Nasopharyngeal carcinoma or anything close??

Lisa2009

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.

Husband Diagnosed with Nasopharyngeal Cancer
Hi my husband was just diagnosed with this type of cancer. He thought he had a cold and wound up with a blockage in his nose, turned out to be a malignant tumor in his nasal cavity. I was told it is rare in the U.S, only Asia and some South and Central American countries. My husband is from South America and we were just blown away by this. He had 31 treatments of radiation and got real sick after the 2nd week. He did do well and the tumor is gone but of course there isn't enough studies and treatments well known for it so we are so anxious about it. He's been done now with his treatments for a month and is still getting infections like thrush and so on but so far so good and I to know that God is the healer and you just have to hang on to him. I was so glad to know about this site because we are in the dark about the survivors of this type of cancer so we need to try to continue to share our experiences so we can help each other. You hang in there and start thanking God now for healing you. The Moffitt Cancer Center in Florida is wonderful they have the right equipment for this type of cancer you might want to check them out that's where we went.
Good Luck and don't let it get you down. Lisa

Hondo

Lisa2009 said:

Husband Diagnosed with Nasopharyngeal Cancer
Hi my husband was just diagnosed with this type of cancer. He thought he had a cold and wound up with a blockage in his nose, turned out to be a malignant tumor in his nasal cavity. I was told it is rare in the U.S, only Asia and some South and Central American countries. My husband is from South America and we were just blown away by this. He had 31 treatments of radiation and got real sick after the 2nd week. He did do well and the tumor is gone but of course there isn't enough studies and treatments well known for it so we are so anxious about it. He's been done now with his treatments for a month and is still getting infections like thrush and so on but so far so good and I to know that God is the healer and you just have to hang on to him. I was so glad to know about this site because we are in the dark about the survivors of this type of cancer so we need to try to continue to share our experiences so we can help each other. You hang in there and start thanking God now for healing you. The Moffitt Cancer Center in Florida is wonderful they have the right equipment for this type of cancer you might want to check them out that's where we went.
Good Luck and don't let it get you down. Lisa

Lisa

You have the best medicine for healing and that is Prayers, it is like manna in the bible there is never too little and never too much; God knows what each of us need.

You need to get your husband on some good healthy foods that will help his body to heal better and keep him off all Sugar products. The only sugar he needs is what comes natural in the fruits we eat created by God.

God bless the both of you, I will keep you both in prayer

Lisa2009

Husband Diagnosed with NPC
Hi I am replying to the person that said my husband has to get off of sugars. Unfortunately for the last month or so when he had the radiation he was drinking all those awful Ensure's and they are full of sugar so I don't know if this made things worse. We are trying everything I only buy organic products now and of course pray all the time. I just live on pins and needles constantly. I pray for all of you out there as well.

abdulrauf_hafeez

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.

what state
Hello Sahar,

Which state is your orange county in? If you were in Orange county, NC, I could give you some advice wrt the hospitals in the area. I just completed treatment for t2-n0-m0 nasopharyngeal cancer at UNC hospital. My docs told me it's not usual to see patients with t2 disease. For most people it's discovered in later stages. So we are lucky in that respect. My first advice would be to get at least two opinions about treatment. Also, talk to your radiation oncologist about sparing the parotid gland on one side of your face if possible. I didn't ask about it but it so happened that they could spare the gland on one side to some extent in my case as my tumor was rather small (3 cm in size). I got a few booster treatments with the Cyber-knife machine at the end of my IMRT treatments. I don't know if that helps but cyber-knife is much more sparing to the surrounding tissue than IMRT. I didn't get a peg tube and did fine without it. If your doctor isn't insistant on you to get the peg tube for some reason, my advice would be to say no to it assuming that you are healthy otherwise. My oncologist used a wait and see approach regarding the peg tube and I made it without it. I am three weeks past treatment. Since last week I began eating solid foods. For weeks 4-10, I was almost solely on nutritional supplements. My nutritionist provided me with free Carnation brand drinks.

Hondo

Lisa2009 said:

Husband Diagnosed with NPC
Hi I am replying to the person that said my husband has to get off of sugars. Unfortunately for the last month or so when he had the radiation he was drinking all those awful Ensure's and they are full of sugar so I don't know if this made things worse. We are trying everything I only buy organic products now and of course pray all the time. I just live on pins and needles constantly. I pray for all of you out there as well.

Hi Lisa


Send me your e-mail address I will forward you some good info on what you can do after his radiation and chemo is finish. For now all you can do is get what ever you can into him the Ensure is full of sugar but there is nothing you can do about that right now because he needs a food source. After he is finish with all his treatment what you want is to get his body in as good health as possible and purge the radiation and chemo out of him. I will be praying for you both. timhonmc@aol.com

fgin

Nasopharyngeal carcinoma victim too
I am also NPC victim too. Now stage 4 at 7-28-09, was stage 2 8-1-2001. Doing fine, still going through chemo, done with cis-platin, did not work. Now using Erbitux, estimate life to be 6 months.
I have my experience page on www.geocities.com/nasopharyngeal.
Also there aremany help groups in nasopharyngeal carcinoma.
google group: alt.supports.cancer
google group: alt.sci.med.cancer
yahoo group: npccancer
yahoo group: nasopharyngeal_carcinoma
I think many of our causes of NPC is Epstein Barr virus couple with weak immune system, from stress, from lack of drinking water ( at least 8 cups, I had only 3 at that time), high salt intake, too much preserved food, genetic and environmental factors.
Good luck to every one. Hang in there.
***********

catdog123

thunder101 said:

Cancer cant stop me!
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 better

Good Luck
How's your feeling now? Have you finished your treatment yet?
I'm a NPC stage 3 patient, 25 years old under treatment now. I'm just scared since 5 years surviving ratio is just 50%-60%

catdog123

Hondo said:

Hi Lisa


Send me your e-mail address I will forward you some good info on what you can do after his radiation and chemo is finish. For now all you can do is get what ever you can into him the Ensure is full of sugar but there is nothing you can do about that right now because he needs a food source. After he is finish with all his treatment what you want is to get his body in as good health as possible and purge the radiation and chemo out of him. I will be praying for you both. timhonmc@aol.com

Hi Hondo
Hi Hondo,
My NPC stage is 3 (T2N2M0), i'm scared now. I had finished radiationtheraphy 1 month ago. Just finished my 1st chemo last week, and chemotheraphy brought me mouth ulceration, i could not eat anything now. And my legs and arms are sore.
Could you give me some advices?
Thank you for your help,
Best wishes!

fsdman

NPC
Karissa and all,
I am an NPC survivor too.I am 4 months past the usual treatments we all know and dread.I lost 63 lbs. so far .I have the dry mouth,lack of saliva,weird and changable taste buds, burning pallet and tounge and a myriad of other issues. I loved food my entire life-in fact some said it was my life. Now eating is a chore to be dispatched as painless as possible.My life will never be as it was.I am very happy. Why? Because 15 years ago I lost my older brother to NPC.Imagine 2 cases in 1 family. I am alive because I knew the symptoms and was diagnosed a Stage 1. I told the ENT what I had at our first meeting.He doubted it but it was there. Being alive with some inconviences aint too bad. I saw the other result that can occur. Try different things and research the web.Also,remember that at 18 you have a right to be a little angry-thats youth.As you mature lifes true importance will distract you from minor annoyances. I gotta go my wife is yelling at me-again-to eat more.I dont want to-but I will because she is right this time.Good luck to all of you (us).

catdog123

fsdman said:

NPC
Karissa and all,
I am an NPC survivor too.I am 4 months past the usual treatments we all know and dread.I lost 63 lbs. so far .I have the dry mouth,lack of saliva,weird and changable taste buds, burning pallet and tounge and a myriad of other issues. I loved food my entire life-in fact some said it was my life. Now eating is a chore to be dispatched as painless as possible.My life will never be as it was.I am very happy. Why? Because 15 years ago I lost my older brother to NPC.Imagine 2 cases in 1 family. I am alive because I knew the symptoms and was diagnosed a Stage 1. I told the ENT what I had at our first meeting.He doubted it but it was there. Being alive with some inconviences aint too bad. I saw the other result that can occur. Try different things and research the web.Also,remember that at 18 you have a right to be a little angry-thats youth.As you mature lifes true importance will distract you from minor annoyances. I gotta go my wife is yelling at me-again-to eat more.I dont want to-but I will because she is right this time.Good luck to all of you (us).

you are so lucky
You are so lucky fsdman!
Good luck to all of us!

fsdman

catdog123 said:

you are so lucky
You are so lucky fsdman!
Good luck to all of us!

lucky
CATDOG,
I feel blessed. I know you are scared-you would be a fool not to be but stay positive. Dont worry about the 50% 5 year. I always felt that the 50% included many older,sicker and less likely to survive so my chances were much higher. Eat and stay strong.Keep fighting through all the issues we all face. Know that you will be a survivor-know it!!

HAWVET

fsdman said:

lucky
CATDOG,
I feel blessed. I know you are scared-you would be a fool not to be but stay positive. Dont worry about the 50% 5 year. I always felt that the 50% included many older,sicker and less likely to survive so my chances were much higher. Eat and stay strong.Keep fighting through all the issues we all face. Know that you will be a survivor-know it!!

Sonichirag, my apologies for not responding sooner. My cancer was just in back of my nose area. I had radiation treatment for just under 9 weeks. I started chemo a few weeks after starting radiation and got extremely sick. My chemo required overnight stay in the hospital. I told the doctor after two treatments, I would wait until after radiation.

About a month after radiation, I returned for a two night stay for some kind of direct radiatdion implant treatment for lymph nodes. They place six long needles around the lymph node area. I lost about 40 pounds. I decided to try some alternative type treatment after that.

I really am not familiar on how bad it is on NPC reaching the base of your dad's skull. Like Hondo stated, I too believed in prayer. As for eliminating sugar from your diet, I have a different opinion. My concern was to recover and eat anything since I believe all of us lost weight because of a lack of appetite and saliva. I drank ensure to give me the nutrients I needed to get healthy.

My radiation implant treatment was in June 1998. My tumor had shrunk and I think it was a couple of years later when the scan showed it gone. My taste buds returned slightly, maybe 25 percent. As for saliva, it probably is worse now. I am just happy to be alive. I do have a lot of soup with my meals. My favorite is dipping my sandwich in Creme of Mushroom soup. When I have pancakes, I add butter and then slice it all up. I then pour milk over it and let it soak some. I think if you try it, you will like it

Fsdman, you have a good wife. Listen to her and try to eat. Eventually, your appetite will return.

To all of you: From the beginning, I had a positive attitude and believed I would survive. I take herbs and drink apple/carrot juice. For the first few years, I used to be alone in church and prayed to the man above to give me the strength and mind to go forward.

catdog123

fsdman said:

lucky
CATDOG,
I feel blessed. I know you are scared-you would be a fool not to be but stay positive. Dont worry about the 50% 5 year. I always felt that the 50% included many older,sicker and less likely to survive so my chances were much higher. Eat and stay strong.Keep fighting through all the issues we all face. Know that you will be a survivor-know it!!

You are right!
You are right, i should stay positive.
I eat asparagus everyday, do you know that? Is it works? My hair dropped after the 1st chemo treatment... well, ppl told me ususally hair would drop after the 2nd or 3rd chemo... Can you guys share me some experiences? So i could get ready for the side effects... Thanks you all!

Lisa2009

Hondo said:

Hi Lisa


Send me your e-mail address I will forward you some good info on what you can do after his radiation and chemo is finish. For now all you can do is get what ever you can into him the Ensure is full of sugar but there is nothing you can do about that right now because he needs a food source. After he is finish with all his treatment what you want is to get his body in as good health as possible and purge the radiation and chemo out of him. I will be praying for you both. timhonmc@aol.com

Husband with NPC
I did send you my email anything you can advise is welcomed. Thanks and God bless you.
I am concerned and very disturbed about the gentleman that wrote about his npc returning and stage 4 and he seems to have shorten his life we are praying for him because only God knows how long we have in this life time.

Lisa2009

HUSBAND WITH NPC
Hi my husband recently finished his treatments it's been about 2 months now and he just had a total body pet scan and it looks all clear so far. I have to admit that it scares me everyday if this monster will return. I see that some people have had it come back. He was diagnosed with Stage 1 but I don't know that this really matters because it is aggressive according to the doctors. For now we are okay, but he has suffered severely with oral thrush he has to constantly chew gum, and drink water and dunk everything like bread. He eats a lot of fruits and veges even for lunch he takes asparagus, and he drinks carrot juice. I try to only buy organic foods he has cut down his sugar but not out. He never did get chemo because they felt he didn't need it. They said the tumor is completely gone, he did have a staph infection in his nose, and he also now has cataracts which will be removed soon. He also has a lot of dental work coming up it's a real horrible thing but if this prevents him from getting this back it's well worth it. I pray every single day for all cancer victims but NPC being so rare is really scarey. I hope they can do more studies, he's an upholsterer and they say his job has probably compromised him and of course we all have been exposed to Epstein Barr in one way or another. God bless all of you.

catdog123

fsdman said:

lucky
CATDOG,
I feel blessed. I know you are scared-you would be a fool not to be but stay positive. Dont worry about the 50% 5 year. I always felt that the 50% included many older,sicker and less likely to survive so my chances were much higher. Eat and stay strong.Keep fighting through all the issues we all face. Know that you will be a survivor-know it!!

Thanks
You are right, i should stay positive.
I eat asparagus everyday, do you know that? Is it works? My hair dropped after the 1st chemo treatment... well, ppl told me ususally hair would drop after the 2nd or 3rd chemo... Can you guys share me some experiences? So i could get ready for the side effects... Thanks you all!

Hondo

catdog123 said:

Hi Hondo
Hi Hondo,
My NPC stage is 3 (T2N2M0), i'm scared now. I had finished radiationtheraphy 1 month ago. Just finished my 1st chemo last week, and chemotheraphy brought me mouth ulceration, i could not eat anything now. And my legs and arms are sore.
Could you give me some advices?
Thank you for your help,
Best wishes!

G’day Catdog
Nothing to be afraid of now, you been through it and made it to the other side, and have a lot of people here to help you in the healing process. Don’t worry about the mouth ulcers, yes they hurt but they will all go away now that the radiation and chemo has stopped. As far as your legs and arms you must realize that your body it no longer the same as it was before treatment. The chemo and radiation has affected everything in you body including you muscles in time you will get some of your muscles back and the soreness will go away.

I was 230 lbs when I started my first treatment and went down to165 lbs, I am not 182 lbs. I am not as strong as I was, when I work on my Truck a lot of times I need my Son to pull on the bolts that are too hard for me. We laugh about it and he said old man it good to still have you around.

Be strong and keep your faith, it may take sometime to get use to your new Normal you, but the fact that you are alive is the most importance thing.

Keep us updated on you progress, I will include you in my pray list

God Bless
Hondo
timhonmc@aol.com

dejohnso

HAWVET 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.

dry mouth - Biotene Spray
My husband has been using a new product called Biotene Spray - it works very well for the dry mouth. He says the taste is not bad, its mint, but he can't taste much right now. I haven't found it in any store but did find it at the Walgreens online store. Price is pretty reasonable and it seems to help more than water does. The info on it says that it contains special Amino acids and enzymes which recreate some of natural protection normally found in the saliva in the mouth and say that it promotes healing as well as moisturizing.

Hondo

thunder101 said:

Cancer cant stop me!
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 better

Hi Thunder101


Glad to hear you are doing well, keep up the good spirit and stay strong.

God Bless
Hondo

Hondo

Victoria4500 said:

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.

Don't give up hope
Hi I am a Nasopharyngeal Carcinoma Survivor 3 times now, don’t give up hope. It first came in Oct 2002, I did the Radiation thing. It went away until Nov 2003 when it came back again, the doctors examine me and told me that my bone structure was that I fit in a 2% group who can take Radiation twice, so I did Radiation and Chemo. All was well until March 2006 when I started having problems again, the Doctor I went too only officer me Chemo as there was nothing much more he could do.

My Daughter Patricia determined she would learn as much as possible about my Cancer, so she became a health nut. We went on cleaners and other things to remove all the build up in my body of Radiation and Chemo, I might say I am really clean on the inside now.

I opt not to take the Chemo or any other treatment; in July 2006 we found a place call USHA in Honduras and started taking what they called ELECTRO CELL along with Dr. Ohhira’s Probiotics 12 Plus, and Barley Green. I stopped eating all Sugar or Sugar substitute except for All Natural Stevia. Don’t forget you need a lot of Prayers from everyone you can find to pray, (There is power in prayer).

The last time I went to my doctor he told me that I was mystery so he sent to MD Anderson and they confirmed I am a Mystery they don’t know why my Cancer is not spreading. I give all the Glory to my God who is my help in trouble times.

I am not saying don’t see or listen to your Doctors you need them and you need to have faith that God will guide you to the right doctor, you also need to start doing everything you can for your childs health. Keep off of all Sugar; remember Sugar is Cancers main food source. Get you kid to eat food hi in alkaline.

I will keep you Victoria in my prayers My God bless and give you Strength

Hondo