Nasopharyngeal Carcinoma round 2

OFD272
OFD272 Member Posts: 5
in Head and Neck Cancer #1

I am a 21 y/o diagnosed when I was 20 just after graduating the fire academy.  I was checked by the doctor because I could not breath through my nose, which made wearing an airpack very difficult.  I went through countless rounds of chemo (cisplatin) and 35 radiation treatments.  I was given a clean bill of health in late May of 2013.  Late last month I went for a follow up pet scan which showed a hot area in my back by my L 4 vertebrae which turned out to be a tumor.  My doctor believes that this was a result of the EBV running through my cells.  I have been through an additional 15 radiation treatments and am preparing for chemo. I am just wondering if anyone else has had any simmilar recurrences, and if so what course of action was taken? The hospital is going to try sending me to a clinical trial out in texas to mature my lymphocytes so they attack any EBV infected cells thus killing the tumor. 

Looking for thoughts, or any similar situations. 

 

 

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome..

    EBV as in  Epstein-Barr Virus ...?

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Welcome to this forum

    OFD....you have stumbled on the most informative and ultra-supportive group of folks on the internet.  I'm just sorry you had to find us. 

    I had NPC, also....and tho I know that EBV is one precurser possibility of NPC, you are the first I've seen here.  Where in Texas are they thinking of sending you...which hospital? 

    p

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    phrannie51 said:

    Welcome to this forum

    OFD....you have stumbled on the most informative and ultra-supportive group of folks on the internet.  I'm just sorry you had to find us. 

    I had NPC, also....and tho I know that EBV is one precurser possibility of NPC, you are the first I've seen here.  Where in Texas are they thinking of sending you...which hospital? 

    p

    Welcome

    Welcome to our group but sorry you had the need to find us. I maybe way off base but I just finished a 5 day round of SBRT at Mayo in MN (also offered at MD Anderson in Houston) which I understand is primarily for isolated tumors and those that have metaztisized. MDAnderson also offers proton therapy which is a longer treatment course but also an option to consider if you have already been radiated once. My reoccurance came from SCC to lower jaw after being clean 15 months. So sorry to hear you are going through this at such a young age. 

    God bless,

    Candi

  • corleone
    corleone Member Posts: 312 Member
    #5
    Another NPC survivor

    I went through concurrent radiation and chemo, and then chemo alone and finished 9 months ago. While I am now in remission, there is no way to tell when the beast will be back. My tumor was EBV positive. At that time I was also looking for some kind of immunotherapy, that in my view it’s a much more “natural” way to deal with this. What you are referring to, is probably the use of autologous EBV-specific cytotoxic T-lymphocyte (CTL) for NPC. If you can participate in a clinical trial with this treatment, would be great.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Another NPC here

    Welcome to CSN, I too had my NPC come back and into the node’s in my neck that required more radiation and chemo. My first treatment I was only a stage 1 but the second time I was stage 3 almost 4 when it showed up on a PET scan. The treatment the second time was a lot harder on me but I did make it and all that been 7 years ago and last month my ENT gave me a Ned.

    Take care

    Hondo

  • OFD272
    OFD272 Member Posts: 5
    #7
    thank you all

    I will be going for a PET scan within the week.  The precursor for this clinical trial (which is at a Methodist hospital in Houston I believe) is that there has to be a tumor visible on the scan (so they can prove their treatment actually works).  As long as there are still remnants of a tumor I should have no problems being accepted to the trial considering my tumor was EBV positive.  My oncologist feels very strongly that this is the best way to go to avoid any future recurrences.  I appreciate all the kind thoughts and very helpful insights and advice; it has all been helpful for me in making this decision. 

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