December 04, 2018
Acute myeloid leukemia survivor finds hope with clinical trials
BY Mena El-Sharkawi
Six months after Emily Augenstein’s acute myeloid leukemia diagnosis, a doctor in Pittsburgh told her that her allogeneic stem cell transplant had failed and she needed to get her affairs in order.
“I was mortified,” Emily recalls. “I went home, and my husband and I were crying. Then we searched online for the best cancer hospital in the world, and MD Anderson came up.”
A clinical trial and a second stem cell transplant
In August 2012, Emily came to MD Anderson hoping that a second opinion from Simrit Parmar, M.D., and Naval Daver, M.D., would yield better news.
“When I met with Dr. Daver and Dr. Parmer, they told me that because I had the FLT3 genetic mutation, I’d likely have more success with a different kind of stem cell transplant,” she says. Like the first one, this one would be an allogeneic transplant, but this time, the stem cells would be extracted from a registry donor’s bone marrow.
Emily first needed to undergo a chemotherapy regimen to prepare her body for a transplant. She enrolled into a clinical trial examining the safety and effectiveness of a combination of the chemo drugs sorafenib and 5-Azacitidine in the treatment of relapsed acute myeloid leukemia.
In November 2012, Emily underwent her stem cell transplant, thanks to an anonymous bone marrow donor. Though the procedure was successful, the cancer returned a few months later in February 2013.
Facing two more leukemia relapses
“I was scared but at the same time, I knew in my heart that MD Anderson had it under control,” Emily says of her recurrence.
But with relapses after two stem cell transplants and five failed chemotherapy regimens, Emily needed a novel therapeutic approach to put her back into remission, hopefully for a long time. She joined a different clinical trial examining the effectiveness and safety of sorafenib, plerixafor and GCSF in treating acute myeloid leukemia patients with the FLT3 genetic mutation. This trial was based on cutting-edge preclinical research pioneered by Michael Andreeff, M.D. This put the cancer back into remission – until a CT scan in August 2013 detected the presence of leukemia in Emily’s brain.
She underwent 12 months of intrathecal cytarabine, a type of chemotherapy that’s injected directly into the spinal cord, and completed three weeks of radiation therapy. She’s now been cancer-free for nearly five years.
Coping with leukemia treatment side effects
Even though Emily continues to show no evidence of disease, she has dealt with side effects from her treatment. She lost vision in her right eye during her third relapse, and she struggled with graft vs. host disease, a condition that causes the donor stem cells to attack the patient’s immune system.
She also worked with dermatologist Sharon Hymes, M.D., to get her skin rashes under control using prescription creams, lotions and sunscreen.
Most recently, she’s been managing life with avascular necrosis, a condition that causes the death of bone tissue, from repeated use of high-dose steroids. As a result, she fell and broke her hip in September 2015.
In September 2017, Patrick Lin, M.D., replaced both of her knee joints, and three months later, she had her right hip replaced. In March, she underwent one more surgery to replace her left hip.
“After each surgery, I spent about a week in recovery, but the physical therapists at MD Anderson were wonderful. They’d get you out of bed and basically show you how to walk again,” Emily says.
Emily continues to undergo physical therapy today, but her pain has eased and she can perform low-impact exercises, such as muscle strengthening and even using a stair-climbing machine.
A message of hope for other patients
Emily says there were times when negative emotions could’ve overtaken her spirits, but one piece of advice has kept her positive: “Even in the darkest moments, you have to keep telling yourself: ‘It’s only temporary; you can get past this.’”
She suggests exercising, listening to music or watching favorite movies and shows to keep going. As she tells others: “Look for the little bit of light and keep following it.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
You have to keep telling yourself: ‘It’s only temporary.’