Nasopharyngeal carcinoma or anything close??
and if there was any1 else out there who had my cancer or something close to it because i dont know any1 else that has had it.
Comments
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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.0 -
you give me hopeHAWVET said: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.
I guess i do have to start looking at it as i am the lucky one who survived and not like i am the unlucky one who got cancer. You are right there are people much worse off them me. The side effects sometimes get to me though my mom is always fighting with me about eating because just like you i hate eating chewing hurts my jaw, most foods make me nauseas before and after i eat i hope one day i can be as strong as you and not care that
I need to eat to survive and it will probably never be enjoyable again. but she is always yelling at me saying i'm going to have to go back to the hospital and be put on an IV but i always eat what i can i am just not a big eater. seeing you out there does give me hope that if i try hard enough i can live a somewhat normal life.
Just wondering if you had tinnitus or dry mouth as a side effect?
if so do you also always carry a water bottle around? did your dry mouth ever get any better?
thank you for answering me back i do know other cancer survivors my age but none of them had anything close to NPC and most of them were a lot younger then i was when they were sick and they don't remember much from treatment. i know this sounds weird but it just helps knowing there is someone else out there who knows what I'm going through has gone through it them self and has learned to live with it.0 -
Young cancer survivorsKarCar523 said:you give me hope
I guess i do have to start looking at it as i am the lucky one who survived and not like i am the unlucky one who got cancer. You are right there are people much worse off them me. The side effects sometimes get to me though my mom is always fighting with me about eating because just like you i hate eating chewing hurts my jaw, most foods make me nauseas before and after i eat i hope one day i can be as strong as you and not care that
I need to eat to survive and it will probably never be enjoyable again. but she is always yelling at me saying i'm going to have to go back to the hospital and be put on an IV but i always eat what i can i am just not a big eater. seeing you out there does give me hope that if i try hard enough i can live a somewhat normal life.
Just wondering if you had tinnitus or dry mouth as a side effect?
if so do you also always carry a water bottle around? did your dry mouth ever get any better?
thank you for answering me back i do know other cancer survivors my age but none of them had anything close to NPC and most of them were a lot younger then i was when they were sick and they don't remember much from treatment. i know this sounds weird but it just helps knowing there is someone else out there who knows what I'm going through has gone through it them self and has learned to live with it.
Karissa, this may be stating the obvious to you, but in addition to Hawvet's great advice, there IS a discussion board on here that is specifically for young cancer survivors. I have not checked it to see how active or useful it might be, but if you haven't perhaps you could have a look there.
Take care,
Joe0 -
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?0 -
Late replyChristmas 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?
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.0 -
agent orangeHAWVET said: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.
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,
Joe0 -
Joe, I found hersoccerfreaks 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, 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.0 -
Love tour t-shirt!!!
Hello Karissa,
Like you I get a bit angry that cancer took a lot away from me. In 2007 I had plans to get married and become pregnant but I found out I had NCP like you. So everything was cancelled and I started treatments. I try not to think much about it and try to concentrate on the fun and positive people/situtations/things around me.
The side effects are annoying but one gets used to them with time. The dry mouth is one of them but if I chew gum it helps a lot.
My mom too was always on my case but I think moms are just like that.... they mean well. She helped me a lot during this whole ordeal.
I congratulate you on being cancer free for 5 years.
I wish nothing but the best for you.
Love the t-shirt...
Paula0 -
OMGHAWVET said: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.
the little spray bottle is freaking genius i can't believe i have never thought of it. I am going to go out 2moro and get one. because i hate carrying a water bottle with me everywhere. especially now that i am in college and i am going out with my friends and new ppl and they are always like you dont need to bring a water bottle with you and i am like yea i kinda do lol. thx for the tip i can't wait to try it!!!0 -
Thx Thats my favoritepaula002 said:Love tour t-shirt!!!
Hello Karissa,
Like you I get a bit angry that cancer took a lot away from me. In 2007 I had plans to get married and become pregnant but I found out I had NCP like you. So everything was cancelled and I started treatments. I try not to think much about it and try to concentrate on the fun and positive people/situtations/things around me.
The side effects are annoying but one gets used to them with time. The dry mouth is one of them but if I chew gum it helps a lot.
My mom too was always on my case but I think moms are just like that.... they mean well. She helped me a lot during this whole ordeal.
I congratulate you on being cancer free for 5 years.
I wish nothing but the best for you.
Love the t-shirt...
Paula
Thx Thats my favorite shirt!!!!
I actually did use gum. the frist time i did i was waiting on line for a ride at disney world (it was my make a wish trip) and they said i couldnt bring my water bottle and i started gagging and my aunt had a piece of gum and quickly stopped the gagging. lol i laugh about those kinds of memories now not sure if thats a good thing or a bad thing lol. then gum started working for me for a while but then i started getting TMJ and my jaw couldnt handle chewing it, i always have a piece with me though just for emergency's. but HAWVET had a great idea with the tiny spray bottle i cant wait to try that.
Glad to her all moms are crazy when it comes to their kids health lol.0 -
EuropeKarCar523 said:OMG
the little spray bottle is freaking genius i can't believe i have never thought of it. I am going to go out 2moro and get one. because i hate carrying a water bottle with me everywhere. especially now that i am in college and i am going out with my friends and new ppl and they are always like you dont need to bring a water bottle with you and i am like yea i kinda do lol. thx for the tip i can't wait to try it!!!
Be advised, kar, that in Europe, carrying your water bottle with you is the thing to do, since it is more costly even than petrol, which is much more expensive than it is here in the states.
When I visited my daughter and her hub in Holland, we traveled quite a bit, and we always loaded up on home-filled bottles of water. It was simply a matter of course. While beer was extremely inexpensive, water was sky-high!
I guess I am saying that you should quit worrying about what other people think. If you need the bottle of water, and many of us do (I no longer do), then take the bottle of water!
In doing so, in a sense, you are being rather cosmopolitan, would fit in quite well in all of Europe .
Take care,
Joe0 -
I like your spirit...KarCar523 said:Thx Thats my favorite
Thx Thats my favorite shirt!!!!
I actually did use gum. the frist time i did i was waiting on line for a ride at disney world (it was my make a wish trip) and they said i couldnt bring my water bottle and i started gagging and my aunt had a piece of gum and quickly stopped the gagging. lol i laugh about those kinds of memories now not sure if thats a good thing or a bad thing lol. then gum started working for me for a while but then i started getting TMJ and my jaw couldnt handle chewing it, i always have a piece with me though just for emergency's. but HAWVET had a great idea with the tiny spray bottle i cant wait to try that.
Glad to her all moms are crazy when it comes to their kids health lol.
Your story was funny... I've had situations similar to that too.
The fact that one can look back and laugh means that we are on the right track.
Hawvets idea is great and I think I might look into it also.
Keep in touch..
Paula0 -
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.0 -
Nasopharyngeal carcinoma
My daughter Victoria who is 5 may have Nasopharyngeal carcinoma. Through my own research I have come to this conclusion. She loses her voice or becomes hoarse often. She is having trouble hearing with her left ear. A CT of her head shows according to a Dr. 2 yrs ago Sinusitus. Her lymph nodes in her neck are always somewhat swolen. And now she is having trouble breathing. They believe this is caused by Epstein Barr Virus....she was tested by her Hematologist and it came out negative. She was diagnosed with Pityriasis Rosea when she was 1 yr which is known to be caused by either HHV6 or HHV7 according to Mayo Clinic. i do have a history of herpes myself and wonder if this was possibly transmitted to her in some way while I was pregnant. She also always has fluid in her ears when the Dr's evaluate her.
I'm curious to know what your symptoms were prior to being diagnosed. The newest symptom for my Victoria is trouble breathing. She just started complaining of having trouble breathing.
In addition her blodd tests are off and always have been. She also has Nephrotic Syndrome
brought on by the measles which was from the MMR Vaccine.
Can anyone help?
Thank you Dearly and I am so happy to hear a young lady overcome cancer.
Best to you and yours.0 -
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.0 -
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.0 -
AdviceSahar 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.
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.0 -
Cancer cant stop me!KarCar523 said:Thx Thats my favorite
Thx Thats my favorite shirt!!!!
I actually did use gum. the frist time i did i was waiting on line for a ride at disney world (it was my make a wish trip) and they said i couldnt bring my water bottle and i started gagging and my aunt had a piece of gum and quickly stopped the gagging. lol i laugh about those kinds of memories now not sure if thats a good thing or a bad thing lol. then gum started working for me for a while but then i started getting TMJ and my jaw couldnt handle chewing it, i always have a piece with me though just for emergency's. but HAWVET had a great idea with the tiny spray bottle i cant wait to try that.
Glad to her all moms are crazy when it comes to their kids health lol.
I was 31 years old three days after my birthday I went to the Dr. with a lymph node swollen like a golf ball in my neck. This had been my 18th visit for the same symptoms. A week later I was told that I was stage 3 and had non difianted nasophyrnx cancer . I went to meet with the radiation Dr 2 days later and it was determined that i was stage 4 and that it had moved into my rt temperal fossa. I never thought I would be here today when I got the news but I have 3 boys and was determined to watch them graduate high school. I went through radiation 5 days a week for 2 1/2 months with chemo every week, I had an Mri done and it had determined that residual tumor was still present so I went to have Cyber knife surgery done and after getting the halo screwed to my head and several MRi's it was determined because of the location of my tumor that it wasnt an option. I was givin Gamma Knife surgery and hoped for the best my Dr had made the descision that another round of chemo might help. So I went in for another 3 rounds of chemo 5FU which was givin 5 days a week for 24 hrs at a time, this was a horrible task I got severly sick and spent all of last summer in the hospital. I to have many many side effects from all the treatment but have found ways to live with it and make it better. One thing is GUM is your best friend! 2 is that if you do stretching exercises it will help with neck and jaw pain no pain no gain. I do miss being able to eat dry things but know that I am still here for a reason and so are all of you ! If anyone needs help with some tricks to make things easier let me know I went thru alot and have found ways to make everyday better0 -
NPCHAWVET 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.
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?0 -
Hello Sonichiragsonichirag13 said: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?
Sorry to hear about your Father having NPC, but the facts are that it can come back. What every cause it to start the first time can cause it to start again, but there are a lot of things you can do to prevent it from coming back.
First of all is Prayer, you can do nothing with out God’s help. Next is to change your diet and stop using foods that feed Cancer. I have a list of things that can help if you are interested; believe me I have been there 3 times now. There is nothing more that my doctors can do but give me more Chemo so instead of killing my body I decided to help my body fight my cancer. It has been a little over 3 years now that my doctor found the NPC on my left side, but can’t explain why it is not growing, I tell him what I am doing but he does not want to hear.
You can contact me at timhonmc@aol.com
My God bless you and your Dad0
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