• Nothing left but clinical trial

    Asked by gonewest on Thursday, January 7, 2016

    Nothing left but clinical trial

    I had my second opinion yesterday at City of Hope with Dr. Pal. Signed paperwork for clinical trial.

    ClinicalTrials.gov Number: NCT02589717

    Principal Investigator: Sumanta Pal, MD
    Sponsor: Industrial

    Title: An Open-Label, Multicenter, Expanded Access Program for MPDL3280A in Patients with PD-L1-Positive Localy Advanced or Metastatic Urothelial Bladder Cancer After Failure with Platinum-Containing chemotherapy.

    I have to qualify genetically. In the meantime, UCLA doctors petitioning insurance to pay for nivolumab on compassionate use grounds.

    Let's hope this happens. They have nothing else for me. Statistically I have three months or so before the metastatic cancer starts shutting down my organ systems. I love you all. Chris

    24 Answers from the Community

    24 answers
    • GregP_WN's Avatar
      GregP_WN

      Sorry for this prognosis, although, don't lose all hope, there are others on the site that were in similar circumstances that started a trial and it turned them around. We certainly hope you're one of those! Our best to you, please keep us updated as you start the treatments.

      over 5 years ago
    • CAS1's Avatar
      CAS1

      I have my hope prayers for you. This is ground breaking treatment . This could open the door for others as well. Thank you for doing a clinical trial. I pray you qualify.

      over 5 years ago
    • angeldancer's Avatar
      angeldancer

      I just prayed for you. I pray that they allow you into the clinical trial and it turns you around for complete healing. I pray the insurance becomes compassionate because that is just the right thing to do. I pray for you and your family that the peace flows through you and around you all.

      over 5 years ago
    • Ejourneys' Avatar
      Ejourneys

      Adding my prayers and keeping fingers and toes crossed. Adding my thanks, too. (((Hugs)))

      over 5 years ago
    • jhale17's Avatar
      jhale17

      I am holding good thoughts for you Chris. I am hopping you respond well to this clinical trial and congratulate you for volunteering. You are about to become a pathfinder to a new cure for all of us. Thank you.

      over 5 years ago
    • Carool's Avatar
      Carool

      Chris, thinking of you and hoping, hoping, hoping that you will qualify for the trial and that it will prove beneficial - greatly! I know you will let us know how you're doing. Hugs and love from Manhattan (I'm typing this in my office rather than on my cell phone at home in Brooklyn) - Carol

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      Clinical trials could be great and better than chemo as it works on fixing the problem rather than killing everything in site. ALSO keep on eating GREEN and Taking good supplements. Detox if you can.

      over 5 years ago
    • SandiA's Avatar
      SandiA

      Hi, sending lots of prayers and hugs your way. I made it on a clinical trial for nivolumab and it has been a positive experience. Lots of prayers coming your way. Sandi

      over 5 years ago
    • Sue_2015's Avatar
      Sue_2015

      Please prove those 3-month "Statistics" wrong Chris and believe that you have years to live!

      Hopefully, this will be THE clinical trial that works for you and will be a positive, beneficial experience.

      Sending lots of hugs and healing thoughts and prayers to you!

      over 5 years ago
    • BigE54's Avatar
      BigE54

      You will be in my thoughts and I fervently hope that you not only qualify for the trial, but that it brings you the successful treatment that you are looking for. Give those 3 months a good kick in the rear!

      over 5 years ago
    • Nanajudy's Avatar
      Nanajudy

      Stay strong....prayers go out to you.

      over 5 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Fingers crossed -- may you get into that trial and may it knock that cancer completely outta your body. Good thoughts winging your way!

      over 5 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am sorry ... but when I was given that choice 2.5 years ago, it ended up being the best thing that's ever happened to me since being diagnosed with cancer. That's when I started getting Opdivo. Praying for the same results for you!! Big hugs.

      over 5 years ago
    • BoiseB's Avatar
      BoiseB

      Gone West I will place your name on the prayer board. My prayer group is beginning a 10 day intensive prayer for Cancer patients.

      over 5 years ago
    • AnnyKay's Avatar
      AnnyKay

      I was in clinical trial for lung cancer Nivolumab (Opdivo), was a life saver for me. Drug now approved by FDA. Receive it every 2 weeks and I am on my 19th month. Pray that you qualify and it works for you.

      over 5 years ago
    • gonewest's Avatar
      gonewest

      @Greg. Thanks. People here inspire me every day. I love them. They are the most courageous people I have ever known. Love to you and Donna.
      @CAS1. I know how you've advocated for clinical trials. It is much appreciated. This will be my second one (if I am accepted ). The first one eradicated my bladder cancer with gemcitibine mopup. Love.
      @angeldancer. You're lovely. Thank you for your hopes and prayers. Love.
      @Ejourneys. Your posts are always inspiring. Love to you and your partner.
      @jhale17. You know I love your media posts. This will be my second clinical trial. If, by participating in a clinical trial, cancer can mean something that brings good information that helps others my cancer will not be in vain. Love.
      @Carool. My friend, I love you dearly. Thank you.
      @barry.I absolutely agree. Thanks for reminding me to take care of myself. Love to you.
      @Sandi. So glad the nivolumab is doing its job for you. Thanks for your heartfelt post and the hugs and prayers. Love.
      @Sue2015. I really hope so. Thank you so much for the hugs, healing vibes and prayers. Love to you.
      @BigE54. Going to do everything to prove an exception to the stats! Love.
      @Nanajudy. Absolutely! Love and thanks for your prayers.
      @BuckeyeShelby. Thanks! Love.
      @Livewiithcancer. You are an inspiration for us all the time. You doing that dog agility, you advocating for the rest of us (like ejourneys does too) is fabulous and appreciated. May your outcome be enduring. Love.
      @BoiseB. I was hoping you would as you are so kind to those of us here. Power up! Love to you, and your prayer group.
      @AnnyKay. That's what I need to hear! Thank you. Love.

      over 5 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Hi there California girl. I joined the WhatNext site just about the same time you came onboard and for the past two years I have read the many times you have reached out to help others in the community. I am saddened by the latest medical news you are sharing and am keeping my fingers crossed that you qualify for this clinical trial. Know if you do, you will surprise. Sending a hug, and wishing you better days.

      over 5 years ago
    • geekling's Avatar
      geekling

      Are you tired, Chris?

      You dont seem tired in that you take time to address each person directly. Im glad for you that the doctors have one more option as well as a possible way to support you as, for example, they do with Livewith.

      10,000 times or more we remind each other that stats are past tense items which can be skewed and manipulated to mean almost anything. It is preferrable that you do not allow nonsense to overtake you.

      Miracles happen every day. You can partake of your share should you wish it. Nutrition is key. It will rasie up your attitude. why not blend up some greens and a fruit to start this morning when will awaken? It will only allow you to feel better. Stuff enough fresh greens in side of you and, with right tools, it is possible your body can begin to turn this thing around. Faith. Production. Change.

      What do you like to to, gonewest? Are you able to try a small baby step goal of being able to do it again?

      BTW, I arrived in San Jose, not Costa Rica, yesterday to be of assistance to a friend. I am amazed, humbled, grateful, excited that I am strong enough to attempt this. I hope to be up to the task. A phenominal diet, movement, and a functioning brain to move this body around is what I ask. Dare I also ask to enjoy it all?

      Sure. :) Why not?

      Blessings

      over 5 years ago
    • jhale17's Avatar
      jhale17

      Geekling has a point in “…stats are past tense.” In a television interview DR De Vita said that “Current survivor rates are always five years old because it takes that long to collect the data.” I paraphrase one of his other comment – If your doctor says he cannot help you get another doctor. My take on this is you have to verify your doctor is working to the very latest data.

      Chris you said your doctor IS consulting with a specialist. Sounds like you are in good hands.

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      Geekling has good advice. Every year ALL are cells turn over into 2 new cells. Make them healthy a then the two new ones are healthier and on an on it can go. Over four years or so your cells become VERY strong and resistant. If people did this at an early age many less people would have health problems of any kind. Our body constantly rebuilds itself....and we have control over that.

      over 5 years ago
    • timetoshare's Avatar
      timetoshare

      I pray you will be able to do the trial. You mentioned people here being courageous and inspiring! I am sure everyone on this board agrees; YOU are courageous, inspiring, and loving.

      over 5 years ago
    • judyinflorida's Avatar
      judyinflorida

      I hope and feel that something good will be coming your way soon. At the end of next week I may have more information about some other trials that might offer some possibilities. I'll let you know. In the meantime I'll be crossing my fingers (and every other part of my body that I can still cross) that you hear some positive news and experience some positive results. You surely do deserve it.

      over 5 years ago
    • gonewest's Avatar
      gonewest

      @Lynne-I-Am. Thanks, Lynne. Love and hugs back at ya.
      @geekling. Tired, yeah I am. But everybody here supporting me deserves a reply as I am so grateful for the support, and as long as I can, I'll do that. Yes, enjoy San Jose. Good for you to help your friend. Love to you.
      @jhale17. All of my doctors are specialists at a couple of the best hospitals in the US. (UCLA and City of Hope). Both are NCI centers. I really am grateful beyond words they took me on. Stats are stats. The one variable is me. Pushing like mad for anti PDL1. Love.
      @barry. You're right again. Keep being brave. Love.
      @timeto share. You are so sweet to say that. Love to you.
      @judyinflorida. You deserve good news too Judy. I love your spirit and drive. Love. Chris

      over 5 years ago
    • Carool's Avatar
      Carool

      Chris, we're all hoping and looking forward to hearing good news: that you qualify genetically, to start with. Thinking of you and sending you an encompassing hug. Love, Carol

      over 5 years ago

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