Blood Cancer Survivor Discusses Clinical Trial Participation, Unexpected Side Effects

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Karen Estrada was shocked when she was diagnosed with leukemia and ended up on a lifesaving clinical trial, although her journey was not entirely smooth.

Clinical trial participation can allow patients to access beneficial drugs before they are approved by the Food and Drug Administration (FDA), which is how one patient with acute myeloid leukemia (AML) was treated with a particular drug and chemotherapy.

There were some other unknowns that she encountered throughout her cancer journey. As she navigated her blood cancer treatment, which included intense chemotherapy, participation in a clinical trial and a bone marrow transplant, she continued to be surprised by what she was experiencing — from painful hair loss to trouble swallowing — and began to wonder if anyone else was having similar experiences as she was.

In a recent interview with CURE® Estrada, aged 45, and an oncology nurse, discussed the ups and downs of her treatments and the things about AML therapy that are not often discussed.

Clinical Trial Participation

Estrada’s first AML treatment was high-dose chemotherapy, but unfortunately that only eliminated approximately 50% of the cancer. Her doctor told her that she had two genetic mutations that made it more difficult for chemotherapy to work. Based on this information, her doctor said that her next best option would be to participate in a clinical trial investigating the novel drug magrolimab plus chemotherapy, which was occurring at the University of Miami Sylvester Comprehensive Cancer Center, where she was undergoing treatment.

Magrolimab works by findings and shutting off the CD47 protein, which is present on many cancer cells and protects them from the body’s immune system. The drug is not yet approved by the FDA but is being studied in clinical trials across the United States.

“I took the experimental drug as the one that’s going to push me to release the toxic relationship I have with cancer,” Estrada said in an interview with CURE®.

Unexpected Side Effects

Chemotherapy was given both before and during the clinical trial, so Estrada was prepared for certain side effects associated with treatment, namely those commonly associated with chemotherapy such as hair loss and nausea.

What she didn’t expect, however, was that the hair loss would hurt both physically and emotionally.

“I want someone that is going through my situation that knows that the hair hurts,” she said. “You don't have to shave it if you don't want to, but it's going to hurt. … And when you have long hair and you're attached to it, (you’ll have) to process (hair loss), and that’s OK.”

Another painful side effect that Estrada experienced was oral mucositis, an infection of the digestive tract. The intensity of oral mucositis can vary, according to Catherine F. Collier, a registered nurse at Sylvester Comprehensive Cancer Center.

“Chemotherapy attacks rapidly dividing cells (including) those in your digestive tract: your mouth, your stomach, your intestines and beyond,” Collier said in an interview with CURE®, noting that mucositis can make swallowing painful or even impossible.

To combat mucositis, Collier recommends practicing good oral care including using a soft-bristled toothbrush and using a non-alcoholic mouthwash daily.

Life After Cancer Treatment

After participating in the magrolimab trial, Estrada underwent a lifesaving bone marrow transplant from an anonymous donor, which is when she began to get her energy — and her life — back.

However, she still had questions about returning to a normal sex life with her husband.

“Even if I have the energy, the chemo dried my sex drive and brought me menopause,” she said.

Cancer survivors can also experience vaginal dryness or erectile dysfunction from cancer treatments that could impact their personal lives.

“A discussion could be had on other forms of sexual intimacy that you can talk to your partner about and find common ground about what you want to explore,” Collier said.

Looking back, Estrada said that she is thankful for the excellent care she received, though she did wish that she engaged in more supportive care activities such as art or music therapy, massage and others. Although these activities were offered at Sylvester Comprehensive Cancer Center, due to the fast-paced and often overwhelming trajectory of her treatment, they were never fully explored.

“For patients with leukemia, they’re thrust into this world without any preparation. They usually go to the doctor’s office, get bloodwork back and (are told) you need to go straight to the emergency room,” Collier said.

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