Diane Sarver

March 2025

Update to In Her Own Words, dated December 2017. Read 2017’s here.

I recently found something I hadn’t seen in a few years: many volumes of paperwork from all the clinical trials I’ve participated in since diagnosis with stage IV ovarian cancer in 2010. Each time I experienced a relapse, I became involved with a different trial, and wow, there were 4!

The first was the Phase 1 angiogenesis inhibitor testing oral BIBF. I was followed for several years, but because it was a double-blind study, I never learned if I received the study drug or placebo. The second was the Phase 1 vaccine trial at Seattle Cancer Care Alliance, which tested the immune response to the IGFBP target. The third was the single agent Doxil, given at a higher dose than would be given for standard-of-care treatment.

The fourth and the most important trial to me was the Phase 1B at MD Anderson Cancer Center in Houston, Texas, where I tested Olaparib plus an mTOR inhibitor taken orally twice daily. These drugs had never been taken in combination; only Olaparib had recently received FDA approval, and the Mtor was investigational. The results were surprising; within 7 weeks of starting the trial, my abnormal results, both by serology (labs) and imaging, had normalized. Because I live in Oregon and the trial required constant monitoring for the first 5 weeks, I needed a leave of absence from work, and the team at MD Anderson helped me to find short-term housing nearby. The trial had no finite period described, and there were no side effects or lack of efficacy for me, which would have indicated a reason to cease. I stayed on the protocol for 8 years, and during the entire time, I had no evidence of disease and was termed an “unusual responder”! At the end of 8 years, I decided to stop the trial because there was a small risk of developing a hematologic disorder, and none of the clinicians knew if the extended time would induce a cumulative risk. It has been 2 years since ending the therapy, and at every quarterly check, I still show no evidence of disease.

Needless to say, I am a grateful recipient of novel clinical research by brilliant and dedicated physicians, none of which would be possible without governmental grants and a considerable measure of philanthropy. The current uncertainty regarding policy, as the NIH would cap reimbursement for indirect costs incurred in research, could spell a halt to many areas of development, not just for cancer, but for Alzheimer’s, heart disease, Parkinson’s, and many others. “Indirect costs” include, for example, those needed for building maintenance, funding of technicians and statisticians to do the work, purchase, and care of lab mice, and funding for maintaining records and compliance, etc. Part of my advocacy work will now include writing letters to leaders in government so that the research we patients depend upon will have at least a hopeful chance of continuing.