Update
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Update

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  • Post
    • May 31, 2018 at 9:28 pm
    Julie in SoCal
    Participant

    Hi there friends,

    Just want to update you on my plans. Tues. I had scans and saw the Rock Star Onc Doc.  And the good news is that my scans are clear; there's no funk, no nothing, completely unremarkable.  I love it. This was the best news yet.

    When I talked with the Rock Star, I asked him about trials that have an intertumoral injection.  We talked about them for a bit.  Surprisingly, I might qualify even with NSCLung Cancer, but RS Doc didn't want to hit me with anymore PD-1s at this point in time.  I had some pretty severe joint pain (ok it nearly crippled me) and I'm just now recovering (second new knee is coming next month!!), so this made sense to me. 

    So the plan is to together with RS Doc talk with a surgeon and see about if ultrasound could help identify all of the hiding Mel babies in my arm.  And see if we could just cut them out.  This also makes sense to me.  If there not in my arm they are not having babies and sending those babies on a journey to my lungs or liver or… But we're just talking  and thinking thorough options.

    I haven't talked ILP with the Rock Star.  So far all my mets have been in my arm, so theoretically this makes sense to me.  But it seems rough and the poor arm has lymphadema and I can't imagine it would be happy going through ILP.  Thoughts? I'm just talking out loud at this point.

    Thanks for listening, friends!

    Peace!

    Julie

    (still not a robot)

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  • Replies
      • May 31, 2018 at 11:19 pm
      Bubbles
      Participant

      Hey Julie!!  I LOVE funk-less scans!!!  I think you are dealing with the best case scenario….a good conversation with your doc about all your options…keeping them all on the table…but pushing the ones best for you at this moment to the top of the list.  Surgery with close observation sounds like a good plan for you at the moment.  I don't blame you for putting ILP a bit lower on the totem just now, given your circumstances!  Hang in there and keep us posted!!  Yours, celeste

      • June 1, 2018 at 1:00 am
      Lucas
      Participant

      Is radiation an option? 

        • June 1, 2018 at 1:58 am
        Julie in SoCal
        Participant

        That's a great question Lucas. It's an option, but as far as I understand, radiation would work better with PD-1.  Without it, radiation isn't much help.  

        But it's a good idea to add to the pile.

        Thanks Lucas!

        Julie

         

        • June 1, 2018 at 2:20 am
        Lucas
        Participant

        I saw an onc live video about isolated areas that aren’t responding to pd 1. The oncologist said surgery or radiation. I also have crippling joint paint. I take 5mg daily prednisone to be able to function. I’m sure you’ll find you’re breakthrough soon! 

        • June 1, 2018 at 3:37 am
        Julie in SoCal
        Participant

        This is good to know Lucas.  

        5mg prednisone is just the ticket for me too.

        As much as I hate the thought of doing radiation again… I'll talk with the Rock Star.

        Thanks again!

      • June 1, 2018 at 2:20 am
      Lucas
      Participant

      Is radiation an option? 

      • June 1, 2018 at 11:24 am
      Tracyyy
      Participant

      Hi Julie! Hooray for the clear scans! Are you BRAF positive? Sorry if that question has already been asked. Good luck!!!

        • June 1, 2018 at 5:34 pm
        Julie in SoCal
        Participant

        Hey Tracyyy,

        Yes I am BRAF positive. So the BRAF+ drugs are an option.

        My thinking here has been since I have such a small tumor burden (literally a split pea sized tumor) to save the BRAF+ as the big guns for later.  I'm not sure why I think this, other than it's a good feeling to have a treatment in my back pocket.

        Peace,

        Julie

        • June 2, 2018 at 8:14 pm
        Tracyyy
        Participant
        Hi Julie,
        Mum also has low tumor burden – a pelvic lymph node and few satellite lesions in the lymph channels and she is on the BRAF combo. We do not have many options in my country so I am glad she got into this trial. She is also having infusions and might be getting a new immunotherapy drug (pdr001) but we do not know as the trial is double blinded. Hope the drugs will work their miracle, we will see next week when she is having the first scans after starting them in the end of March.
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