Nasopharyngeal Cancer

WithHisGrace
WithHisGrace Member Posts: 1
in Head and Neck Cancer #1
Looking for some fellow fighters/survivors. I was diagnosed with NPC last May at the age of 39. I completed treatment in late October and am now just trying to recover from the harshness of the treatment. I have never talked with anyone else who has been diagnosed with this rare disease and would love to know that I am not alone.
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Comments

  • stevenl
    stevenl Member Posts: 587
    #2
    Alone
    Sorry for your need to be here, but know that you are not alone now.
    You will find many here that have been through what you are, and will
    be there for you. I had tonsil cancer and I am a 2 year survivor.
    That is what this board is all about; SURVIVING. Ask questions
    and the folks will answer them.

    Best,
    Steve
  • caregiver99
    caregiver99 Member Posts: 27
    #3
    npc
    I have seen many posts here from npc survivors. My girlfriend was diagnosed with stage 4 npc last july at age 31. She is doing good now and continue to recover.
  • HAWVET
    HAWVET Member Posts: 318
    #4
    caregiver99 said:

    npc
    I have seen many posts here from npc survivors. My girlfriend was diagnosed with stage 4 npc last july at age 31. She is doing good now and continue to recover.

    Welcome
    Welcome to the forum. You have come to the right place with many cancer survivors who can provide answers and lead you on the road to recovery. There are many nasopharyngeal cancer (NPC) survivors here. I too am a survivor and completed my treatment in June 1998. Check this thread originally posted by Hondo.

    http://csn.cancer.org/node/185696
  • Pam M
    Pam M Member Posts: 2,196
    #5
    Welcome
    My cancer was base of tongue - hoping some more NPC survivors chime in soon. Surely not alone.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #6
    Pam M said:

    Welcome
    My cancer was base of tongue - hoping some more NPC survivors chime in soon. Surely not alone.

    Welcome Too
    Although I don't share the same disease I still want to welcome you to the forum. Lot's of folks here with tons of knowledge. Just ask.

    I wish you well with your recovery,

    Tommy
  • Cathelen72
    Cathelen72 Member Posts: 33 Member
    #7
    NPC
    Hi. I was diagnosed with NPC last May as well. Finished treatment in November and recovering quite well now. I would not have gotten through this ordeal as well as I did without the people here in this board. You have come to the right place. It seems late 30's is the magic number for NPC as I had just turned 39 when I was diagnosed. I am now welcoming 40 with open arms. You are NOT alone in this!
  • sumarah8
    sumarah8 Member Posts: 32
    #8
    Cathelen72 said:

    NPC
    Hi. I was diagnosed with NPC last May as well. Finished treatment in November and recovering quite well now. I would not have gotten through this ordeal as well as I did without the people here in this board. You have come to the right place. It seems late 30's is the magic number for NPC as I had just turned 39 when I was diagnosed. I am now welcoming 40 with open arms. You are NOT alone in this!

    npc here too...
    I got diagnosed for Npc stage 2b last Sep 2011, still on treatment, 2 more cycle of adjuvant chemo, I'm 35 yrs old, Asian, living here in the US, just to let you know there is a lot of survivors here for npc and we will be one of them...
  • sumarah8
    sumarah8 Member Posts: 32
    #9
    Cathelen72 said:

    NPC
    Hi. I was diagnosed with NPC last May as well. Finished treatment in November and recovering quite well now. I would not have gotten through this ordeal as well as I did without the people here in this board. You have come to the right place. It seems late 30's is the magic number for NPC as I had just turned 39 when I was diagnosed. I am now welcoming 40 with open arms. You are NOT alone in this!

    npc here too...
    I got diagnosed for Npc stage 2b last Sep 2011, still on treatment, 2 more cycle of adjuvant chemo, I'm 35 yrs old, Asian, living here in the US, just to let you know there is a lot of survivors here for npc and we will be one of them...
  • caregiver99
    caregiver99 Member Posts: 27
    #10
    sumarah8 said:

    npc here too...
    I got diagnosed for Npc stage 2b last Sep 2011, still on treatment, 2 more cycle of adjuvant chemo, I'm 35 yrs old, Asian, living here in the US, just to let you know there is a lot of survivors here for npc and we will be one of them...

    NPC
    My girlfriend and few others I know diagnosed with NPC grew up in hong kong. They call this Cantonese cancer because it is the most common in south china.
  • kdwers
    kdwers Member Posts: 16 Member
    #11
    My husband was diagnosed
    My husband was diagnosed with Nasopharyngeal Cancer Stage IVc (metastisized to Lymph Nodes and Liver, both lobes) in September 2010. He completed treatment last February. He obtained complete remission and is doing well. He is going for Pet and MRI in 2 weeks and we feel confident that "all will be well". It did take some time to recover from the harsh treatment for this diagnosis. Now it's sometimes hard to believe he has been through what he has, because he is doing so well. The diagnosis frightned us as the Dr's have told us no cure, but the cancer could be treated. They did not give him the prognosis we wanted to hear, but he is doing so well,and we have very strong faith, that we feel he has been healed. Stay strong and just know there are people who have returned to "normal" after going through the treatment and diagnosis of NPC. You are not alone!

    I have a question as well? Have any of you NPC survivors had metastisis at diagnosis to distant organs? Just wondering as this seems to be "the thing" that the Dr's consider when talking to us about future prognosis and I can't help but let it haunt me a bit.

    WithHisGrace, you are in my prayers.
  • NeoTheron91
    NeoTheron91 Member Posts: 75
    #12
    NPC
    Hi

    I was diagnosed with NPC Stage IV on August, 2011 last year and finished my treatment 1 month ago.

    Welcome to the club.

    cheers,
    Neo
  • adventurebob
    adventurebob Member Posts: 691
    #13
    You're not
    I just turned 40 in September. Had a clean PET in December after a year and a half of treatment for Stage 4 NPC with multiple bone mets. Just finished a 40 mile backpack trip in Grand Canyon last week. Life is good!

    AB
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    WHG
    You are not alone. I was 53 when my two tumors showed in early-11/08, and finished tx in early 4/09. Returned to work a month after my last rad, while still trying to injest anything other than Ensure and water, but within a couple months I was able to start eating many foods, though the tastes still remain somewhat altered.

    In my recovery, couple of the things I found helpfull were 1) prescription sodium flouride toothpaste/trays for the teeth. Rads do a number on the tops of teeth, and dental work for those of us w/teeth is a continuing issue. I've had one root canal and two Crowns since the end of tx, and had the tops of 6 teeth rebuilt- will be 8 by the end of the month. 2) Still use Biotene, as the dry mouth of saliva loss will last a long time. 3) Loss of gum tissue can be a problem with the base of teeth exposed and causing tongue issues, for which a Periodontist is a good Dr to get help from. I saw what I thought was further gum damage happening months after tx, and it took my Dentist to tell me what was happening was not further damage- it was a matter of the swelling of the gums finally lessening, and the true state of my gums finally coming into view.

    As others have stated, there are a number of us NPC Survivors, here. Any questions or concerns- please let us know about. Lot of good people w/good info to be had.

    Welcome

    kcass
  • timreichhart
    timreichhart Member Posts: 194
    #15
    Kent Cass said:

    WHG
    You are not alone. I was 53 when my two tumors showed in early-11/08, and finished tx in early 4/09. Returned to work a month after my last rad, while still trying to injest anything other than Ensure and water, but within a couple months I was able to start eating many foods, though the tastes still remain somewhat altered.

    In my recovery, couple of the things I found helpfull were 1) prescription sodium flouride toothpaste/trays for the teeth. Rads do a number on the tops of teeth, and dental work for those of us w/teeth is a continuing issue. I've had one root canal and two Crowns since the end of tx, and had the tops of 6 teeth rebuilt- will be 8 by the end of the month. 2) Still use Biotene, as the dry mouth of saliva loss will last a long time. 3) Loss of gum tissue can be a problem with the base of teeth exposed and causing tongue issues, for which a Periodontist is a good Dr to get help from. I saw what I thought was further gum damage happening months after tx, and it took my Dentist to tell me what was happening was not further damage- it was a matter of the swelling of the gums finally lessening, and the true state of my gums finally coming into view.

    As others have stated, there are a number of us NPC Survivors, here. Any questions or concerns- please let us know about. Lot of good people w/good info to be had.

    Welcome

    kcass

    Your not alone
    Your not alone I am a NPC survivor for a good year now and I was only 24 when I found out I had that nasty cancer and only was married for 6months. But as of today I am still cancer free but dealing with them nasty side effects they dont tell you about.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #16
    adventurebob said:

    You're not
    I just turned 40 in September. Had a clean PET in December after a year and a half of treatment for Stage 4 NPC with multiple bone mets. Just finished a 40 mile backpack trip in Grand Canyon last week. Life is good!

    AB

    the fact that you can post
    means you survived the trip. How was it?
  • kdwers
    kdwers Member Posts: 16 Member
    #17
    adventurebob said:

    You're not
    I just turned 40 in September. Had a clean PET in December after a year and a half of treatment for Stage 4 NPC with multiple bone mets. Just finished a 40 mile backpack trip in Grand Canyon last week. Life is good!

    AB

    That's awesome, you are a
    That's awesome, you are a great positive for those following down the road of NPC! Glad to hear you have done so well!!! I do realize that it's not easy~peasy, but nice to know you can still enjoy life to the fullest, or maybe even more!
  • adventurebob
    adventurebob Member Posts: 691
    #18
    longtermsurvivor said:

    the fact that you can post
    means you survived the trip. How was it?

    GC
    Awesome!My favorite place in the world with my favorite person. No room for cancer in that huge place.
  • Resilient
    Resilient Member Posts: 2
    #19
    NPC discovered on Sept 2011
    Hello WithHisGrace,

    I too am looking for NPC persons to chat with. Honestly, I didn't want to join this site because I was scared, but I am glad I did because it would be nice to chat with. Thank you everyone for your stories.
  • robertjuy
    robertjuy Member Posts: 45
    #20
    We're doing fine
    My wife is post treatment and her burned skin has become smooth again. Hair is growing. Taste is coming back. No taste of salt or sugar and man made tastes are chemical tasting now. Just believe in yourself and you will be fine. She was diagnosed in July of last year. We'll have our tests done next month. She is from South China and Hong Kong. She is the only one in her bloodline to have it. Put lots of eucerine cream on. The greasy stuff and let it air out.
  • zybrex
    zybrex Member Posts: 1
    #21
    You will feel better
    One year ago this month I started my radiation treatment for NPC. This year it's continuation of recovery. Some of my taste is coming back, side effects not as severe, saliva production is sort of normal, and I'm a bit more energetic. There are those good days and bad days. I'm 36 years old, Chinese, in NYC and willing to provide my experience to those that might be feeling alone battling NPC. I know I felt alone, because NPC is not common here in the USA and none of my friends really knew anything about it. They asked their relatives or parents who were from Hong Kong/China, if they had information. They knew about it, as it's common in the Canton province. But they were of no help regarding what treatments are given in Hong Kong/China or personal experiences. It's good to know that at least my friends are aware of this type of cancer that is common in our families' country of origin. My treatment consisted of radiation and chemotherapy (Cisplatin and 5FU). I go to post-treatment meetings with other survivors of head/neck cancers and they have been helpful. I was fortunate enough to meet a 5+ year survivor of NPC in the group, who happened to be also Chinese. That person has been helpful in my recovery, reassuring me that eventually all the side effects of treatment do eventually go away or are manageable. So yes, there are others with NPC, you are not alone, and some people are willing to talk and share.

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