Back on track

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  • November 7, 2014 at 7:07 pm #85368
    gavin
    Moderator

    Thanks for the update Duke. Hope that you manage to find your way through all of the info that you got and hope that you get onto the trial if that’s what you decide to do. Good luck with everything and I know that if anyone can find their way through a maze of info it is you!

    My best to you,

    Gavin

    November 7, 2014 at 11:41 am #85367
    dukenukem
    Member

    If I get the pills, will I have to take them at the trial clinic or can I take them at home or my local clinic?

    Since the FoundationOne report singled out the trametinib rather than the other two, if they don’t prescribe that I’m walking out.

    The other two trials are expected to complete in April-June 2015, so I’m not sure of the benefit of such a short trial.

    Duke

    November 7, 2014 at 5:05 am #85366
    marions
    Moderator

    Duke…..briefly glanced at the clinical trial. It is randomized (physician cannot determine which group you will belong to.) Xeloda (pill) or 5F-U (intravenous) vs. Trametinib (pill form) Under the new ruling (Obamacare) insurance companies must cover the cost of clinical trials. Question is: will your carrier agree that this particular trial is what is needed?)
    Hugs,
    Marion

    November 6, 2014 at 11:22 pm #85365
    lainy
    Spectator

    Duke thank you for the good update, all sounds pretty good except for the Insurance. If there is something new coming around the corner, you are the one who can find it. I guess one thing a patient can find out with CC is that it is not boring!!! Keep up your feeling ok with your chemo, Have you had snow yet? It is so gorgeous here! Packer’s play again on Sunday but I will be at Forever Plaid! Thinking about you all the time.

    November 6, 2014 at 9:31 pm #10722
    dukenukem
    Member

    Results came back from FoundationOne. There are no FDA approved therapies for the genome alterations detected (IDH1 R132L, NRAS G12C, and CDKN2A/B loss) that I have but there appears to be a good clinical Phase 2 trial (NCT02042443) with multiple treatment centers in Columbus, OH (3-4 hours away) which is recruiting. Haven’t checked to see if I meet the requirements yet, but I’m hopeful.

    Finally got back on track with chemo. My last round was completed 9/17. Had a normal week off, missed a treatment because I went to Mayo to see Dr. Alberts. Missed another week because the local center had no appointments. Finally got a Day 1 reduced dose carbo/gem on 10/16, two days after I had a lymph node removed for genome testing. Missed two successive Day 8 attempts because of low platelets (50 & 58). Platelets ok today (116) and restarted as a Day 1. Onc scheduled a CT scan for Nov. 20, regardless of whether or not I get a Day 8 next week. She wants to check on possible tumor growth. If it is growing, she wants to get me into the trial right away.

    Options are good, but they require decisions. Be careful what you ask for, you might get it.

    All in all a great day. Restarted chemo and have technical info on going forward.

    Now I need to find my way through the Obamacare mine field for next year to make sure all my physicians are covered by the same policy. Going out of network is $$$.

    ☮
    Duke

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