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 Sister58 on Wed Nov 29, 2017 03:07 PM

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Hi, Marmaduke; The fact that you are on this sight, seeking, and giving help, proves that you are amazing as well. I have come to realize that few of us end up staying on the path we built for ourselves in our younger days. We all reach those nasty crossroads and just have to trust God to lead us down the correct road. No matter what it is that interferes with our plans, we never go back " to how we once were". Let's just hope and pray that we come out better in the end. Keep sharing your story, and encouraging others. That may be God's gift to you. Remember to laugh, even when it is difficult. I love hearing from everyone on this sight. Each of you are amazing people. As always, my prayers are with each of you. Beverly

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

by GerryMcD on Wed Nov 29, 2017 09:10 PM

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On Nov 29, 2017 12:13 AM Sister58 wrote:

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

Hello, Sister58!

Your post about your brother's experience with large amounts of radiation caught my eye.  Forty-eight years ago, I was diagnosed with cancer of the tonsil when I was only 22 years old.  I was given 6,000 rads of radiation, an amount that is considered double of what they give for the same cancer today.  Keep in mind that radiation treatments  were still new for head and neck cancer in the 1970's.  They did not have enough experience to know anything about the long term side effects of radiation at that time and were just desperately trying to save a young life. 

Since then, I have had numerous surgeries, mostly to clear my sinus' of tumors and to redirect the flow. 

In the 1990's I experiencing extreme bouts of dizziness and double vision.  Living in the Boston, MA area, I was fortunate to have access to some of the best doctors.  None the less, not one of them could explain what was causing it.  My constant insistences that it had something to do with the radiation were brushed aside for eight months.  Finally, when my fingers on my left hand began to turn purple, one of the doctors sent me to a vascular surgeon.  Since the radiation field included a large section of my neck, it had caused a blockage in my sub-clavian artery.  Easily fixed with a by-pass, but not soon enough to avoid the loss of hearing in that ear which was caused by the blockage.

I had already lost all of my back teeth - in the radiation field.  But last year my front teeth began to just break off.  I was given hyperbaric oxygen treatments - 20 before surgery and 10 after. 

Through the years I was told by one dentist or another, that I should never have dentures or implants because my jaw bone was so fragile.  But as I approached age 70, I decided to take my chances and now have full plates.

I've been told that I've outlived the textbooks.  At 15 years out, one doctor told me that he had read a study that the chance of reaccurance of the same cancer, and because of the amount of radiation I was given, was over 95% between 12 and 15 years.  And here I am, still plopping around this good earth!

So... I just wanted to share my story so others can be encouraged regarding survival.  Doctors do not have all the answers and many of them disagree with the others.

Each individual reacts to treatments differently.  So I would always recommend that each of us must go with our own faith, experience and thoughts in making decisions about treatments and causes.

I will keep you all in my prayers and continue to do all I can to encourage people who are struggling with this terrible disease.

My God bless you all.

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

by Sister58 on Wed Nov 29, 2017 09:38 PM

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Dear Gerry, what a beautiful story. I am sorry you had to deal with this horrible disease, but your story gives hope to those who are going through it now. James, too is one of the long term survivors, from the era when radical treatment left long term, unknown effects. His right arm is paralyzed, he is on a feeding tube, has had a complete laryngectomy, and his tongue removed. He too is still plopping around this good earth. He has never once asked why this had to happen to him. He has with great dignity accepted that it did, and moved on. I am extremely proud of him, and now of you. It was a joy to hear from you. You remind us all that there is always hope. May God continue to bless you. I would love to hear from you again. As always, my prayers are with you all. Beverly

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

by Sdurnell on Fri Dec 01, 2017 04:13 AM

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Beverly,

I like your brother's attitude--I never ask why me either.  Because really, why not me? 

I am not looking forward to the "late radiation effects."  They have already begun, as my voice is getting weaker and more gravelly.  But the important thing is that I've survived long enough to suffer these effects!

Susan

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

by TIG2016 on Fri Dec 01, 2017 05:48 AM

Quote | Reply

On Nov 29, 2017 9:10 PM GerryMcD wrote:

On Nov 29, 2017 12:13 AM Sister58 wrote:

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

Hello, Sister58!

Your post about your brother's experience with large amounts of radiation caught my eye.  Forty-eight years ago, I was diagnosed with cancer of the tonsil when I was only 22 years old.  I was given 6,000 rads of radiation, an amount that is considered double of what they give for the same cancer today.  Keep in mind that radiation treatments  were still new for head and neck cancer in the 1970's.  They did not have enough experience to know anything about the long term side effects of radiation at that time and were just desperately trying to save a young life. 

Since then, I have had numerous surgeries, mostly to clear my sinus' of tumors and to redirect the flow. 

In the 1990's I experiencing extreme bouts of dizziness and double vision.  Living in the Boston, MA area, I was fortunate to have access to some of the best doctors.  None the less, not one of them could explain what was causing it.  My constant insistences that it had something to do with the radiation were brushed aside for eight months.  Finally, when my fingers on my left hand began to turn purple, one of the doctors sent me to a vascular surgeon.  Since the radiation field included a large section of my neck, it had caused a blockage in my sub-clavian artery.  Easily fixed with a by-pass, but not soon enough to avoid the loss of hearing in that ear which was caused by the blockage.

I had already lost all of my back teeth - in the radiation field.  But last year my front teeth began to just break off.  I was given hyperbaric oxygen treatments - 20 before surgery and 10 after. 

Through the years I was told by one dentist or another, that I should never have dentures or implants because my jaw bone was so fragile.  But as I approached age 70, I decided to take my chances and now have full plates.

I've been told that I've outlived the textbooks.  At 15 years out, one doctor told me that he had read a study that the chance of reaccurance of the same cancer, and because of the amount of radiation I was given, was over 95% between 12 and 15 years.  And here I am, still plopping around this good earth!

So... I just wanted to share my story so others can be encouraged regarding survival.  Doctors do not have all the answers and many of them disagree with the others.

Each individual reacts to treatments differently.  So I would always recommend that each of us must go with our own faith, experience and thoughts in making decisions about treatments and causes.

I will keep you all in my prayers and continue to do all I can to encourage people who are struggling with this terrible disease.

My God bless you all.

Gerry you are the longest survivor i have read about on this board. 49 years old At just a little more than one year out  (BOT radiation only for treatment at MD Anderson) i still am a newbie and i still worry about near term stuff.  Occasionally i think what the long term effects will be if i live long enough.  

Your post is really something else and i hope you know how much it helps people at all stages after this cancer and treatment.  

I wish the best for you and please check in more often

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

by john19382 on Sun Jan 21, 2018 07:29 PM

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Gerry, Very inspirational story, thank you for sharing. I have been away from this forum for a little while and just catching up. I understand that every person's journey, illness, recovery is different but I do appreciate the willingness of folks here to share their experiences and words of encouragement. I too am one of the fortunate folks. Living about 20 miles or so from Philly, I had access to a great medical team. I just had my 4 1/2 year checkpoint this month and I remain cancer free. My treatment included a couple of surgeries back in March 2013 to remove the mass in my neck followed by a robotic surgery procedure to remove any cancer at the point of origin, my tonsils. This was followed by 30 proton radiatiaon treatments which were completed on July 8, 2013. I try not to focus on the side effects too much. For some reason, I believe if I do better focusing on what I have and what I can do. Most of the time this serves me well. That said, my side effects include a constant pressure on my neck where I had both surgery and the stronger radiation. Sometimes it makes it tough to swallow but I take my time and manage. My right cheek is numb as well as my right ear. This concerned me initially but I actually have gotten used to it. For the first couple of years my mouth was extremely dry as my salivary glands got decimated. I am about 90% back to normal here but still have dry periods. I see a dental hygienist every 3-4 months to make sure the plaque is not an issue. Also use a prescription fluoride gell. Swallowing is okay as long as I don't talk while I eat - remember Mom would always say don't talk with your mouth full - she was right. Since a bunch of lymph nodes were removed from my neck I had to wear a wrap around my head at night out of concern about swelling. I did this for about 9 months and then stopped. No swelling.... Neck is tight and I need to continuallly work on stretching it. This seems to help a good deal. Hit 60 years old last summer so I find stretching helps just about everything. I plan to do as much as I can for as long as I can. I realize how fortunate I am in that I can do just about everything I want to do. It use to sound crazy to me when people say how fortunate or blessed they are after facining a situation like cancer. I have started to understand much better now, I was always blessed but perhaps I let the day to day noise keep me from fully appreciating this. Thank you to all who share here. You all help me more than you may realize, It is really good to know others truly understand. All for now, John

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

by cagy2 on Sun Jan 21, 2018 07:58 PM

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On Sep 24, 2013 12:13 AM marymc wrote:

I am a bit confused, here.  My husband is close to 1.5 years out.  He did not have surgery (35 radiation + 3 cisplatin), and he has not had swallowing or speaking issues at all.  Are you saying that these may develop as time goes on?  Please say it ain't so.

Mary

Mary,  Everyone has a different outome.  I think it's a combination of several thngs. Your Dr's regimine of treatment, the individual and the particular cancer it's self.  I'm 7 1/2 years out and the only bother I have is swallowing that's relieved by dilations.  14th coming up in Feb. Dry mouth a few times a month.    Cancer in throat, tongue 65 Rads, 3 types chemo. Good luck.   

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

by Awsumtime on Sun Jan 21, 2018 09:29 PM

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I now can no longer drink or eat you mouth because I can aspirate into pneumonia. I’m just recovering from double pneumonia from aspirating. This is the second time. I was out of it for days andin ICU

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

by Sdurnell on Mon Jan 22, 2018 05:38 AM

Quote | Reply

On Jan 21, 2018 7:58 PM cagy2 wrote:

On Sep 24, 2013 12:13 AM marymc wrote:

I am a bit confused, here.  My husband is close to 1.5 years out.  He did not have surgery (35 radiation + 3 cisplatin), and he has not had swallowing or speaking issues at all.  Are you saying that these may develop as time goes on?  Please say it ain't so.

Mary

Mary,  Everyone has a different outome.  I think it's a combination of several thngs. Your Dr's regimine of treatment, the individual and the particular cancer it's self.  I'm 7 1/2 years out and the only bother I have is swallowing that's relieved by dilations.  14th coming up in Feb. Dry mouth a few times a month.    Cancer in throat, tongue 65 Rads, 3 types chemo. Good luck.   

Mary,

I only had surgery, to remove lymph nodes, and radiation, but I did have swallowing issues.  I could not swallow even a drop of water for the better part of a year, so my feeding tube was truly a lifesaver.  My problem was solved with a series of throat dilations over the six years since, about the 20 in all.  But the good news is that it has now been 11 months, by far the longest, since I had a dilation.  I just have to be careful about how big the bites I take are.

So my swallowing is better now that I'm 7 years out, but my voice has become pretty raspy in the last year or so.  My ENT calls it a late radiation effect.  Other people develop swallowing problems later, and some need to go back on the feeding tube permanently.

ButI don't worry about that, because I know I can handle whatever happens with some adjustments.  As someone else has said, I can do just about everything I could before.  Life is good.

Susan

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

by Cavman on Thu Feb 01, 2018 04:40 PM

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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

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