squamous cell skin cancer with spreading to facial/cranial nerve

I have oral cancer but the doctor frequently says it acts like skin cancer.  Mine is Head and Neck.  Treatments very much the same.  I have perineural involvement and that seems to be the reason for recurrance.  Stay on top of follow up appointments.  This site is not very active, feel free to private message me.

stephenaudrey said:

Did you have radiation

Did you have radiation therapy?  That is nasty.  I'm just 16 days past my last radiation treatment.  I'm focusing on recovering from that but I do also think about the fact that after all I've been through I don't know what is likely to happen to me now.  Are you a teacher?  Both my parents were teachers.  Teachers are the best.  My cancer started on my face and they did a MOHS but 10 years later or so it came back in my facial/cranial nerves.   Best wishes to you and thanks for the information.

Yes, I was a teacher when I joined CSN, I am retired now.  I also had radiation, more times than anyone should have the fun of having.  None of us know what is ahead, work on your recovery now and when you are feeling better, and you will, enjoy each day and make memories.

stephenaudrey said:

Thanks for the good advice. 

Thanks for the good advice.  I have mucositis in my mouth so I'm living on liquids.  How did you do with radiation?  Right now its uncomfortable to talk, my cheek is swollen, solid food is out of the question and sleep is problematical.  I have to get up every hour or so to try to make my mouth comfortable. 

you are only 2weeks out, still cooking.  Do you use an extra pillow?  I was still on the recliner at that point.  People in the Head and Neck site have discussed the mucus problem.  Some suggestions--mucinex, seems to loosen some of us up, Stoppers 4, needs to be ordered, ginger ale or some sparkling drink, water seems to go right over it, do continue drinking water.  Biotene products had a change last year, maybe two years now, look for xylitol in products.  If you can chew gum, sugar free (I could not do mint) sugar free hard candy to suck on.  Some have used a disk that sticks to your cheek, and there is a prescription that the doctor can prescribe, few in the H and N group have gone that way.  I had a shot daily the first time I had radiation so it wasn't so bad.  I have had more radiation and couldn't have the shot so I have dealt with the mucus.  You can stretch your mouth by rubber banding tongue depressors together, put them in you mouth, a few times a day.  My cheek is numb from my surgeries, are you adding protein to you drinks, you need to.  Just keep on keeping on, things do improve but rarely get everything back.

stephenaudrey said:

Its good to hear from you.  I

Its good to hear from you.  I am adding protein to a Carnation instant breakfast and then I add 5 insure drinks throughout the day.  I don't have a reclincer but thought it might be good.  I am soo anxious to be able to eat normally again but don't know when that will be.  They radiation therapy made me almost deaf in that ear so I'm very hard of hearing now.  They said I might get a little better but not much.   I have biotene liquid that I try from time to time but it burns.  My wife wants to schedule a vacation for November.  I can't even image that far away.  I'm still focused on trying to keep my mouth comfortable.  Thanks for the advice and support

I recently found this web site and your emails/posts.  I have squamous cell cancer of the facila nerves.  I don't know exactly how the radiation treatment will be done it shoud start in ten days to two weeks. I do not know what other kind of treatment will be given.  I am, of course, worried.  Many wrong diagnosis, many ill educated radioligists.  It should have been diagnosed ten mnths ago but all said it was Bell's palsy/

What do I have to look forward to? 

I hope you were able to  reach a comfortable spot with your treatment.