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 Proxielocks on Thu Nov 01, 2018 10:19 PM

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It has been 9 years for my husband having stage 4 throat cancer. Never smoke or drank. Over the years now it has gotton worst. Been back on the feeding tube again for 3 years. Like I said only getting worsse. He cannot speak, if he tries then muccus and foam comes out of his mouth. Very depresssing for him and also for me. It seems our life got turned upside down when this happened in 2009. He had beautiul white teeth and they are rotten and breaking off and there is nothing they can do for him. We have been to a number of denisit and specialist but they say that if they were to pull them, that he would most likely get an infection and would not heal and could even die from it. I ask him doesn't your teeth hurt and in pain. He said NO because they are all dead and I don't have any feeling. My heart hurts for him to have to see him waste away from being 206 pounds and now only 115 pounds. If anyone out there has has this happen I would like to hear from them. I am crying as I type this because UCSF has said two years ago that there is nothing they can do that he will never get better but only get worst and that is excactly what has been happening. Is there someone out that that can help and give me good news. VERY DEPRESSING...

Patty

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

by rey7000000 on Mon May 27, 2019 08:36 PM

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I am 16 years out from head and neck treatment for nasopharyngeal cancer, and my real radiation treatment side effects started about ten years after treatment, when the statue of limitation it’s long gone and you can’t sue them, and they certainly know that. Radiation treatment side effect keep getting worst and worst after 16 years; situation that doctors never tell you so you accept the treatment at first, in fact, they promised you the opposite, you will be normal again, and it's a lie. Today I can't talk due to mouth and tongue tissue and muscles inflexibility. I feed my self through a feeding tube in my stomach, I am stage three COPD (very devastating illness) due to my torturing radiation cancer treatment as well. I have chronic pain to my face, hears, mouth, neck and head. If I new then that this would come I would never accept the radiation treatment, I would rather die. Even worst, mychemotherapyoncologist told me after treatment that chemotherapy alone would solve the problem, radiation wasn't necessary after all. And, to top it off, then I had $500.000 dollars life insurance if I die due to that illness; my wife and children would be protected. Now, that ten years term insurance plan is terminated and, I couldn't get a new protection for my family because my existing situation. They won big times and I lost big time. This is the long term reality of head and neck radiation treatment, and it’s not fair for the patient, not at all. 

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

by rey7000000 on Mon May 27, 2019 08:47 PM

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I am 16 years out from head and neck treatment for nasopharyngeal cancer, and my real radiation treatment side effects started about ten years after treatment, when the statue of limitation it’s long gone and you can’t sue them, and they certainly know that. Radiation treatment side effect keep getting worst and worst after 16 years; situation that doctors never tell you so you accept the treatment at first, in fact, they promised you the opposite, you will be normal again, and it's a lie. Today I can't talk due to mouth and tongue tissue and muscles inflexibility. I feed my self through a feeding tube in my stomach, I am stage three COPD (very devastating illness) due to my torturing radiation cancer treatment as well. I have chronic pain to my face, hears, mouth, neck and head. If I new then that this would come I would never accept the radiation treatment, I would rather die. Even worst, mychemotherapyoncologist told me after treatment that chemotherapy alone would solve the problem, radiation wasn't necessary after all. And, to top it off, then I had $500.000 dollars life insurance if I die due to that illness; my wife and children would be protected. Now, that ten years term insurance plan is terminated and, I couldn't get a new protection for my family because my existing situation. They won big times and I lost big time. This is the long term reality of head and neck radiation treatment, and it’s not fair for the patient, not at all. 

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

by rey7000000 on Mon May 27, 2019 09:14 PM

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On May 01, 2013 6:30 AM Rastuspristl wrote:

On Apr 25, 2013 5:32 AM Sdurnell wrote:

Throat dilations are what have helped me the most.  I had about 8 or 9 the first year after treatment, and several more in the year+ since then.

And if it's the actual swallow mechanism itself, speech therapy is the way to go.  You don't want to mess too much with this, as you can easily develop pneumonia if you are aspirating food or liquids.

Susan

Hi all. I am 11 years out, having had neck disection, followed by a joint radiotherapy/chemotherapy regime. I still suffer major problems with speaking, eating and swallowing. Have continual episodes of aspirating leading to constant chest infections, including pnemonia. Have tried speech therapy etc with no luck.

I am 16 years out from head and neck treatment for nasopharyngeal cancer, and my real radiation treatment side effects started about ten years after treatment, when the statue of limitation it’s long gone and you can’t sue them, and they certainly know that. Radiation treatment side effect keep getting worst and worst after 16 years; situation that doctors never tell you so you accept the treatment at first, in fact, they promised you the opposite, you will be normal again, and it's a lie. Today I can't talk due to mouth and tongue tissue and muscles inflexibility. I feed my self through a feeding tube in my stomach, I am stage three COPD (very devastating illness) due to my torturing radiation cancer treatment as well. I have chronic pain to my face, hears, mouth, neck and head. If I new then that this would come I would never accept the radiation treatment, I would rather die. Even worst, mychemotherapyoncologist told me after treatment that chemotherapy alone would solve the problem, radiation wasn't necessary after all. And, to top it off, then I had $500.000 dollars life insurance if I die due to that illness; my wife and children would be protected. Now, that ten years term insurance plan is terminated and, I couldn't get a new protection for my family because my existing situation. They won big times and I lost big time. This is the long term reality of head and neck radiation treatment, and it’s not fair for the patient, not at all. 

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

by Sdurnell on Mon Jun 03, 2019 08:16 AM

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Rey,

So sorry you feel that you have been cheated by your doctors.  But really, there was then, and is even now, no way to know how a treatment might affect any one individual.  No way to predict what might happen to you or to me, even if we got the same treatment.

But chemotherapy never cures this cancer by itself.  It needs surgery and/or radiation to get it all.

When your treatment was advocated it wasn't known that some tumors are caused by HPV and that those can be treated with less agression, sometimes with no radiation at all.  (Although there is still a chance of a recurrence.)  I had mine done 8.5 years ago, and it was not commonly known then either. 

I am grateful for the years of life I've had since then, being able to see both of my children graduate from college and go out into the world.  But I am already feeling some "late radiation effects" to my voice, and I anticipate that there may be others.

Wishing you all the best,

Susan

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

by Proxielocks on Mon Jun 03, 2019 10:50 PM

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I am sorry to hear about your situcation. However, my husband is in the same boat as you. He was diagnosed the end of December 2009 with stage 4 head/ neck cancer. He went from being a healthy active man who's weight was around 180. He ran 7 miles every day, never smoked or drank. He has been on a peg tube now since Feb 2009 just before he started his chemo and radiation. Later that same year in October he has to have surgery for a neck dissection. It has been a nightmare ever since. The radiation has destroyed his ability to speak. He still feeds through his peg tube. It is sad because he loved to eat and was so healthy. UNTIL THIS NASTY BEAST WE CALL CANCER TOOK OVER HIS LIFE. Whe went to UCSF about 4 years ago and we walked out of there in tears. They said there was nothing they can do for him. Fast forward to now. Andy teeth has totally deteriorated, and most of them have all broken off. And you know what? The dentist can't do a damm thing for him. We have even gone to CLEAR CHOICE  to see if he can get inplants. However, they said nothing they can do for him. You would think he would be in pain. I asked him and he said NO..I don't have anything pain because their all dead and I don't feel anything. I don't think a day ever goes by that I don't cry for him. Since all this has happened our life has changed and he has changed from the man that I met, married and still love to pieces. He has become so bitter, not the loving man I know. He getst pneumonia easily. The last time he got it was around Feb,  the doctor said it was Aspuratuin pneumonia which is worst then just pneumonina. He and I bought say that it was to much radiation. He has always been a loving person. However, this NASTY BEAST has changed him. I never know what his mood is going to be from day to day. He hates living this way and he would rather just I will use the word expire. However, I tell him when it is your time it will be when God says it is your time. I give it all to the Lord and I just take ONE DAY AT A TIME. It is all you can do. Have FAITH AND BELIEVE IN GOD.

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

by Sdurnell on Sat Jun 15, 2019 09:08 PM

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On May 27, 2019 8:36 PM rey7000000 wrote:

 

I am 16 years out from head and neck treatment for nasopharyngeal cancer, and my real radiation treatment side effects started about ten years after treatment, when the statue of limitation it’s long gone and you can’t sue them, and they certainly know that. Radiation treatment side effect keep getting worst and worst after 16 years; situation that doctors never tell you so you accept the treatment at first, in fact, they promised you the opposite, you will be normal again, and it's a lie. Today I can't talk due to mouth and tongue tissue and muscles inflexibility. I feed my self through a feeding tube in my stomach, I am stage three COPD (very devastating illness) due to my torturing radiation cancer treatment as well. I have chronic pain to my face, hears, mouth, neck and head. If I new then that this would come I would never accept the radiation treatment, I would rather die. Even worst, mychemotherapyoncologist told me after treatment that chemotherapy alone would solve the problem, radiation wasn't necessary after all. And, to top it off, then I had $500.000 dollars life insurance if I die due to that illness; my wife and children would be protected. Now, that ten years term insurance plan is terminated and, I couldn't get a new protection for my family because my existing situation. They won big times and I lost big time. This is the long term reality of head and neck radiation treatment, and it’s not fair for the patient, not at all. 

Rey,

I have done extensive searches in the 8.5 years since I was first diagnosed, and I have not found a single case of head and neck cancer that was cured, or even just treated, with chemo alone.  They don't promise that because it doesn't happen.

I am sorry that you don't feel that your 16 years have been worth the side effects, and that you weren't told there might be late radiation effects, but it sounds as if you had a decent 10 years, and for me there's no putting a price on that.

Best of luck to you.

Susan

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

by Proxielocks on Tue Jul 09, 2019 12:17 AM

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This looks like an old post. However, you seem to be doing better than my husbsnad. It was December 2008 when my husband was diagnosed with stage 4 throat cancer. He is still here but not the man I married. Cancer changes that person. My husband has lost almost all of his teeth. Not able to talk, he has to struggle to get a few words out. His tongue does not come out far enough so it makes it difficult for him to speak. He gets very frusterated when he has to try and say something. He has been on a feeding tube since Feb 2009. It will never get better for him, he has to live like this until the Lord takes him home. I can tell you it is sad to watch him waste away. I can't tell you how often I cry. That man, wife that you love so much is not the same person that you married. We went to UCSF about 4 years ago. The doctor he saw there, said that there is nothing else that can be done. We went back to our car and both just cried. I am happy for the you lucky ones out there that are doing good. I guess my husband just wasn'nt one of those lucky ones that have done good. I would love to hear from any of you out there have survived this nasty BEAST and doing well. I had been on here in a long time. However, thought I would come back on and see if some of you are still here.

I wish you all luck because with HEAD NECK CANCER IT IS ONE OF THE WORSE. My husband lost the three things he loved to do the most. That was EATING, TALKING, RUNNING. It is not just the husband, or wife who has gone through this NASTY BEAST. It is also their loved one. spouses that suffer also through it. Maybe not with having cancer. However, losing the love you shared. They can become angry and say things that you know they really don't mean to say. However, to late to take it back. I cry and I pray, and I ask God Why Why did this have to happen. I just thank God that I have my husband as long as he lets me have him. And cherish every moment and every day that we have together. God Bless other caregivers that are going through this with her spouse or a loved one.

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