Acute Myeloid Leukemia Survivor Still Going Strong

Shruti Kohli’s young daughters love to share stories with their mom. They have a tendency to tell the same ones repeatedly, but Shruti listens intently each time, no matter how often she’s heard them before.

It’s little things like this that Shruti treasures, appreciating them more than ever after triumphing over a life-threatening diagnosis.

She was just 39 when her world changed. A routine checkup uncovered concerns with her blood test results. Further evaluation revealed that Shruti – a dynamic software engineer who loves to dance and cook – had acute myeloid leukemia.

“It came as a complete shock,” she says. “I had no symptoms. I’m good about my checkups. There was nothing wrong last year. There was nothing wrong the year before. As we waited several days for the confirmation, we kept thinking the test must be wrong.”

The waiting was agonizing, so Shruti and her husband, Sumit, used the time to educate themselves about leukemia and its treatment.

“We have a number of physicians and oncologists in our community of friends, and we asked their advice,” Shruti says. “They all said The University of Kansas Cancer Center was the best place to go. They universally believed this was the best team of hematologists and oncologists we would find anywhere, a highly respected, highly reputable program.”

World-class care close to home

The only National Cancer Institute-designated cancer center in the state of Kansas, The University of Kansas Cancer Center is home to one of the nation’s largest and most experienced blood and marrow transplant and cellular therapeutics programs. This expertise proved key to saving Shruti’s life.

“Our program is driven by our extraordinarily capable and experienced care team,” explains blood and marrow transplant specialist Sunil Abhyankar, MD. “From the physicians to the nurses to the transplant coordinators to the experts in chemotherapy and its many complications, we offer deep expertise and a team approach that benefit patients through a long, extensive treatment process.”

There was no mistake in Shruti’s blood test results, but the Kohlis were ready to face their battle. Shruti was hospitalized to begin chemotherapy that very day. She would not return to home for more than a month.

“The medical support I received was excellent,” Shruti says. “I couldn’t imagine being anywhere else. The doctors, the nurses, the coordinators. I have absolute trust in them. I felt so blessed that I could receive this kind of care without leaving my home and family.”

As Shruti received chemotherapy to prepare for the stem cell transplant that is the gold standard in leukemia treatment, her care team searched for a matched donor. Shruti took charge of her situation as best she could, tackling her treatment as though it were a project she’d face at the job she loves.

“I kept a notebook and recorded all of my questions and notes,” she says. “I had a million questions every morning. Dr. Abhyankar would come in and fold his hands and say, ‘I’m ready. Go ahead.’ Whether it took 15 minutes or an hour, he never let on that there was anywhere else he needed to be.”

By taking an active role in her care, Shruti says she avoided complaining or feeling sorry for herself and created some sense of control.

Finding a match for BMT treatment

During Shruti’s treatment, the Kohlis were surrounded by much-needed support. Shruti had joined her husband in Overland Park, Kansas, almost 2 decades earlier after earning degrees in software engineering and business administration in New Delhi, India. Shruti and Sumit had been very happy in the United States, but hadn’t fully realized the depth of the roots they’d put down. Family, friends and neighbors along with Shruti’s Garmin co-workers and executive team all stepped forward to offer help.

“We have such a wonderful support system, and I didn’t even know it was there until we needed it,” Shruti says. “I could call anyone, any time, for anything. Everyone was so willing.”

Another willing supporter, a crucial member of Shruti’s care team, was a stranger – the unknown donor whose selfless decision made Shruti’s stem cell transplant possible. Shruti wouldn’t know it for a year following her transplant, but that donor was Toral Reema Shah, a retail store manager from Texas who had her cheek swabbed at a Be The Match booth in 2014.

“I follow a religion that promotes respecting all living things and always putting others before ourselves,” Reema says. “I believe that if we have the chance to help someone, we should. When I came across the booth and learned about the need for bone marrow donors, I felt that registering was simply the right thing to do.”

That cheek swab led to nothing further for about 3 years. But then …

“It was kind of funny, just a week or 2 before I got the call, I was telling a friend about Be The Match and telling her she should register,” Reema recalls. “Then, I was at the zoo with this same friend and her kids when my cell phone rang. It was shocking and unbelievable and exciting.”

After full evaluation confirmed she was a match for Shruti, Reema had a procedure in which bone marrow cells were extracted from her pelvic bones.

“In the past, all stem cell collection was done by bone marrow harvest,” explains blood and marrow transplant specialist Anurag Singh, MD, another physician on Shruti’s care team. “It was the standard of care. More recently, we’ve been able to collect about 80% of stem cell donations from peripheral blood, an even less invasive procedure. But there are some considerations that still require marrow collection.”

Shruti was on a clinical trial in which the protocol required surgical bone marrow collection. It is a low-risk procedure, Dr. Singh says, and it did not faze Reema.

“It was a low-risk procedure, and I just knew it was something I had to do,” she says. “I was able, and I did it.”

Shruti returned to the hospital on March 15 to prepare to receive her new cells. She turned 40 on March 16 and received her transplant on March 22, a day physicians consider “day zero,” but Shruti considers her new, 2nd birthday.

A special connection

Today, again healthy and lively, Shruti can’t fully describe her gratitude and what it meant to meet Reema in person. Reema traveled to Kansas City to spend a weekend celebrating her special relationship with the Kohlis.

“She didn’t just save my life,” Shruti says. “She saved my girls’ lives, their future, my husband’s. I don’t think she could understand the true impact of what she has done until she saw us. My children still have a mother because of her. We are still a family because of her.”

“It takes so much courage to do what she did,” Sumit adds. “She was a stranger, yet still she did this.” As for Reema, at first she was uncertain about meeting Shruti and her family.

“I didn’t want them to feel like they owed me anything,” she says. “I just wanted to help. But now, it really is so exciting to be able to see the lives I have affected and spend time with the family face to face.” Both Shruti and Reema hope that learning of their experience will inspire others to join the marrow registry, especially potential donors of South Asian descent.

“While the ethnicity of donor and recipient do not have to match, the chances of finding a strong match are higher when the donor and recipient are of the same origins, as tissue types are more complex among some ethnic groups than others,” Dr. Abhyankar notes. “Increasing the number of bone marrow registrants across all ethnic backgrounds is of critical importance. When patients like Shruti are diagnosed, there is no time to wait. We must move with urgency toward transplant.”

A powerful outcome

Reema’s selfless act combined with superior healthcare and tremendous support led to Shruti’s positive outcome.

“This is not just my success story,” Shruti says. “This is a success story of the whole community that surrounded my family and me. It was the doctors, the nurses, the coordinators, my donor. It was our family, our friends, our children’s teachers, our employers – who made so many accommodations to offer flexibility for appointments and even provide me with a new seating arrangement because of my low immunity. It was all of these pillars, working hand in hand. I would not be here today without everyone involved in my story.”

This individual participated in a clinical trial of an investigational treatment. Clinical trials are different from standard medical care. As with all research studies, clinical trial participant outcomes vary. Before participating in a clinical trial, it is important to discuss the risks and benefits with your healthcare provider.