Melinda Bachini

Melinda Bachini, a 15-year cholangiocarcinoma survivor, highlights the life-saving potential of clinical trials and advocates for increased access and participation.

In April 2012, I walked into the National Cancer Institute (NCI) as patient 3737. While not being called by my name may be impersonal, this number was a lifeline. It represented my place in a clinical trial — my last chance after standard treatments had failed. Fifteen years later, I am still here, enjoying my life as a mother, wife, grandmother and patient advocate.

I am alive today because I believe that we all need to contribute to scientific advancements. I wasn’t really taking a chance; I was doing what I believed was the logical next step in the face of this insurmountable challenge.

Cholangiocarcinoma, or bile duct cancer, is a brutal disease. It is often discovered only when it’s stage 4, and treatments are difficult to provide effectively. By the time I was diagnosed, the tumor in my liver was so large that it covered the right lobe. Initial surgery gave me a little precious time, but the cancer spread to my lungs, and chemotherapy was not proving to be a long-term solution.

By 2012, my tumors were growing aggressively, and I could barely climb a few stairs without becoming breathless. It was during one sleepless night after paying medical bills that my online search led me to a clinical trial for “tumor-infiltrating lymphocyte therapy” led by Dr. Steven Rosenberg and his team at NCI. I applied—what did I have to lose?

The process was daunting, but the cancer was worse. It involved sequencing my tumor to find immune cells that could attack the cancer. Those cells were extracted, multiplied in a lab, and reinfused into my body. The treatment was cutting-edge and not yet proven for cholangiocarcinoma. I was willing to try. For six months, my tumors shrank. For the next six, they stayed stable.

That clinical trial didn’t just give me time — it gave me back my life.

My story brings hope, but it also highlights a difficult truth: too few patients participate in clinical trials. Only 5% to 7% of adult patients with cancer enroll in trials despite their potential to transform lives. For many, the barriers appear steep: lack of understanding, geographic limitations, fear of the unknown and financial concerns. Even more troubling are the myths that persist that trials are a “last resort” or that they treat patients as “guinea pigs.” These misconceptions cost lives.

Clinical trials are not just about testing treatments — they are about answering complex questions that accelerate progress. They are essential for discovering cures and improving the quality of care for all patients. Trials like the one I participated in not only advanced science but also created a treatment blueprint that paved the way for saving others.

But still, systemic inequities further limit access. Patients from underrepresented communities are disproportionately excluded from trials due to logistical, cultural, and socioeconomic barriers. The result? These patients are missing access to many treatment options, and we miss critical data to address disparities and develop better treatments for everyone.

At the Cholangiocarcinoma Foundation, where I am now Chief Patient Officer, we aim to debunk myths and help eliminate trial participation obstacles.

We believe in the power of advocacy and education. Patients and caregivers should be empowered to explore trials and be provided equitable access. Likewise, healthcare providers should be educated on clinical trials and provide these options to patients. Policymakers, researchers and industry should emphasize urgency — from expanding geographic reach to offering financial support, we need bold action to make trials more accessible.

My journey from patient 3737 to survivor to advocate is a testament to what’s possible when patients and scientists work together. Patients aren’t just getting access to potentially effective treatments; they are leading the way in groundbreaking discoveries.

As we mark Cholangiocarcinoma Awareness Month this February, I urge every reader — whether you’re a patient with cancer, a caregiver or just interested in the future of healthcare — to learn more about clinical trials. Join us in challenging the myths and ensuring every patient has access.

Because no one should ever be just a number. And because every number has the potential to become a story of survival, like mine.

This story was written and submitted by Melinda Bachini. The article reflects the views of Melinda Bachini and not of CURE. This is also not supposed to be intended as medical advice.

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Articles

Clinical trials play a crucial role in advancing cancer treatment, as exemplified by a cholangiocarcinoma patient's survival story. Despite their potential, only a small percentage of cancer patients participate in trials due to barriers like misconceptions, geographic limitations, and financial concerns. Systemic inequities further restrict access for underrepresented communities. Advocacy and education are essential to debunk myths and improve trial participation. Empowering patients and healthcare providers, along with policy changes, can enhance access to trials, leading to better treatment options and outcomes for all patients.

Melinda Bachini is the Chief Patient Officer at the Cholangiocarcinoma Foundation and a 15-year survivor of cholangiocarcinoma.

From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials

Karen Driskill, M.S., RN, is an exceptional leader and is passionate about increasing cholangiocarcinoma (bile duct cancer) awareness as a nurse and caregiver. 

Although she has always been driven to excel, Karen’s purpose became more focused after her mother-in-law passed away from intrahepatic cholangiocarcinoma in 2010. She earned advanced degrees as an inpatient oncology nurse and heightened her knowledge and expertise of cholangiocarcinoma by becoming certified in hospice and palliative care. 

 in 2012 as a research advocate and has most recently served as co-chair for the foundation’s Nursing Advisory Board.

She has rendered compassionate service with a notable balance between scientific rigor and empathy. This is exemplified by her contribution to the Clinical Nursing Practice Guidelines for patients with cholangiocarcinoma. She was vital to achieving the goal of advancing the scientific knowledge of the symptom experience and quality of life of patients detailed in the following documents:

Care of the patient with external biliary drains and internal bile duct stents

Care of the patient with intractable nausea and vomiting

Care of the patient on weekly gemcitabine and cisplatin

Care of the patient receiving photon radiation

Care of the patient receiving protons on a clinical trial

Karen is more than deserving of the Extraordinary Healer® Award. Not only is she dedicated to nursing, but she also is a loving mother and wife. She makes every individual around her a better person.

For more news on cancer updates, research and education, don’t forget to s

Although she has always been driven to excel, Karen Driskill's, M.S., RN, purpose became more focused after her mother-in-law passed away from intrahepatic cholangiocarcinoma in 2010. 

Melinda Bachini

From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials

Balancing Scientific Rigor With Empathy in Cancer Care

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