nasopharyngeal cancer

NeoTheron91 said:

Side effects
After finished my radiation & chemo treatment 3 months ago, I am having regular nose blocked, one of the ears is blocked, dry mouth and some pain in the left shoulder. According to this forum, it's new normal life style. so we have to adapt with it.

new way of life
i have been telling family and friends i have different life style. yes, i agree with you this would be our normal life style now. your nose blocked do you use nasal irrigation? i use it twice a day it helps clear the mucus. also through out the day i use nasal saline
(arm & hammer). how is your dry mouth? i feel my dry mouth and throat is pretty bad. i can not talk too much otherwise i start to cough and lose my voice. always carrying water bottle. i am glad have found this discussion board lots of information we all can share to improve our road to recovery or adapt to our new life style.
good luck, npc survior

Karri said:

2 Year NPC survivor
Hi. After reading many of your stories I am feeling much less sorry for all the after care problems I seem to be incurring. Does anyone else feel the medical profession is letting them down? I had stage 4 with no symptoms except I had an enlarged lymph node on the right side of my neck. Through pathology once my neck dissection was complete we figured out it was nasal. I went through 7 weeks of radiation and 6 months of chemo. My side affects are very minimal compared to most of yours. I am, however, finding that my after care is less desirable than I had hoped. I am trying to keep a positive attitude but sometimes it is difficult at best not to feel frustrated and alone. I am glad to have found this site and pray for all of you.

Hi Karri
Sorry you are having to go through this and I hope things turn around for you very soon. Sometimes just talking to others who like you have been there helps a lot; CSN is one great place for that but you might also try other support net worth where you can meet others in your area. I am a NPC survivor, my cancer came back three times and with the help of God and a lot of prayers from my friends I beat it all three times. I am always willing to talk if you need, just click on my name and it will bring you to my profile and e-mail address.

God bless
Tim Hondo

aprilshower55 said:

NPC surviour
hi,
i am chinese and 58 years old. my parents born in canton china, and i born in hong kong.
i notice slight bleeding when i did my nasal potty. i did not think anything of it for about 9 months. then i started feeling water in my ears, and pressure in the ears. i was scared to go to ent, cause i was afraid of the worse. i had stage 3 npc, and stage 1 in my lymph nodes. started 35 days of radiation and chemo in july and aug my 2nd chemo. nov was my 3rd and last chemo. i had a feeding g-tube put in two weeks into my radiation and removed
my tube in jan. when i wake up from my sleep my neck and shoulders hurt each day. i have schedule for eye and hearing exam next month. i was giving myself sometime to hopefully heal a little more before getting new glasses. i do not know if i need hearing aides. i do notice my hearing is not the same. i often hear ringings sounds in my ears. my biggest challenge is sleeping and eating. as you may know i have very dry mouth and i have not been able to eat much solid foods. i drink 3 or 4 ensure plus with 350 calories a day. i eat a table spoon of oatmeal with almond milk and slice of apple diced small with cinnamon for breakfast. i make a protein smoothie for lunch and dinner stir fry few slices of zucchini,and 2 mushrooms. i usually get about 11/2 hour of sleep and awaken with very dry throat. i would drink some water and rinse with biotene oral rinse and use biotene jel before trying to sleep again. i usually get up about 3 or 4 times a night before my alarm wakes me up for work.

are you able to eat any solid foods? do you have problem swallowing? i am glad to have found this site, and know there are others who had the same kind of cancer as myself.

NPC Survivor
I had a problem of not hearing from my left ear and thought it was the result of chemo. It turned out I had fluid in the ear. My ENT inserted a tube in the office that day. Was able to hear normally again.

I also developed frozen shoulders about 5-6 months after treatments started. Was very painful. I have been having physical therapy for 6 months now. Also had acupuncture which did help with the pain. My range of motion isn't totally normal yet, but much better. I may need to see an orthopedic. I was told it was from stress but wonder more if it is from treatments.

I am 13 months post treatment and still have problem swallowing certain foods. Have plenty of water or milk nearby.

lodie said:

npc
i have it and it sucks. all the radiation treatmants suck, i dont want to do it anymore but i have to in order for the cancer to not come back.. i cannot taste anything, everything tastes burnt or just flat out gross.. i always have a runny nose and i cough up alot of mucous or it drains down my throat and the sickly sweet taste of it makes me gag.. i am always tired, and my eyes are blurry.. my balance is off.. i hope all this will get better in time.. i want to have high hopes but its hard when you read about all the down effects that people go through. iI used to love to eat but now i hate it so much.. i usually have a crying jag every day.... my nose is sore and raw from the drip, my neck and shoulders ache all the time. and yesi suffer from dry mouth also... even the strongest foods have no taste to me... this is like a nightmare and i feel like i am bieng punished by some higher power... i hate this illness and well i am grateful that i am alive but then i also feel like whats the point. i am a 39 year old Thai woman and was diognosed in Feb 2012, i have 26 more radiation treatmants left and 5 more mondays of chemo to do than i am done.. but the long term effects of the treatments scare me.. and thats what makes me cry.. best of luck to you.

npc
You must believe and have positive thinking. It does suck but you can do this!! It will all be in the past as a nightmare and soon will forget. Never ever give up!!! Try and do stretches for your neck and shoulders or even get physical therapy, as it would help. I had all your symptoms and I too, had to cry. This is a great website for support..that makes a difference. I am doing good now and you will too..believe!!

lodie said:

npc
i have it and it sucks. all the radiation treatmants suck, i dont want to do it anymore but i have to in order for the cancer to not come back.. i cannot taste anything, everything tastes burnt or just flat out gross.. i always have a runny nose and i cough up alot of mucous or it drains down my throat and the sickly sweet taste of it makes me gag.. i am always tired, and my eyes are blurry.. my balance is off.. i hope all this will get better in time.. i want to have high hopes but its hard when you read about all the down effects that people go through. iI used to love to eat but now i hate it so much.. i usually have a crying jag every day.... my nose is sore and raw from the drip, my neck and shoulders ache all the time. and yesi suffer from dry mouth also... even the strongest foods have no taste to me... this is like a nightmare and i feel like i am bieng punished by some higher power... i hate this illness and well i am grateful that i am alive but then i also feel like whats the point. i am a 39 year old Thai woman and was diognosed in Feb 2012, i have 26 more radiation treatmants left and 5 more mondays of chemo to do than i am done.. but the long term effects of the treatments scare me.. and thats what makes me cry.. best of luck to you.

Hi Lodie,
I had my last
Hi Lodie,

I had my last treatment for NPC stage 3 on 11-11-11. I know what your talking about for sure.

Food is still a task for me but it has been getting easier. I am up to meatloaf and mashed potatoes tasting almost like it used to...i need to dump a bunch of ketchup on it though.lol

I hated the fact that i needed to feed myself thru a tube and couldnt swallow for almost a month, but...it realy is only part of the process of treatment and healing.

What really helped me was getting a baritone ukelele and playing that for hours. Helps me to focus due to the foggyness in my head and gets my mind off of things.

I have been dealing with lots of new aches and pains, blurred vision, tiredness, and have 4 more appointments with my dentist to try and be proactive to deal with my teeth. All these things got easier to deal with when i came to terms with the fact that its a process many have gone through before me...when i did that I found things i could be grateful for such as the recent evolutions of treatment for our specific cancer. tomotherapy machines and so forth.NPC patients before used to just get there whole head blasted with major doses of rads, now with imrt we have such a better chance to survive.

For me the battle wasnt about the symptoms and side effects but about finding things i could really live for.

Regardless of circumstance, we can find peace. I hope you do.

longtermsurvivor said:

Be strong
there is life after this treatment. I finished my second radiation treatment six weeks ago. My radiation was for a malignancy of the soft palate, so my radiation symptoms area exactly like yours. Yes, it was pretty miserable for awhile. My nose and eyes ran so badly I could barely go outside. My shoulders and neck cramped severely. My energy levels ebbed to where I could barely drag myself around. My mouth got so sore I couldn't eat, only liquids would go down. But I knew I had to continue, because the disease would have otherwise won.

That was six weeks ago. My nose and eyes are already almost back to normal. I am regaining taste already. I had my first solid food just today, and am almost off pain medicine. I am taking Tai chi, and that has completely eliminated the neck and shoulder cramps. And I am walking several miles a day and lifting some weights. My energy levels are already very very good.

There is life after treatment. The treatment is severe, but the disease is a bad disease, and this is what we must do to go on. Learn to deal with this process one day at a time. And deal with your recovery that way too. Glad you're here.


Pat

Lodie, don't give up. We
Lodie, don't give up. We have all been at the same place that you are now and have come out the other side, feeling strong and knowing that we have done all we could to get rid of the cancer. All of the side effects you are having now will either go away entirely or get so minimal that you will be able to live with them. I had 75% of my tongue removed, a neck dissection and forearm free flap done only 15 months ago and just last week got my stomach tube removed. I can eat some solid foods now, and it gets better every week. Taste is still not back, but can do sweets. Please hang in ther and don't give up. You will be amazed at how well you will come thru it all.

aprilshower55 said:

lodie
like all of us on this board we have been through this road. i am no different than you, my last chemo was in 11-11. my last radiation was 8-19-11. i had a feeding tube put in soon after i begin my rad. i removed it in jan. you will get through this as hard as it sounds. i wish i had found this place when i first found out about my cancer. i started praying each day and it helps you get through the difficult days. have your love ones close to you and accept there support. the best thing for you is sleep. if you feel tired sleep is what your body needs that is what will keep you strong to fight this battle. remember we are here to support you.

Lodie
I, too, was NPC back in late-08, and finished tx in April of 09. And I was 55 by the time treatment started. I was amazed at how fast my mouth healed. True, the teeth are still a bit of a problem, but that's life. You have C, Lodie, and at your age one heckuva lot more cause for Hope than I likely did. The flipside to looking at the Google images of H&N is that one gets to see some horrific pictures of WHAT HAPPENS WHEN YOU DON'T GO THRU TREATMENT. This is H&N C, Lodie. That's about as serious as it gets. It's no venture to say we all know what the side-effects are/can be like. I, like just about everybody here over the past three years, can tell you the treatment experience is what you make of it- that's why we stress to keep it in the Positive with mindset while in treatment. Nothing more than a rough road, if that's what you want it to be. It's up to your Drs to make said treatment tolerable, so keep them in the Loop as to how you're doing, and they'll help with both the physical and mental. You're gonna be okay, and life on the other side of treatment is very good- we are all here with testimony to that fact. This is 2012, and you have many years of a good life ahead of you.

Believe

kcass

lodie said:

lodie
thank you everyone.. i guess i should get off the computer now and head down to radiation..
i will write more when i am done.. i need to be a little more positive about all this and see the upside... sometimes i feel so ungrateful and then cry because of it... i definatly need to stay on this site.... i will be back in half and hour or so.

Hi Iodie

I too am another NPC case, when you have time click on my name Hondo and read my story, It’s OK to be mad and angry I think we were all like that at first. Just hang in there you are in the best place there is for help as there are a lot of us here to give you support. We have all been there and are now on the other side enjoying life once again and you will too very soon.

God be with you in your trials
Hondo

Hondo said:

Hi Iodie

I too am another NPC case, when you have time click on my name Hondo and read my story, It’s OK to be mad and angry I think we were all like that at first. Just hang in there you are in the best place there is for help as there are a lot of us here to give you support. We have all been there and are now on the other side enjoying life once again and you will too very soon.

God be with you in your trials
Hondo

I have NPC, too...
I haven't embarked on treatment yet, but I'm about to in a couple of days. I believe, like Hondo...it's ok to be mad...it's even ok to have a pity party, I'd say it's even normal...as long as we don't let ourselves get stuck in a rut. Having all these folks here show us...lead us...thru this tunnel is a gift from God...I truly believe that.

I think if you come here everyday...go back and read old posts if there aren't any new ones...open yourself up to absorb the hope and stength found here...you'll wake up one morning and FEEL the strength coming from the inside out, and not just from outside. It will be yours. It will be you who will be helping us newbies get thru this fight.

p

lodie said:

npc
well all my treatments are done.. what should i expect now?... got runny nose runny eyes... scratchy throat.. burps lodged in my throat and lots of fatigue......... no taste for food yet but i have had a peg for like a month still not gaining weight but not losing it either.... vomiting alot....neorapathy in fingers and feet... feel achy some days but i can tolerate it...write back soon

Yeah for you!!
Treatments are done...you need to be danced around the kitchen a couple times....you have accomplished something HUGE!! I'm a couple weeks behind you, but I hear you cook for a couple more weeks, but then the healing really really begins....you are on the road to recovery.

p