Update on clinical trial

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1

I had HPV+ SCC in my left tonsil and soft palate in 2012, which never returned after chemo-radiation. I ended up with lung cancer in 2015, though, also HPV+ SCC, and I was again treated with chemo-radiation. At the 6-month PET scan, the cancer was blooming again in my right pleura, several lymph nodes, and even just starting on the left lung (which had no cancer originally). At that point it's considered incurable.

I went into an immunotherapy clinical trial in August of 2016. It combines Opdivo (nivolumab, an anti-PD1 antibody) with the novel agent epacadostat (an IDO inhibitor). I'm not only in the group of patients who responded to the combination, but I seem to be in the "complete response" category. As of my last CT a month ago, I'm either cancer-free or pretty close to it. My oncologist said the response rate for this combination trial is higher than for Opdivo alone, but even so probably less than 50%, so I consider myself very lucky. It could come back any time (the cancer could mutate) but I now have more time and I'm spending that time feeling relatively good with lower side effects than I would have with chemo.

If you end up in a similar situation, ask your doctor about clinical trials. Do your own research and be willing to travel for one. This trial literally saved my life and there are new developments and trials every day. Don't lose hope! :-)

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited March 2017 #2
    update

    Laralyn,

    That is an update which makes my week.  And to reach that goal using different methods says a lot for immunotherapy in conjunction with traditional or not.

    Enjoy life, you deserve it.

    Matt

  • Grandmax4
    Grandmax4 Member Posts: 723
    edited March 2017 #3
    Laralyn

    I'm so happy for you

  • HelenBack
    HelenBack Member Posts: 87 Member
    #4
    Great News!

    I've been wondering about you and I'm so glad to read such an update! Keep on with the good fight!

    Helen

     

  • corleone
    corleone Member Posts: 312 Member
    edited March 2017 #5
    Awesome news!

    Thank you very much for posted the update, and I am really thrilled this worked out so well!

     

    Just curious, did they (research team) mention any possible interaction between epacadostat (IDO inhibitor you received) and COX-2 inhibitors (like aspirin), that is also known to inhibit IDO? I mean if aspirin and such were considered prohibited concomitant medication.

  • armana
    armana Member Posts: 97 Member
    #6
    Great News

    That is such great news.

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Can you see the

    gleam of white from my teeth?  That's how big my smile is!!!  WHOO HOO Laralyn!  Damn, this has been a long row to hoe for you....you're an amazing woman. I'm delighted for you. If I was not so old I'd click my heels together. 

    P

  • bebo12249
    bebo12249 Member Posts: 181 Member
    edited March 2017 #8
    Glad you're doing well and

    Glad you're doing well and congratulations. And thanks for the information..

  • Laralyn
    Laralyn Member Posts: 532
    #9
    "Just curious, did they

    "Just curious, did they (research team) mention any possible interaction between epacadostat (IDO inhibitor you received) and COX-2 inhibitors (like aspirin), that is also known to inhibit IDO? I mean if aspirin and such were considered prohibited concomitant medication."

    Not specifically. I was told to take Tylenol for any aches or fever, so that may be because aspirin would affect the IDO or it might be for other reasons.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #10
    awesome!

    That is just incredibly good news! For you and others who will benefit from the new treatments in the pipeline. So trilled for you. It's been one hell of a trip. Yipee!

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited April 2017 #11
    Amazed

    Oh, thrilled for you.  Been watching you posts.  Gave Me hope.

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