First scan on clinical trial

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

I had HPV+ SCC in my left tonsil and soft palate in 2012 and got the all clear after chemo-radiation. In 2015, they found a mass in my right lung. I went through chemo-radiation again. They weren't sure if it was a new primary lung cancer or a metastasis of the head and neck cancer--especially since it was HPV+ SCC again. I got a second all clear on the first PET scan, but the second showed new nodules and lesions sprouting up in both lungs. At that point (recurrence after first line treatment), it's generally considered incurable.

I went into an immunotherapy clinical trial with two drugs: Opdivo (anti-PD1 antibody) and epacadostat (ID01 inhibitor). I've had three treatments, with a two week period off after the first treatment when I had a bunch of side effects including a bad, all-body rash. A CT scan was inconclusive because fluid was accumulating and blocking view of the main lesion they're tracking for the study. It was my first scan since July so I was honestly relieved that it didn't show huge progression--the doctor said what they could see looked stable, and she ordered a PET scan for the following day so they could assess the lesion required for the trial.

On the PET scan, two lymph nodes show active cancer--one slightly smaller than the previous scan, and one slightly larger. There was a month between that comparison scan and when I started treatment, so it's not clear whether that small amount of growth happened before or during treatments. Other than those two nodes, all of the cancer is gone--all of the nodules and lesions, in both lungs!

My spouse and I are stunned and amazed. I still have active cancer and Opdivo doesn't usually work forever... but to have this result after only three treatments is really encouraging. I wanted to share the good news as a ray of hope to anyone else in my situation--explore your clinical trial options, even if you have to travel a bit to receive treatment!

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  • Kenny-
    Kenny- Member Posts: 99 Member
    edited October 2016 #2
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    Wow!

    Laralyn,

    I'm very happy for you. I know you've been sharing a lot about immunotherapy. Personally I'm a believer that's the ultimate cure if we can find one.

    Hang in there, I'm not sure if the side effects is as bad as chemo but the news is really encouraging! thanks for sharing.

  • MJG1
    MJG1 Member Posts: 137 Member
    #3
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    Laralyn

    I am sorry to hear you're having to go through this, but happy to hear that you're getting some good results.  I'll say prayers that you are cured completely!!

    Margi Greene

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited October 2016 #4
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    Wow

    Hi Laralyn,      Lisa here.

    Been following all your posts since I to had left tonsil, possible small area below on the tongue.  Stage 3, SCC & HPV 16+.  No Lymph glands so no surgery just the nasty concendesed 7 week Rad/Chemo Cocktail Combo.  A true **** !!!!!  Did have a slight scare with new nodules in upper right lung.  Immediately went to my Fablous Lung Dr Due to your Posts.   She cares.  CT  with dye showed it was new.  So she did get approval for an early PET Scan.  All good, NED entire body.  Ok so this is my deal.  8 1/2 months from diagnosis.  6 months out of treatment.  8 full scopes from great ENT (found the cancer),  4 CTs with dye, 2 full PET Scans, 24 hr at home Urine Collection, so many blood tests I call them Vampires.  All NED, HPV 16+ in Remission.  I lost 40 Pounds since my allergy test for sinuses showed Major off the charts reaction to a Dairy, Eggs, Soy, Almond, &  Oranges.  So thruout my life I have been poisoning my body with good food.....I thought.  Had stomach problems since 15 yrs old.  So I refused empty calories just to put on weight.  Even through my feeding tube.  My tastebuds are so intense that no way can I eat sugar. Oh, sooooooo sweet and gunk in my mouth.  Have a Fantastic New Dentist, so knowledged.  Does laser to help my tongue so I can eat so much more.  Starting to produce saliva.  No drugs now what so ever. Happy, Positive, a healthier than I have ever been.  Just turned 59 and you name, I did abuse to my body.  Stress is a killer for sure.  I have become a test rat.  Now looking for a Excellent Dietition to direct me to gain weigh healthy. Have understood from the start....I have Cancer with a Nasty Virus.  Good now, but reoccure tomorrow, a month from now, years, who knows.  What I do know, One Day at a Time works, accept the fact you have Cancer and don't freak and waste your life worrying It will come back.  If It does, can't change that fact......deal with it, use the tools you have learned, stay Positive and move on. You have been a big influence for me throughout My Journey and so extremely happy for your new results.  Thank you for the outstanding info.  Helped me more than you know.  Knowledge is a Power.   Together Warriors, kicked some butt, thank you.  Hugs, Lisa

  • armana
    armana Member Posts: 97 Member
    edited October 2016 #5
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    Congradts

    LaraLyn,

    I am so happy you have good news. I'll keep praying for a total NED by the time you get your next Pet Scan.

    Please keep us posted.

  • MrsBD
    MrsBD Member Posts: 615 Member
    #6
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    Awesome!

    Disappearing tumors sends a truly positive message from your body. That's wonderful news and I will pray it will be a permanent cure for you. You've been such an inspiration to me with your positive attitude and willingness to be at the forefront of new treatments. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    sounds good

    Hi Laralyn,

    It is good to hear of your promising results.  I wish you continued good results.  Does your treatment follow a definitive timeline like traditional treatments?  Just wondered.

    Best of luck,

    Matt

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