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Joined: Jul 2003
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Wow, this is interesting. I have been having twitching in both arms this last 2 months and left leg has just given out 3 times too causing me to fall. I'm 20 years post treatment but I also have cardiac and pulmonary sarcoidosis with an ICD so they are unable to do an MRI. Waiting for results of head scan. Life just gets more interesting.


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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We have some similar neurological issues. ALS is the most common motor neuron disease, but for those of us that had radiation 20 years ago, the same symptoms are more likely from dysautonomia. There is a section on the constellation of problems that this radiation related damage can cause in the treatment section of the website, complications of treatment.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Kris and Brian, hello from a ways back!
This topic is most interesting and I too am experiencing some issues. Some that are bothersome and some that I wouldn't have worried about maybe I should be worried.

While I feel like I'm doing pretty well overall I'm reminded that most of my doctor visits are reminders that they aren't familiar with long-term radiation survivors.

Kris, your comment of pulmonary sarcoidosis has just lead me to a Mayo article that in turn will be brought to my GP very soon. He has been struggling to explain what has been seen in my right lung on several CT scans. Additionally, about two years ago I started having irregular heart rhythms (PVCs) that were considered to be caused by a failing mitral valve. A year ago that valve was successfully repaired but the rhythm problems have not fully resolved. Now I read that sarcoidosis could be something to look into for that as well.....

Could I ask why you are not a candidate for MRI? I have two MRI's scheduled in the next month.

At any rate, I'm happy to see that both of you are still forging ahead. Brian I did read some of what you've been through recently too.

Mark

Last edited by Mark; 06-07-2022 05:30 AM. Reason: typo

Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Kris, I re-read and see you have a pacemaker defib and that is why no MRI.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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