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Sep 16, 2016 · [New Feature on Connect] My Groups in Just Want to Talk

This looks like a good start.
But I don’t see the ovarian cancer grouo that I thought had been started.
I dont appear to be following any groups, and yet somehow I get emails anyway.
Nor do I know why I was signed up for this….

May 19, 2015 · Webinar: What Women Need to Know about Ovarian Cancer in Gynecologic Cancers

What about the PPAACA provision saying that genetic counseling & testing must be covered for high-risk women? 

May 19, 2015 · Webinar: What Women Need to Know about Ovarian Cancer in Gynecologic Cancers

Please understand : I am the patient who got Avastin, along with and after Frontline treatment,  which is not SOC. I am now in the SOLO2 trial. My mother participated in a trial of carboplatin & olaparib for treatment of recurrence,  including measurement of the pharmacokinetics of their interaction, in an attempt to determine which to administer first. My experiences with my own clinical trials have been positive aside from unexpected costs. However, my experiences with my mother’s clinical trial were vastly different and often quite negative.  Part of the problem seemed to be that nobody cared for her as a person, but rather as patient # whatever. But please don’t tell patients that clinical trials will be “at no additional cost”; it’s just not true. 

May 12, 2015 · Webinar: What Women Need to Know about Ovarian Cancer in Gynecologic Cancers

Dr. Weroha: participating in clinical trials DOES cost patients $$. Insurance doesn’t pay for the trial drug, true, but it may have to pay for the administration of it – even if it’s not SOC. And so patients end up paying the copay for the admin. of the drug. I paid over $110 every 3 weeks for the admin. of Avastin for a trial, plus $30 for each checkup required every 6 weeks, plus parking fees and gas etc., for 22 cycles! My mother participated in a trial at NIH and although they arranged her plane flights, they didn’t provide a place to stay, when she had to be near Bethesda, MD for about 3 days every month. Hotels in the area start at $200/night!