2 Responses

  1. barb c
    barb c March 22, 2015 at 9:12 pm | | Reply

    Dr. Jess,

    Thank you for your explanation: i am humbled that, as a 10-year er and trauma nurse and mother of a recently diagnosed 22-yo with stage 4 ACC, it still was way over my head. I have had a crash course in endocrinology and oncology over the last 6 months, finding that the more I find out, the less I really know. Additionally, I find that our healthcare team, although we have found some willing, compassionate and progressive providers, are limited in their understanding of the Cushing’s component of ACC and how Tristan’s need for hydrocortisone varies with the stress of treatment, etc. Also, although palliative care has its place, we, Tristan and his family, want to agressively pursue treatment at present; at least until convinced of futility or if the risk/benefit changes significantly. Our surgeon has said that his role ended with metastasis. My trauma medical director agrees tat there are no surgical options. We have had IPT with vinorelbine and etoposide, as identified by chemosensitivity testing, and now he is finishing a 21 day course of etoposide orally, starting mitotane in a couple days to potentiate and repeat CT abd thereafter before changing/adding cisplatin prn. Tristan is feeling and looking better than he has in a couple years and, because he is so young, i think that his chances are optimized. As a pediatric oncologist, I wondered on your take and if we could perhaps consult you formally or otherwise. As you know, better than anyone, practitioners fluent in this cancer’s particulars are few and far between. Of the four oncologists whom we have seen in Las Vegas, at UCLA and in Reno (with over 70 years experience between them), none have had an ACC pt. Thank you for your advocacy, information and any contact you are comfortable having with us. Barb C

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