Take the Time to Consider Your Options

Rachel Santmyer-Flores

• Not willing to accept standard treatment
• Joins a clinical trial for PEGPH20
• Living with stage IV cancer

I was diagnosed on May 14, 2015 with stage IV pancreatic cancer, with metastasis to the liver, at age 40.

My daughter Lily had just turned two a month prior. I had been experiencing symptoms like jaundice and dark urine. When my doctor saw tumors on a CT scan, I was immediately scheduled for an endoscopic retrograde cholangiopancreatography (ERCP). I had a biopsy and a stent was placed in my biliary duct, and my tumor marker numbers quickly returned to normal levels, to the surprise of my doctors.

A pancreatic cancer diagnosis is paralyzing to say the least. I experienced an indescribable numbness; I was angry, then extremely sad. I just couldn’t understand how this could happen to me at 40 years old, when I had been healthy my whole life and lived so healthily.

Choosing a Treatment

The first oncologist I met with recommended treatment with FOLFIRINOX. Luckily, my family was with me. They felt this treatment option was unacceptable. I met with two more oncologists; they didn’t have anything more to offer than the first oncologist.

While we were researching oncologists I visited a naturopathic doctor in Sedona, Arizona, who prescribed several vitamins and supplements. Her advice was to keep my body and immune system as strong as possible. I’m still on her suggested vitamins today.

In the days after my diagnosis, my sister-in-law contacted PanCAN and an information packet was sent out. In that packet I found MY “glimmer of hope.” I came across Dr. Darren Sigal‘s name in that packet, and he was listed as a “pancreatic specialist” at Scripps Clinic/MD Anderson in La Jolla, California. I knew right then that he was going to be my doctor. I had never met him, but dammit, I wanted a specialist. I met with him soon after, and the sun began to shine again. He was the ONLY one that offered me hope, in the form of two clinical trial possibilities that I might qualify for. I ended up qualifying for Halozyme’s PEGPH20 trial.

Life on a Clinical Trial

On August 4, 2015 I began on phase II of the PEGPH20 study. The regimen is three weeks of receiving PEGPH20 along with Gemzar and Abraxane, and one week off. I have a CT scan every eight weeks to check the status of my tumors.

As of autumn 2017 I am still on this study and it appears that my liver is clear of any lesions. My blood work each week continues to be excellent and my general health is great! I have been called a “super responder” by my doctors and it feels so great to hear that.

I have experienced some side effects—cramping due to the study drug and neuropathy from the Abraxane and, of course, fatigue. But I have tolerated these side effects pretty well, considering I’ve been on this treatment for nearly two and one-half years. It hasn’t been a cakewalk, but this treatment is working and I am healing! I have been given a better quality of life than I ever thought possible with a disease like pancreatic cancer.

Results like mine just go to show how important it is to seek out clinical trials. I didn’t think I’d live to see the end of 2015 and here I am getting ready for Halloween and the holiday season of 2017. My daughter is almost five!

My advice to those newly diagnosed, and to their families, is be aggressive! Be vigilant! Seek several doctors’ opinions, consider ALL options before jumping into treatment. Take the time to do this. Be certain in your decisions. Your life may depend on it.

Update: On November 14, 2017 I found out that I am in REMISSION!

Rachel passed away seven years after her pancreatic cancer diagnosis. As a participant in a clinical trial she did her best to advance the science and to raise her daughter. We offer our deepest condolences to her family