Getting my voice back

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Getting my voice back

by Marmaduke on Tue Mar 05, 2019 07:28 PM

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Hi everyone: I’ve been posting on here for about four years now and wanted to share this with others that are having difficulty speaking after radiation to the neck and tongue areas. I had 4th stage HPV+cancer BOT diagnosed in May of ‘15. After 35 radiation treatments and 6 chemo treatments, I have been cancer free to date. I’ve had s few scares with doctors saying my cancer was back only to say, ooops, sorry we don’t think it’s cancer after all. Crazy times for sure. But so far so good. I’m 70 years old and have been on a feeding tube most of the last four years. Ended up being hospitalized for a week during my last four radiation treatments I had lost so much weight, 60 lbs. it’s been tough for sure. I lost my voice a couple years ago and could barely speak above a whisper. I finally was told by a ear nose and throat specialist she could help me. In October of 2018 I had a procedure where she injected a synthetic substance into my affected vocal chord which propped it up tighter against my “good” vocal chord causing my voice to be louder when I spoke. It was done In her office with very little discomfort to me. I had great success with this procedure but just had to get it a second time as it is not permanent solution using the synthetic stuff. It lasted about 4 months the first time. I can get it done permanently as an outpatient where they will take some of my own stuff from my hip and inject it instead of the synthetic stuff and it is supposed to be a more permanent solution. Sorry for the long story but wanted to offer my experience to those of you who have lost their voice as I had from the radiation damage. I got do much support from all of you here, I wanted to offer this to anyone that may not have tried this to regain their voice. Blessings to you all, Donna

RE: Getting my voice back

by LoveMozart on Thu Mar 07, 2019 04:06 PM

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Thank you for sharing this! My husband had throat cancer about 30 years ago. The only treatment was radiation , and he was cured of the cancer. Now, however, he has so much scar tissue that he can no longer swallow anything and has a feeding tube. He does a lot of coughing and hacking and spitting! I’d be interested to know if your doctor gives you any advice about keeping your throat comfortable. I thought maybe gargling with aloe Vera juice might help, but he doesn’t listen to me! Good luck on your journey to complete healing!

RE: Getting my voice back

by Janey6 on Thu Mar 07, 2019 04:51 PM

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On Mar 05, 2019 7:28 PM Marmaduke wrote:

Hi everyone: I’ve been posting on here for about four years now and wanted to share this with others that are having difficulty speaking after radiation to the neck and tongue areas. I had 4th stage HPV+cancer BOT diagnosed in May of ‘15. After 35 radiation treatments and 6 chemo treatments, I have been cancer free to date. I’ve had s few scares with doctors saying my cancer was back only to say, ooops, sorry we don’t think it’s cancer after all. Crazy times for sure. But so far so good. I’m 70 years old and have been on a feeding tube most of the last four years. Ended up being hospitalized for a week during my last four radiation treatments I had lost so much weight, 60 lbs. it’s been tough for sure. I lost my voice a couple years ago and could barely speak above a whisper. I finally was told by a ear nose and throat specialist she could help me. In October of 2018 I had a procedure where she injected a synthetic substance into my affected vocal chord which propped it up tighter against my “good” vocal chord causing my voice to be louder when I spoke. It was done In her office with very little discomfort to me. I had great success with this procedure but just had to get it a second time as it is not permanent solution using the synthetic stuff. It lasted about 4 months the first time. I can get it done permanently as an outpatient where they will take some of my own stuff from my hip and inject it instead of the synthetic stuff and it is supposed to be a more permanent solution. Sorry for the long story but wanted to offer my experience to those of you who have lost their voice as I had from the radiation damage. I got do much support from all of you here, I wanted to offer this to anyone that may not have tried this to regain their voice. Blessings to you all, Donna
Wow! So many post radiation patients with feeding tubes. My husband also. He was HPV +. Has anyone heard or seen studies that offer treatment of Head and Neck cancer with less radiation? I've heard that MD Anderson is offering something that may reduce awful side effects of radiation. Of course it is for certain pts, I'm not sure what the criteria is. I've also read that University of Pa does a robotic surgery to remove tumor then RT and chemo. But RT is less. I'm sorry we didn't go with Dr Omalley at Penn. He was the only MD that warned us about long term side effects of RT to throat area. MSK never spoke about RT side effects, PEG tubes, swallowing issues. Not being able to eat or drink for the rest of your life seems like something they should apprise you of. My hubby is young 50.....a young 50. We have been all over trying to find someone who may do throat reconstruction. Major ENT centers, plastic surgeons, etc. That fibrosis can't be fixed. Any comments on RT reduction or knowledge of throat reconstruction are appreciated. Janey

RE: Getting my voice back

by dboone on Thu Mar 07, 2019 06:25 PM

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I had the 35 radiation and 7 chemo for squamous cell carcinoma of the base of the tongue/ that was reduced to 33 rads and the last 10 increased amount to allow the missed ones while having the feeding tube put in and having Christmas at the end.  I was on a tube feeding for 7 months.. My ENT who found the cancer had me start eating and swallowing before I wanted to do so because of the pain.  I am glad she did, as I can do so now with only some difficulty... she told me if I waited the scar tissue would harden and I would never be able to learn to swallow right. I am posting to encourage all who read this to fight through the pain under doctors advice to relearn to swallow.  I just had my G-tube removed after 15 months in place and healing.  The Doctor who placed it wanted to get past one year clear with no cancer before he removed it.  My voice was weak but now back but lower in pitch.. as is my singing .. I lost the tenor range and falsetto..added 3 or 4 semitones to the bass.  I am getting some tenor back but with no real projection and support..  I just know I will not give up and will keep fighting this utill I win back as much as I can.  Please don't give up and enjoy the little victories. My your days get better and your recover complete.  Dan

RE: Getting my voice back

by JChips on Sat Mar 09, 2019 01:41 AM

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I know of a peer (40-something, female) who had surgery, no radiation. It did involve a temporary trach and grafting involving her tongue. But she is back to work, no feeding tube, normal speech, no radiation side effects. I wish my partner had done this. She went to the University of North Carolina. Good luck.
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