NED after diagnosis from Stage 4 Extensive SCLC on Nov 11 2016

Hello Everyone

As of March 13 2017 all my tumors in the left lung, three sections in my liver in my lymph nodes and one spot in my spine are gone. I just had my 6 month Brain MRI and it was clear again. I am now on a three month CT scanning my first one is June of 2017. I was in a double blind first line treatment for immunotherapy drug. I got a bag and half then I had a severe allergic reaction and was remove and unmask from the trial. I had 4 rounds of Carboplatin and Etoposide beginning Dec 27 2016 and ending on March 2 2017. I was given a dismal outcome and even though I know my type of lung cancer responds well to chemo my oncologist and researchers are amazed at how fast and quick my tumors started to disappear. By February of 2017 most has resolved which I had written about here.

I honestly believe we as humans are all different. And everyone responds differently to chemo and targeted drug therapy along with immunotherapy . I believe the little bit of the immunotherapy drug I received made all the difference and reprogram the cancer cells. I maybe wrong, or it is just a plain miracle.

There are over 2000 and a few in this trial. I spoke to one woman who had the same reaction as I did. Her researchers kept her in the trial and premediated her the third time and slowed the intake of the infusion. She is having remarkable reduction in her tumors.

The drug I believe made all the difference was Tecentriq (Ayezolizumab).

Now I am also a realist and know I have a vicious disease, and this could come back. My Doctor has agreed to do a full genomic testing panel and see if I have any of the markers that maybe we could target with another immune therapy drug. He has agreed to do a liquid biopsy as well. The death rate and side effects or preventive either one out weighs it for me at this time. If it does come back we will look at targeted radiation and Gamma Knife for the brain.

I just wanted to share my good news. I wanted to give folks hope. I am still scared and still know my odds of beating this is not good, but I refuse to let it kill me. I said that from day one.

So I will update you on after June 19th. My first three month CT scan will be June 15th and I meet with the oncologist on the 19th. I still need your support and prayers as all of you need mine.

Kym

14 Replies

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  • Thank you for sharing this wonderful news. I think you may be on to something that pretreatment with an immunotherapy drug alters the cancer cells and makes them more vulnerable. Let's hope so. You are giving many people hope with your news.

    Prayers for continued good news.

    Jean

  • Kym,

    Thanks for sharing your good news. I'm sending all my best hopes for a durable response. Now go out there and LIVE YOUR LIFE!

    Hugs, Anita

  • Hi kym,

    Great news!, I too have sslc as you know it's so great to hear you are having success with your treatment .

    May we have much more good news to come!!!!!!!!!!! Prayers and hopes for continued healing.

    RW

  • Thank you Kym. Your experience will bring hope to new patients who come here for answers.

    Your idea, the one about your immune system being retrained, has a great deal of merit. I send hope that this holds true and you enjoy a long, productive and happy life.

  • This is great news, Kym! Thank you for sharing with us and hoping for continued good response.

  • Kym,

    Wow. Thank you for sharing the good news, that is just wonderful. I LOVE your attitude, you have such a lovely spirit. Will be praying for you and holding you in my thoughts - looking forward to your news in June. Blessings.

  • I am so happy for you. Yes please keep us updated!

  • Congrats on this terrific news! Thank you for sharing your hopeful story.

  • Great news! Praying for continued good health🙏🏻

  • Hi Kym, My goodness but you've been through so much! Keep up your spirits, I know thats not always easy, I have carcinoid lung cancer, my middle lobe was removed in 2014. Since then I was in and out of remission. .Please let us know the results of your upcoming scan. We will pray for you to cope with all that you have been, and are going through.

  • Good luck, sounds like your Drs. Are working hard for you.

  • I too have or had SCLC. Limited ,had those 2 chemos and radiation at the same time 3 days on and 19 days off 33 days radiation also pic radiation of the brain. .I had a lot of days of hydration ,It was a long hard road. I still get cat scans every 3 months than changed to 6 months It has been a little over 4 years since end of treatment,so there is hope.I am proof

  • That is amazing news! Congratulations. I am very curious about this drug -- it seems that when immunotherapies work, it is extraordinary.

    All the best!

    Jeffrey

  • I am ned right now but I want to try immunotherapy if I have to get more treatment it seems to be something new they need to find a cure for this nightmare!!!!!!!!!!!!!

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