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 pcn17 on Fri Feb 28, 2014 02:13 AM

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 I am in total agreement with the details Beth. Same thing here and 8 years out. Everything is horrible. I can't believe I am in this state at this point and know it will be getting worse in time. The cost of all these side effects is just insame. I am going to finally file for disability and hope I get it. I have been damn denial too long now. So pushing this body anymore is already too much.  The most embarrasing thing for me is the sinus issues, especially in public, I hate it!

Sorry to Complain, but you put so well +.

Patricia "-)

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

by caroline4 on Thu Mar 13, 2014 12:13 PM

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Oh dear, I almost wish I hadn't read all of this..........last radiotherapy session was 8 months ago, PEG out just over a month ago, and now starting to have problems swallowing!  Will ask about throat dilations if it gets any worse.  Thanks to all those who have posted what they know.  All the best to all!

luv 'n stuff

Andrea xxx

 

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

by Sdurnell on Thu Mar 13, 2014 09:04 PM

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Andrea,

Have you talked to a speech therapist about your swallowing?  There are exercises you can do that may help you improve your swallowing.  I would recommend that you look into this soon, as you don't want to have it get so bad you have to go back on the feeding tube.  That would be depressing!

Susan

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

by caroline4 on Fri Mar 14, 2014 11:47 AM

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Susan,

Hi, I'm on the waiting list for an orthophthingyabob (not just for speech, for muscles 'n things too!) - she is meant to be the best within a 200mile radius - fingers crossed it won't be long before I see her - in the meantime I've been doing every excercise I've read on CC and through google - well, until I ache too much - anyway, some seem to have worked especially the ones for lockjaw which is good.  I'd also forgotten to slightly dip my head (and in my case turn it to the right) which someone mentioned, and this has helped me since I read it - erm, yesterday! lol  Anyway, got to keep positive eh!? :)

luv 'n stuff

Andrea xxx

ps. I'm going to ring and nudge the clinic as it is a couple of weeks, but they did say about a month, but I don't want them to forget me!

 

 

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

by Dlynn1210 on Sat Mar 15, 2014 03:37 PM

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On Mar 14, 2014 11:47 AM caroline4 wrote:

Susan,

Hi, I'm on the waiting list for an orthophthingyabob (not just for speech, for muscles 'n things too!) - she is meant to be the best within a 200mile radius - fingers crossed it won't be long before I see her - in the meantime I've been doing every excercise I've read on CC and through google - well, until I ache too much - anyway, some seem to have worked especially the ones for lockjaw which is good.  I'd also forgotten to slightly dip my head (and in my case turn it to the right) which someone mentioned, and this has helped me since I read it - erm, yesterday! lol  Anyway, got to keep positive eh!? :)

luv 'n stuff

Andrea xxx

ps. I'm going to ring and nudge the clinic as it is a couple of weeks, but they did say about a month, but I don't want them to forget me!

 

 

Hi Sweetie -

I'm in a rush today and don't have time to read all the posts (we leave for Israel on Monday and I have a long list of errands to run today) but I wanted to respond back to your last post.  I apologise if I am repeating anyone. 

Vital Stim therapy works well for getting us off of the PEG tube and back to eating but once we are eating and begin having trouble swallowing we need esophageal dilation.  This is a problem we have to deal with most likely for the rest of our lives BUT it is really a simple fix.  The dilation stretches the muscles in our esophagus and we are immediately back to eating without any problems.  I have had it three times and am actually overdue now.  The procedure is done on an outpatient basis as it is a relatively simple procedure done in the hospital (we are asleep during the procedure).  I am having difficult eating a lot of foods right now but that difficulty is a gradual process (it doesn't happen overnight) so you do have time to see your orthophthingyabob.  My ENT has always done the procedure but she left her practice and moved too far away for me to go to so I'm looking for a new ENT. 

This is just another one of our little side effects post treatment but one we can tolerate.  Hear me roar - I am strong - I beat cancer.  smiles 

luv 'n stuff

Diana     

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

by Dlynn1210 on Sat Mar 15, 2014 03:41 PM

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Esophageal dilation is a very simple procedure.

http://www.asge.org/patients/patients.aspx?id=392 

Diana

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

by Dlynn1210 on Sat Mar 15, 2014 11:15 PM

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As I have shared before, whenever I start to feel a little sorry for myself - like how I now speak with a little lisp or have trouble eating certain foods - I think of those on CC and other loved ones who have valiantly fought this battle with less success.  I remember a grandmother whose last post was titled "Our angel now has his wings".  The angle was her six year old grandson - I remember her sharing in previous posts how difficult it was to watch her child watch her child as he was losing his battle.   

I have a friend that I moved next door to when we were three years old.  We started kindergarten together and as both of us were only children we chose to be sisters.  Sixty three years later we are still friends.  She beat breast cancer seven years ago only to have it come back a year later.  It was misdiagnosed and by the time that it was caught it had too strong of a hold on her.  She has been told that she will never be free of cancer - that it will one day take her life.  She traveled 10 hours round trip every Tues for chemo - but now the latest chemo is no longer working.  Her oncologist has told her that there are no other chemo drugs to try so they will try an experimental med.  Her husband suffered with Parkinsons and Alzheimers and when she could no longer take care of him she was forced to put him into a facility a few months ago where he passed away a few weeks later.  With everything she has been through I would like to share what Brenda posted today on her Facebook page - and after reading it I ask myself once again, what have I got to complain about? 

"What a beautiful day the Lord hath made.... Let us rejoice and be glad in it.....How true that is for today.....
Bright sun, birds singing & a cup of coffee sitting in my sunroom taking it all in..... GOD YOU ARE SO GOOD!!!!"

A short time later she wrote -

"Got some yardwork done, played with the neighbors twin boys and had a visit from some dear friends....
Dont get much better than that on a georgous day like today has been."

I may get tired much easier now, I may have a very limited diet, and I may not speak as clearly as I used to (and I avoid singing except in church with a large group) but I am cancer free.  Brenda is right - GOD YOU ARE SO GOOD!!!!  

Diana

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

by caroline4 on Sun Mar 16, 2014 12:36 PM

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Hi Diana!

I hope this reaches you before you leave to do more goodness for others, and putting them before yourself again.  To be able to thank you for your kind words of advice to me, yet again, and hopefully, enabling me to give you a HUGE hug (I'm not a 'huggy' type btw!), and send loads of my luv 'n stuff to you :)

Andrea xxx

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

by Dlynn1210 on Mon Mar 17, 2014 03:24 AM

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On Mar 16, 2014 12:36 PM caroline4 wrote:

Hi Diana!

I hope this reaches you before you leave to do more goodness for others, and putting them before yourself again.  To be able to thank you for your kind words of advice to me, yet again, and hopefully, enabling me to give you a HUGE hug (I'm not a 'huggy' type btw!), and send loads of my luv 'n stuff to you :)

Andrea xxx

Hi Andrea -

Last email check before going to bed.  We head to the airport tomorrow at noon and our flight is at 3:15 PM to Phildelphia.  Then to Tel Aviv from Philadelphia.   We leave at 6 PM and arrive in Tel Aviv at 2:30 PM the next day (they are 7 hours ahead). 

I'm glad I could be there for you - to share words of encouragement along the way.  Australia sounds like a wonderful vacation spot so who knows what the future will bring.  One thing Brenda has taught me - to live life to the fullest each and every day - make our time here count. 

Nicey went home to St. Lucia this past Wednesday and while we really miss having our little ray of sunshine with us, knowing that she has her life back - and a future where anything is possible - is the most wonderful feeling.   

luv 'n stuff

Diana

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

by Shereeclint on Mon Mar 17, 2014 03:20 PM

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Shalom Diana,

Sefarad erets nifla.

Meahel lekha mazal tov,

Clint

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