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Advanced NPC NED

aluo1271
Posts: 24
Joined: Apr 2012

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:
Seek a second opinion at a big hospital/reputable institution. NPC is rare in US, my current radiation onc was recommended by a local radiation onc. Becoming knowledgeable in treatment options is important in deciding where to go. You need to know what are IMRT and IGRT. Having both IMRT and IGRT are the best. You can ask and take note on the model of radiation equipment. In case it's a Varian, go to http://www.varian.com/dyna/locator/ to see if the hospital's radiation treatment capability.

-- Before treatment:
Having a dental exam and fix all the cavity problems. IMPORTANT: you should have a oncology mouth tray ready early, preferable so that you can wear it during the making of radiation mask. I used mouth tray during radiation. I also use it each night before sleep with SF 1.1% GEL, whenever the mouth is not too sore.

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:
First 4 weeks of radiation were relatively easy. Wear mouth tray to radiation. Apply Aquaphor after radiation but NOT before. Rinse with salt water after radiation. Show up for chemo. There were some nausea from chemo, I took Zofran and Lorazepam, all worked fine.

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
After busy radiation treatment, I took 3 additional cycles of chemo. During this time, low white blood cell count was a constant threat. Booster shot was effective on me. Sleeping early and relaxation also made difference. Saving one Zofran or Lorazepam before bed helped sleep.

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
Maintaining a positive frame of mind helped me cope with this dark period. You have to relax and believe everything will be fine. My reasoning was that I can't help doctors to treat me, but I can maintain a good mental/emotional state and healthy life style, thus boost my immune system.

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.

katenorwood
Posts: 1802
Joined: May 2012

Hey there !
Congrads on the NED ! Wonderful to hear ! Also thank you for the imformative indepth and I think resourceful post ! You have a wonderful outlook in life....keep it up ! Katie

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi alu1271,

I think I saw you once; you were coming in while I was going out. It is a pretty well worn path we’ve been on and I am glad you made it to the other side in such good shape. One year ago I never would have guessed I would be here, but I am. After getting this far, it is as if someone hit the reset button on our brains, because like you, I see life different today. I hope you are healing well, sleeping well and feeling good.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

I have thought of you many times during treatment, and wondered how you were doing...you and I started at the same time, had the same thing (NCP...tho I was Stage III)...and it appears we had the exact same treatment...right down to those last 3 Cisplatin and 5FU's (which were hell for me...5FU really hates me).

I am SO glad that you updated us!!! I'm not scheduled for another PET until the end of November, but I am SO SO happy to hear that you are NED!! This is my "feel good" of the day!! Thank you!

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Great post. Congrats on your scans! Hope yoo're recovering smoothly.

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