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Mu Sang - Patient Story

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As strong as I feel now, it’s amazing to know that less than three years ago I was told I only had less than six months to live

— Mu Sang

My home is in a bustling city not far from Shanghai, China. I first visited the United States in 2012, and although I enjoyed it and hoped to return some day, I never imagined that when I did, it would be as a cancer patient seeking a miracle.

In November 2014, right around the time I turned 40, I went for my annual checkup, and learned that I had early stage renal clear cell carcinoma. My left kidney was removed, however three months later they found that the cancer had spread to my lungs, liver, and bones. My doctor in China told me there was nothing to be done, and said I had only six months to live. I could not accept this. I wasn’t ready to give up.

With no standard therapies available I began looking for a clinical trial that might help. Enrolling in a clinical trial in China can be very difficult. Many factors including overpopulation, lack of knowledge of cutting edge trials, and long approval times inhibit patients from receiving the care they so desperately need. I knew my best chance of survival was to come to the United States.

Fortunately my cousin Derrick and his wife, who both work in pharmaceutical field and live in Princeton, New Jersey, researched options for me in the U.S. They found a trial managed by Elizabeth Plimack at Fox Chase Cancer Center that seemed promising. After further research Derrick determined that I needed to see Dr. Plimack.

Mu with his wife and his Fox Chase teamMu with his wife and his Fox Chase team

My first point of contact at Fox Chase was Johana Vanegas, who is the director of international patient access. Without her, I am certain that I would not be here today. She walked me through the entire process of enrollment, and once I arrived, made every effort to see that I was taken care of and comfortable.

Johana helped me in so many ways, beginning with ensuring that I was able to enter the United States. She personally wrote a letter to the Shanghai embassy to help me obtain my visa. She also oversaw all of my travel dates, transportation, housing, and billing. The only thing I had to focus on was getting well.

Language was another challenge, because I did not speak much English when I came to Philadelphia. Johana arranged for interpreters to accompany me to all my appointments. I am especially grateful for Ms. Xiaolei Chen, one of the Mandarin interpreters. She was with me during many of my appointments and she was very helpful. Her strong knowledge of medical terminology and professional skills helped make every appointment run smoothly.

When I arrived at Fox Chase in June 2015, I was near death. I had lost around 30 pounds and was anemic. Much too weak to begin the clinical trial, my first hurdle was to stabilize. Dr. Plimack and her team began by performing a thoracentesis to treat my aspirated lung. The next step was a blood transfusion. Scans revealed that part of my spine was fractured due to where my tumor had spread. In order to reduce the size of the tumor and prevent paralysis, I underwent nine radiation treatments at a local hospital in Princeton.

In August I was finally strong enough to begin the clinical trial. Dr. Plimack started me on Pembrolizumab, the immunotherapy drug she was testing in combination with the chemotherapy drug Axitinib.

For the next two years, I spent a lot of time at the Center. Every three weeks I came to Fox Chase and spent between three and 10 hours there. At every visit I had blood work, a physical exam, and a consultation with Dr. Plimack, followed by an infusion that lasted 30 minutes. Every six weeks I received a CT scan and every twelve weeks I received a bone scan. But time spent at the Center never bothered me. I had plenty to keep me occupied, from learning English to researching more about my disease. When I wasn’t at Fox Chase, I spent my time in Princeton, where I am living with Derrick.

In between my treatments I traveled home to China every time I had a chance. Making the 16-hour journey frequently was difficult, but it was worth it to see my wife and daughter. As a stage 4 cancer patient, time is the most valuable asset to me. I want to spend every minute I have with my family.

As my treatment progressed I felt myself getting stronger. I could feel the drug working. After more than two years of treatment, of living apart from my family, the end was nearly in sight. I went in for my last intravenous infusion treatment in July 2017. I then transitioned to taking pills to control my cancer as part of the trial.

My family flew from Shanghai to join me for my last infusion and to meet my team at Fox Chase. It was their first time in the U.S. While I was at the Center for treatments and appointments, far from home, the staff members became like a second family to me. So to have my wife and daughter meet Dr. Plimack and the rest of the team was a very special moment for me.

When I first met Dr. Plimack she said she couldn’t cure me, but she would do her best to relieve my pain and increase the quality of my life and extend my life. The goal was to get me back to my life and to my family, and she’s done just that.

With my final infusion treatment behind me, I am now in the midst of at least six months of observation to ensure the cancer is gone. In early 2018 I will finally be able to return home to my family permanently. But for now, while I remain in the U.S., each time I walk through the doors of Fox Chase will be like coming home.

 

 

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