A Survivor's Story New drug means new hope fighting rare cancer By Jennifer Gangloff
Jennifer Gangloff was 33 when she learned she has a type of cancer with an average survival of just six years. It’s a rare type of cancer — only 5,000 Americans are diagnosed annually — called chronic myelogenous leukemia. The only known cure is a bone marrow transplant. Only about 20 percent of CML patients ever find a compatible donor. And Gangloff is not yet one of them. She and other CML patients, however, recently found new hope for a cure. The federal Food and Drug Administration in May approved the drug Gleevec (formerly called STI571) for treating CML after just three years of clinical trials. Gangloff, a freelance writer and Waterbury resident, shares her story here: *** When my official diagnosis came on March 9, 2000, following a bone marrow biopsy, I was expecting bad news. I had done a lot of Internet research and pretty much suspected CML. Still, hearing the words was a shock. And I immediately asked the stereotypical question: “How long do I have?” Three days after my diagnosis, my doorbell rang. I was in my pajamas, lying on the couch with the TV droning, in the middle of the afternoon. I had no intention of answering the door. I didn’t want to see anyone. But the bell kept buzzing. Finally, I dragged myself to the door. And there, with a silly grin on his face, stood my friend Jason, who had driven up from New Jersey. He insisted on taking me out, and we ended up talking and laughing — even joking about cancer. And something happened within me that made me want to take charge. I started scouring the Internet and found an e-mail support group for CML patients. But aside from this group, little information was available. So I created my own Web site, www.CMLSupport.com. During this time, I had also begun chemotherapy and was searching for a bone marrow donor. Because CML is a bone marrow cancer, the only way to get rid of it is to kill all the bone marrow. You can’t do this, of course, unless you have a donor to give you healthy, fresh marrow. Transplant experts launched a worldwide donor search. But it only led to disappointments. More bad news came when I learned I wasn’t getting any better from chemotherapy. I was given a more powerful drug — a drug that caused terrible fatigue — but this one didn’t help either. The cancer was still there, in force. There seemed to be just one possible hope. I had read about a new drug treatment with STI571 — a little orange pill that was showing dramatic results in some CML patients in clinical trials. I phoned and e-mailed one of the lead researchers in these trials, Dr. Brian Druker in Portland, Or. But I didn’t qualify. Ironically, according to the trial guidelines, I wasn’t sick enough to participate in experimental treatment. My only option was to remain on the powerful chemo drug and pray for off chance it would begin to work. I remember this time so clearly; another hope seemingly dashed. A couple of months passed, and soon it was Christmas 2000. I had gone to my parents’ house in Illinois, and my cancer was haunting all of us. We were more going through the motions of the holidays, than actually celebrating. My family got together to celebrate New Year’s Eve, too. But I wasn’t in the mood. Instead, I slipped into my parents’ den to check my e-mail. And to my disbelief, there was a message from Dr. Druker. Because conventional chemo had failed to stabilize my blood counts or offer me any chance of achieving remission after eight months of treatment, I now I qualified for the STI571 trials! My family and I shared a special champagne toast that night. Three months later, I flew to Oregon to begin taking those little orange pills. I’m still taking them. And so far, the side effects have been bearable — fatigue, edema and occasional wrenching bone pain the most common. The pills have also made me anemic, and I need special injections to boost my body’s production of red blood cells. People have asked if cancer has changed me. I tell them I’m no cancer hero. My struggles don’t compare to what I’ve seen others with terminal illnesses endure — especially children. But having cancer has drawn my family, friends and I closer together. Yes, that old cliché is true! Cancer has also made me more aware of the unspoken suffering many people endure — people in the grocery store, at the bank, at work. It’s made me more forgiving when people hand me incorrect change, don’t move fast enough, or are late for a meeting. And I hope they offer me the same consideration. Pictured: Jennifer Gangloff at work in Hartford. Photo by Michael Dabbraccio
Related Stories More Information About Chronic Myelogenous Leukemia What you should know By Jennifer Gangloff Despite being so rare, chronic myelogenous leukemia is one of the most understood cancers. It’s a malignant cancer of the bone marrow that results from a genetic abnormality. It causes white blood cells to increase uncontrollably, eventually leading to lethal complications. Average survival is about six years. New treatments, however, are offering hope of long-term survival. For more information, visit www.CMLSupport.com. This story originally appeared in Better Health, the magazine of St. Raphael Health Care System in New Haven, Conn.