nasopharyngeal cancer

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

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.

babi said:

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

LiveStrong427 said:

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 said:

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

aprilshower55 said:

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.

timreichhart said:

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.

NeoTheron91 said:

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.