NPC

Hi
My name is Joseph Sultana, 43 year healyhy male ( or used to be )
I have just been diagnosed with Stage 2 NCP.

I would really love to hear from anyone who has been down this road as I feel I am spinning out of control.

Comments

  • NeoTheron91
    NeoTheron91 Member Posts: 75
    Right place
    Hi Joseph,

    Welcome to the club!
    You're in the right place for all your needs. I've diagnosed with stage 4 NPC last year(Aug 2011) and completed my treatment(Chemo + Radiation) on Dec 2011. This group gave me all the information and strength I need to battle with the NPC. Have a look at superthread compiled by one of the members "sweetblood" which has most of the stuff you need in the near future.


    SuperThread compiled by SweetBlood22



    cheers,
    Neo
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    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
  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Joseph....I'm new, also...
    as some have said to me...I'm sorry you have found yourself here...but...there are so many incredible people here, you couldn't have found a better place under the circumstances. It's a place of vast knowledge, lots of humor, and a warm blanket when you need it.

    p
  • adventurebob
    adventurebob Member Posts: 691
    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
  • Kyle Gilmore
    Kyle Gilmore Member Posts: 55
    43 year old male with NPC here too
    Last treatment for me was 11-11-11...I was stage 3.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    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
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Welcome J
    Welcome! as you can already tell this is the place to be for information, experience and support.

    john

    follow these survivors and you will do great
  • Hondo
    Hondo Member Posts: 6,636 Member
    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
  • aprilshower55
    aprilshower55 Member Posts: 31
    you are not alone
    jsultana,
    i too thought i was healthy female. i was diagnosed in jun 2011 stage 3 npc. i was in shock and cried. did not know about this site and you will find the help and support here. i am learning new information each day on this site. you will need the support of your love ones to help you travel through this journey. you will get through this, and feel free to ask alot of questions. my prayers are with you.
  • francma
    francma Member Posts: 69 Member
    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
  • kwana3
    kwana3 Member Posts: 10

    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

    Bone Met NPC
    I found out that I got NPC and started treatment last Sept. Three months after the treatments, I did a PET scan and found that the cancer had went to my bones!!!! I had search on the internet and saw that when it gets to your bone, it is pretty bad and the chance of cure is low!! I am going back into treatment in 3 days! I just want to know your story and how you doing now.
    Also is there anyone here that got NPC with bone met?