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Post by Tony Crispino on Mar 19, 2017 8:06:21 GMT -8
Looking for cancer survivors that have been offered a randomized clinical trial. I need your thoughts on the experience of deciding to or not to be a part of it. Doesn't matter the site of origin of the cancer. When I went through the initial phases of being diagnosed with an advanced cancer, I was offered and ultimately declined a clinical trial after surgery showed that they didn't get all the cancer. My reasoning was that the trial did not allow me to take on follow up radiation. I would have been randomized to either to watch and wait until progression versus hormonal therapy or chemotherapy or both. I decided to take on HT and radiation and forego chemo. It worked. But the experience of being asked to join a clinical trial was surreal. I was shaking in my shoes. I will be authoring an article for a major publication with my buddy Rick Bangs on the patient experience being in or declining an RCT or CT. If you've been there, your input is valuable to me. Both Rick and I are very excited to have been approached by an MD Anderson surgeon/professor to do this article. But we both want to do it right. Our target audience are oncologists.
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w4ne
New Member
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Post by w4ne on May 16, 2017 17:43:40 GMT -8
Tony - My user name is w4ne, but if I had known better, it would be simply Ted (a lot easier). Just found and joined the forum trying to keep up with developments in SWOG S1216. I was initially diagnosed in early December 2016 when the Urologist was looking for a problem with my bladder and discovered stage 4 prostate cancer. After having done all the right things doctors tell you - getting PSA and digital exams for years (levels a 1-1.5) and then after having my last recommeded PSA test at age 75, I skipped the next year (as recommended) but still had the digital exam in Feb 2016 at age 76, then at Thanksgiving in 2016 my bladder shut down and bang - there it was - everywhere - lungs, shoulder, hips, pelvic area, but luckly not my brain, yet. (My daughters said that if I started acting normally, then they would know it was there too.) I was assigned to Dr. Robert Siegel at Bon Secours St. Francis Cancer Center in Greenville SC and after my 1st visit in Jan 2017 I was offered a chance to participate in S1216. I jumped at the chance, still in a state of shock. I'm taking Lupron and a drug called TAK-700. How can I help and what do you need to know. Use my email if possible. Regards,
ted
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Post by Tony Crispino on May 18, 2017 16:13:00 GMT -8
Thank you for writing me. I will send an EM to you.
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