Nasopharyngeal Cancer

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.

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 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.

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 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. 

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 )

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

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. 

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

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

james.callaway@live.com said:

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.

 

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