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 EDWARD123 on Tue Jul 24, 2018 02:38 AM

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i have the same problems now  ,,new  toungue ,,hard to swallow ,,speech problems [ especiaslly on telephone  of which i do not answer any more   i let my wife do it now ,,the tongue problem is i can no longer eat eat anythig that is[ hot  or spicecy ]  my right arm is almost useless from radiation ..MY 9  HR.  SURGERY  WAS 2 YRS  AGO ..AND  4  WEEKS OF RADIATION ..UGH..UGH ..

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

by Dlynn1210 on Tue Jul 24, 2018 04:09 AM

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On Jul 24, 2018 2:38 AM EDWARD123 wrote:

i have the same problems now  ,,new  toungue ,,hard to swallow ,,speech problems [ especiaslly on telephone  of which i do not answer any more   i let my wife do it now ,,the tongue problem is i can no longer eat eat anythig that is[ hot  or spicecy ]  my right arm is almost useless from radiation ..MY 9  HR.  SURGERY  WAS 2 YRS  AGO ..AND  4  WEEKS OF RADIATION ..UGH..UGH ..

I was raised by a father who truly believed that hot wasn’t hot unless steam came out of your ears. I loved hot and spicy!!!! Post treatment I would order my favorite fast food “Spicy Chicken” feom Wemdy’s and my poor husband would wind up trading me sandwiches wouldn’t I couldn’t make it past one bite. I still remember the day we went boating with friends. They brought shrimp cocktail and sauce - one of my favorites. I couldn’t resist and tried one - and then another - and then another. I could tolerate the spicy cocktail sauce and I ate a lot of them - most likely more than my share. Our friend commented down the road how she thought I was just really hungry that day - not realizing it was the first time I was able to eat one of my favorite foods since treatment. My point - you will regain some of your ability to tolerate hot and spicy ??!! Praying for much hot and spicy in your days ahead. Many people can’t understand but it is one more step toward normalcy. Diana

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

by john19382 on Tue Jul 24, 2018 04:18 AM

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I totally understand Diana. It is the small things that we need to celebrate.... whether it is being able to eat / taste a favorite food again or being able to speak without my tongue being too dry. I am five years out this month.... the first few years I needed to have a bottle of water with me almost 100% of the time. Glad to say my salivary glands have made significant improvement and sugarless gum really helps to stimulate them. I can eat mild salsa now which I love but have to avoid anything hotter still. It is good to be above ground. John

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

by Dlynn1210 on Tue Jul 24, 2018 11:43 AM

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On Jul 24, 2018 4:18 AM john19382 wrote:

I totally understand Diana. It is the small things that we need to celebrate.... whether it is being able to eat / taste a favorite food again or being able to speak without my tongue being too dry. I am five years out this month.... the first few years I needed to have a bottle of water with me almost 100% of the time. Glad to say my salivary glands have made significant improvement and sugarless gum really helps to stimulate them. I can eat mild salsa now which I love but have to avoid anything hotter still. It is good to be above ground. John
Hi,John - Absolutely. I appreciate the small things so much more now than before. I thank God every night for blessing me with one more day. Diana

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

by MDyogi on Tue Jul 24, 2018 08:08 PM

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On Jul 19, 2018 12:48 AM butler wrote:

On Jul 11, 2018 8:22 PM MDyogi wrote:

Diana, thanks for that information.  My husband's cancer was in both tonsils, but more in the left so that's where most of the radiation was focused - and that's where the tingling is--he says it's like ants running up and down his head and neck, under his skin, which I just can't imagine how bad that must feel.  It seems to be getting worse - we can power through the muscle cramps and they myokymia he developed that pulls his muscles in all different directions with MM; the tingling doesn't seem to respond to anything.  I'm just so fearful about the future...  

Has he tried Gabapentin?  Most likely due to radiation causing nerve damage and ongoing scar tissue/lack of circulation

Diana, yes indeed. The Gabapentin does seem to help a little.  Has anyone found anything else that helps at all with the tingling? 

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

by MDyogi on Tue Jul 24, 2018 08:11 PM

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On Jul 20, 2018 2:21 PM Dlynn1210 wrote:

On Jul 20, 2018 1:11 PM john19382 wrote:

Hi All,

Yesterday I had a follow up appointment with my speech / swallow pathologist.    I last saw here about 2 1/2 years ago - and she walked me through a few mouth / swallow exercises which may help to some degree. 

I would recommend that anyone recovering from throat / tonsil (head / neck) cancer have at least one consultation with a speech / swallow pathologist.  

Hi John - I’ve been around so long and forget that not everyone is aware that I was a Speech Pathologist when I was diagnosed. I knew about the exercises but I also knew about VitalStim Therapy which was actually what got me back to eating after being on a feeding tube for a year. Not every Speech Pathologist is qualified to treat a patient with it though. I was truly blessed to have a friend and former classmate who was well trained in VitalStim as my Speech Pathologist. Diana

Diana, what is VitalStim?  No one has mentioned that to us in the five years we have been chasing these demons. 

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

by cagy2 on Tue Jul 24, 2018 08:52 PM

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I would recommend reading about the side affects beore going any further on this treatment.

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

by Dlynn1210 on Wed Jul 25, 2018 02:09 AM

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On Jul 24, 2018 8:11 PM MDyogi wrote:

On Jul 20, 2018 2:21 PM Dlynn1210 wrote:

On Jul 20, 2018 1:11 PM john19382 wrote:

Hi All,

Yesterday I had a follow up appointment with my speech / swallow pathologist.    I last saw here about 2 1/2 years ago - and she walked me through a few mouth / swallow exercises which may help to some degree. 

I would recommend that anyone recovering from throat / tonsil (head / neck) cancer have at least one consultation with a speech / swallow pathologist.  

Hi John - I’ve been around so long and forget that not everyone is aware that I was a Speech Pathologist when I was diagnosed. I knew about the exercises but I also knew about VitalStim Therapy which was actually what got me back to eating after being on a feeding tube for a year. Not every Speech Pathologist is qualified to treat a patient with it though. I was truly blessed to have a friend and former classmate who was well trained in VitalStim as my Speech Pathologist. Diana

Diana, what is VitalStim?  No one has mentioned that to us in the five years we have been chasing these demons. 

In layman’s terms I liken it to jumper cables - the electrodes are placed in strategic areas on the outside of the throat. Impulses literally jump start our esophageal muscles. There are absolutely NO side effects and for those of us who endured horrendous side effects from other treatments, this is huge! This, along with swallowing exercises, is what got me off of a feeding tube after one very long year of depending on one. I still have a few items that I need to prepare a little differently to maximize tenderness but I solely attribute VitalStim to getting back to eating real food. I need dilations once a year (recommending a little more often now that I am 71 yrs young) but that is no biggie. It does have to be administered by a Speech Pathologist who is trained in VitalStim. I was a Speech Path but never trained because this is not part of our graduate program. A former classmate went through the training as she worked in a hospital - she was my angel who got me back to eating real “food”. Here is the technical description - VitalStim® Therapy System is a non-invasive, external electrical stimulation therapy cleared by the Food and Drug Administration in 2002 for the treatment of dysphagia with application on the anterior neck. Since its introduction in 2003 its adoption has quickly grown and is now in use by a majority of dysphagia treatment professionals. The VitalStim® Therapy System is designed as an adjunct modality, meaning a clinician will apply VitalStim® while simultaneously working with the patient on swallowing exercises. Used as an adjunct to traditional swallowing therapy, VitalStim® has been found to: Be safe and effective for patients Accelerate the recovery time from a restricted diet. Help patients achieve sustained improvement and long-term results. The evidence base for VitalStim® has grown significantly in recent years. The lasting effect of VitalStim® was demonstrated in a 3 year follow-up study submitted to the FDA that showed improved swallowing function was maintained. Diana

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

by Dlynn1210 on Wed Jul 25, 2018 02:11 AM

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On Jul 24, 2018 8:52 PM cagy2 wrote:

I would recommend reading about the side affects beore going any further on this treatment.

You don’t specify what treatment you are referring to but as someone who had VitalStim, I assure you there are NO side effects. Diana

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

by EDWARD123 on Wed Jul 25, 2018 02:22 AM

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there are always long term radiation  side effects ...as i  have had nw going on 2  and a half yrs..u  almsot have tolive with them ...cause they are [INCUREABLE  ]

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