Survivor Stories
August 2, 2016 • 3 Min

Currently in the Fight, at Memorial Sloan Kettering Cancer Center


In shades of light brown, beige, and white, stalks of grasses against a tan background

m4tik – 128 db; Flickr

  • Non-operable tumor
  • Treatment with FOLFIRINOX
  • Targeted radiation is the next step
  • Creation of an organoid

In late 2015, my mother was diagnosed with stage III pancreatic cancer. The CT scan showed that the tumor was non-operable.

After a biopsy, it was confirmed that she has a “classical” adenocarcinoma in the middle region of the pancreas.

Genetic Testing Eliminates Some Treatment Possibilities

Genetic testing was done on my mother’s germ line as well as her tumor tissue. She has the CHEK2 mutation, which is associated with breast, prostate, and colon cancer in Ashkenazi Jews, but has no established link to pancreatic cancer.

Her tumor sequencing came back with the KRAS mutation and the CTNNB1 mutation. In light of this, we tested her tissue to see if it was MSI positive. An activating β-catenin mutation is very unusual in pancreatic cancer and if she tested MSI positive, it might open the door to several immunotherapy approaches. However, it turned out she is MSI negative. Genetic testing is important for shaping treatment, but unfortunately there was nothing actionable for us.

Chemotherapy to Shrink the Tumor

We moved forward with Dr. Eileen O’Reilly at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. She recommended standard of care FOLFIRINOX.

The results of the chemotherapy are mixed. She looks and feels great. Her CA 19-9 levels (the blood marker for pancreatic cancer) have fallen dramatically, from over 250 to below 50. Unfortunately, the CT scans taken after 4, 8, and 12 treatments do not show any substantial shrinkage in tumor size or improvement in location. Scar tissue may be hiding the shrinkage of the tumor.

Choosing Stereotactic Body Radiation Therapy

As we approached her 12th treatment, we began to explore two possible paths forward. One was a clinical trial at Johns Hopkins that combines a short, high dose of radiation, the GVAX pancreatic cancer vaccine, and a drug that “boosts” the immune system.  The other was stereotactic body radiation therapy (SBRT), high intensity targeted radiation given over a 5-day or a 25-day period.

We decided to go with the radiation. Dr. Christopher Crane, a leading radiation oncologist with expertise in pancreatic cancer, recently joined MSKCC from MD Anderson. For the past 10 years, Dr. Crane has used a high-dose radiation approach in patients with small but non-operable tumors in the mid-section of the pancreas where there is some distance between the tumor and the duodenum/intestines—like my mother’s cancer—and achieved surgical-like outcomes.

In late May, my mom underwent preparation for her radiation treatment—a biopsy (which confirmed that cancer cells are still present), placement of fiducial markers and tattoos, and creation of a body mold. In early June, she began her 25-day course of SBRT. Along with her radiation, she takes a low dose of capecitabine orally. While she is only a few treatments in, she continues to look and feel great.

In addition, when she had her biopsy in May, additional tissue was extracted so we could try to create an organoid that could be used for high frequency drug testing.  The organoid work is being done by Dr. David Tuveson at Cold Spring Harbor Lab. We are waiting to see if the organoid “took.”

The author’s mother lost her battle with pancreatic cancer a year after this story was published. We offer deep sympathy to the family, and acknowledge the gift of knowledge her mother courageously left by pursuing new treatment options.

To learn more about the treatments in this story read the articles “Tumor Genetics Research Brings Some Answers for Families at High Risk” and “Stereotactic Body Radiation Therapy (SBRT) for Select Pancreatic Cancer Patients.”

What new treatments and clinical trials are available to me?

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