat dilated.  Simple and very helpful process.  My throat closed completely for 5 weeks and have had repeated dilations since 2005.  My sister in law had throat cancer almost 3 years ago and dilation was never offered to her.  After I told her to insist on it she has been dilated to 18, while I am only at 15.  Yet she is still hanging onto her tube!!!!!   Dr.'s have to be questioned on their decisions at times.  He admitted that he didn't think she would have lived this long. Do you use BIOTENE?  At Walmart.  use the gel.

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

by Marmaduke on Tue Nov 28, 2017 03:05 PM

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Cagy: Thank you for your suggestions. Unfortunately, I have seen several specialists to get my throat dialated only to find after one procedure my throat is not constricted at all. My swallow function is not working properly. My affected vocal cord is paralyzed causing speech issues.I’ve done speech therapy to help some, but not much. I’ve had acupuncture also. I have been using biotin from the get go. Love the gel too. I remain on the feeding tube to maintain my weight as I cannot swallow enough supplement without aspirating at times and do not want to get pneumonia. I have accepted I may be on it for life and am finally at peace with that. I do appreciate your thoughtfulness in responding. Wishing you all the best on your road to recovery. Blessings, Donna

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

by hisprincesstoo on Tue Nov 28, 2017 05:58 PM

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Donna

I had a somewhat different experience with my throat after treatment, 3 years ago.  My throat is overly wide, and the base of my tongue is gone.  food 'falls' down rather than be pushed down by muscle action.  things get stuck on the side of the throat, but it gets worse depending on whatever irriates it (increased mucus, I'm assuming).  I also was afraid of aspiration, and did many many times.  I learned to concentrate on my swallowing and keeping my throat from irritation.  I learned to clear my throat often, which helped, then hurt things as my throat stabilized.  I rarely aspirate anymore, but found my clearing to be a source of irratiation, so, I'm concentrating on not clearing.  I've found many things irratate the throat.  blueberries do enough to even block my estation tubes and cause painful ear infection like symptoms.  So, I eat only those things now that don't irritate my throat.  hmmm well, there are a few things I do just cause they taste SOOOO good.  Taco's are my staple.  I make my own meat, only slightly spicey, and cheese and lettuce (iceburg only) as the only ingredients.  I've also found a high fat diet helps the food to slither down without sticking.  I also eat a lot of ice cream.  I'm often concerned that this diet isn't the greatest, but I do take suppliments to fill the gap.  my colesterol levels are the lowest I've had my entire life.  Go figure, right.

I think I'm due to go to a buffet again to see if my throat can handle something more.

one last thing.  I've let all around me to know that normal choking assistance will not work for me with the wide throat.  I tell them to just let me work it out.  I suppose if I was in real danger of choking, turning me upside down would be the best help they could give me.

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

by Marmaduke on Tue Nov 28, 2017 11:02 PM

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Sister58: Thank you for your post about your brother and his strength and courage. It makes me ashamed to complain about my issues. They pale in comparison to your brother’s. I felt badly reading about the things he has gone through but also was encouraged by his perseverance and the will to keep going. Many of us on this board, myself included, are sometimes so consumed with our own troubles we forget how much worse things could be. We just want to go back to how we once were before the cancer. I’m coming to the realization that is not going to happen in my case. So I’m adjusting my sails and taking a different course. It’s not what I thought my life would be like in my “golden years” but it’s still a life. That’s more than so many have had. God bless you and your brother as he continues to fight this horrible disease. Donna

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

by Sister58 on Wed Nov 29, 2017 12:13 AM

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Hi, Donna You couldn't be more correct. This is a horrible disease. I have been amazed watching my brother fight this since 01, and reading the messages of courage and encouragement on this sight. So many strong people, who are willing to share their experiences. I believe their experiences may give someone the courage to keep fighting. James also had the paralyzed vocal chord. A result of the radiation therapy. I think they over radiated James, but in 01 they didn't know what they know now. He had to have all of his teeth pulled before they would start treatment. At the end of treatment he had 3rd degree burns from mid-ear to mid-chest, front and back. About 5 years ago he was going to have dental implants, and was told he would have to have hyperbaric treatments beforehand. When the dentist consulted with his oncologist he found out that the amount of radiation was so high that even the hyperbaric treatments wouldn't help. James is truly an amazing person. He takes everything in stride, always prepared for the next step. I believe attitude is important in healing. Just keep adjusting those sails and stay the course. And, if you ever just want to talk I'm here. When I think of all you guys I have met on this sight, and James, I think of the verse: "I FOUGHT THE GOOD FIGHT. I STAYED THE COURSE. I FINISHED THE RACE." The fight in all of you amazes me. You are strong, resilient, and a blessing to everyone you come in contact with. As always, my prayers are with you all. Beverly

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

by Sdurnell on Wed Nov 29, 2017 07:09 AM

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On Nov 28, 2017 11:02 PM Marmaduke wrote:

Sister58: Thank you for your post about your brother and his strength and courage. It makes me ashamed to complain about my issues. They pale in comparison to your brother’s. I felt badly reading about the things he has gone through but also was encouraged by his perseverance and the will to keep going. Many of us on this board, myself included, are sometimes so consumed with our own troubles we forget how much worse things could be. We just want to go back to how we once were before the cancer. I’m coming to the realization that is not going to happen in my case. So I’m adjusting my sails and taking a different course. It’s not what I thought my life would be like in my “golden years” but it’s still a life. That’s more than so many have had. God bless you and your brother as he continues to fight this horrible disease. Donna

Donna,

Congratulations!  You have found the secret to life after this horrible disease, and that is acceptance of the new normal, whatever it is for each of us.  There was a time when I thought I would never eat or drink by mouth again too, and eventually I found that I could make peace with that.  And now I know about late radiation effects, so I may need to find that acceptance again. 

But you are right--we have to realize how fortunate we are even to get the chance to make this adjustment--many others don't.

All the best,

Susan

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