Healing in the Heartland: Amy's Path to Overcoming Her Chronic Myeloid Leukemia Diagnosis

In June 2022, 50-year-old semi-retired dentist Amy Biehl felt healthier than ever. She had just reached her health and fitness goals, and a horse enthusiast, she had recently moved from Wisconsin to a ranch in Mulhall, Oklahoma, with her new husband.

Her life was as happy as she could imagine. She was surrounded by her beloved horses, rode daily and found the love of her life. When she ended up in the emergency room that June after a routine blood draw, she was reeling with shock when doctors came back with a diagnosis of chronic myeloid leukemia (CML) blast crisis, an aggressive type of leukemia.

"This was completely out of the blue for me," Amy said. "I felt good. I'm very healthy. I turned 50 in 2022, and two weeks later, I went in for my routine yearly blood draw because I am on a thyroid medication, and by that night, I was in the emergency room."

Amy’s initial tests showed she had a very high number of white blood cells. A bone marrow biopsy found a genetic change called the Philadelphia chromosome, which is linked to chronic myeloid leukemia (CML). Her bone marrow also had other severe signs, including 21% blasts. “Blasts” are immature white blood cells that build up in the bone marrow and blood during the blast phase, the most advanced stage of CML. Because of these severe signs, Amy was diagnosed with CML in blast crisis, the most advanced and aggressive stage of CML.

The next steps happened rapidly. Within days, Amy was admitted to the hospital for six weeks of intensive chemotherapy. This initial treatment phase was challenging for Amy, who describes herself as an outdoorsy person used to riding horses regularly.

"I couldn't leave the fourth floor of the hospital. I couldn't leave the oncology wing on the fourth floor," she said. "You can't smell fresh air; you can't hear birds. It’s like mute silence for six weeks."

Despite the difficulties, Amy's treatment was initially successful. After 21 days, her bone marrow biopsy came back clean, indicating she was cancer-free. However, despite her initial favorable response to chemotherapy, the aggressiveness of the disease meant more therapies were needed to prevent it from returning.

Finding Hope at Stephenson Cancer Center

Following her initial treatment, Amy was referred to OU Health Stephenson Cancer Center, Oklahoma’s only National Cancer Institute-Designated Cancer Center, for a bone marrow transplant, a referral that would prove crucial in Amy's journey toward long-term remission.

At Stephenson, Amy met with hematologist-oncologist Dr. Taha Al-Juhaishi, M.D., who specializes in hematologic malignancies and bone marrow transplantation for Stephenson Cancer Center’s Transplant & Cellular Therapy Clinic.

Dr. Al-Juhaishi, also an assistant professor in the Section of Hematology-Oncology in the Department of Internal Medicine at the University of Oklahoma College of Medicine and associate director of the transplant and cell therapy program, said because of the aggressiveness of her leukemia, a transplant was recommended to prevent relapse and provide potential cure.

However, a full search for suitable donors failed to find any full matches. Dr. Al-Juhaishi encouraged a haploidentical bone marrow transplant (HAPLO), or half-matched transplant, from her brother.

"The donor search using the registry did not show a fully matched donor, and her only sibling was half match. So, I elected to proceed with HAPLO from the brother,” he said. “CML blast crisis is very aggressive leukemia, and even with transplant, long-term survival is around 25-30%, but much, much lower without transplant.”

A haploidentical transplant, often called a HAPLO transplant, is a type of stem cell transplant used to treat patients with Amy’s type of leukemia. Unlike traditional transplants that require a near-total match of human leukocyte antigens (HLA), a HAPLO transplant only requires a 50% match, meaning a first-degree relative, such as a parent, sibling, or child, can often serve as a donor.

The search for a donor began immediately. Amy’s brother, her only sibling, was tested and found to be a 50% match. While this might seem low, Dr. Al-Juhaishi assured Amy it was sufficient.

“Half-match transplants in the late 80s, early 90s had a high risk of morbidity,” Dr. Al-Juhaishi said. “It’s only in the last 10 years or so where it can be done safely and effectively with the right expertise.”

In November 2022, Amy began her transplant process at the Stephenson Cancer Center Transplant & Cellular Therapy Clinic, the only center in Oklahoma that performs bone marrow transplants. The process began with six days of intensive chemotherapy, followed by a day of low-dose full-body radiation. This preparatory regimen is designed to completely suppress the patient's immune system and eliminate as many cancer cells as possible.

The transplant itself was a momentous occasion. Amy's brother underwent a four-hour procedure to harvest his bone marrow, which was then transfused into Amy over several hours.

"It's a ginormous bag for the blood transfusion, the biggest bag you've ever seen," Amy said.

New Technologies Mean Better Survival Chances

Before HAPLO transplants became common, patients often relied on matched unrelated donor (MUD) transplant, a type of stem cell transplant where the donor is not related to the patient but is a close genetic match. The three-year overall survival rate for patients receiving MUD transplants was around 44% to 51%.

With the advent of HAPLO transplants, the three-year overall survival rates have shown comparable outcomes to MUD transplants. However, HAPLO can be more dangerous than MUD because of higher risk of treatment-related mortality. Today, the three-year overall survival rate for patients receiving HAPLO transplants is approximately 43% to 51%. Other studies show a two-year survival rate of about 43.1% for HAPLO transplants.

Following the successful transplant, Amy still faced several critical milestones. The first was engraftment – when the donor cells begin producing new blood cells.

"The day they tell you you're making your own white blood cells is incredible," Amy said. “I can’t describe the feeling and how good that felt.”

The next hurdle was avoiding rejection and graft-versus-host disease (GvHD), where the donor immune cells attack the recipient's body. Amy spent six months on anti-rejection medications.

Today, 20 months post-transplant, Amy's outlook is bright. Her latest bone marrow biopsy in June 2024 showed no signs of cancer, and genetic testing revealed no detectable mutation. Perhaps most importantly, her chimerism test – which measures the percentage of donor cells versus her original cells – shows her cells are now 100% from her donor, erasing the “bad” cells in her body.

The success of Amy's treatment was remarkable, Dr. Al-Juhaishi noted.

"She's been 100% donor cells, and she's been in remission, and she has recovered from all the complications, and she just feels good," he said. “Now, with the technologies that we have, we have HAPLO patients who are surviving and benefiting."

Amy credited the incredible advances in leukemia treatment and the critical role of specialized cancer centers like Stephenson Cancer Center, which offers the only CAR-T therapy and bone marrow transplants in the state, for her recovery. The ability to receive the best treatment close to home was crucial for Amy and her husband as well.

"Being here close to home was big for us," she said. "I'm not even sure if my outcome would have been as good had I had the stress of being in a different city."

For others facing similar diagnoses, Amy offers words of encouragement.

“My physician assistant at OU Health came after morning rounds to visit me every day,” said Amy. “She knew I would be alone at that point in my day. She told me that it was okay to not feel brave and to be angry, and that I don't need to put a smile on my face for the doctors, nurses or my caregivers. So, I cried, which was much needed.”

The PA had other words to share, saying that while it was okay to be angry, it wasn’t okay to stay angry.

“Being hopeful and believing that I can heal is very powerful. She said they can do everything they can medically, but I needed to uphold my end by being mindful and forgiving of my body along the journey,” said Amy.

“That was the day I realized that all the individuals I have met or will meet at OU Health are communicating the same message of the power of hope and how blessed we are to have the capability to research and implement cancer treatments. It’s okay to feel helpless, but it is not okay to feel hopeless.”

The Importance of the Registry

While traditional transplants require a near-perfect match, which can be difficult to find, HAPLO transplants only need a 50% match, making it easier to find suitable donors among family members.

HAPLO transplants have shown survival rates comparable to those of matched unrelated donor (MUD) transplants, making them a viable alternative, and advances in post-transplant care, such as better management of graft-versus-host disease (GvHD), have improved outcomes.

However, more donors and more racial varieties are needed for the national bone marrow donor registry operated by the National Marrow Donor Program (NMDP), formerly known as Be The Match. This registry connects patients with matching donors for life-saving marrow or blood stem cell transplants, said Dr. Al-Juhaishi.

“Mixed races, whether that be African American and Hispanic or Native American, are vastly underrepresented," he said. “We need as many people as possible to sign up for the registry. The more people we have represented, the better the chances for donor matches that save lives.”

Thanks to the expertise at Stephenson Cancer Center and the gift of her brother's bone marrow, Amy is back in the saddle – literally and figuratively – embracing each day with newfound appreciation. She has returned to her dental practice and is able to ride her horses once again.

“Looking back on my journey at Stephenson Cancer Center, I am grateful and blessed that a location that I didn’t call home for the first 46 years of my life is now so crucial to giving me a reason to live and the privilege to age gracefully and in health,” she said.

Learn more about Transplant & Cellular Therapy treatment and comprehensive, multidisciplinary cancer care at Stephenson Cancer Center, or speak to an expert by calling (405) 271-1112.