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Nasopharyngeal Cancer

WithHisGrace
Posts: 1
Joined: Jan 2012

Looking for some fellow fighters/survivors. I was diagnosed with NPC last May at the age of 39. I completed treatment in late October and am now just trying to recover from the harshness of the treatment. I have never talked with anyone else who has been diagnosed with this rare disease and would love to know that I am not alone.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Sorry for your need to be here, but know that you are not alone now.
You will find many here that have been through what you are, and will
be there for you. I had tonsil cancer and I am a 2 year survivor.
That is what this board is all about; SURVIVING. Ask questions
and the folks will answer them.

Best,
Steve

caregiver99
Posts: 27
Joined: Aug 2011

I have seen many posts here from npc survivors. My girlfriend was diagnosed with stage 4 npc last july at age 31. She is doing good now and continue to recover.

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

Welcome to the forum. You have come to the right place with many cancer survivors who can provide answers and lead you on the road to recovery. There are many nasopharyngeal cancer (NPC) survivors here. I too am a survivor and completed my treatment in June 1998. Check this thread originally posted by Hondo.

http://csn.cancer.org/node/185696

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

My cancer was base of tongue - hoping some more NPC survivors chime in soon. Surely not alone.

tommyodavey's picture
tommyodavey
Posts: 352
Joined: Nov 2011

Although I don't share the same disease I still want to welcome you to the forum. Lot's of folks here with tons of knowledge. Just ask.

I wish you well with your recovery,

Tommy

Cathelen72's picture
Cathelen72
Posts: 33
Joined: Jun 2011

Hi. I was diagnosed with NPC last May as well. Finished treatment in November and recovering quite well now. I would not have gotten through this ordeal as well as I did without the people here in this board. You have come to the right place. It seems late 30's is the magic number for NPC as I had just turned 39 when I was diagnosed. I am now welcoming 40 with open arms. You are NOT alone in this!

sumarah8
Posts: 32
Joined: Sep 2011

I got diagnosed for Npc stage 2b last Sep 2011, still on treatment, 2 more cycle of adjuvant chemo, I'm 35 yrs old, Asian, living here in the US, just to let you know there is a lot of survivors here for npc and we will be one of them...

sumarah8
Posts: 32
Joined: Sep 2011

I got diagnosed for Npc stage 2b last Sep 2011, still on treatment, 2 more cycle of adjuvant chemo, I'm 35 yrs old, Asian, living here in the US, just to let you know there is a lot of survivors here for npc and we will be one of them...

caregiver99
Posts: 27
Joined: Aug 2011

My girlfriend and few others I know diagnosed with NPC grew up in hong kong. They call this Cantonese cancer because it is the most common in south china.

kdwers's picture
kdwers
Posts: 16
Joined: Nov 2010

My husband was diagnosed with Nasopharyngeal Cancer Stage IVc (metastisized to Lymph Nodes and Liver, both lobes) in September 2010. He completed treatment last February. He obtained complete remission and is doing well. He is going for Pet and MRI in 2 weeks and we feel confident that "all will be well". It did take some time to recover from the harsh treatment for this diagnosis. Now it's sometimes hard to believe he has been through what he has, because he is doing so well. The diagnosis frightned us as the Dr's have told us no cure, but the cancer could be treated. They did not give him the prognosis we wanted to hear, but he is doing so well,and we have very strong faith, that we feel he has been healed. Stay strong and just know there are people who have returned to "normal" after going through the treatment and diagnosis of NPC. You are not alone!

I have a question as well? Have any of you NPC survivors had metastisis at diagnosis to distant organs? Just wondering as this seems to be "the thing" that the Dr's consider when talking to us about future prognosis and I can't help but let it haunt me a bit.

WithHisGrace, you are in my prayers.

NeoTheron91
Posts: 77
Joined: Sep 2011

Hi

I was diagnosed with NPC Stage IV on August, 2011 last year and finished my treatment 1 month ago.

Welcome to the club.

cheers,
Neo

adventurebob's picture
adventurebob
Posts: 690
Joined: Jun 2010

I just turned 40 in September. Had a clean PET in December after a year and a half of treatment for Stage 4 NPC with multiple bone mets. Just finished a 40 mile backpack trip in Grand Canyon last week. Life is good!

AB

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

means you survived the trip. How was it?

adventurebob's picture
adventurebob
Posts: 690
Joined: Jun 2010

Awesome!My favorite place in the world with my favorite person. No room for cancer in that huge place.

kdwers's picture
kdwers
Posts: 16
Joined: Nov 2010

That's awesome, you are a great positive for those following down the road of NPC! Glad to hear you have done so well!!! I do realize that it's not easy~peasy, but nice to know you can still enjoy life to the fullest, or maybe even more!

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

You are not alone. I was 53 when my two tumors showed in early-11/08, and finished tx in early 4/09. Returned to work a month after my last rad, while still trying to injest anything other than Ensure and water, but within a couple months I was able to start eating many foods, though the tastes still remain somewhat altered.

In my recovery, couple of the things I found helpfull were 1) prescription sodium flouride toothpaste/trays for the teeth. Rads do a number on the tops of teeth, and dental work for those of us w/teeth is a continuing issue. I've had one root canal and two Crowns since the end of tx, and had the tops of 6 teeth rebuilt- will be 8 by the end of the month. 2) Still use Biotene, as the dry mouth of saliva loss will last a long time. 3) Loss of gum tissue can be a problem with the base of teeth exposed and causing tongue issues, for which a Periodontist is a good Dr to get help from. I saw what I thought was further gum damage happening months after tx, and it took my Dentist to tell me what was happening was not further damage- it was a matter of the swelling of the gums finally lessening, and the true state of my gums finally coming into view.

As others have stated, there are a number of us NPC Survivors, here. Any questions or concerns- please let us know about. Lot of good people w/good info to be had.

Welcome

kcass

timreichhart
Posts: 195
Joined: Aug 2010

Your not alone I am a NPC survivor for a good year now and I was only 24 when I found out I had that nasty cancer and only was married for 6months. But as of today I am still cancer free but dealing with them nasty side effects they dont tell you about.

Resilient
Posts: 2
Joined: Jan 2012

Hello WithHisGrace,

I too am looking for NPC persons to chat with. Honestly, I didn't want to join this site because I was scared, but I am glad I did because it would be nice to chat with. Thank you everyone for your stories.

robertjuy
Posts: 45
Joined: Aug 2011

My wife is post treatment and her burned skin has become smooth again. Hair is growing. Taste is coming back. No taste of salt or sugar and man made tastes are chemical tasting now. Just believe in yourself and you will be fine. She was diagnosed in July of last year. We'll have our tests done next month. She is from South China and Hong Kong. She is the only one in her bloodline to have it. Put lots of eucerine cream on. The greasy stuff and let it air out.

zybrex
Posts: 1
Joined: Feb 2012

One year ago this month I started my radiation treatment for NPC. This year it's continuation of recovery. Some of my taste is coming back, side effects not as severe, saliva production is sort of normal, and I'm a bit more energetic. There are those good days and bad days. I'm 36 years old, Chinese, in NYC and willing to provide my experience to those that might be feeling alone battling NPC. I know I felt alone, because NPC is not common here in the USA and none of my friends really knew anything about it. They asked their relatives or parents who were from Hong Kong/China, if they had information. They knew about it, as it's common in the Canton province. But they were of no help regarding what treatments are given in Hong Kong/China or personal experiences. It's good to know that at least my friends are aware of this type of cancer that is common in our families' country of origin. My treatment consisted of radiation and chemotherapy (Cisplatin and 5FU). I go to post-treatment meetings with other survivors of head/neck cancers and they have been helpful. I was fortunate enough to meet a 5+ year survivor of NPC in the group, who happened to be also Chinese. That person has been helpful in my recovery, reassuring me that eventually all the side effects of treatment do eventually go away or are manageable. So yes, there are others with NPC, you are not alone, and some people are willing to talk and share.

caregiver99
Posts: 27
Joined: Aug 2011

Thanks for sharing your NPC experience. I have sent you a private message with some additional questions.

aprilshower55
Posts: 23
Joined: Mar 2012

hi,
i too am chinese woman 58 my parents from canton china. i started my treatment july 2011
and finish my 3rd and last chemo in nov. i know everyone is different with their dry mouth.
my water bottle is almost attached to me. i get so dry mouth it affects my sleep and eating.
i have not been able to eat much solid food. tried meats but it is impossible to swallow. bread needs to wash down with water, i avoid that too. i do not enjoy eating any solid food.
i just drink my ensure to get my calories each day to maintain my weight. i am not sure if i will gain all of my weight i lost. wish to know your experience and any suggestions for
dry mouth or foods to eat.
wish you all the best, email "aprilshower55@yahoo.com"

iYOU
Posts: 1
Joined: Mar 2012

Hi all, I just finished phase 1 of my treatment (35 radiation sessions and 3 chemo sessions) last Friday, March 9, 2012. I'm curious to know from those of you who have completed your treatment:

- how long does it take for the taste buds to come back?
- how long will my sore throat go away so that I can start eating solids again?

Thanks. Looking forward to your sharing of your experience/journey.

Grace and peace,

iY

Cathelen72's picture
Cathelen72
Posts: 33
Joined: Jun 2011

Hi iY. I just completed my final chemo treatment for stage 3 NPC in November. Always remember everyone is different and I am hopeful you will recover quickly. I finished my last round of rads in mid August. My sore throat was awful and I thought the pain would never go away but it did. The real intense pain subsided after about a month. Fortunately I had a PEG tube so I did not have to try and swallow food but I did keep drinking water so my throat muscles would keep working. I remember tasting fresh tomatoes shortly after. I cried. What an amazing experience. Unfortunately for me that was about all I could taste for a while. Fast forward a few months.....December my peg is removed as I am eating and drinking (or at least trying too) mostly anything I want. I avoid bread and snack foods, chicken and steak as they just don't taste right yet. My saliva is trying to comeback but I still find myself very dry and often need water by my side. I am still very sensitive to spices and mint but every day that passes that gets better too. I find fresh vegetables that are steamed are not only easy to eat, they have the most delicious flavor. Funny how this works, the food that is the most healthy for you has the best flavor. I even like raw onions now.
I hope this is helpful to you. This board has helped me through my toughest times. I want to be able to help any way that I can.
I hope you can enjoy your day today! It's beautiful here in Boston and I am happy to be feeling good.

Catherine

jsultana
Posts: 3
Joined: Mar 2012

Hi

What was the sequence of your treatment. Was chemo done first and then rt ?

Thanks

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

Sorry to hear the news but hang in there, we are many here all with the same type of cancer and all still here.

God bless and keep you while going through your treatment.
Hondo

jsultana
Posts: 3
Joined: Mar 2012

Just got the news this weekend that I have NPC stage 2.
Great to see that you got through it. Still under shock myself

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

You are in the right place for others with the same type of cancer. I too like many here had NPC. This year makes 10 years for me from the time I was first treated. I had it three time and I am still a survivor so hang in there you too are a survivor my friend.

PS: Click on my name Hondo and it will bring you to my profile and comtact info

God bless and keep you in His tender care
Tim Hondo

BRIGHTSTAR2013
Posts: 11
Joined: Jan 2014

HI WHG

I AM YR FELLOW FIGHTER. I DIAGNOSED W NPC NOV/12. AGE 53. GOING THOUGH TREATMENT 3 CHEMOS, 33 RADIATIONS. FEB/5 LAST RADIATION.

HOPE YOU ARE DOING WELL.

 

 

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

BRIGHTSTAR2013,

Welcome to the H&N forum, glad you found us.

Feel free to add a new post and ask anything you wish.

Matt (57)

Purplemountain
Posts: 104
Joined: Oct 2013

I too have NPC stage 2 or 3 and I'm 39 y/o asian male.  I finished 33 radiations and 3 chemos in November of 2013.  I am 2 months out of  treatment but still feel very tired and weak.  No pain in the mouth or throat.  Just dry mouth especially at night during sleep.  No saliva to digest or break down the food.  Hard time drinking ensure with milk so had to drink the clear kind.  Seems the average time for recovery is about 1 year.

 

PM

Rokuss
Posts: 2
Joined: Feb 2014

I was just diagnosed with Stage 2 npc last Friday. I also went to see an oncologist that same day. Things are moving so fast. I had a PET scan today and hope it isn't stage 3. I'm scared out of my mind. I'm asian, 40, in TX and in good shape. I've had headaches and nosebleeds for the past 2 plus years. I finally found an ENT that correctly diagnosed me. I also have a lump on my neck that is under my right ear. The dr said that I will need chemo first, then radiation. He recommended a feeding tube. Did you guys and gals get a feeding tube and did you need it? Did anyone also use an acupuncturist / herbalist in conjunction with chemo/radiation? If so, what were the results? Has anyone tried Hemp oil? It is very encouraging to read about the npc survivors on this board! Thank you so much for any advice or suggestions that you can give me. 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

I'm glad you found this forum, tho I'm sorry you were in need of it.  You might want to start a new thread of your own...this one is pretty old.  Go here to start a new one. (I'm going to answer here, tho Smile)

http://csn.cancer.org/forum/164  You click up at the top, on the left....right under HEAD AND NECK CANCER....it says "Post new forum topic".

I was diagnosed with NCP about two years ago...Stage III.  My symptom was also a lump on my neck, right side.  I think they will be giving you chemo along with radiation somewhere along the line.....not one first and then the other.  I had 3 chemo treatments (Cisplatin) with radiation for 7 weeks, then I had another 3 chemos (Cisplatin and a 4 day fanny pack of 5FU) after rads were over.  I was told that my treatment was "standard" for NPC.

I did have a feeding tube put in before I started treatment.....I was pretty skinny to start with, and they were concerned about me losing too much.  A few on here never needed one, and a number didn't get one untill down the road....it will depend on your wishes, and the opinions of the Drs. if you get one now or later (or ever).

You are going to be ok!!!!!  Treatment can be rough, but all of us made it from point A to point D, with a couple of other points in between.....I don't know where in Texas you are, but there are some good BIG cancer centers in that state (big state, I know)....Before you jump into anything you might want to get a second opinion from one of them.  You have time to do so.....most of us didn't get started on treatment until 6 or 8 weeks after diagnosis.....that seems to be par for HNC.

p

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hello,

Things are moving fast. It seems odd the ENT would be suggesting the course of treatment even before the PET results are reviewed. No need to tell you how vital it is to get the right diagnosis from doctors. You must ensure you have sufficient review of your case before agreeing to anything. Do NOT accept just one doctors opinions. At the minimum, make sure your case is reviewed by a tumor board made up of a variety of cancer specialists. Ask to attend, I did and it was very informative and reassuring to hear each opinion and factor being discussed.

If you can, arrange a second opinion with another top ranked comprehensive cancer center, know as CCC. There are many references with the link. Even better start talking to your insurance comapny to see if you can obtain services at a CCC. MD Anderson in TX is world class.

Slow down this whole process a bit. You have time and rushing things a few days or weeks is not worth the risk of not obtaining the best review and recommendations for your case.

Feeding tube - Again, why is this discussed now so early. It is something to address but certainly does not need to be thrown onto the list now. Do not agree to get anything like a PEG placed at this point. You have time, slow down a bit.

Some consideration might be given to alternative therapies but never in lieu of proven scientific approaches such as surgery, chemo, and radiation.

Good luck,

Don

james.callaway@...
Posts: 2
Joined: Feb 2014

Get the feeding/peg tube and ash about a med port. They are life savers

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

Welcome to the NPC family, I am glad to hear you are still doing so well. Wishing you are long life of being NED.

 

Hondo

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

Rokuss,

Welcome to the H&N forum, where being scared out of one’s mind is par for the course.

While treatments for cancer are many, radiation and chemo have garnered the best success rate.  I myself did not entertain many options and chose surgery, radiation and Erbitux for my treatment plan and so far so good.  If you select reputable doctors, they will help you make the correct choices for you.  AS Phrannie said a second opinion is a most reasonable request.

I wish you good luck my friend, you will navigate through this mess and come out the other end hopefully in good working order and most of all without cancer.

Matt

james.callaway@...
Posts: 2
Joined: Feb 2014

I too was diagnosed with npc in Feb. 2012. After two years of radiation and chemo I was given an all clear on my last pet scan on Jan. 21 2014. (my new birthday).

I go back for my second scan on March 24 and I'm praying for a second all clear.

 

ongsoonan
Posts: 6
Joined: Mar 2014

I was diagnosed with npc stage 3 in Dec 2013. I just completed radio/chemo about 2.5 months ago. I would very appreciate if you all could give me your opinions/suggestions on following matters.

- I lost about 9 kg of my weight and feel very hard to gain my weight again. I only take vege, bean, fish, egg and milk (ensure). What is the appropiate diet for npc patient?

- In Malaysia, normally we only go for CT or MRI scan. Is it enough? or PET scan is better?

- I feel quite weak compare to the past and just can do some simple exercises daily (about 45-60 min). 

- I canot sleep well at night due to dry month. I use biotene/oral 7 but no improvement.

Thank you   

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

hi ongsoonan, welcome to our club.  i dont' think i've seen you post before so i'm guessing you are new.  you should start a new post and introduce yourself.  just copy and paste what you have typed in this post then start the new post.  you should hear from folks who have experience with your type of cancer and can tell you what they went thru and see how that compares to what you are going thru.  welcome to the group.

dj

ongsoonan
Posts: 6
Joined: Mar 2014

Thank you dj and I will creat a new post about my case. TQ

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