Never Lose Hope!

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

I had head and neck cancer in 2012 (Stage IV SCC, HPV+ left tonsil and nodes along with soft palate) for which I had chemo-radiation. Then in 2015, I was diagnosed with lung cancer (SCC HPV+ again), for which I had full chemo-radiation a second time. In 2016, it started to bloom again in both lungs. I was offered a clinical trial at UCLA, where I was treated for lung cancer, but my gut told me a trial offered at The Angeles Clinic would have better odds for success (plus I liked the doctor better). This specific trial is combo immunotherapy, Opdivo plus a second agent (IDO inhibitor).

I had a PET around a month ago just to rule out cancer causing some abdominal pain I've been having. It was... all clear! After about 9 months of a combo immunotherapy trial, I'm now cancer free. This is an amazing result--recurrent lung SCC is incurable with a short life expectancy. Since this is such a new treatment, no one knows how long it will last, but I'm grateful for every bit of time I can get.

They just published prelim results for the trial. The trial worked for 23% of the patients (an improvement over Opdivo alone, which is around 15%), with 6 partial responses (cancer was stable or shrank) and 1 complete response... me. 

It's worth being your own advocate and doing your own research. There are also groups that can help sort through clinical trials with you, because it can be confusing. The thing to remember is that medical facilities only usually tell you about what they offer. So a small regional clinic will say they have few or no treatments, a larger hospital will say they have only certain trials, and unless you look, you will never know if different, better options are out there. If I hadn't done my own research, I might be dead right now.

And don't give up hope! We're making big strides forward all the time. We're getting really close to the point where cancer becomes a manageable disease, like diabetes. Reach out for help if you hear the word "incurable" because I'm living proof that it isn't always the end of the road.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    very good news

    Laralyn,

    That was music to my ears.  I am glad you have had success, after all, that is the results we all wish to have and to hear.

    I wish you continued good fortune.

    Matt

  • HelenBack
    HelenBack Member Posts: 87 Member
    #3
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    Wonderful!!!!!

    Laralyn, I was just wondering about you. So glad to hear of your success! You are sharing really great info for those who may find themselves on a similar, frightening journey. 

    Thank You,

    Helen

     

  • swopoe
    swopoe Member Posts: 492
    #4
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    Amazing! Best wishes for you

    Amazing! Best wishes for you always!

  • psychedoutca
    psychedoutca Member Posts: 16
    edited June 2017 #5
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    wonderful!!

    Thank you Laralyn! I really need to hear positive outcomes from clinical trials. My husband starts one on Tuesday, I hope he passes all the preliminary tests so that he can enter this trial. We are nearing the end of the journey but have a bit of fight left. I want him to have as much time as possible, hearing your story renews some faith and hope! 

  • caregiver wife
    caregiver wife Member Posts: 234
    #6
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    Thinking of you often

    Laralyn,  

    As I recall, you had responded when my husband had recurrence with mets to lung and doctor was discussing Keytruda.  I, too, am a "be your own advocate" person.  I really appreciated your input. Long story short, doctor used a chemo cocktail, keeping Ketruda as the "ace up the sleeve".  Husband has been NED for several weeks now.

    This goes to the "Never give up hope".  He had a Keytruda (not Optiva) patient who had done treatment for over two years and was now off treatment and NED.  The long term results of these trials are truly astounding.  I find your new treatment option even more  so.

    I am truly wishing you the VERY best,

    Crystal

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited June 2017 #7
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    Our "A" student....

    so to speak....top of the class!  This is so happily incredible and amazing!! I've told everybody in my family about you....and when they haven't heard me say anything for a while, they ask about you.

    p 

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #8
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    Great news and thanks for the

    Great news and thanks for the encourgement. Bill

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