Plasma Cell Leukemia Survivor
- Diagnosed with plasma cell leukemia at age 61 in 2008
- Treated with tandem stem cell transplants
- As of May 2012, he remains cancer free
Bill Matthaei was in the best shape of his life in 2008. He was involved in a diet and exercise program, and lost 50 pounds he’d been hoping to lose for years. An avid bicyclist, every year he enjoyed riding in the Courage Classic, an organized ride that raises money for Mary Bridge Children’s Hospital in Tacoma, Wash. August 2008 was no different. He rode the ride, which took him up over three mountain passes, but despite his excellent physical shape, Bill felt his performance wasn’t as good as the year before.
Later that month, Bill caught a cold that persisted and he began to feel weaker and weaker and noticed persistent soreness in his lower back and sternum.
“In September I went to see my doctor who told me I was anemic, which was very strange because I’d had a full, perfect physical, including blood work, in June, “Bill says. “My doctor thought I might have an ulcer, but I wasn’t losing blood anywhere.”
It was at Tacoma General Hospital and Multicare Regional Cancer Center, a Seattle Cancer Care Alliance Network member, where Bill learned he had an extreme form of multiple myeloma called plasma cell leukemia. This is a rare condition in which cancer originates in the bone marrow and moves into the blood stream. It is so rare most oncologists never see a case of plasma cell leukemia. A bone marrow biopsy showed his bone marrow was over 95 percent affected. He read in scattered reports that one-third of patients might live beyond six months.
“It is very virulent they told me,” Bill says. Treated like multiple myeloma, the oncologist at Multicare put Bill on a regimen of chemotherapy known as triple therapy through the fall that included the drugs Velcade, Revlimid, and Dexamethasone, a steroid.
“He told me from the beginning that chemotherapy alone would not cure the disease,” Bill says. “He encouraged me to learn more about stem cell transplants.”
In September 2008, his oncologist suggested he meet with Dr. Leona Holmberg, a medical oncologist at SCCA who treats patients for lymphoma, multiple myeloma, and was currently treating a patient with plasma cell leukemia. “She is one of the most knowledgeable people about this disease,” Bill says.
Tandem Transplant Treatment
Dr. Holmberg said that at age 61, Bill’s best treatment would be full chemotherapy conditioning followed by a tandem stem cell transplant. In patients with multiple myeloma and those with very advanced non-Hodgkin’s lymphoma, SCCA oncologists are studying tandem transplants: using autologous transplantation (using a patient’s own cells) after high-dose chemotherapy or radiation therapy, to reduce the tumor burden before doing a “mini” allogeneic transplant using stem cells from a donor. The concept is that the donor immune cells will have a greater chance of eradicating the remaining tumor cells since there are fewer of them.
A patient Bill’s age would not be a candidate for a traditional transplant, but the lower dose of chemotherapy used for the “mini” transplant increased his chance of survival. Bill was very grateful to have Dr. Rainier Storb, the SCCA medical oncologist who developed the “mini” transplant, as his attending physician following his allogeneic transplant.
Transplant #1 and #2
The autologous transplant in April 2009 was the most difficult. Melphalan was used to destroy the growth of the abnormal cancer cells before they re-infused Bill’s collected stem cells. However, it also created inflammation resulting in a 15-day hospital stay. Never the less, the autologous transplant was successful.
The second transplant took place on July 8, 2009. For the first 100 days following this transplant, SCCA saw Bill almost daily. He had to live within 30 minutes of SCCA during this time. The greatest concerns were and continue to be infection and graft vs. host disease (GVHD) in which the transplanted cells (the graft) attack certain organs in the patient (the host). Bill had some skin and gut GVHD, but with drug treatment (mainly steroids), they remain under control.
Bill continues quarterly SCCA checkups with the Long-Term Follow-Up team. In the meantime, Tacoma Multicare’s Oncology department is “expertly handling my ‘routine’ care,” Bill says. Through it all, Bill says, “I’m really amazed with SCCA and Multicare at how well they can minimize the discomforts that go with these treatments! I had a few bad nights, but overall it wasn’t as bad as I’d expected.”
“Alicia Duvall, our nurse navigator with Multicare, has been indispensible coordinating activities between the two organizations,” Bill says.
“My blood tests indicated the cancer levels were off the charts when I was first diagnosed,” Bill says. In the most recent blood tests, no abnormal cells have been detected. “Hopefully when I go back for my one-year follow up, the bone marrow biopsy will confirm that report. The biggest challenge is monitoring medications to keep the GVHD at bay while still allowing the donor’s immune cells to take over,” he says.
In spite of the cancer, Bill and his wife, Joan, have had many blessings during his treatment. Their first grandchild was born and their second is on the way. A huge contingent of friends and relatives are keeping them in their prayers. “The support is felt enormously and appreciated greatly,” Bill says.
As CEO of Roman Meal and Dakota Specialty Milling Company’s, Bill is especially grateful to the presidents he appointed who have taken over day-to-day operations and to Joan who is “the ultimate” when it comes to caregivers.
A year since his transplants, Bill says he’s feeling stronger. “Prior to and following transplant, I had a lot of lethargy—just no stamina. I’m now feeling stronger and like getting back in shape.”
As of May 2012, Bill reports that he is better than ever. Having recently completed his annual review with SCCA's Long Term Follow Up Clinic, Bill is "caustiously optimistic" as no cancer was found in his bone marrow.
"July 8th will be my fourth 'birthday,” Bill says. "And while I whine about the mild GVHD that remains and being tired and weak, all in all life is good. Looking back at how far I’ve come, I sometimes wonder, 'Did I really go through all that?!' In some ways, perhaps the 'Chemo Brain' is forgiving."