In December 2007, just days before Christmas, Vonnie Sullivan told her two daughters, Cameron and Alexandra, who were 8 and 13 at the time, that she was leaving them for six weeks to be treated for cancer.
Sullivan, who was in her 40s, had just been diagnosed with acute myeloid leukemia (AML), a blood cancer in which the body makes too many immature white blood cells. She was treated with intensive chemotherapy with the hope of eliminating every cancer cell in her body. The treatment would knock out her immune system, leaving her susceptible to infections. Seeing her children would be out of the question.
“Leaving my daughters was one of the hardest things that I’ve ever had to do in my life,” said Sullivan who at the time was in disbelief about her diagnosis. “When you think of leukemia, you think it’s something that young children get, not adults. Most people don’t know much about AML; I certainly didn’t.”
Lack of awareness is one reason The Leukemia & Lymphoma Society (LLS), MDS Alliance and Patient Power have partnered to launch the first annual AML Awareness Day on April 21, 2016. The goal is to help patients and caregivers better understand this disease and highlight the need for more research.
Progress in AML has been slower than in other blood cancers over the last decade. Common treatment options, which include chemotherapy and stem cell transplants, have changed little over the past 40 years, leaving much work to be done.
“The AML patient journey is a difficult one,” Lee Greenberger, Ph.D., LLS chief scientific officer, said. “You can’t work when you are being treated, so patients often require long-term assistance and significant time off.”
For patients who are older or in poor health, these treatments are often too intense for their bodies to handle. Considering the average age of AML patients is 67, some are left with few treatment options.
For younger patients or anyone else who has had successful treatment, many will eventually relapse. By the time the disease returns, new mutations may have developed that may be resistant to current treatment options.
But there are many success stories as well, giving patients a reason to remain positive. It has been eight years since Sullivan was diagnosed, and she’s been in remission since her first and only round of chemotherapy. She has since achieved her long-standing dream of starting her own small business when she opened a home design store in Larchmont, New York in 2014.
“I have been blessed and am doing very well,” Sullivan said. “I know others who have not been so lucky. It’s a little disheartening that more progress hasn’t been made over the past decade. We need more research.”
Sullivan’s message is being heard. LLS is investing in research that will help doctors determine the most appropriate treatments—either alone or in combination—based on a patient’s particular AML mutations. Meanwhile, several new therapies are being investigated, and some are close to the finish line. This new batch of treatments includes novel approaches such as therapies that target specific AML-related mutations.
Every improvement in the survival of AML patients is important, even small ones.
“Every improvement in the survival of AML patients is important, even small ones,” Greenberger said. “We need new therapies and approaches that can better control this disease and eventually get rid of every AML cell in the body.”
Patients play an important part in the search for a cure. Many clinical trials in AML are ongoing, and LLS specialists can help patients find a clinical trial to enroll in.
“For patients who are diagnosed with AML, or any type of leukemia, knowing the resources available is important,” Sullivan said. “Hopefully, we can make some real progress in this disease.”
— Celgene Corporation (@Celgene) April 21, 2016
This article was originally published April 20, 2016.