• Accessing Clinical Trials

    Asked by Steph579 on Monday, June 10, 2013

    Accessing Clinical Trials

    It has been over a month since we found out my mom had Stage IV cancer, and 3 weeks since it was diagnosed as BRAF + melanoma. We would like to seek treatment through clinical trials and have submitted her records to both NIH and John Hopkins and are now waiting to hear ANYTHING back from them. She has not started any other treatments through her primary oncologist because she does not negate the chances of being accepted for a clinical trial. Has anyone else had similar experiences in waiting for clinical trial? How long should we expect to wait before hearing back from a clinical trial?

    We are very concerned we are wasting valuable time by not starting treatments.

    3 Answers from the Community

    • Tracy's Avatar

      I am just answering to let you know that I had Stage 4 cancer in the 1970's that was very far advanced before it was found. I did not know at the time but I was in a clinical trial of the same treatment that is now the standard treatment. Yes push for answers but do not panic. Keep asking but always be nice about it, the loudest voices get answers, but the nicer voices get the nicer answers. It seems to take forever to get things done when really they may be getting all the paperwork in order. I send good thoughts, Tracy

      over 3 years ago
    • melanomamama's Avatar

      I'm so sorry to hear about your mother. Fasten your seatbelts for a bumpy ride. Here's a truth to keep in mind about clinical trials. You can be offered one, and then flunk out before you even get in because you don't meet their criteria for some picky reason, such as the wrong numbers on a blood test. I was diagnosed with Stage IV melanoma 5 years ago, and fiddled around waiting for answers about two clinical trials before I threw up my hands and asked for standard treatment, which, at that time, was the harsh interleukin-2. I'm still here after combinations of IL-2, 5 surgeries, 2 radiations, and a course of ipilimumab (Yervoy.) I've flunked out of even more clinical trials along the way, so I'm glad that standard treatment, though hideously harsh in the case of IL-2, has worked for me so far. My quality of life is pretty good in spite of 2 brain surgeries this year! My cancer has appeared inactive in my most recent scans. I tell my story in my book, Melanoma Mama: On Life, Death, and Tent Camping. You can read the first two chapters for free on my website, melanomamama.com, or on Amazon. Give your mom a big hug from all of us on this site. We're here to cheer her on.
      By the way, it has been my own oncologists, both melanoma researchers, who have offered me the clinical trials which I couldn't get into. But they've pulled rabbits out of hats for me over and over, and, thanks to them, I'm still alive. They are Dr. Brendan Curti at Providence in Portland, Oregon, and Dr. Marc Ernstoff at Dartmouth-Hitchcock in Lebanon, NH.
      Constance Emerson Crooker

      over 3 years ago
    • SueRae1's Avatar

      The trials should have a contact number for a specific person to call or e-mail. Find out what it is and contact them directly.

      over 3 years ago

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