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 butler on Thu Jul 19, 2018 12:48 AM

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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

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

by EDWARD123 on Thu Jul 19, 2018 04:31 AM

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YES  I  WAS JUST CHECKED 4  THAT 2 DAYS AGO BYY A  NERVE SPECILIAST ,, THEY CHECK U WITH A SMALL ELECTIAL DOSE FROM 1 SPOT TO THE OTHER  TO SEEHOW IT RESPONDS ON MOST OF YOUR NERVES,,MINE RESPONDED WELL ,,WELL THAT MENT THAT THE RADIATN CAUSED ALL THE PROBLEMS ,,  ,CAUSING IT TO GO DEAD,  BUT STILL SOMEWHAT USEFULL ,,HE TOLD ME THAT THERE WAS NO        CURE FROM IT..JUST HAVE TO LIVE WITH IT ,,,.. ,

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

by butler on Thu Jul 19, 2018 05:18 AM

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gabapentin helps with the pain and cramping.  Stretching, massage and accupresur/acupuncture has also helped some

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

by Vauxhall62 on Fri Jul 20, 2018 11:02 AM

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Hi Georgenone. I am in similar boat , radiation in 2000 and no further cancer but plenty of issues to do with talking / swallowing / breathing. Are you still able to swallow and have you now got no cancer. I wish you all the best. Radiation is the worst treatment possible due to bad side effects.

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

by john19382 on Fri Jul 20, 2018 01:11 PM

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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.  

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

by Dlynn1210 on Fri Jul 20, 2018 02:21 PM

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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

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

by Dlynn1210 on Fri Jul 20, 2018 05:19 PM

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I posted privately to John but some good information to repeat - I am almost 11 years out now. I read back over my response and I wasn’t very clear. Speech Pathologists have our Masters Degree in Communication Science and Disorders (a 6 year program) rather than a Bachelors (4 years) for Speech Therapy. Even when Deb and I graduated we had never been trained in VitalStim - it was an extra course that Deb took after we graduated. I worked in a school while Deb worked in a hospital environment so while it wasn’t something I would use, it was necessary for her patients. I was a Speech Path but never ‘trained’ to do VitalStim. It involves electrodes and for want of a more legal way of describing it - like jump starting a battery in a car. It is used primarily to jump start our muscles when unused for a prolonged period such as my having to rely on a feeding tube for over a year. What I have regularly to help with my swallowing is rigid dilations and they are a piece of cake. I never think back to those days and as you said the nuisances we have as a result of radiation - the gift that keeps giving but while we do need to ask questions not everything comes up. I had a tremendous team. I had a dynamite ENT who knew what she was doing but when I,got in trouble was after moving to FL and having to find a new ENT. The first one was a disaster and only later while hospitalized for another problem did a doctor mention in passing about my having a balloon dilation. Light bulb moment - I remembered seeing rigid on my records I brought from IL and stated doing some research. I found out the hard way 9 years post treatment about the two types of dilations and the different results. I know those who had esophageal cancer were radiated lower than those like myself who had tonsil cancer. Balloon dilations may very well work for them but they did nothing for me. The balloon tube is inflated after insertion whereas the rigid consists of hard tubes that increase in size after the smallest is inserted down the throat. Again, not every ENT is qualified to do rigid dilations - and GI doctor’s definitely are not. 9that is who did my balloon dilation). Thank heavens for Cancer Compass where we can share information. Diana

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

by cagy2 on Fri Jul 20, 2018 07:50 PM

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As far as dilations go, one cannot always have the rigid dilation if the throat is closed too much.  My throat was completely closed and it took 3 dilations to open it over a 6 week period.  At times only a balloon was used when only a part was closed like the upper ring in the throat.  I've had both ENT and GI's dilate me.  The GI did a great job too so I think it is the pticular Dr's expertise.  # 15 coming up for me since 2006.

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

by Dlynn1210 on Fri Jul 20, 2018 08:41 PM

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The results definitely depend on a doctor’s expertise in certain procedures no matter what speciality they are practicing. Even though they may do rigid dilations I have never heard of a GI doctor attempting one. I was told the one who did the balloon on me was a very good GI doctor but he did not even suggest doing a rigid dilation. In fact when I asked him after the fact, he simply said “I don’t do them.” The first ENT that I went to in FL described the dangers involved with a dilation (I didn’t know then that there are two different kinds) and said ENTs don’t do them in FL - and then referred me to a GI doctor. Before I could get into the GI doctor I was hospitalized with a brain bleed. The Doctor I now see is a otolaryngologist who did his fellowship in head and neck cancer oncology at Stanford. To say he is good at what he does is putting mildly. My throat was closed to the point I couldn’t eat anything without aspirating - not even noodle soup. The hospital would not give me any food during my 6 days stay so I demanded to be released. I was on an IV for nourishment and getting weaker by the day. Within two days after leaving the hospital I had done my research and found my current doctor. It was two weeks before I could get into see him basically living on soup broth in those 2 weeks. He performed the dilation on Wed and I was eating solid food by the weekend. Going forward he has managed to get the opening a little wider each time - although as I get a ‘little’ older he suggested we do them a little more often. I have ‘older’ friends who needed dilations who have never had cancer or radiation so I guess it goes with getting a little older also. Diana

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

by Dlynn1210 on Fri Jul 20, 2018 08:49 PM

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On Jul 20, 2018 7:50 PM cagy2 wrote:

As far as dilations go, one cannot always have the rigid dilation if the throat is closed too much.  My throat was completely closed and it took 3 dilations to open it over a 6 week period.  At times only a balloon was used when only a part was closed like the upper ring in the throat.  I've had both ENT and GI's dilate me.  The GI did a great job too so I think it is the pticular Dr's expertise.  # 15 coming up for me since 2006.

I just saw you had esophageal cancer - and I generally point out there is a difference in the area being radiated between those with your type of cancer and mine (tonsil cancer). I know of others who had esophageal cancer and a GI doctor was able to help them. I never advise anyone who had a different type of cancer because all types of head and neck cancers are a little different and can respond differently to treatment. I can only speak for the type of head and neck cancer I had which was tonsil. Diana
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