You’re not alone even if… you’ve experienced two types of blood cancer
The Leukemia & Lymphoma Society of Canada (LLSC) provides in-person and online support groups where people living with a chronic blood cancer and their families can share information and experiences.
Tuesday, August 24, 2021
Leukemia & Lymphoma Society Canada
Globe Content Studio
When Bill Levine was diagnosed with cancer for the first time, he was shocked.
Then, came a second, more serious cancer diagnosis – acute myeloid leukemia. With aggressive treatment, a positive attitude and a strong support system, he’s doing well
During a regular medical checkup in 2015, Bill Levine received some puzzling news. His doctor revealed that Bill had extremely high white blood cell counts.
Bill, a high school principal who was 60 years old at the time, couldn’t believe it. He felt fine.
“I’m 100 per cent healthy and I keep myself in good shape and I live a healthy life,” Bill told his doctor at the appointment. “There’s nothing wrong with me.” So, the doctor ran the blood tests again.
After getting the same concerning results, the doctor referred Bill to an oncologist at Oshawa General Hospital, not far from his home in Courtice, Ontario. There, he was diagnosed with myelofibrosis (MF). According to The Leukemia & Lymphoma Society of Canada, the only voluntary health agency dedicated to all blood cancers, this rare blood cancer affects the bone marrow, turning it fibrotic, meaning it becomes like scar tissue. MF is a chronic type of cancer that can make you tired and affect your organs, especially the spleen, or may cause no symptoms at all.
The oncologist prescribed Bill medication to control his white blood cells, telling him, “You should be good for about seven years.”
While you can live for many years with MF with minimal problems, the concern is what can happen next.
“We sometimes call it a precancer,” explains Dr. Ivan Pasic, oncologist with Princess Margaret Hospital. “Cancers like this are not bad, but they have their own propensity to transform into an acute cancer.”
Bill continued to have his condition monitored by his oncologist, and in 2019, blood tests revealed rising white blood cell counts. He was referred to Princess Margaret Cancer Centre in Toronto where doctors diagnosed him with acute myeloid leukemia (AML).
In just four years, the worst case scenario had happened. Bill now had a second blood cancer, and needed a new treatment approach to this now life-threatening disease. Faced with a difficult path ahead, Bill elected to keep positive, as did his wife Joyce.
Bill remembers Joyce’s response when he told her of his diagnosis: “Don’t worry about it. We’ve got this. Let’s just do what we’ve got to do.”
How a cancer changes
Some chronic blood cancers such as MF can change over time, says Dr. Pasic. He notes that a similar phenomenon can happen with polycythemia vera, a bone marrow cancer that leads to the body producing too many red blood cells, and essential thrombocytosis, in which the body produces too many blood platelets.
“Some people live with these conditions for 30 years and nothing happens to them. And some of them, after a year, get acute leukemia,” says Dr. Pasic.
With MF, the risk of the disease developing into a serious cancer is a major concern, because as the bone marrow becomes less hospitable, it affects stem cells.
“The bone marrow is full of stem cells, and they’re the parents of our blood cells,” explains Dr. Pasic. “There’s a change that happens in the stem cells where they don’t behave the way they’re supposed to.”
People can develop leukemia after having a solid tumour cancer, such as breast cancer. Radiation and certain kinds of chemotherapy can also trigger a blood cancer, often years later.
AML is a serious condition on its own. Without treatment, this cancer is fatal in a matter of weeks. With treatment, 21 per cent of people survive for five years. However, for people who’ve already had a cancer or precancer, this adds extra treatment challenges.
“If you have a secondary acute leukemia, your body has learned a lot of tricks to evade treatment and therapies such as chemotherapy,” says Dr. Pasic. If someone has an enlarged spleen or other symptoms of their precancer, the medical team has to manage those at the same time as the new treatment.
Nadine Prevost, Senior Director of Community Services at The Leukemia & Lymphoma Society of Canada (LLSC), notes that people experiencing a recurrence or secondary cancer can experience emotional challenges on top of the physical effects of their disease.
“Human being are resilient. In a short period of time, a person diagnosed with a blood cancer can build all the courage they need to get through all the steps of their cancer,” she says. “[But] when a person has a recurrence or the course of the cancer does not go as planned, people feel they are stepping back instead of ahead and it may be as difficult as receiving the diagnosis.”
Living with a second blood cancer
When a second, acute cancer strikes, the medical team’s goal is to catch the cancer in its very early stages and treat it aggressively. If a person in treatment is considered healthy enough to withstand it, the standard treatment for AML is chemotherapy, radiation and a stem cell transplant to try to put the cancer into remission.
That’s exactly what happened with Bill Levine. As soon as his team saw the early stages of AML developing, they began hunting for a stem cell donor. Once they found a donor – located in Germany – Bill was admitted to hospital and began a course of aggressive chemotherapy and radiation in early 2020.
“They damn near kill you, trying to get rid of the cancer,” says Bill, who refused to get under the covers of his hospital bed, claiming he wasn’t a patient but just a guest at the “Princess Margaret Resort.”
Once the chemo and radiation had destroyed the cancer cells in Bill’s body, doctors transplanted new stem cells. Then, it was days of waiting to see if his body would accept the new stem cells and start producing its own white blood cells.
The wait was brutal, Bill remembers, with him very sick in bed with almost zero immune system. Finally, his blood counts went up, day by day. He soon was able to walk around the hospital, dragging an intravenous machine around with him as he slowly regained strength.
“I called [the machine] Wilson,” quips Bill, who retained his upbeat attitude through treatment. He kept in close touch with his wife, kids and siblings, especially his older brother Louis, who was always an encouraging voice and empathetic ear.
While Dr. Pasic says people who have had a second cancer don’t always fare well after treatment, Levine has come through his stem cell transplant well. There are many risks of transplantation: risk of relapse, infection, developing graft versus host disease (where the donated stem cells view the recipient’s body as foreign and attack the body). So far, none of these things have happened to Bill.
“As we sit here today, I no longer have AML,” Bill says. “Is there a chance it could come back? Yes.”
But Bill says he plans to stay positive and to keep leaning on friends and family for support.
“I know I’ve had a good result,” he says. “I’m not special, but I’ve done well.”
The Leukemia & Lymphoma Society of Canada (LLSC) provides in-person and online support groups where people living with a chronic blood cancer and their families can share information and experiences. For more info, visit our page on Support Groups.