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Does it ever heal???

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

Had squamous cell carcinoma in the nasopharynx two different times, so been fried twice by two different rads (photon and then proton radiation) any how and I know this is gross, but I blow a hunk of my nasopharynx out of my nose every week or so. I blame my memory going on this cause i feel like I blow a piece of my brain out every time this happens. It seems to happen a little less over the past four years since my last round of proton radiation, but the dr said that this may never heal. Just wondere if anyone else sneezes part of their brain out also...lol and if it ever gets better because it really grosses me out and sometimes bleeds pretty bad. I'm not complaining just wonder if anyone experiences the same thing after two different rounds of radiation. My radiation rounds were about fifteen years apart.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I think it depends a lot on exactly where the radiation was centered.  I have had radiation twice as well, spaced 13 years apart.  The first was for BOT cancer, and I didn't notice any of this.  The second was ffor cancer in the soft palate, so the radiated field was a lot higher.  Although never said, I am sure the radiation intersected my maxillary sinuses and tear ducts.  Toward the end of radiation I had tremendous nasal and lacrimal drainage.  Enough that if I went outside in cold weather, I was blinded by tears.  For almost a year following rads, my nose ran terribly when I tried to eat.  Now I just have this huge discnarge from my sinuses, won't bother to describe it.  It may very well be permanent, though the treatment physicians aren't exactly deffinite when  I ask them.  To me, its a small price to pay.

 

best to  you

 

Pat

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

Yes it is a small price to pay...just all the other things like eating and talking thrown on top of the little things get me down sometimes. You just don't realize how much social interaction you miss when you can't eat normally and are afraid to choke and shoot your lunch on everyone at the table. I guess I just miss being normal...sorry don't mean to be a downer just being honest. Thank God my family loves and puts up with me : ) that is definitely why fight so hard to be around for them.

thanks,

john j

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

john, i very much understand about not comfortable having social interaction.  i went 1.5 yrs w/o being able to talk so i had NO social interaction.  now that i can talk i do, but i have to worry about my food coming back up my throat when i talk.  thats a big problem so i try to talk as little as possible until about 10 min after my last bite.  plus i have to chew and chew and chew (so the food is small enuf to not get stuck in throat) so my lunch partner is always waiting awhile on me to finish my meal, grrr.  they don't seem to mind tho, it just bothers me a little...lol.  like u, i miss be'n normal but we have to accept the fact that, like john says, we are ABI-NORMAL.  this is the new norm for us.  i hope u r able to begin to accept ur new normal and move forward.  best of luck to u.

dj

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

Thank you for your very kind words! I think we all sometimes (I guess I'm speaking for myself) write in because we are feeling like we have it worse than anyone, but others have it even worse and they are still happy and inspiring to us all! Thank you so much and God bless you : )

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Viilik70, u r very welcome and may God bless you also.

dj

KTeacher
Posts: 991
Joined: Jan 2011

that is mentioned often here.  I've gone the radiation route 3 times now.  The first time I had a non ending clear runny nose.  I had Kleenex everywhere.  I let people know to let me know that I needed to use my Kleenex, I also had no feeling and didn't know unless I looked down and saw snot on my shirt!  Oh well, I taught Kindergarten, so I was in good company!  This last time I had a sinus abcess during chem,rad treatment.  Got to take a week off for surgery.  Radiation was directed at eye sinus area.  Now so dry.  Need to use a sinus wash with saline to blow my nose, and yes, quite a yucky job!  Need to do this often, should do it daily.  Thanks for mentioning, this topic doesn't come up often.

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

Geez I can't I imagine radiation 3x! I did it twice and I really do not want to do it again and to be honest don't think that they would even let me. You are a soldier for sure and thanks for replying for all of us that feel like we are the only ones on earth going through this crazy stuff helps SO much in our own fights! It really helps when I'm feeling sorry for myself. 

Thank you again and God bless!

john j

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Hi John

 

I am like you twice radiated for NPC, the last time was back in 2005 and have been you alright. I took a very bad Mastoid infection about 2 years ago that done a lot of damage to the already damage area in my sinus. I am not sure if you know but keep stretching your Jaw everyday 4 or 5 times a day. One of the bad side effects for me is I can’t open my Jaw more the 15mm and that makes it hard for a dentist to work on my teeth.

 

God bless my friend

Hondo

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

I truly feel for you! I didn't do my jaw stretching enough after my last round of proton radiation and I also could only open my jaw around a quarter of an inch. That super stunk, but I got a sore on my cheek that turned into a whole in my cheek, so everytime I drank it came out Of the hole. Long story short part of my lower jaw died from all of the radiation, so they cut that part out and now I can open my jaw, but the top and bottom do not line up. I hope they can do somthing for your jaw. I am stretching my jaw pretty much every day, but I will get better with it and thank you for the advice and for your reply. God bless!

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