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Nasopharyngeal Cancer

Anyone else with nasopharyngeal cancer? If so, give a shout!

I am one month out from my treatment completion. I am still slowly recovering. This past week, I finally started to feel much better with my energy level. I am still working on my throat function and oral diet, hoping that I'll be able to get my feeding tube out soon. I am still struggling with adapting to my new "normal" of dry mouth and wacked-out taste buds, trying to find foods that I can tolerate. My re-imaging won't be done to see how I responded until 2 months from now (in order to let the inflammation go down), so I am nervous...but I am trying not to think about it too much.

Anyway, I'm glad I found a place with other young head/neck CA survivors! I went to a local head/neck support group before but I was the only one under 50.

Comments

  • 18 Comments sorted by Votes Date Added
  • I'm a 26 year old female ...was diagnosed with nasopharyngeal carcinoma yesterday .. Staging is yet to be done..I'm really scared.. Can anyone please tell me how is it gonna be like? How tough is this fight going to be?
  • waterlily,

    first off, welcome to the SCF! I'm so happy you found us. I haven't not heard of anyone else on here yet that has shared the same type of cancer that you had, but just because they haven't spoken out yet, doesn't mean they're not around. Although I had a different primary, it looks like we shared very similar treatments and side effects. the cotton mouth and taste should recover with time so just keep working your way up to different foods as your body can tolerate. I remember starting at water/gatorade and slowly working up the chain...chicken broth, yogurt, noodles and so on. it takes time and patience but it will get better. I'm about 18 moths out of treatment now and am doing very well with all types of food, though I do need to consume more liquids while I'm eating drier foods. There's a lot to look forward to so keep your head up :)
  • Well your not the only one under 50 or under 30 who had NPC I am a year survivor of this nasty cancer. But Right now I am dealing with some major side effects like: Hearing loss,TMDJ,heck/neck problems,dry mouth,numbness in the legs and arms, lightness, lung problems. So what kind of side of effects are you dealing with since I know this topic is almost a year old.

    I thought just to bring this up and share along with you that your not the only one who is dealing with the same cancer.
  • It's so great to hear of others w/ NPC. I was diagnosed w/ NPC stage 3 in Sept of last year. I received aggressive treatments ( combined radiation & chemo). I got my complete remission pass about 2 weeks ago although I still have the side effects: dry mouth, thick saliva, loss of hearing & occasional numbness of legs & hands. The feeding tube I had for 6 months helped me out a lot as far as nutrition was concerned. I had my feeding tube out on April 2 & it sure was a pain to begin eating by mouth again. My taste buds are still abnormal but what can I do, I've gone through the worst. The doctors are saying it will all come back in time. So to my fellow NPC patients - just hang in there because things will get better.
    I hope to hear back from you guys.
    To treichhart: I am looking forward to next year when I can say "I am a year survivor".
    To waterlilly: How are you doing now? Give us an update.
  • alphonsealphonse Community Member
    edited November 2014 Vote Up0Vote Down
    Hi, I am a stage 4 NPC survivor.  I am also having the dry mouth and was diagnosed with hypothyroidism this year. I have gotten used to the dry mouth. My taste buds has came back but for certain taste it taste quite extreme although it is only a little in quantity. There will be side effects that will follow us for life and side effects that will go away as time pass by. Most importantly is to stay strong and learn to adapt to the changes.
  • Hello, I have been fighting this NPC for 16 years now. Started in my sinuses, with surgeries and radiation, with a reoccurance a little over a year later. Had a cranial-facial resection and cleaned me out. Came down with an infection and it was back ubder the knife again. Then 6 months later to replace my forehead bone with plastic.
    Everything was fine for 10 years and I considered myself a survivor, but was once again showing signs of a problem. After biopsies, Cancer was once again present in my sinuses. More surgeries.

    All clear for 6 more years until I got a touch of pneumonia, and during a follow up x-ray cancer was found in my lungs. After 3 biopsies, it was determined that it was the same cancer I have had and it has metastasized to my lungs. I am now undergoing extensive chemotherapy. I am really sick of this...
  • Dear time2fix, I am amazed at your strength and continuous fight! Christian or not, God bless you! God's greatest Angels are given the biggest most toughest and challenging trials here on earth, we are only given what he knows we can handle, trust in Him. You did before and will upon return, stand on his right hand! This was the only thing that keeps me going.
    October 9, 2014 I was diagnosed with nasopharyngeal carcinoma after multiple tests and scans on the lump found on the right side of my neck that came up negative, we finally removed it (which was actually 7 lymph nodes) which the tissue of all 7 tested positive of the squamous cell carcinoma.
    I started chemo and radiation in November, enjoyed my pork chops and birthday cake and ice cream the day before thanksgiving. Thanksgiving morning I woke up and my salty taste buds were gone. My sweet buds left me just 5 days later. Treatment was all throughout my favorite eating holidays, it was sad. I did my best to force myself to eat, but I couldnt. It wasn't the pain, I could handle the pain. My problem was the nausea was so bad, the throwing up from the chemo (once a week 7 weeks) and radiation (35 fractions) and the disgusting thick saliva that I couldn't do ON TOP of the not being able to taste. Trying to eat was putting a mushy texture on my tongue and I just couldn't get it down before throwing it and any acid in my tummy up.
    That's been my biggest problem. I'm now in recovery thank goodness. I celebrated New Years eve being my last chemo day, and january 7 my last radiation. But I'm using my feeding tube more than I ever could during treatments. It's still gross and I'm tired of the stupid tube and the formula. But I can't quite get food down without tasting it. Am I being a pansy? Am I the weakest recovering patient? Have all of you forced yourselves to eat without tasting the food?
    Trying to see a path of recovery, scared that the return or normal taste, or any taste at all, will return.
    God bless all you survivors!
    puatiare
  • david97david97 Community Member
    Hello, i am David Betham. I was diagnosed with stage 3 colon cancer in 2013, at 38 years old.I had surgery, but refused chemo.Instead I used nutrition and natural therapies to heal myself.i was able to contact a very special man, dr clark thomson he gave me the help with cannabis oil By the grace of God, I'm alive and kicking, and cancer-free! [drclarkthomson@gmail.com] contact him and get the oil and be free from cancer
  • BellaBella Community Member
    Hi everyone, I'm Bella. I just found this site and joined immediately. I was diagnosed with nasopharyngeal cancer on 2/18/16. That was the darkest day of my life. I hane a 20 month old baby girl and I'm so scare I Wong be able to see her grow up. I've just completed 6 rounds of chemo and 33 sessions of radiation. Now about 1 month post treatment. My biggest challenge now is my throat and dry mouth, can't eat or drink, I have a feeding tube put in mid way through treatment. In the perfect world I would have the tube remove and eat on my own but the throat won't allow it. Can you share with me how and long before you can eat and drink without pain? So happy to have found this group.
  • error783error783 Community Member
    somebody who can help me please inbox
  • What help do you need?
  • sashasasha Community Member
    Any npc survivors have issues conceiving after treatments?
  • miasolmiasol Community Member
    guys, we have a group in facebook for nasopharyngeal cancer patients, you can look it up to the search tab Of facebook, " Nasopharyngeal Cancer Awareness" many people there have been through the same battle as we did and they are very helpful, see you there.. Keep the faith
  • roserose Community Member
    been diagnosed of NPC stage 3,had my 3session chemo finished,3more to go,radiation on my 10th session and 23 more to go, today while eating cried alot,putting food in my mouth,if not very bitter,it was tasteless at all makes me pity myself too much..i dont know if i can cope up with this kind of stupid sickness,im starting to become depress,and feeling hopeless..
  • I have finished these same treatments about 7 months ago. 5 of 7 chemos and 33 radiations .  . I don't have a quick remedy for your eating difficulties , however foods with gravylike substances like stews , mashed potatoes and gravy or creamy soups will be a little easier to get down . You need to eat and eat high protein foods constantly .................Through the first few months , I lived on Boost , Jevity , and a thing called Magic Cup , made by the Hormel company .Drink whole milk too .  I was only able to eat mashed potatoes and sausage gravy at first and now 7 months later I eat Dip eggs ,blueberry pancakes and lately bacon , every single morning for the past 2 or 3 months .I had lost 30 lbs and have gained back about 10 . I was fairly active at age 63 , with a full time job, and when I got sick I retired .I also would suggest mixing Whey protein powder in you milk too . Without additional protein your body will start to use protein from your muscles like your heart . You do not want that to happen , you will loose strength and mass . You should begin working out , such as walking for even a short distance and when your treatments are done start using free weights and a mild workout dvd . I can give you hints on that . The workouts will combat depression better than any drug or therapy . You need to get mad and get on top of this . You are at war and you need to kill all the cancer and its side effects , and you can . Feel bad for those other people you see in there getting treatment and not for yourself . It doesn't help your  recovery to feel hopeless or depressed. I have found that after a workout I almost feel normal . You will find your new normal but it is about a year away . You can do this . please write again about your treatments and recovery .   
  • roserose Community Member
    thank you leftywoody..
  • hello everybody,im also an 8 year survivor of NPC. it is a hard treatment to go through, especially at the end where you loose your feeling of hunger you cant speak coz your mouth is so dry coz your saliva gland has taken such a beating,where i can only open my mouth as wide as my index finger knuckle,with the pain of ulcers rubbing against your teeth while you try to talk, your throat is all burnt to hell,you cant eat or drink coz of this or even swallow you own saliva and feeling sick all the time. you do start to think "can i put up with this for the rest of my life?"...the answer is no..you cant..and you dont have to coz the body is a surprisingly amazing recovery machine..when your treatment ends..take note in how wrecked you are and then check in every month,from where you were to where you are now you will be surprised how much you recover..you will have to put up with the battle you have lost in your war .but for me 8 years on, i still dont have the feeling of hunger,i still cant open my mouth that wide,i still have a dry mouth coz my saliva gland is goosed. i also feel sick every morning for a while..but with all that said..i dont mind it..it could be worse..oh yeah and weed gives me back my feeling of hunger and stops me feeling sick in the mornings..but the government would rather leaglize the good stuff you no "alcohol and tobacco"  thanks Britain cheers for keeping us suffering. Peace!!
  • finished radiation in mid december and still receiving chemo. taste buds have returned to almost normal state but still suffer from dry mouth. starting to gain a little weight back, loss over 50 pounds since being notified of stage 4 cancer. tumor has shrank but still in my head, still suffer from doublevision, but headaches stopped a couple of months back. going to research cannibus oil treatment because i feel my NPC is treatable not cureable for now. anyone with available info please hit me up. #the fight continues

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