Longer-term treatment, longer life
Mimi Norwood takes great pride in her heritage and family, as her parents came to the United States from China for a better future. At 64, the Ypsilanti mother and grandmother has accomplished a lot. She has two grown children, five grandchildren and a network of friends, and has had careers in respiratory therapy and social work.
When Norwood was diagnosed with chronic myelogenous leukemia in 2010, she worried about preserving her independence. She lives alone with her dog Mai, has a house to take care of and supports herself teaching sociology at Washtenaw Community College.
Her cancer, CML, is a slowly progressing blood and bone marrow disease. The first line of treatment was a daily dose of a chemotherapy drug called Gleevec. The drugs Tasigna and Sprycel were approved for patients whose diseases progressed or were intolerant of Gleevec. These drugs are taken for as long as the disease remains in remission. Unlike older chemotherapy, Gleevec does not cause long-term organ damage so people can take it and lead normal lives.
What is maintenance therapy?
For patients with certain cancers, maintenance therapy is an effective way to use an ongoing, less intensive program of chemotherapy to help lower the risk of your cancer coming back after it has been treated. Most maintenance therapy will not only prolong the duration of the original remission, it will also increase the chance for cure. Some maintenance drugs are taken forever. In the past, patients like Norwood with CML would most likely receive a bone marrow transplant, a procedure associated with hospitalization, serious side effects and, for people her age, a 20 percent chance of death. Newer drugs, like Gleevec and Tasigna, have fewer and less serious side effects and less chance of serious complications.
Though no patient wants to have to take medication for the long-term, John Krauss, M.D., points out several factors should be considered, starting with putting the disease in perspective.
"Mimi has chronic leukemia, meaning it can result in death in three to five years if untreated, not three to five days," he says. "It is also important to put the treatment in perspective. Before these drugs, we had a bone marrow transplant. Everybody had severe side effects. While these newer drugs take some getting used to, they are better than a bone marrow transplant."
In other words, being at maintenance with minimal side effects and a cancer in deep remission is better than progressive cancer.
Maintaining a quality of life
- Multiple myeloma
- Non-Hodgkin lymphoma
- Gynecologic cancers
Source: American Society of Clinical Oncology
- Side effects
- Higher treatment costs
- More doctor visits
- Limited data on survival rates
- Drug resistance after long use
Source: American Society of Clinical Oncology
Upon diagnosis, Krauss informed Norwood that her cancer could be treated with oral medication. She began taking Gleevec, only to find it gave her severe diarrhea and unbearable hives. The hives came on so suddenly, she ended up in the emergency room for a shot of Benadryl and steroids. To control the hives, she was given a slowly tapering dose of prednisone.
"I turned into the Hulk," she says. "I went to Sam’s Club and bought a roast chicken. I made potato salad. I stir fried green beans. I had to make myself stop eating so I didn't get sick. I even cleaned out my garage. The neighbors wanted to know what had gotten into me."
Krauss lowered her dose of Gleevec, but the side effects continued and they agreed Norwood couldn't live with them. She went on Tasigna instead.
"Dr. Krauss said we needed to take it one day at a time," she says. "He was very patient with me."
She responded well to the new drug and, after three years, has few side effects. She'll stay on the drug to keep her cancer in remission until a better drug is developed, or Krauss says otherwise.
"One of the biggest lessons I learned is not to be a hero," Norwood says. "You're human. You really have to get to know yourself and your limitations. Learn to rely on help from friends and neighbors. They are more than happy to help. They just need you to ask."
Looking to the future
These days Norwood feels well enough to take care of her house, walk her dog and go to the gym. Occasionally, she’ll get some itching on her palms, a side effect of the medication, but it can be easily managed with a topical cream.
She recently hosted her entire family, including her two sons and five grandchildren, for a week at her home. Sticking with tradition, they played games, had a foosball tournament and played baseball down the street at Candy Cane Park.
Norwood sees Krauss every six months for blood work.
Her biggest complaint about maintenance therapy is the cost of the drugs. Her current insurance covers the cost, with a $20 co-pay, but her receipt from Walgreen’s indicates her insurance saves her $9,608.59 each month.