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    Lirasgirl33 shared an experience

    Clinical Trial (BMN 673 + Irinotecan): 5/7/15- Today I started a new clinical trial at UCLA. It is called a Parp Inhibitor trial.

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    • NanaL's Avatar
      NanaL

      Best wishes for few side effects and good results!! Hang in there!!

      3 days ago
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    Lirasgirl33 shared an experience

    Radiation (External radiation ): 4/2015- Had 4 weeks of radiation to my collarbone & neck. I also had 5 treatments of radiation to my spine (T9) to ease pain caused by another tumor. Radiation was successful, both tumors shrunk significantly and the pain went away. Yay! :)

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    Lirasgirl33 shared an experience

    Oh No (clinical trial drug (MEDI 4736) stopped working): 3/2015- Was taken off the trial. After a few months of things being "stable
    ", too much growth started to happen.

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    Lirasgirl33 shared a photo

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    5/25/15- So.....a lot has happened since my last journal entry. As I continued on the immunotherapy trial (MEDI4736) at UCLA, things that had previously been "stable", started showing signs of growth. A small tumor on a lymph node near my collarbone and neck started growing a lot more (no pain thankfully). I also started experiencing mid-back pain that seemed to radiate to the front left side of my belly near my bellybutton. I started taking pain meds on a daily basis. It turns out that a small tumor on my T9 vertebrae was getting bigger, in turn pushing on nerves and causing me pain. I continued on the trial but at the same time started radiation to get the collarbone tumor under control and to also ease the pain from the tumor on the T9.

    So radiation was a bit harsh, not going to lie, it sucked, BUT it made the pain go away, so there's my silver lining. :) Radiation was hard because I had to lay on my back, and my back hurt from laying down, so I had to load up on pain killers before treatment. I was even hospitalized for a few days because my first dose of radiation to the T9 caused inflammation and I experienced a lot of chest pain due to it. They ran all kinds of tests and everything was ok, heart, lungs, etc. It was just inflammation. I was able to finish radiation, and the tumors shrunk. I seriously did feel like a rotisserie chicken. Radiation to my collarbone/neck, wearing the dreaded plastic mesh mask, then I'd turn over (face down) so they could radiate my back. I am so thankful to God for getting me through all of that.

    I met up with my regular oncologist and along with advice from my UCLA trial oncologist, they decided to take me off the trial. My UCLA doctor advised me there was another trial starting, which I qualified for. As of May, I started a new clinical trial at UCLA. This trial is studying the effects of a new drug/pill called "BMN 673" when taken in combination with chemotherapy drugs. In my case I will be given the chemotherapy drug Irinotecan. BMN 673 is designed to block a protein called Poly (ADP-Ribose) Polymerase (PARP). This protein may help tumor cells survive and grow by helping to fix their genetic material and therefore avoiding their death. By blocking this protein the growth of the tumor may be stopped or the tumor may shrink. This is the result we're hoping for. I had my second dose of the Irinotecan this past Thursday. I go in for chemo every two weeks, and I take the BMN 673 pills every single day. I also met up with an oncologist at USC and they will be doing a genome-sequencing test which will hopefully tell us more about my particular type of cancer and treatments that might be more successful at getting rid of it.

    I am just thankful I'm still here. Aside from all the cancer "stuff", in the past few months I celebrated my mother's 58th birthday, celebrated Valentine's Day, went to watch the Chinese New Year Parade, celebrated my sister's 33rd birthday, watched my kids sing in an LA Opera production of Noah's Flood, took my daughter and little sister to watch one of our favorite bands at Troubadour in Hollywood. I also had fun exploring the city during Spring Break with my kids, celebrated Easter with friends and family, went on our first trip to the beach this year, watched the flowers bloom in our garden, went on our first picnic this year, celebrated Earth Day with the kids and got to meet some of the cast from one of our favorite shows, went away for the weekend on a pre-Mother's Day trip to Santa Barbara with my mom, and celebrated my little sister's 18th birthday. These are the moments I cherish, the memories made, the laughter, the smiles, all the little moments that fuel me to continue to do whatever it is I need to do to extend my time here on earth with my family. God willing.

    I continue to be hopeful and trust in God to get me through, as he always has. Praying for good results, and trying to be patient. I'm very thankful that there are options available. Each day I'm here is a blessing. Thank you God for each and every single day you give me. <3 Love and hugs to everyone going through this cancer.

    5 Comments
    • rosey's Avatar
      rosey

      So good to hear from you, I'm so disappointed your trial failed but am thankful for your new options as you continue to fight this incideous beast. It brought me to tears reading your words as you shared all your experiences with your family and friends. You truly are filled with gratitude and have a beautiful loving spirit. Thanks for checking in. You'll be in my prayers. Rosey :-)

      3 days ago
    • NanaL's Avatar
      NanaL

      You are the most beautiful, caring, bravest person I know! You have been through so much, yet your faith and determination remain so strong. I have been thinking about you and wondering how you've been doing. I'm so glad you are done with radiation and it helped your pain. I pray this new clinical trial has a better outcome. So happy you've been able to spend quality time with your family. Your fight is awe-inspiring!! I'm currently in a clinical trial, TAS 102. I'm just completing my 2nd round. I will be scanned in mid July after I complete my 3rd round. I hope you can continue to make wonderful memories with your friends and family. Keeping you in prayer and sending Big hugs from Illinois!!!

      3 days ago
    • cam32505's Avatar
      cam32505

      Thank you for participating in the trials. You are helping others. I hope something works for you too!

      3 days ago
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    rosey wrote on Lirasgirl33's wall

    I'm just checking on you, haven't seen you post in a while, hugs rosey