Oct 27, 2012 - 5:47 pm
Diagnosed stage IV NPC in April this year, finished treatment in early October and my last PET scan showed NED! I would share some of my own experiences in hope that they could be useful to new comers.
First of all, a little bit of background. I am a 40-year old male, was generally healthy before this. For stage 4 NPC, the standard treatment includes 35 IMRT radiation co-commit with 3 Cisplatin (100mg) for each 3 weeks, and then 3 additional chemo treatment with Cisplatin(80mg) and 5FU for every 3-4 week. It's a very tough treatment but the good news is that even in my advanced stage, there is still hope at the other side of tunnel.
-- After the diagnose:
-- Before treatment:
Check with your doctor to see if you need to have feeding tube installed. My doctor told me that I didn't need one to begin with, they would put one in if I turned out needing one. So I didn't have feeding tube and it was tough during 5th to 7th week into radiation.
Find a place to live if you are treated far away from home. American Cancer society maintains several facilities such as Hope Lodge to help housing cancer patients. I lived in Hope Lodge New York for almost 2 months. Nice and clean room for both patient and care-giver, wonderful club/therapeutic program on each week day. I am very appreciated for such convenience. Tell your doctor if you need housing, they might be able to help.
-- Starting treatment:
During last 3 weeks of radiation, swallowing became a challenge. To cope with pain swallowing, I took pain killer (pills plus patches) and magic mouth wash. During worst time, I live on 6 bottles of Ensure and 3 bottles of water each day. Calories per swallow is a key criteria, to me, Ensure Plus is better than, for example, Orgain, because of higher calories in less water.
-- After radiation
Bowel movement was another problem. When Miralax was not enough, I used Dulcolax. But then the issue became diarrhea. I Didn't have good solution for this, just kept drinking water and hoped to get over with it soon.
-- Keep faith
That's about all I could remember. The super thread on this board is a wonderful resource to get started. Finally let me say that being cancer survivor is a gift from life. I really appreciate it.