Shelby Barry, a clinical trial specialist here at PRA, lost her older sister Shannon, 32, on April 11 to Glioblastoma. Shannon fought for nine years and was enrolled in several clinical trials throughout her journey. One of the clinical trials she participated in was a PRA trial. During her time on the study, Shelby experienced the patient perspective from the other side — as more than just one of our colleagues in the CRO industry. Here, she shares her family’s story:
Tell us a little about your sister, and about her journey with Glioblastoma.
My older sister, Shannon, was first diagnosed with brain cancer in 2010. She was just 23, in her 3rd year of teaching, married with a two year old.
I was with my sister when she got the news initially as my brother-in-law was out of town. I remember sitting in the office while the doctor told us she had a tumor but it was small – if two golf balls wide could be considered small. We were both young and in shock. We didn’t ask the doctor a single question.
We were lucky to have a referral into Duke where she met with a team of doctors and had the Grade 2 brain tumor resected. We were hopeful the journey would end there. We received the news that the tumor had returned and advanced to Grade 3 in December of 2014. We were able to celebrate Christmas and a quick trip to Disney World before she went in for another surgery and began six weeks of daily radiation and chemotherapy followed by nine months of chemotherapy.
When the tumor returned a third time in March 2017, we decided as a family that a clinical trial was our best option. It was then that she was assigned a subject number and randomized into her first clinical trial. The study she enrolled into was an open label study so we were aware that she was on the control arm and continued with standard of care – chemotherapy for another 9 months. We met with study coordinators, signed Informed Consent Forms and notified the team of adverse events. She was taken off the chemotherapy after nine months of no growth and we were realistic in knowing the likelihood of our journey continuing was high.
In July of 2018, the tumor returned as Grade 4 Glioblastoma. The news was a devastating blow to our family and especially her now 11-year-old son. We made the decision to once again enroll into a clinical trial. This one was a little more experimental and risky. We were at the point in our journey where we were clinging to any hope we could find, knowing the reality of a Glioblastoma diagnosis. All signs pointed to this clinical trial working in the first few months until we received news that the tumor had spread and was now in a thin line around her brain stem in November 2018. We continued searching for trials she may be eligible for and started chemotherapy.
Unfortunately, we received news in March that there was nothing more the doctors could do and my sister would need to be placed in hospice care for the final leg of her journey. She passed peacefully on a beautiful spring day in April surrounded by family.
What types of trials was she involved in? How did she feel about them? What would you like our colleagues to know about your sister’s experience with clinical trials?
Throughout this journey, clinical trials were always in discussion. With my dad and I both in the CRO industry, we were well aware of the different options and were able to navigate the ClinicalTrials.gov website and review the informed consent forms and break down what everything meant for my sister. She was often nervous before beginning a trial but trusted that her medical support team would do what was best for her.
The first trial she participated in was a Phase 3 trial for anaplastic astrocytoma. It was open label and we were aware (and a bit disappointed) when she randomized into the control arm and received standard of care. We continued with the study because we knew how important this data could be to the sponsor.
The second trial she was enrolled in was a Phase 2 trial to determine efficacy and safety of a treatment in patients with recurrent malignant brain tumors. We knew the Phase 2 trial had a historical 20% chance of survival past two years but that was better than the glioblastoma rate of 2% with optimal treatment. The GBM survival rate hasn’t changed much since the 1980s despite significant advances in medicine. My sister was very hopeful during each trial. She developed great relationships with the study coordinators and felt that relationship was an integral part in her treatment journey.
You’ve said the experience was eye-opening to be on the other side of a clinical study – what did you observe and experience?
It was very interesting to go to a study visit with my sister. I was able to observe the informed consent process from the subject’s view and listened as my sister was informed of potential risks. I was able to see her report adverse events and observe the interaction she had with the study coordinator. It is also eye-opening to know that she has an assigned subject number, is in EDC and CTMS systems and her subject binder was monitored by CRAs. It gave me a new appreciation for the work I was doing when I was entering subjects, reviewing ICFs and asking sites to enter data.
Behind each of the subjects in our system is someone’s loved one, someone who is looking for a little bit of hope, someone who may be fighting to survive or fighting for a better way of life.
What is your hope for other patients and families?
I often take for granted how available clinical trials seem and how normal they seem to me. I see clinical trials as a very realistic option when standard of care fails but many people are unaware of the options available or are very nervous to join a trial for the uncertainty involved.
I found that even with experience with clinical trials, the ClinicalTrials.gov website was difficult to navigate unless you had a specific NCT number or keyword you were searching for. I also think that patients sometimes are unaware of the trials that are available to them. While we were lucky that my sister was able to be treated at her preferred location, we explored options at other institutions. I don’t think all patients are aware of options outside of what their specific location is offering. I think it is important to bring awareness to the clinical trials industry and the availability of trials around the country.
Behind each of the subjects in our system is someone’s loved one; someone who is looking for a little bit of hope
Anything else you’d like to add?
Clinical trials are more than 1572s, queries and database locks. Those things are all irrelevant to the patients in the trial – and it’s these patients that are the most important stakeholder in the clinical development ecosystem. Research is possible without CROs, CRAs and CEOs but it’s impossible without patients. But to patients clinical trials are a source of hope that their tomorrow will be better than their today – and in many cases they’re the only source of hope they have.