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Mucoepidermoid Carcinoma

jaylene19's picture
jaylene19
Posts: 9
Joined: Oct 2002

I am 23 and a survivor or mucoepidermoid carcinoma (salivary gland cancer). I have had a recurrence as recent as February 2002. They finally decided to follow up my most recent surgery with radiation (I was diagnosed in 1998 and have had four surgeries since). I am hoping this was the key to eliminate the cancer for good. I had facial paralysis for a while, and I'm now experiencing something called a Lhermite Sign (tingling of the neck when I "flex" my neck muscle). The doc says it's nerve damage of some sort from radiation. Has anyone had this? How soon does it go away?

Also, I am wondering if anyone has had surgery and radiation and THEN a recurrence. What is the protocol if it comes back again? What is the prognosis?

God Bless you all and hang in there! :)

rrman
Posts: 12
Joined: Apr 2002

Hi Jaylene, What you're experiencing (LHermitte's Syndrome) is a common side effect of radiation. Believe it or not it's somehow related to the spinal cord. Have no fear, it usually takes about 6 to 8 months after radiation for it to disapate...I've been there and I know. Hang in there, it'll only get better. God Bless...Peter

blitzbob`
Posts: 17
Joined: Jan 2003

Hi Just to say what awfukl things you have all been through and some of you so young there mut be something in the food it was never like this 50 years ago

Rhinonixx
Posts: 6
Joined: Apr 2004

Hi Jaylene,
I'm 54 and developed a tumor under my upper lip in the Spring of '97. They removed the tumor and discovered that it was Muco. They irradiated me in the summer of '97 and I recurred in Feb of '98 and had to have radical resectioning done to my nose,lip and cheek. I recurred again in the Spring of 2000 and had to have my nose removed in Nov of 2000. The cancer had been there so long (they thought it was "late radiation effect" - a slight misdiagnosis to say the least)that it spread all over the nose and up into the nasal cavity and I had to have a cranial base surgery to remove the frontal sinus, olfactory bulb(smell)and the font portion of the cranial floor. You can only have radiation once, them its cut and cut again. I am told it tends to migrate to the lungs. Pray it does not. Mine never has and they believe that because it hasn't in all this time, that it probably will not. They think they finally have beaten this. I hope they are right. I have been going to U of M in Ann Arbor, MI regularly since Dec 2000. If you have any further questions you may also contact me at Rhinonixx@aol.com
God Bless,
Randy

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