The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Nasopharyngeal survivor: Hep Please!

jillianjohnson
jillianjohnson CSN Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
I'm a 22 year-old Stage 4 Nasopharyngel carcinoma survivor. I have come a really long way since treatment ended in September 2005, but I am not satisfied with my progress at all. I had a g-tube placed pre-treatment, and had it removed way to soon so I had a second one placed. It's out now, but eating is a nightmare. I dread doing it. The thought of trying to choke down much of anything, much less keep it down is repulsive to me. My mouth is always so dry, I get cracks and sores. My teeth are falling apart from the radiation, but having them filled is like building a house on sand. The pain in my jaw will not go away. After 2 surgeries, they've given up on fixing it. I can only open my mouth far enough to get my thumb between my teeth. Are there any long-term survivors out there that can put a light at the end of this tunnel? I have a little boy to live for. I know this is a long journey, and a battle worth fighting. I've fought so hard. I just wish there was an end in sight. Feel free to write me a jillianjohnson828@suscom.net with any and all advice. Thank You.
Like Care

Comments

  • AuthorUnknown
    AuthorUnknown CSN Member Posts: 1,537 Member
    #2
    Hello,

    I am sorry to hear you have had such a difficult time but it is wonderful that you have such a great attitude.

    I encourage you to contact the American Cancer Society's National Cancer Information Center. They have a wealth of information and resources they can share with you. There may be local organizations as well that can provide support. They can be reached 24 hours a day at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of this page.

    Take care and be well,

    Dana
    CSN Dana
    Like Care
  • mjung
    mjung CSN Member Posts: 1
    #3
    AuthorUnknown said:

    Hello,

    I am sorry to hear you have had such a difficult time but it is wonderful that you have such a great attitude.

    I encourage you to contact the American Cancer Society's National Cancer Information Center. They have a wealth of information and resources they can share with you. There may be local organizations as well that can provide support. They can be reached 24 hours a day at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of this page.

    Take care and be well,

    Dana
    CSN Dana

    This is good information for me. My father is diognosed with Nasopharyngeal Cancer and passed a few weeks ago. My Grandfather is from a small village in Soughtern China, Canton, which I believe is where this came from. I'm researching, without any luck, to see if there is a possibility that this can be passed on to me or my children. Hopefully the information and phone numbers you listed will be of some help. I seen my father, and all I can say is I bless you all and my heart goes out to all.
    Like Care

Discussion Boards