Newly dianogsted with NPC stage3

Lisa-NasalPharynx

cartierlee said:

Lisa-N
Hi Lisa,

Congratulation for your completion of your treatment. Time to have a Big Party and keep the party going for as long as you live! Your treatment was certainly well worth it considering that you are alive and well now posting on this message board.

My vision got pretty bad too but it did get better a few months later so it might be just a short term side effect.

When your hair grows back they will be better than the one you had before (softer) so prepare to have some really good looking hair comming to your scalp.

I was told that NPC mostly only happens to Asian from the Southern China (Canton) area including Taiwan, Phillipines, Vietnam area and so forth and the common ties is being Epstein Barr Virus positive AND most had eaten Dried salt fish which is a common food dish in the part of the world. I was from Hong Kong and certainly grew up eating a lot of dried salt fish. Let me know which part of the world you grew up in and if you had eaten a fair amount of dried salt fish.

Other than that, Congratulation, Enjoy and LIVE LIFE !!!! We are the lucky ones :-)

Cartier

CartierLee
Hi, I was also told that NPC was very rare in the United States. Only 1500 cases per year compared to 300,000 breast cancers or 100,000 colon cancers. I'm not of Asian descent, and have never eaten dried salt fish. (Although I have always liked salty foods.) My grandparents were from Hungary and Poland. I have no idea where I would have been exposed to the Epstein Barr virus, but I understand that many people have the virus, it just never "activates."

On August 1, 2009, my 22 year old son was killed in a motorcycle accident right outside my home. In fact, I was on the phone outside reporting it to 911 when I saw him slide off the bike and realized that it was MY son. The doctor said they estimated my cancer to be a little more than a year old. I'm certainly no medical expert, but I feel that the severe shock of his death could have triggered the virus to turn into cancer. Call me crazy, but that's what I believe. But, if anything GOOD could come of this cancer, it has forced my husband and me to focus on living. We cry every day for the loss of my son, not the fact that I have cancer. I'm not ready to throw in the towel, and I refuse to pity myself. Losing a child is the worst thing in the world, having cancer is just something God has decided I need to go through for some reason.

I grew up in Southwestern Pennsylvania. There were a lot of steel mills (pollution) around when I was growing up, and in fact, I've worked for 15 years in one of the last 3 remaining United States Steel plants in the Pittsburgh area.

sweetblood22

Lisa-NasalPharynx said:

CartierLee
Hi, I was also told that NPC was very rare in the United States. Only 1500 cases per year compared to 300,000 breast cancers or 100,000 colon cancers. I'm not of Asian descent, and have never eaten dried salt fish. (Although I have always liked salty foods.) My grandparents were from Hungary and Poland. I have no idea where I would have been exposed to the Epstein Barr virus, but I understand that many people have the virus, it just never "activates."

On August 1, 2009, my 22 year old son was killed in a motorcycle accident right outside my home. In fact, I was on the phone outside reporting it to 911 when I saw him slide off the bike and realized that it was MY son. The doctor said they estimated my cancer to be a little more than a year old. I'm certainly no medical expert, but I feel that the severe shock of his death could have triggered the virus to turn into cancer. Call me crazy, but that's what I believe. But, if anything GOOD could come of this cancer, it has forced my husband and me to focus on living. We cry every day for the loss of my son, not the fact that I have cancer. I'm not ready to throw in the towel, and I refuse to pity myself. Losing a child is the worst thing in the world, having cancer is just something God has decided I need to go through for some reason.

I grew up in Southwestern Pennsylvania. There were a lot of steel mills (pollution) around when I was growing up, and in fact, I've worked for 15 years in one of the last 3 remaining United States Steel plants in the Pittsburgh area.

Hi Lisa. Just wanted to
Hi Lisa. Just wanted to welcome you. A lot of us don't think you are crazy, we have spoken here about extreme trauma and extreme stress being a catalyst in getting cancer. I am very sorry for your loss.

Lisa-NasalPharynx

sweetblood22 said:

Hi Lisa. Just wanted to
Hi Lisa. Just wanted to welcome you. A lot of us don't think you are crazy, we have spoken here about extreme trauma and extreme stress being a catalyst in getting cancer. I am very sorry for your loss.

Thank you
Thanks, sweetblood22.

I'm glad I found this forum.

Kent Cass

Lisa-NasalPharynx said:

CartierLee
Hi, I was also told that NPC was very rare in the United States. Only 1500 cases per year compared to 300,000 breast cancers or 100,000 colon cancers. I'm not of Asian descent, and have never eaten dried salt fish. (Although I have always liked salty foods.) My grandparents were from Hungary and Poland. I have no idea where I would have been exposed to the Epstein Barr virus, but I understand that many people have the virus, it just never "activates."

On August 1, 2009, my 22 year old son was killed in a motorcycle accident right outside my home. In fact, I was on the phone outside reporting it to 911 when I saw him slide off the bike and realized that it was MY son. The doctor said they estimated my cancer to be a little more than a year old. I'm certainly no medical expert, but I feel that the severe shock of his death could have triggered the virus to turn into cancer. Call me crazy, but that's what I believe. But, if anything GOOD could come of this cancer, it has forced my husband and me to focus on living. We cry every day for the loss of my son, not the fact that I have cancer. I'm not ready to throw in the towel, and I refuse to pity myself. Losing a child is the worst thing in the world, having cancer is just something God has decided I need to go through for some reason.

I grew up in Southwestern Pennsylvania. There were a lot of steel mills (pollution) around when I was growing up, and in fact, I've worked for 15 years in one of the last 3 remaining United States Steel plants in the Pittsburgh area.

NPC
I, too, am NPC, and welcome you to this board. And a big congratulations to being done with the treatment. Just about the best of times since the diagnosis for me, and I reckon it probably is for you, too. Enjoy, Lisa.

kcass

Hondo

Kent Cass said:

NPC
I, too, am NPC, and welcome you to this board. And a big congratulations to being done with the treatment. Just about the best of times since the diagnosis for me, and I reckon it probably is for you, too. Enjoy, Lisa.

kcass

Hi Lisa
Another NPC case here, sorry you have this too but glad to have you as part of the family.

Welcome to CSN
Hondo