First Visit to MD Anderson
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First Visit to MD Anderson

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  • Post
    • March 30, 2017 at 2:31 pm
    RitysMom
    Participant

    I am with my daughter and son-in-law in Houston. She had her first appointment on Monday with Dr. Tawbi. He was wonderful, very thorough, and answered most questions before they were even asked. He suggested two options for Kristine: a) join a clinical trial at MDA; b) begin ipi/nivo at home (Alabama). His preference was the clinical trial due to the toxicity of ipi/nivo, but knows it would be quite an inconvenience to come to Houston every three weeks. Before any decision can be made, however, he wanted to see what's going on in her brain. She had an MRI yesterday, and we meet with him today for the results. One question we didn't ask and he didn't clarify is what would happen if brain mets have returned. Does that limit her options?

    Thank you,

    Cindy

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      • March 30, 2017 at 4:37 pm
      BrianP
      Participant

      Cindy,

      Brain mets can make it harder to qualify for some trials.  Some may say patient must have brain mets treated before trial enrollement.  Some may say something like, "patient may have no more than 3 brain mets and none bigger than 1 cm" or something to that nature.  There is an active ipi/nivo trial right now for patients with brain mets.  I think brain mets used to be more of an automatic disqualifier but as they find more and more that immunotherapy can be effective on reaching brain mets they are not as much of a disqualifier as they used to be (IMHO).

      Brian

      P.S. I see Dr. Tawbi as well.  I think he's great also but sometimes I wonder if he's a little biased toward MDA trials.  Not sure if that's a fair assessment or not but just a feeling I got.  What trials is he suggesting?

        • March 30, 2017 at 4:58 pm
        RitysMom
        Participant

        Thanks for the info, Brian. I don't recall him mentioning a specific name of a trial. He said there were three he was thinking of, but wanted the MRI first. He did say something about nivo injections with an oral drug…supposedly with less severe side effects as ipi/nivo. He also said we'd still have ipi/nivo as an option in the future should she not respond to the trial. 

        • March 30, 2017 at 7:52 pm
        BrianP
        Participant

        I'm a big fan of trials Cindy. My philosophy on Trials is they are not always the easiest to get into so when you qualify and the opportunity exist and the trial seems promising then I lean toward going for it. Like Dr Tawbi said you can always try ipi/nivo later. He may be talking about a nivo/epacadstat (a IDO inhibiter). That's a good trial if so. 

        Brian

        • March 30, 2017 at 10:22 pm
        RitysMom
        Participant

        Her brain was clear! Whew! The trial is pembro/azacitidine. I'm gonna see what I can find out about it. She can't start for four weeks cuz she needs to stop the taf/mek combo.

        • March 30, 2017 at 11:47 pm
        TexMelanomex
        Participant

        Awesome news!! As an MD Anderson patient myself I'm a huge fan of their program. Glad she, and you, got clear results! WIN!

        • March 31, 2017 at 4:19 am
        RitysMom
        Participant

        Thanks, Tex! We've been super impressed with everything here!

        • March 31, 2017 at 12:35 am
        BrianP
        Participant

        Great news Cindy! 

        Looks like azacitidine is a chemo drug.  Maybe someone here will have some background into it.  It I was looking at a trial I'd want to know what phase trial it was.  If it's a phase II or III I'd want to know what the results were for the previous phase. 

        • March 31, 2017 at 4:18 am
        RitysMom
        Participant

        Good to know, Brian…it is a phase 2 trial, so we will check into that.

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