Nasopharyngeal Cancer

2

Comments

  • caregiver99
    caregiver99 Member Posts: 27
    zybrex said:

    You will feel better
    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.

    Thanks zybrex
    Thanks for sharing your NPC experience. I have sent you a private message with some additional questions.
  • iYOU
    iYOU Member Posts: 1
    Just finished Radiation Treatment
    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
  • jsultana
    jsultana Member Posts: 3
    NPC
    Just got the news this weekend that I have NPC stage 2.
    Great to see that you got through it. Still under shock myself
  • Cathelen72
    Cathelen72 Member Posts: 33 Member
    iYOU said:

    Just finished Radiation Treatment
    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

    Hi iY. I just completed my
    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
    jsultana Member Posts: 3
    iYOU said:

    Just finished Radiation Treatment
    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

    Hi
    What was the sequence of

    Hi

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

    Thanks
  • aprilshower55
    aprilshower55 Member Posts: 31
    zybrex said:

    You will feel better
    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.

    npc
    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"
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Grace
    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
  • Hondo
    Hondo Member Posts: 6,636 Member
    jsultana said:

    Hi
    What was the sequence of

    Hi

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

    Thanks

    Hi Jsultana
    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
  • BRIGHTSTAR2013
    BRIGHTSTAR2013 Member Posts: 11
    HELLO

    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
    CivilMatt Member Posts: 4,722 Member

    HELLO

    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.

     

     

    welcome

    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
    Purplemountain Member Posts: 119
    NPC at 39

    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
    Rokuss Member Posts: 4
    I was just diagnosed with

    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
    phrannie51 Member Posts: 4,716
    Rokuss said:

    I was just diagnosed with

    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. 

    Hi Rokuss...

    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

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    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

  • donfoo
    donfoo Member Posts: 1,771 Member
    Rokuss said:

    I was just diagnosed with

    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. 

    welcome to CSN

    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

  • NPC

    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.

     

  • Rokuss said:

    I was just diagnosed with

    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. 

    get the port and tube

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

  • Hondo
    Hondo Member Posts: 6,636 Member

    get the port and tube

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

    Hi James

    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

  • ongsoonan
    ongsoonan Member Posts: 10 Member

    NPC

    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.

     

    New NPC

    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
    debbiejeanne Member Posts: 3,102 Member
    ongsoonan said:

    New NPC

    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   

    hi ongsoonan, welcome to our

    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