nasopharyngeal cancer

jcurtis18
jcurtis18 Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
I am looking for anyone who has had this type of cancer.Or who knows someone who has had it.It is rare in the United States and I am having difficulty finding people to talk with about this .Any information would be greatly appreciated.Thanks!
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Comments

  • coke
    coke Member Posts: 3
    Jcurtis,
    My dad had this type of cancer. My mom knows more about it than I do, but any info I can give you i will
    Coke
  • anet48
    anet48 Member Posts: 1
    hi.. one of my family member has nasal pharyngeal cancer.. jus wondering if u know someone that has this kind of cancer b4... please email me back..thanx :)
  • babi
    babi Member Posts: 7
    Hi! My brother at 41 has nasoharyngeal cancer at stage four. Please contact me so we can talk about it.
  • jerrikehoe
    jerrikehoe Member Posts: 27
    anet48 said:

    hi.. one of my family member has nasal pharyngeal cancer.. jus wondering if u know someone that has this kind of cancer b4... please email me back..thanx :)

    I had this cancer at age 29 I have had several major surgeries and reoccurances am now a 55 year old retired realtor and a full time student so I have a fair bit of knowledge aout it what would you like to know
  • _xia_
    _xia_ Member Posts: 13
    Hi.

    I am 34 and was recently diagnosed with Nasopharyngeal cancer (stage IV)

    I will begin the treatment within the next couple of weeks.

    Nasopharyngeal cancer counts up to 0.25% of all the cancers in the US. It affect men half as much och as in women.

    It is more common in South Esat Asia, The Arctic Region or North Africa.

    I would be happy to hear from you.

    Best regards,

    Mia
  • jerrikehoe
    jerrikehoe Member Posts: 27
    j I hae had recurrances of this cancer for 20+ years it is a very rare cancer and as I know wheen I was first diag at the time there were only 27 known reported cases I am being followed by The American Institute of Pathology in Washington I am canadian but my ENT drs use the center for many other things it is funded by the US Military I have beebn searching for years to find someone other than myself with this. I would appreciate if you would get in touch with me at jerrikehoe@hotmail.com
  • tuffmom
    tuffmom Member Posts: 1

    I had this cancer at age 29 I have had several major surgeries and reoccurances am now a 55 year old retired realtor and a full time student so I have a fair bit of knowledge aout it what would you like to know

    I am 31 years old. I was diagnosed with nasopharyngeal cancer at age 30. Looking back, I think it probably began at age 29. By the time of diagnosis, I was classified as Stage III with two lymph nodes positive. I completed radiation and chemo with complete response this past December. My docs told me due to the anatomic location (close to brain stem, carotid artery, facial and ocular muscles and nerves) surgery was impossible. Tell me more about your surgeries. What were your symptoms/ how did you first get diagnosed? Mine was an ear ache and a "marble" knot in my neck (one of the lymph nodes). I'm so happy treatment is FINALLY over and my cancer is gone! I'm just scared to death of recurrence. I'm just so afraid it will come back. I go to my ENT doc every six weeks for a scope. Did you have that? I'm not sure of the technical term for this tool, but it looks like a flexible fishin' pole. Please respond. Thank you so much.
  • rogerbfi
    rogerbfi Member Posts: 16
    tuffmom said:

    I am 31 years old. I was diagnosed with nasopharyngeal cancer at age 30. Looking back, I think it probably began at age 29. By the time of diagnosis, I was classified as Stage III with two lymph nodes positive. I completed radiation and chemo with complete response this past December. My docs told me due to the anatomic location (close to brain stem, carotid artery, facial and ocular muscles and nerves) surgery was impossible. Tell me more about your surgeries. What were your symptoms/ how did you first get diagnosed? Mine was an ear ache and a "marble" knot in my neck (one of the lymph nodes). I'm so happy treatment is FINALLY over and my cancer is gone! I'm just scared to death of recurrence. I'm just so afraid it will come back. I go to my ENT doc every six weeks for a scope. Did you have that? I'm not sure of the technical term for this tool, but it looks like a flexible fishin' pole. Please respond. Thank you so much.

    I too was so looking for someone at the date of your posting.(1-30-03)? My husband was diagnosed in October,2002. I put the info.on the message board, I did not see this CSN until tonight. DUH! He did the treatments rad.w/chemo, then more chemo. (stage 4) Fluid filled ear appx. 1 year, right ear tube,it fell out, 2 fluid ears. ent just said I am putting in perm. tubes & doing a biopsy which I fully expect to be cancer. WHAT!? By this time he also had bi-lateral lymph nodes going on. Right side of face/neck very swollen.He is thin now, after, but was heavy 255lbs. at the time.It was not as noticable (to me) until looking at photos. I could ramble on all day, I will spare you at the moment. 10:47 P.M. in CA Please reply when you have the time. p.s. So far so good, eating is better. Almost 1 year from radiation! I have kept everything on calender,and I am working on website. I hope all is well with you still. We did meet a few people who will be friends for life. Great hopes to you in all you do.
  • LiveStrong427
    LiveStrong427 Member Posts: 5

    j I hae had recurrances of this cancer for 20+ years it is a very rare cancer and as I know wheen I was first diag at the time there were only 27 known reported cases I am being followed by The American Institute of Pathology in Washington I am canadian but my ENT drs use the center for many other things it is funded by the US Military I have beebn searching for years to find someone other than myself with this. I would appreciate if you would get in touch with me at jerrikehoe@hotmail.com

    hello
    My name is Bryan Haught, 29yrs old, live in NY and a Cancer survivor of NPC stage 4T for 7yrs.

    I read a posting you put up in 2002 about being diagnosed with NPC again, so u had a recurrance after being cancer free for 20+ years?
    I was diagnosed in 2004, received chemotherapy and radiation for 5 months, no surgery, was diagnosed cancer free in Dec. 2004. No recurrence since thank God but I can tell you life has been far from easy. Can't eat or drink by mouth still and its going on 7yrs, eat via feeding tube / Peg tube inserted in my abdomen, my only source of nutrition for the past 7yrs. Also auger from extreme fatigue, muscles and tissues in my head, neck and shoulders are severely damaged du to the treatment, in constant pain with limited movement of my neck and shoulders. Now my voice is going on me, its very hard to understand me not to mention it takes alot out of me to talk, have been times where I have passed out after talking because of lack of oxygen to my brain, its crazy.

    Maybe we can help each other out with information or resources that we know of, its hard to find someone out there to talk to with this type of Cancer, its very rare. I do hope all is well with you and I know you are continuing to battle this illness, I m here if u want to chat or anyway I could help. I still search the web daily for new procedures or surgeries that could help me out in some way, so I am always finding useful info.

    Keep in touch.

    Email me at anytime: Bryan_Haught@yahoo.com
    (anybody else reading this would like to contact me you are welcome to)
  • LiveStrong427
    LiveStrong427 Member Posts: 5
    babi said:

    Hi! My brother at 41 has nasoharyngeal cancer at stage four. Please contact me so we can talk about it.

    hello
    My name is Bryan Haught, 29yrs old and a cancer survivor of NPC going on 7yrs. If I could be of any help at all, even if its just to chat please feel free to email me: Bryan_Haught@yahoo.com

    I know its going on 8yrs since you posted this but hopefully your brother is winning the battle, my prayers are with him and your family
  • LiveStrong427
    LiveStrong427 Member Posts: 5
    _xia_ said:

    Hi.

    I am 34 and was recently diagnosed with Nasopharyngeal cancer (stage IV)

    I will begin the treatment within the next couple of weeks.

    Nasopharyngeal cancer counts up to 0.25% of all the cancers in the US. It affect men half as much och as in women.

    It is more common in South Esat Asia, The Arctic Region or North Africa.

    I would be happy to hear from you.

    Best regards,

    Mia

    hello
    I am a NPC stage 4T cancer survivor, if you are still in need of info or just someone to talk to please contact me at Bryan_Haught@yahoo.com

    I know its been 9 yrs since u posted this but my hope is that you have beat the cancer and still pushing on, look forward to your reply
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    hello
    My name is Bryan Haught, 29yrs old, live in NY and a Cancer survivor of NPC stage 4T for 7yrs.

    I read a posting you put up in 2002 about being diagnosed with NPC again, so u had a recurrance after being cancer free for 20+ years?
    I was diagnosed in 2004, received chemotherapy and radiation for 5 months, no surgery, was diagnosed cancer free in Dec. 2004. No recurrence since thank God but I can tell you life has been far from easy. Can't eat or drink by mouth still and its going on 7yrs, eat via feeding tube / Peg tube inserted in my abdomen, my only source of nutrition for the past 7yrs. Also auger from extreme fatigue, muscles and tissues in my head, neck and shoulders are severely damaged du to the treatment, in constant pain with limited movement of my neck and shoulders. Now my voice is going on me, its very hard to understand me not to mention it takes alot out of me to talk, have been times where I have passed out after talking because of lack of oxygen to my brain, its crazy.

    Maybe we can help each other out with information or resources that we know of, its hard to find someone out there to talk to with this type of Cancer, its very rare. I do hope all is well with you and I know you are continuing to battle this illness, I m here if u want to chat or anyway I could help. I still search the web daily for new procedures or surgeries that could help me out in some way, so I am always finding useful info.

    Keep in touch.

    Email me at anytime: Bryan_Haught@yahoo.com
    (anybody else reading this would like to contact me you are welcome to)

    HONDO
    There's a guy on here, HONDO...he's been Dx NPC three times I believe over around nine years going on now....

    He's been through the mill, but alive and kicking....

    Maybe you newbies should start a new NPC member thread...he'll post.

    BTW, welcome to the forum...awesome folks here.

    Myself, STGIII SCC HPV+ Tonsils, back in January 2009...sixteen weeks, four different chemos, seven weeks which was concurrent chemo and 35 daily rads.

    So far, doing well....pretty much back to 100% and clean and clear.

    Best,
    John
  • timreichhart
    timreichhart Member Posts: 194
    Skiffin16 said:

    HONDO
    There's a guy on here, HONDO...he's been Dx NPC three times I believe over around nine years going on now....

    He's been through the mill, but alive and kicking....

    Maybe you newbies should start a new NPC member thread...he'll post.

    BTW, welcome to the forum...awesome folks here.

    Myself, STGIII SCC HPV+ Tonsils, back in January 2009...sixteen weeks, four different chemos, seven weeks which was concurrent chemo and 35 daily rads.

    So far, doing well....pretty much back to 100% and clean and clear.

    Best,
    John

    I am also a NPC surviour
    Hi
    I am also a NPC survivor for about a year now I found out I had NPC 4+ back in February of 2009 by having a major ear infection in the right ear and I was only 24 at the time and just gotten married 6 or 7 months before I found out I had cancer but Started treatments in march with 3 months of chemo first then 7 weeks for 5days of IMRT radiation last. Now I am 26 and cancer free for about a year now but just dealing with some nasty post cancer treatment problems like, Neck/Shoulder problems, Staph Infection in the lungs, Major Hearing lost, Numbness in the legs/toes/arms/fingers, Light headiness, Major Vision changes and anxiety attacks everyday. But I am taking meds for light headiness,anxiety problem,numbness and headaches. These are the side effects that the doctors dont tell you because I am finding new side effects each day.
  • sonoio59
    sonoio59 Member Posts: 1

    hello
    My name is Bryan Haught, 29yrs old and a cancer survivor of NPC going on 7yrs. If I could be of any help at all, even if its just to chat please feel free to email me: Bryan_Haught@yahoo.com

    I know its going on 8yrs since you posted this but hopefully your brother is winning the battle, my prayers are with him and your family

    I want to be a survivor...Pls help!
    I've been diagnozed with adenocarcinoma sinus since march 2009...I had chemio treatment, then chemio and radiation..november 2010 surgery on my sinus...then August 2011 another brain surgery...after my 3 months check up again are findings for cancer//Doctors sugesting another treatment with chemio and radiation..anybody knows anything new?Pls let me know...I want to win!!
  • aprilshower55
    aprilshower55 Member Posts: 31

    I am also a NPC surviour
    Hi
    I am also a NPC survivor for about a year now I found out I had NPC 4+ back in February of 2009 by having a major ear infection in the right ear and I was only 24 at the time and just gotten married 6 or 7 months before I found out I had cancer but Started treatments in march with 3 months of chemo first then 7 weeks for 5days of IMRT radiation last. Now I am 26 and cancer free for about a year now but just dealing with some nasty post cancer treatment problems like, Neck/Shoulder problems, Staph Infection in the lungs, Major Hearing lost, Numbness in the legs/toes/arms/fingers, Light headiness, Major Vision changes and anxiety attacks everyday. But I am taking meds for light headiness,anxiety problem,numbness and headaches. These are the side effects that the doctors dont tell you because I am finding new side effects each day.

    NPC surviour
    hi,
    i am chinese and 58 years old. my parents born in canton china, and i born in hong kong.
    i notice slight bleeding when i did my nasal potty. i did not think anything of it for about 9 months. then i started feeling water in my ears, and pressure in the ears. i was scared to go to ent, cause i was afraid of the worse. i had stage 3 npc, and stage 1 in my lymph nodes. started 35 days of radiation and chemo in july and aug my 2nd chemo. nov was my 3rd and last chemo. i had a feeding g-tube put in two weeks into my radiation and removed
    my tube in jan. when i wake up from my sleep my neck and shoulders hurt each day. i have schedule for eye and hearing exam next month. i was giving myself sometime to hopefully heal a little more before getting new glasses. i do not know if i need hearing aides. i do notice my hearing is not the same. i often hear ringings sounds in my ears. my biggest challenge is sleeping and eating. as you may know i have very dry mouth and i have not been able to eat much solid foods. i drink 3 or 4 ensure plus with 350 calories a day. i eat a table spoon of oatmeal with almond milk and slice of apple diced small with cinnamon for breakfast. i make a protein smoothie for lunch and dinner stir fry few slices of zucchini,and 2 mushrooms. i usually get about 11/2 hour of sleep and awaken with very dry throat. i would drink some water and rinse with biotene oral rinse and use biotene jel before trying to sleep again. i usually get up about 3 or 4 times a night before my alarm wakes me up for work.

    are you able to eat any solid foods? do you have problem swallowing? i am glad to have found this site, and know there are others who had the same kind of cancer as myself.
  • CherriBlossom
    CherriBlossom Member Posts: 44 Member

    NPC surviour
    hi,
    i am chinese and 58 years old. my parents born in canton china, and i born in hong kong.
    i notice slight bleeding when i did my nasal potty. i did not think anything of it for about 9 months. then i started feeling water in my ears, and pressure in the ears. i was scared to go to ent, cause i was afraid of the worse. i had stage 3 npc, and stage 1 in my lymph nodes. started 35 days of radiation and chemo in july and aug my 2nd chemo. nov was my 3rd and last chemo. i had a feeding g-tube put in two weeks into my radiation and removed
    my tube in jan. when i wake up from my sleep my neck and shoulders hurt each day. i have schedule for eye and hearing exam next month. i was giving myself sometime to hopefully heal a little more before getting new glasses. i do not know if i need hearing aides. i do notice my hearing is not the same. i often hear ringings sounds in my ears. my biggest challenge is sleeping and eating. as you may know i have very dry mouth and i have not been able to eat much solid foods. i drink 3 or 4 ensure plus with 350 calories a day. i eat a table spoon of oatmeal with almond milk and slice of apple diced small with cinnamon for breakfast. i make a protein smoothie for lunch and dinner stir fry few slices of zucchini,and 2 mushrooms. i usually get about 11/2 hour of sleep and awaken with very dry throat. i would drink some water and rinse with biotene oral rinse and use biotene jel before trying to sleep again. i usually get up about 3 or 4 times a night before my alarm wakes me up for work.

    are you able to eat any solid foods? do you have problem swallowing? i am glad to have found this site, and know there are others who had the same kind of cancer as myself.

    try XyliMelts for dry mouth
    Hi, the XyliMelts time-release adhering discs work great for sleeping. It stimuates saliva while you sleep. The discs sticks to your gums in your cheek. I dont have to wake up to drink water anymore.
  • aprilshower55
    aprilshower55 Member Posts: 31

    try XyliMelts for dry mouth
    Hi, the XyliMelts time-release adhering discs work great for sleeping. It stimuates saliva while you sleep. The discs sticks to your gums in your cheek. I dont have to wake up to drink water anymore.

    eating
    thanks for your suggestion, i will try it. may i ask how is your eating? are you able to eat and does food taste good? i find the food i can eat does not taste the same and has no taste. would you mind telling me more about your cancer. thanks for your help. i am so glad i joined this discussion board.
  • aprilshower55
    aprilshower55 Member Posts: 31

    I am also a NPC surviour
    Hi
    I am also a NPC survivor for about a year now I found out I had NPC 4+ back in February of 2009 by having a major ear infection in the right ear and I was only 24 at the time and just gotten married 6 or 7 months before I found out I had cancer but Started treatments in march with 3 months of chemo first then 7 weeks for 5days of IMRT radiation last. Now I am 26 and cancer free for about a year now but just dealing with some nasty post cancer treatment problems like, Neck/Shoulder problems, Staph Infection in the lungs, Major Hearing lost, Numbness in the legs/toes/arms/fingers, Light headiness, Major Vision changes and anxiety attacks everyday. But I am taking meds for light headiness,anxiety problem,numbness and headaches. These are the side effects that the doctors dont tell you because I am finding new side effects each day.

    npc surviour
    hi, sorry to hear all the side effects you have. what kind of neck/shoulder problems. i have neck/shoulder pain each day when i wake up but usually goes away as the day goes by.
    but my should and neck is stiff all the time. i am not sure that is due to lack of exercise. yes no doctors tell you of the side effects. how is your diet like do you have any problems eating and what do you do for dry mouth, have some of your saliva glands returned? i am just hoping my saliva glands will return at least most of it. look forward to hear how you cope with your side effects. take care
  • NeoTheron91
    NeoTheron91 Member Posts: 75

    npc surviour
    hi, sorry to hear all the side effects you have. what kind of neck/shoulder problems. i have neck/shoulder pain each day when i wake up but usually goes away as the day goes by.
    but my should and neck is stiff all the time. i am not sure that is due to lack of exercise. yes no doctors tell you of the side effects. how is your diet like do you have any problems eating and what do you do for dry mouth, have some of your saliva glands returned? i am just hoping my saliva glands will return at least most of it. look forward to hear how you cope with your side effects. take care

    Side effects
    After finished my radiation & chemo treatment 3 months ago, I am having regular nose blocked, one of the ears is blocked, dry mouth and some pain in the left shoulder. According to this forum, it's new normal life style. so we have to adapt with it.
  • Karri
    Karri Member Posts: 9

    Side effects
    After finished my radiation & chemo treatment 3 months ago, I am having regular nose blocked, one of the ears is blocked, dry mouth and some pain in the left shoulder. According to this forum, it's new normal life style. so we have to adapt with it.

    2 Year NPC survivor
    Hi. After reading many of your stories I am feeling much less sorry for all the after care problems I seem to be incurring. Does anyone else feel the medical profession is letting them down? I had stage 4 with no symptoms except I had an enlarged lymph node on the right side of my neck. Through pathology once my neck dissection was complete we figured out it was nasal. I went through 7 weeks of radiation and 6 months of chemo. My side affects are very minimal compared to most of yours. I am, however, finding that my after care is less desirable than I had hoped. I am trying to keep a positive attitude but sometimes it is difficult at best not to feel frustrated and alone. I am glad to have found this site and pray for all of you.