Acute Myeloid Leukemia Survivor
- Diagnosed with AML at age 21
- Treated with bone marrow transplant with sister’s cells; relapsed 8 months later
- Cured with unrelated-donor bone marrow transplant
Returning home for the summer after her junior year at Smith College, Anna Robinson realized that she had two massive bruises on her legs. Throughout the rest of the summer she found many more bruises that took forever to go away.
“Then I noticed that I’d get dizzy and be out of breath as I walked up hills. I thought maybe I was dehydrated,” Anna says. “My dad asked me to go to the doctor, but nothing seemed that serious, so I just kept putting it off.”
By August, Anna’s symptoms were more severe. After climbing a flight of stairs, she would have to put her head down between her legs to stop the room from spinning. She was living at home in Seattle so her mother took her to the doctor. Anna said she was too dizzy to drive herself.
After a simple blood test her doctor told her that she probably had acute myeloid leukemia (AML). Leukemic cells come from immature blood cells that don’t work like normal cells and crowd out healthy red blood cells. Red blood cell counts drop and a person with AML becomes anemic. The platelet count—the body’s clotting agent—drops and bruising occurs very easily. If the platelet level gets too low, internal bleeding may occur.
“Only now, after hearing horror stories of misdiagnoses and months of searching for answers, do I really appreciate my doctor for figuring out my diagnosis so quickly,” Anna says.
“The anemia led to Anna’s dizziness and is a common symptom of AML,” says Dr. Elihu Estey, her medical oncologist at Seattle Cancer Care Alliance. “Far from being the incurable disease of 40 to 50 years ago, there has been considerable progress in treating AML in younger patients such as Anna, such that cure is now a realistic possibility for many.”
Getting a diagnosis of AML was like “getting hit by a truck,” Anna says, who was 21 at the time. “I was in shock and I just did whatever anyone told me to do.”
Anna received transfusions of blood and platelets for three days in a Seattle hospital before a family friend directed her to Seattle Cancer Care Alliance and Seattle Children’s, where Anna was able to receive treatment because she wasn’t yet over 21 years old.
Anna was an inpatient at Seattle Children’s from August to Thanksgiving in 2006, and received several treatments to get her leukemia into remission.
“The first chemotherapy wasn’t good,” says Anna. “It triggered a domino effect that started when I developed four strange bumps on my body. They biopsied the largest one, which was on my left forearm. The biopsy, instead of healing, swelled from my wrist to my elbow and was painfully tender. The surgeon cut open my arm, fearing necrotizing fasciitis, which would have meant that I would have lost my forearm.”
Lucky, the wound cultured clean, but Anna received granulocytes to help her arm heal. The granulocytes caused extreme fevers—over 105 degrees Fahrenheit—and lung complications. She spent several days in the Intensive Care Unit at Children's.
After developing mucositis, Anna found out that she doesn’t tolerate morphine or dilaudid, which are both strong pain medications. “I don’t remember several days. All I remember is waking up with an oxygen mask on and a whole bunch of people standing over me,” she says.
Anna was allowed to go home for just a week at Thanksgiving and then she went through three days of radiation and returned to Seattle Children’s the first of December for more chemotherapy in preparation for a bone marrow transplant, the only real hope of curing Anna of her AML.
Using her sister’s stem cells, Anna received her bone marrow transplant on December 5, 2006. “My sister was in her first year of college in Ohio, but when she found out she was a match she didn’t hesitate. I didn’t even have to ask. She just came back home, got shots for a few days, and sat for four hours with tubes in her arms—and she doesn’t like needles,” Anna says.
Anna knew she couldn’t tolerate narcotics, so when the mucositis started after her transplant, she was given anti-narcotics. It turned out that those drugs didn’t work any better.
“I became very paranoid of the nurses and of my mom,” Anna says. “My boyfriend was the only one I trusted and I just hung on to him. Later, I remember my room being a space ship, then I saw monkeys in the windows and spiders crawling out of my I.V. lines,” Anna says. When Anna took high doses of oxycotin, she saw puppies and kittens, “which was kind of nice,” she says.
It was a tough few months that year. “But you get used to it,” she says. “You can adjust to anything. When you face a situation, you can cry the whole time, or you can laugh about it. I chose to laugh.”
Anna spent her time at Children’s watching the short-lived television series Arrested Development and the mockumentary A Mighty Wind. “I was usually too tired to read, so my mom would often read to me. She was reading a David Sedaris book one day, which has many expletives, when a nurse walked in mid-cuss and exclaimed: “What a potty mouth!”
Life After Transplant
Anna got out of the hospital in time for her birthday and got acute gut graft-versus-host disease soon after, which was treated with steroids. Therapeutic steroids cause muscle and bone loss and an increased appetite. So Anna says she exercised a lot that spring on the treadmill and with a personal trainer, which made her feel better.
By summertime, Anna felt healthy enough for a much needed vacation. She and her long-time boyfriend took a trip to Utah and Las Vegas. “I found out while hiking in Utah, at altitude and in 90-degree heat, that since my sister has exercise-induced asthma, I now have exercise-induced asthma,” Anna says. But Anna was having more trouble breathing than just asthma during her trip, and she suspected it was a red blood cell issue.
After her trip, in August 2007, Anna had a blood test that confirmed she had relapsed. “I couldn’t go back to Children’s because I was too old,” Anna says. So she went to UW Medical Center. “In some ways it was like, I’ve done this, so yes, I can do it again.”
This time, they used the same drugs that got Anna into remission in December the year before, but it didn’t work. Another round of a different chemotherapy got her close to being in remission, which was close enough for a transplant.
Anna received two days of chemotherapy before her transplant and received donor cells from a 20 year-old un-related donor on November 9, 2007. “I was a lot stronger for the second transplant,” Anna says. “I knew what pain drugs I couldn’t take, and after my transplant at UW Medical Center, I could go home to recover, which was really nice.”
Because the second transplant did not put the disease into complete remission, Anna received donor lymphocytes from the same donor in February 2008 to increase the anti-AML effect of the second transplant.
“Following this, Anna received a drug called sorafenib,” says Estey. “This drug inhibits an enzyme that is activated by a mutation involving a gene called FLT3 .The activated enzyme (a tyrosine kinase) leads to survival of the AML cells. By targeting the tyrosine kinase, sorafenib decreases survival of AML cells still present after the transplant and donor lymphocyte infusion.”
One Year Later
Anna’s immune system is still developing one year later, and she balances worrying about another relapse with trying to live life; she and her boyfriend went on a vacation to Hawaii in November. She has a few issues with graft-versus-host disease, like dry eyes, gut, liver, and skin issues, but hopes they will continue to resolve as she gets farther from her transplant.
Hutchinson Center is still her “home-away-from home,” she says, where she goes for a weekly support group, blood draws, monthly bone marrow biopsies, IGG infusions, and yoga. “I could speak for an hour about how amazing the SCCA is. The nurses are amazing, the doctors are amazing, Rebecca who does my BMAs is amazing, all the people who draw my blood are amazing, everyone on the 5th floor in infusion are amazing, and Laura who teaches yoga is amazing.”
Anna continues to take sorafenib. The dose has had to be reduced because the medicine decreased Anna’s appetite and led to significant weight loss. But, Estey believes that the sorafenib may be keeping Anna’s AML in remission.
“Anna is an extraordinary young woman whose grace in unimaginably trying circumstances is the embodiment of courage,” says Estey. “Her parents have lent her exceptional support. Hopefully her case will serve as an example of how observations made on a single patient can influence medical practice, for example by leading to a trial of sorafenib in patients who although in remission have FLT3 mutations.”
Despite the magnitude of her illness, Anna remains positive and optimistic. She plans to return to Smith College in fall 2009 to finish her engineering degree and thinks that her experiences will influence her career choices after graduation.