Anaplasic Astrocytoma Clinical Trials

H0829 Member Posts: 4

Looking to hear about any experience with clinical trials and specifically anything applicable to Anaplastic Astrocytoma.  My husband was diagnosed recently and after radiation + temador and 4 cycles of temador the MRI this week shows progression.  We did our radiation at Mayo for Proton Beam but have now been getting treatment locally at Duke.  Mayo says maybe stay with temador but Duke says no and go with Lomustine or find clinical trial.  Feels overwhelming as results not really posted and am now reading for first time about so many different things I never heard about.  Of course, you cannot take good ole time to make decision either.



  • kurtgrabow
    kurtgrabow Member Posts: 3

    my wife completed resection, radation and chemotherapy for aa two years ago and has been cancer free since then... temodor was the chemo and seemed to have worked so far....

  • kat96
    kat96 Member Posts: 4
    edited June 2019 #3
    I was misdiagnosed in my

    I was misdiagnosed in my hometown of roanoke, Va in August of 1996.  After surgery, I was told that I had a grade I-II, very slow-growing, tumor ("the best of a bad situation")I found my way to Duke the following March after my local surgeon suggested I have surgery again.  After getting 2nd opinions from UVa, MCV, and Duke, who also got another opinion from MD Anderson, it was determined that I actually had a grade III AA.  Within a week I had my port and had started chemo.  Since I was fresh out of graduate school when I was diagnosed, I had not started a job and did not have my own insurance yet.  Furthermore, since I was no longer a full-time student, I was not covered under my parents insurance either.  So, I enrolled in Medicaid, and Duke used grant money to cover the costs of my treatment.  Most of my treatments were clinical trials...4 different chemos, monoclonal antibodies, hyperbaric oxygen treatment.  the only thing that wasn't a clinical trial was the external beam radiation. I have been cancer-free for at least 15 years.  I do have some physical and visual deficits, but I am alive and have 2 healthy kids (which they told me not to have)!  Don't be afraid of clinical trials!  I know Duke is doing remarkable things, especially with using the polio virus to fight BTs.  You are lucky to live local to Duke!