Nasopharyngeal carcinoma or anything close??

Hello Karissa,
Do not
Hello Karissa,
Do not despair since there are a few of us who has had naspharyngeal cancer (NPC). I used to feel angry because of the permanent side effects, but now I have learned to live with it. Look at it another way. You are alive and well (besides the cancer side effects). In a few months, you will be a five year survivor. After reading some of the effects of some on this board, I feel mine is minimal.
I believe in the man above and for a few years, I went to church to pray by myself. I would be the only one there. I thanked him for keeping me alive and to give me the strength to live through this small handicap. Sometimes, you need to look around you and you will see that there are others worse off. Think of the positives.
I have not eaten a steak in 10 years. Yes, I had my nasopharyngeal cancer more than 10 years ago. Now, it does not bother me that I eat to survive since it is no longer enjoyable. I do not know what permanent effects it had on you.
I did not realize how rare it is in the United States. The incidence rate as reflected by the ACS is .7 per 100,000 people.
As young as you are, I think maybe you should go the local cancer society and get in with some cancer discussion groups. The problem is you probably will not find someone with NPC, but maybe someone with head/neck cancer with similar treatments and effects.
Take care and Good luck.

Christmas said:

Karissa:
I understand how
Karissa:
I understand how you feel. I'm a Nasopharyngeal Cancer survivor. I try not to dwell too much on "why me?". Of course the question and thought always hits everyone. I look at the fact that this type of cancer has one of the highest survival rates. I'm starting to have eye problems - on my right eye. Trying to stay positive - at least my left eye is working right. I still can work. I have a job. It's OK to feel angry. But after a while, start to count your blessing. You have a mom who loves you and is there for you. So, she bugs you about your eating because she loves you and that's how she deals with it. My husband is the same way. He's always pushing food on me. He thinks that I'll get better if I'll just eat more.

Stay strong and stay positive. That's half the battle.

What was your treatment like? How are you feeling after five years?

Late reply
Karissa, my apologies for this late reply in answering your questions. I had been busy the past week as am heavily involved with the veterans and we are doing a parade this weekend.

I have never had tinnitus, but about my 5th or 6th year, I started to have ear pressurization problems on my left ear. It is not as bad now, but it is easy to balance out the pressure. It is not as frequent now.

My dry mouth problems had gotten slightly worse. I attribute some of that because I am getting old. I had always carried a bottle of water and have for over 10 years now. I just got used to it. A few years ago, people used to remark that I drink a lot of water. In reality, I was just using it to moist my mouth. Now, it is like the norm to carry water. I used to be able to eat a tomato sandwich, but now I have to dip my sandwich in some kind of soup. My taste buds did not really return. I can taste a little, but not like before.

A year ago, I started another alternative. I bought that spray tube "Oasis". With out full taste buds, I did not like the taste. I threw out the contents and refilled it with water. That way for short visits like going shopping, that Oasis will hold me up. I can spray the liquid (water) in my mouth. I'll leave my bottle in the car since that Oasis fits in my shirt pocket. A lady can carry it in her purse. The Biotene Mouth spray has a better taste (to me). I do not think your dry mouth condition is worse than mine.

Do not worry. You will be okay. Your first reply tells me you have more than half the battle won. Your mom is just looking out for you because she cares.

Our handicap is not really that bad. There are other things in life besides eating that we can still enjoy. Believe me, if you maintain a positive attitude, you will be like me and no longer even think or worry about dry mouth or other side effects. It may be in your thoughts once in a while, but then it will go away. Good luck and enjoy life.

soccerfreaks said:

agent orange
HAWVET...as head and neck AND lung cancer survivor, I accidentally sent someone to the lung cancer discussion area hoping you would find them...if i remember correctly, her name is stephanie...her hub has lung cancer with mets to bladder, again, if I remember correctly.

Saw her originally in Caregivers or Emotional Support and suggested she find you in Lung Cancer board. Her hub is Nam vet and she suspects Agent Orange. I remember a post of yours about that subject and thought you might be able to help her.

Take care,

Joe

Joe, I found her
Joe, thanks. I found her and will post a reply in her thread. I have been studying Agent Orange and cancer for several years. My cancer was nasopharyngeal.

I will try and lead her into the right direction.

Nasopharangeal Carcinoma
Here is my story. I am also looking for a warrior. I was a kidney donor Dec 2006. Ten months laterI was diagnosed with Sstage 4 nasopharangeal carcinoma. Through IMRT radiatin and very aggressive chemo, I appear to now be in remission. The side effects are numerous, hearing loss in both ears, distoreted taste, no saliva, neuropathy in feetsoI stumbel, but the worst has been weakness in my right arm to wear i can't even lift a bagof flour, I can no longer type,button my clothes, pt on jewelry, I drop and breakthings, and on and on. I am now home and not going to be able to go back to work as I am ...was a h ig hly skilllled administrator. I nam looking for others too who have had such seveeeeeere neuropathy. I can live with all the other side effects, but this one really has effected my daily life. I also have frequent boutsof tongue parlyzation which ofcourse takes away my ability to nspeak forvery shortpeiodsof time. Any one else have that?I know we must nall be strong and look at it as though this was the price we paid to nlive. And I'd rather be alive. I am 49. Sorry about the typos.

Hi Karissa and Hi Everybody
Hi, This is Terrence. I also had NPC and started treatment back in 2001. I had 45 rounds of radiation and 6 rounds of chemo (chemoradiation). This year is my 8th year into remission. I always feel like a soldier who was forced to fight for his life. I won the battle but came back with many battle scars and wounds. I have learned to live with my handicapps but sometimes they are difficult to deal with. Specially since I am back in society trying hard to make a decent living, catching up, and just trying to live a normal life. I have cried many tears, to the point where I can't cry anymore - even if I wanted to. Sometimes I feel depressed and find it hard to carry on. This cancer has taken much from me. Eveerything in my head - from ears, mouth, neck, and even now my brain has been affected. I recently found I may have what they call "chemo brain" which is short term memory loss. The effects are subtle and it doen't mean that you can't remember but that you have to concentrate harder and try harder to memorize things. Great, another handicap! This doesn't help when I'm trying to finish a college degree and just started a new job that requires lots of memorization. I heistate to tell people about it because NPC is rare in america, people can't relate or have little sy,pathy, I don't want their pity. Now, I brace myself for maybe more side effects that may come in the future. But all I want is to be normal. Sorry about all this negative but this is how I feel right now and this is the only way I can express my feelings out.

Sahar said:

Just Diagnosed with Nasopharyngeal Cancer
Hi everyone! My name is Sahar I am 28 years old. I live in orange county with my husband and two daughters ages 5 and 9. My mother is from Hong Kong and my father is from Iran. I recently found out that I have Nasopharyngeal cancer (T2N1). I am trying to choose the best Dr’s I can find to treat me. From my understanding Radiation will be where I need to be picky because of all the critical structures around that area. I was wondering if any of you have any advice on anything I should know or ask my Dr’s. Any Info will be very helpful.

Advice
It is now just over 11 years since I was last treated for NPC. First, my advice to SAHAR. I read on this forum within the past year that there is some kind of medication taken when receiving radiation treatment. At the end, their saliva glands were saved. For me, that is the most severe handicap that I have suffered. Maybe someone who had posted it will come forward.

Sometimes, I do have that depressed feeling like some of you. It is now not as frequent. I think of the many others who are handicapped and have seen many others, more severe than me. I thank the man above for giving me these past 11 years after treatment. I am just happy to still be around.

HAWVET said:

Advice
It is now just over 11 years since I was last treated for NPC. First, my advice to SAHAR. I read on this forum within the past year that there is some kind of medication taken when receiving radiation treatment. At the end, their saliva glands were saved. For me, that is the most severe handicap that I have suffered. Maybe someone who had posted it will come forward.

Sometimes, I do have that depressed feeling like some of you. It is now not as frequent. I think of the many others who are handicapped and have seen many others, more severe than me. I thank the man above for giving me these past 11 years after treatment. I am just happy to still be around.

NPC
Hello Hawvet,

I want to know your staging and where did you tumor spread?
My father had T4 tumor found in this march and we took 35 radiaiond and chemo and doctor told you can say cancer is in remission but it can come back anytime.
So I am little bit worried.I was happy to read your post that you are 11 years post treatment.
My father's tumor reached to base of skull so do you think that might be dangerous?