How Clinical Trials Can Lead to Life-Saving Treatment: The TAPUR Trial and a Patient’s Experience

October 12, 2023
Claudia Passarini

Claudia Passarini was born in Bogotá, Colombia, in 1965. She moved to Venezuela at an early age with her family, where she lived until 2011. Then, she moved with her husband, Jose Nunes, and her 2 children, Veronica and Ricardo, to Florida in the United States to find better opportunities. She has worked all of her life as an administrative manager and as a property manager. Her greatest happiness has always been to spend time with her wonderful and numerous family members.

“We no longer see cancer on your computerized tomography (CT) scan.” With this sentence, I took a breath for the first time in a long time.

When I was first diagnosed with breast cancer in 2012, I was treated with chemotherapy and a total mastectomy at a hospital in Fort Lauderdale, Florida. I had a complete response and lived without cancer until 2018.

After my second diagnosis, of stage 3 recurrent breast cancer, I received 2 types of chemotherapy for a year at another clinic in Florida. Finally, I received an experimental treatment that did not work.

The cancer spread and became stage 4 with metastases in my skin, arm, and bones. At this point, my oncologist at the time let us know that there was nothing else they could do, and we should accept that my cancer had won the battle. By June of 2019, I had been battling with my cancer recurrence for a year, and I was taking many medications for pain. The cancer continued to grow. I started having aggressive lesions on my skin, and my arm hurt so much it was affecting my mobility.

Finding the right cancer treatment for me through a clinical trial

During the course of my illness, I received so much support from family members and other wonderful people. I especially appreciated the support of my younger brother, Leonardo, who never gave up and continued looking for other treatment options.

In one of his searches, he found a webpage that listed various experimental treatments for my type of breast cancer, which is HER2-positive. He made a list of the clinics offering treatments, and we started visiting them one by one.

The third clinic that we visited was a research hospital in Miami where we met my research team. From the first moment, they took care of me with so much empathy and professionalism. They took new biopsies right away and, this time, did genetic tests for my cancer that had not been done before.

When I received the results of these lab tests, they gave me the option to join a clinical trial called the Targeted Agent & Profiling Utilization Registry (TAPUR). TAPUR is a clinical trial run by the American Society of Clinical Oncology (ASCO). It is for people who no longer have any standard treatment options available and whose cancer has specific genetic variations. As part of the TAPUR study, I received immunotherapy medications created specifically for the biomarkers of my type of cancer. You could say it is a type of personalized medicine targeting the genes of your cancer, which means that each person who receives this treatment will get a different mix of medications to attack the disease.

The research hospital I receive treatment at has renowned oncologists, and what we liked the most about them was their focus on new research and their knowledge of what is new in the world of cancer medicine.

So, with a lot of fear, but supported by the great doctors and specialists, I decided to start treatment.

Receiving life-saving treatment

The doctors let me know that when a new treatment is started, it is normal to feel worse during the first few weeks, and after, to get better, which is what happened to me. During the first few weeks, it felt like everything was getting worse. I couldn’t help but think that the treatment wasn’t going to work and that it was too late for me.

But then, the miracle that we had been hoping for happened. My CT scans began to look better every month. My skin started to heal, and the wounds began to close. Little by little, I could start to move my arm, walk without assistance, return to work, and take back my life.

After a few months, they let me know that my CT scan came back without any sign of cancer and that I had a complete response. After so much anguish and one negative response after another, I remember our excitement and, above all, our relief.

Immunotherapy treatment has been very different from chemotherapy. It has allowed me to live a normal life, without the strong side effects that chemotherapy caused for me. To this day, I continue receiving treatment through the TAPUR study. Now, I receive an infusion once a month and get a CT scan every 3 months. I have been in the study for 4 years and after a complete response, I continue to go for preventive treatment.

Thanks to this treatment, I was able to see the graduation of my 2 children, travel with them, see my daughter get married and become pregnant, and spend time with my husband, parents, and family. The TAPUR clinical trial has been the biggest miracle of our lives. I am so grateful to God, my family, and all the specialists who have given me back my life and have treated me with love and joy. They are an amazing team that changes lives every day.

Accessing immunotherapy treatment through TAPUR has been the answer to our prayers, and there are no words that can describe the eternal gratefulness that I feel. I hope that more people find out about this treatment and can trust their oncologists to try experimental treatments if their options run out. Miracles do exist, and my life today is proof of a miracle.

The author has no relevant relationships to disclose.

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