Acute Lymphoblastic Leukemia Survivor
|Joyce Miner, Seattle, Washington|
Doing nothing more than walking after dinner, Joyce Miner wondered if she was having a heart attack. It happened during a visit to her son’s in October 2001. She was walking up a hill when she was struck by “horrendous chest pain.” But pain in her legs after short walks and lethargy later on led her to believe she had mono (Infectious mononucleosis). “I felt good, but really fatigued.” So Joyce decided to see her doctor.
After a routine blood test, Joyce’s doctor called her with the results: Joyce’s red blood cell count was low and her white blood count was through the roof. She was diagnosed with acute lymphoblastic leukemia, Philadelphia chromosome positive (ALL Ph+), a childhood cancer that is rare in adults. “My doctor asked me to meet her at the hospital right away for a transfusion--it happened very fast. I started chemotherapy quickly thereafter and was told that a transplant was the only chance I’d have for survival."
Bone Marrow Transplant
After a short hospital stay for her chemotherapy treatment, Joyce went to Seattle Cancer Care Alliance to see if she qualified for a stem cell transplant.
Joyce also needed to find a donor. As an adopted child, she has no idea who her blood relatives are. “But the folks at SCCA said it would be easy to get a donor – my disease type put me on a fast track to find one. They called us four weeks later to say that they had found three excellent matches.”
Joyce had her transplant at UW Medical Center on March 15, 2002.
“It was no picnic,” Joyce’s husband Rick says about those landmark 100 days post transplant, which were full of “high anxiety” and were “seriously stressful.” But Joyce, who is feeling a “new” normal since her transplant five years ago, says her recovery days could have been a lot worse. “I was weak, but I managed. I was just thankful for every single day. Being able to come home had a lot do to with my healing."
Five Years Later
After five years, Joyce does a lot of Sudoku puzzles that she hopes will help her compromised memory improve. “It can’t just be my age,” she says, now a lively 54 years old. “I’ll get up to do something and forget what I was about to do mid-way across the room. I can’t remember numbers either; ‘chemo-head’ is still an actuality.”
After her transplant, Joyce had very few problems with graft-versus-host disease (GVHD). At three years it kicked in. She started to get a tightening of the skin, joints, and muscles. “I could not make a fist, tie my shoes, or open a bottle of water,” she says.
The first course of action her oncologist took was to put Joyce back on Prednisone. “It is a horrible drug from my view as it so clouds your head, but it does make a difference in many conditions,” Joyce says. “It did not do a thing for my GVHD though and after four months of high-dose Prednisone, my oncologist and Dr. Mary Flowers, director of the Adult Clinical Care Long-Term Follow-Up Program (LTFU), decided to try another treatment option.
The treatment Dr. Flowers tried was not a standard treatment then, “and I'm not sure it is now,” Joyce says, “but Dr. Flowers found a small article about using Lidocaine to treat GVHD-induced scleroderma and I had Lidocaine infusions for five days every four weeks for a little over a year.”
Although time-consuming, the treatment took most of her scleroderma GVHD away. Joyce now takes oral medications to maintain status quo.
At one point, she worried that she had multiple sclerosis because she’d lost the agility and some of her balance she’d had before getting ALL. “A neurologist that I saw did a brain scan and showed me where the chemotherapy treatment had caused some ‘white matter disease’ in my brain.
Joyce had never been sick before, and had never been a patient in a hospital before being diagnosed with ALL. “I never believed I wasn’t going to make it,” she says. “I had a 30 percent chance of survival, due to my age, health, and that it was such a rare disease for me to get. But I never believed I wouldn’t make it.”
Going through her treatment and transplant, Joyce decided to help others if she could, and now is the chair of the Hutch Holiday Gala Board of Trustees. She also works with the bone marrow network and helps lead a Patient & Family Centered Care team at UW Medical Center.
“I so believe in SCCA and Fred Hutchinson Cancer Research Center. My life was missing the giving-back part before this. Now I work part-time with my husband in our real estate business and spend the other half of my time helping others,” she says.
Joyce asked her oncologist when all the GVHD and other byproducts of transplant were going to end. “My doctor said that I traded a life-threatening disease for a chronic condition. I just do as I’ve been doing for the last five-plus years. I take it one day at a time and make each day count.”