NPC

We all understand the feeling...
Time to slow down and just take it one day at a time. That's the best way to do this. If you let your head get too far in the future, things just don't make sense. It is good you found this board, as there is lots of information/experience to be drawn upon here. I had SCC, or rather I've had SCC three separate times, not quite what you present with, but pretty close in its latest iteration. NeoTheron has posted a link to the superthread. That's a great place for you to start information gathering. How far into the process are you?

Best to you.

Pat

NPC
Hi Joseph,

Sorry to read about your diagnosis. You're now family here.
I received treatment for Stage 4 NPC with bone mets over the last 2 years and had a clean scan last December. I am now 40. Treatment was challenging but doable. This board was very helpful. Keep your friends and family very close and let them help you. Make your diet as healthy and green as possible and exercise daily. Your docs will do their work and it's up to you to do yours. Get 2nd and 3rd opinions on everything and ask lots and lots of questions. Stay strong.


AB

Joseph
Welcome. I was stage-3 NPC back in late-08, with my last rad in early-4/09.

As stage-2, I would argue that TIME may be a very important issue- sooner you can get the treatment started, then the better chance you have of nipping it in the bud to keep from going stage-3. This view is supported by a You Tube 3-part video I recently saw with a Nasopharyngeal search, which was of a 2008 international seminar of H&N C Specialists. The American lady Dr noted that Concurrent Chemo and Rads is the standard for NPC, now- as some patients who first got only Chemo saw their condition get critically worse, and it likely would have made a significant difference if they'd also been getting Rads right from the get-go. This applies to those with advanced H&N. She, Dr Lori J Wirth, explains it very well in part-3 of the seminar, and I would urge you to watch- will give you the link in a Private Message, which you can access by clicking CSN Email.

Your ENT/Onco/Rad team know the specifics of your NPC, so they know better than I about your stage-2, and what treatment will be best for you. As a rule, many of us think that with C it is best to error on the side of the aggressive, as I do. The one negative in that mindset is that you might not be able to get Rads a second time without the damage becoming a major issue. That said- important that the Rads applied get it done right.

I was unknown-Primary, so they applied the Rads in 20 places. Finding, or not finding, the Primary is somewhat of a key matter in treatment, and you should ask about it.

The U of Iowa advises that to help the teeth with Rad side-effects, Flouride Trays should begin even before treatment, and during, and after. A Brother, here, named Delaware Jim, first advised me of this.

Hope you'll keep us informed on what the Drs tell you about the treatment they have planned for you. I got a PEG and Port before treatment started, maybe because of the C&R regiment they did to me, which you likely will not get. I mention this, because I got a little hyped about it when I was told of it on my first Onco visit, but it turned-out that neither was any kind of a big deal to the negative for me- just took a little getting used-to...

Trust me on this, Joseph, as one whose NPC showed in November of 08: You're gonna survive this thing- so get used to it!

Believe

kcass

Hi jsultana
There are a lot of us NPC cancer survivors here on CSN and we are all willing you help and give you the support you need.

God bless
Hondo

NPC
You are not alone and are at the right place for support. Takes pray, positive thinking, support and love from others, patience and believe!! Be strong..you can do it!!

Fran