Nasopharyngeal

inafoxhole88
inafoxhole88 Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Hi! I am fifteen years out of stage 3 Lymphoepithelioma of nasopharynx. Ca is cured but late effects of aggressive therapy (chemo and r.t.) are tough. Anybody relate?

Comments

  • JohnG
    JohnG Member Posts: 12
    #2
    I had nasopharyngeal cancer, finished chemo in December, and finished radiation in March so I can relate, but I hate to hear someone 15 years out is still bothered by the effects of treatment (I was hoping the effects would be lessening in me any month now). Other than the dry mouth, what effects are still tough 15 years down the road?

    John
  • emddebipa
    emddebipa Member Posts: 2
    #3
    hello my name is debi from pa i recently had surgery to remove cancer from my septum, i am now waiting to start all the reconstruction of my nose, my first step begins july 11th, i'd love to chat to you, my cancer was diagnosed as squimous cell
  • tomalexander
    tomalexander Member Posts: 16
    #4
    Hi! Can I ever relate to your message. Was diagnosed in Dec of 2001 with stage III nasopharangeal cancer. Began chemo and radiation in Feb 2002 and treatments stopped in June 2002.

    I am nowhere near your fifteen year survival, but my last two pet scans have shown no trace of cancer! My longest lasting effects are peripheral neuropathy(pronounced tingling and numbness in both feet), and having to drink a lot more liquid to help swallowing when eating. Chemo doc said the neuropathy may or may not go away, but guess I should nnot gripe too much since I am still here.

    Messages from long term survivors llike yourself are reassuring to the rest of us. Glad to see you are doing so well, and I hope and pray you continue to improve.
  • mercedes280sl
    mercedes280sl Member Posts: 1
    #5
    tomalexander said:

    Hi! Can I ever relate to your message. Was diagnosed in Dec of 2001 with stage III nasopharangeal cancer. Began chemo and radiation in Feb 2002 and treatments stopped in June 2002.

    I am nowhere near your fifteen year survival, but my last two pet scans have shown no trace of cancer! My longest lasting effects are peripheral neuropathy(pronounced tingling and numbness in both feet), and having to drink a lot more liquid to help swallowing when eating. Chemo doc said the neuropathy may or may not go away, but guess I should nnot gripe too much since I am still here.

    Messages from long term survivors llike yourself are reassuring to the rest of us. Glad to see you are doing so well, and I hope and pray you continue to improve.

    Keep the faith. It's not easy and it certainly isn't fair, but it can be beaten. I was diagnosed with lymphoepithelioma in Apr 1986 after being misdiagnosed for more than two years. The sinus cancer was so progressed that I was not expected to survive, but here I am, 18 years later. At 34 years old, I'm cancer free. The agressive treatment needed to eradicate the cancer has left me with some issues, but I'm here to **** about them. I certainly don't understand life, but I subscribe to the theory that everything must happen for a reason. Of course that doesn't keep the random chaos of life from pissing me off. But alas...I'm here. If anyone wants to chat, feel free to send me an email.

    We're all in this together.
  • barrysad
    barrysad Member Posts: 2
    #6
    tomalexander said:

    Hi! Can I ever relate to your message. Was diagnosed in Dec of 2001 with stage III nasopharangeal cancer. Began chemo and radiation in Feb 2002 and treatments stopped in June 2002.

    I am nowhere near your fifteen year survival, but my last two pet scans have shown no trace of cancer! My longest lasting effects are peripheral neuropathy(pronounced tingling and numbness in both feet), and having to drink a lot more liquid to help swallowing when eating. Chemo doc said the neuropathy may or may not go away, but guess I should nnot gripe too much since I am still here.

    Messages from long term survivors llike yourself are reassuring to the rest of us. Glad to see you are doing so well, and I hope and pray you continue to improve.

    AFTER READING YOUR BRIEF HISTORY, I WANTED TO SHARE MINE. I HAD A RARE NASOPHRYNGEAL CANCER 24 YEARS AGO. SIX WEEKS OF INTENSE RADIATION "CURED" IT,BUT WHAT HAS FOLLOWED HAS BEEN INTENSE: TINNITUS, NO SALIVA AFFECTING MY DENTITION AND STARTING 5 YEARS AGO NEUROPATHY IN BOTH FEET WHICH HAS AFFECTED MY MOBILITY. AM CURIOUS HOW THE MD KNEW OF CONNECTION BETWEEN TREATMENT AND NEUROPATHY.
  • barrysad
    barrysad Member Posts: 2
    #7
    mercedes280sl said:

    Keep the faith. It's not easy and it certainly isn't fair, but it can be beaten. I was diagnosed with lymphoepithelioma in Apr 1986 after being misdiagnosed for more than two years. The sinus cancer was so progressed that I was not expected to survive, but here I am, 18 years later. At 34 years old, I'm cancer free. The agressive treatment needed to eradicate the cancer has left me with some issues, but I'm here to **** about them. I certainly don't understand life, but I subscribe to the theory that everything must happen for a reason. Of course that doesn't keep the random chaos of life from pissing me off. But alas...I'm here. If anyone wants to chat, feel free to send me an email.

    We're all in this together.

    ARE YOU A BETTER OR WORSE PERSON FOR HAVING GONE TO HELL AND BACK? DO YOU APPRECIATE YOUR LIFE AND THOSE AROUND YOU MORE OR LESS THAN BEFORE? NOW THAT YOU KNOW THAT YOU ARE VULNERABLE TO "C", HAVE YOU CHANGED YOUR LIFESTYLE?
  • robin58
    robin58 Member Posts: 2
    #8
    my husband is going through it now

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