From Stage Four Diagnosis to Patient Advocate
Melinda Bachini did not plan to become a patient advocate. She planned to keep working as a paramedic and raising her six children in Montana. But fourteen years ago, her life changed.
Today, she stands as a long-term survivor of cholangiocarcinoma, a rare cancer that starts in the bile ducts inside the liver. Her journey shows how clinical trials can offer hope when standard treatments fall short.
The Symptoms That Changed Everything
Melinda first noticed pain in her right shoulder. She also had pain in her upper stomach area and felt tired all the time. Doctors thought she might have gallstones. An ultrasound told a different story.
The scan showed a 13-by-9-centimeter tumor on her liver.
At first, doctors believed the tumor might be harmless. A biopsy proved it was cancer. Surgeons removed the tumor, and doctors confirmed it was intrahepatic cholangiocarcinoma.
Surgery offered the only chance for a cure. But three months later, a scan showed the cancer had spread to her lungs. Doctors labeled her a stage four terminal cancer patient. She was 41 years old with six children.
Searching for More Than Standard Treatment
Doctors offered palliative chemotherapy. That meant treatment to manage symptoms, not cure the disease.
Melinda asked for something more. She asked her doctor to look for clinical trials.
He found one. Her insurance refused to cover the standard medical costs tied to the trial. She could have paid the costs herself. She chose not to risk her family’s financial future.
She started chemotherapy instead. She received gemcitabine and cisplatin for six months. The side effects hit hard. The drugs caused fatigue, nausea, and other toxic effects. When doctors removed cisplatin due to toxicity, the cancer spread again. Another drug, Taxotere, also failed to stop the cancer.
After 18 months of treatment, Melinda faced a hard choice. Her quality of life had dropped. She stopped all treatment.
A Trial at the National Cancer Institute
While off treatment, Melinda found a clinical trial online. It used adoptive cell therapy, also called tumor-infiltrating lymphocyte therapy (TIL therapy). This treatment used the patient’s own immune cells to fight cancer.
The trial took place at the National Cancer Institute in Bethesda, Maryland. Because the institute receives federal funding, it covers medical costs and travel expenses. That removed a major barrier.
Melinda and her husband gathered her records and sent them to the NCI. After a required 30-day “washout period,” meaning she had to be off treatment for 30 days, she qualified.
How the Treatment Worked
The treatment started with surgery. Doctors removed tumors from her lungs. Scientists collected T cells from those tumors. T cells are immune cells that try to attack cancer.
Researchers grew those T cells in a lab until they reached billions. Doctors admitted Melinda to the hospital for three to four weeks.
During the first week, she received chemotherapy to wipe out her immune system. This step allowed the new T cells to grow without interference. Doctors then infused the lab-grown T cells back into her body.
She also received IL-2, a drug that helps T cells grow. IL-2 caused severe side effects. She gained twenty pounds of fluid overnight. Her lungs began to fill with fluid, so doctors stopped the drug after four doses.
Her blood counts dropped. She needed blood and platelet transfusions. Over time, her body recovered.
When she left the hospital, her chronic cough had disappeared. She felt stronger.
A Second Round and a Bigger Response
Melinda returned to Maryland every month for follow-up scans. She became the ninth patient in the trial and the first with cholangiocarcinoma. She was also the first to respond to the treatment.
After some time, the cancer began to grow again. Researchers had studied her T cells and found one that targeted a specific mutation in her tumor.
Doctors offered her a second treatment. This time, they infused three times as many targeted T cells.
The results were stronger. Her case appeared in the journal Science. News spread worldwide. Hundreds of cancer patients reached out to her. They did not ask for guarantees. They asked for hope.
Becoming a Patient Advocate
Melinda’s advocacy work began earlier, after her first insurance denial. She spoke at the Montana state Capitol. Lawmakers passed a rule requiring insurance companies in Montana to cover standard medical costs for cancer patients in clinical trials.
That moment showed her that sharing her story could change policy.
After her second treatment, she volunteered with the Cholangiocarcinoma Foundation. She moderated discussion boards and helped patients search for trials. She wanted them to know options existed.
She later joined research committees at national levels, including the National Cancer Institute’s Hepatobiliary Task Force and other advocacy panels. She brought the patient voice into research discussions.
Today, Melinda serves as Chief Patient Officer at the Cholangiocarcinoma Foundation. She works with patients and caregivers each day. She helps them find trials, understand treatment options, and navigate a complex diagnosis.
Why Clinical Trials Matter
Melinda believes clinical trials should be the first option, not a last resort.
Clinical trials offer access to new science. Patients receive close monitoring. For cancers without a cure, trials may extend life and improve outcomes for future patients.
She advises patients to create Plan A, Plan B, Plan C, and Plan D. Each trial has its own inclusion and exclusion criteria. Joining one trial may affect future options. Patients should discuss this with their doctors.
She also urges patients to ask clear questions:
Who is the main contact?
Who handles emergencies?
What costs does insurance cover?
Does coverage apply across state lines?
Clinical trial teams often include a principal investigator, research nurses, surgeons, and support staff. Patients should understand who manages each part of care.
A Message of Hope
Melinda entered the TIL trial with cancer in both lungs and her liver. Today, fourteen years later, she remains here to tell her story.
Researchers continue to study TIL therapy. The FDA has approved TIL treatment for melanoma. Trials for solid tumors continue. Scientists still seek answers about why it works for some patients and not others.
Melinda hopes researchers unlock that answer for everyone.
Her story shows that the immune system can fight back. Her story shows that advocacy can change laws. Her story shows that even after a stage-four diagnosis, new paths may still exist.
For anyone facing advanced cancer, her message stays clear: explore clinical trials early. Ask questions. Stay proactive. Hope may come from unexpected places.
Watch Melinda’s full story on the Blue Faery YouTube Channel.
