Stivarga Trial (regorafenib)
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Hi Emaline,
Welcome to our community and thank you for letting us know your experiences with two trials. You got a good long run with Stivarga – I hope your next trial gives you the same or better.
While the trials beat back or stabilize the cancer for many participants, at the same time they help advance the science to the benefit of all of us. Please keep us posted as you start a new round of treatment.
I hope you have had a chance to look at the resources posted on the Cholangiocarcinoma Foundation website for patients and caregivers. There is information on trials available on this website.
Take care, regards, Mary
I was in a trial testing Stivarga for other cancer types as it is currently on the market for colo-intestinal types. You had to have a certain mutation to be in the trial and I did. The first cycle was at full strength (4 pills a day) and the second cycle was at 75% strength (3 pills a day). It did a great job and shrank my primary tumor from greater than 13 x 8.9 centimeters to 8 x 7.1 centimers and also shrank the metastatic tumors some. However, it is almost debilitating at that strength as it affects the hands, feet, and mouth. But I stayed on it at 50% strength for 10 more cycles with continued mild shrinkage before the cancer started winning again. The last good scan showed the primary tumor at 7.7 x 3.9 centimeters and it was a lymph node that kicked me out of the trial.
I just did 2 cycles of PEN-866 but that was a bust for me. Might work for someone else though. I am now waiting to see where I can be a guinea pig next.
P.S. Diagnosis was in March of 2017 and I did two cycles of the gem/cis. Everything grew. I started the Stivarga trial in June of 2017 and failed out in May of 2018.
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