By Anne Marie Amacher
ROCK ISLAND, Ill. — Swinging a golf club, opening a jar and taking walks with her husband and dog are some things Molly Foley couldn’t do just six months ago. But all that has changed after a stem cell transplant in April.
Sitting in her living room chair, Molly reflected on her two-and-a-half-year battle with systemic scleroderma, a rare autoimmune disease that has no cure, and her decision to participate in two clinical trials to try to halt the disease’s progression. That second trial involved the stem cell transplant.
Molly and her husband P.J. Foley, who attend Christ the King Chapel at St. Ambrose University in Davenport, have been dealing with this disease since 2006. It began with pain in her hands. She thought it was carpal tunnel syndrome and her doctor gave her that diagnosis in February 2007. She was treated with braces and medication. But the pain continued to worsen and started to spread. She experienced joint pain and some loss of mobility. Her doctor thought the 33-year-old might have rheumatoid arthritis.
She was referred to a rheumatologist “who immediately recognized what I had.” She underwent a chest CT scan, echocardiogram and other tests to confirm the diagnosis. Systemic scleroderma is an autoimmune disease that hardens the skin and can tighten, thicken and damage the heart, lungs, kidneys, intestinal track and other organs.
Autoimmune diseases see a particular part of the body as an invader and attack it.
“I was fortunate enough to be diagnosed within six months of the onset of symptoms,” Molly said. The average time to receive a diagnosis is three years because the symptoms can mimic other diseases as well.
At the time of her diagnosis, her husband was working in campus ministry at St. Ambrose University. “We talked with Father Chuck Adam a lot,” P.J. said. Others priest of the St. Ambrose community also helped the couple.
“There were lots of prayers from people at St. Ambrose, parishes in Illinois where our families go to church and even a friend called from Peoria to say that Molly had been put on a prayer chain at a parish there.”
The prayers of others helped the couple through the journey, he said.
After talking with her doctor and learning there was no cure, Molly was referred to specialists in autoimmune diseases in Des Moines and Chicago.
In August 2007, she and P.J. traveled to Des Moines where her diagnosis was confirmed and they were given different treatment options. She was given a 50 percent chance of living five more years.
In October 2007 the couple went to Northwestern University Memorial Hospital in Chicago, which has a strong scleroderma clinic and was offering two trial studies. The Foleys completed paperwork and submitted it to their health insurance company, which is through P.J.’s work as a major gift officer at St. Ambrose University. Within 10 days, P.J. received a call at home from the insurance company.
“They wouldn’t talk to me. They needed to talk to Molly and she was out of town. I called her to tell her she needed to call Wellmark Blue Cross/Blue Shield of Iowa — now.”
She called and had been approved for a clinical trial of chemotherapy at Northwestern. “The hospital told us it usually takes 90 days and we got a call in 10 days. It was a relief.”
Molly entered a control group study to receive the chemotherapy from January through June 2008. “After six months there was improvement,” she said. But in December 2008 she had regressed.
The doctor offered her the opportunity to participate in the chemotherapy and stem cell transplant clinical trial. Again Molly contacted the insurance company and was approved to participate in the trial.
As she prepared to undergo this clinical trial, Molly set up a Facebook fan club account to let others follow her from the preparation, through the transplant and follow-up.
In February 2009 the tests began. In her Feb. 27 Facebook entry, Molly said, “Week one over! Thank you for all the continued support, prayers, good energy and love you are sending our way.” She noted she had finished testing in Chicago and was going home to rest and spend time with her dog, Smitty. Initial results were good for the transplant. A week later, Molly was cleared for the transplant procedure. She started her first round of chemotherapy and had shots for five successive days in preparation for the stem cell harvest.
On “harvest day,” a temporary catheter was placed in her neck where blood was taken from the body, stem cells separated out and collected, and the rest of the blood returned to her body. Doctors hoped to harvest 2 million stem cells that would be returned to her body following chemotherapy treatment. She was excited to learn they retrieved 11 million. Molly explained that stem cells help the body recover faster after chemotherapy “wipes out the immune system.”
P.J. compared the chemotherapy and stem cell procedure to computer terms. “It (chemo) would erase and reboot her immune system. The stem cells would rebuild her system faster. The chemo gave a jolt to her body to stop attacking her.”
In her March 24 Facebook entry, Molly said her hair started falling out from the chemotherapy. “Actually very liberating and a lot of fun,” she noted. She decided it was time to go “GI Jane” and shave her head. After more chemotherapy, she was admitted to the hospital to receive her own stem cells.
April 8, 2009, was “stem cell day.” An IV was inserted and within 30 minutes, Molly’s stem cells were back in her body. As the stem cells were being replaced, the couple had been told that Molly might taste and/or smell of cream of corn because of the stem cell preservative. “She did smell like cream of corn,” P.J. laughed.
A few days later her immune system was recovering and Molly was released to a local hotel where she was monitored before returning home. “I was lucky and handled the transplant well. I had no infections and only had one fever. I was very fortunate.” She had antibiotics for 10 days to fight any infections that might develop as her immune system was rebuilding.
Although fatigued, she was glad to be heading home. She avoided big crowds and limited excursions outside. “My lifestyle was altered. Although it had been altered for some time since I had limited mobility before the transplant.”
Molly continues to receive physical therapy and hand therapy to regain mobility. “Since it is a connective tissue disorder, it affected my hands hard.”
Before the transplant, she had limited movement to open or close her hand. “Even before I got out of the hospital after the transplant I could see a difference. My skin was softer and I could move my fingers more.”
Before treatment, Molly could not open bottles; now she can. She’s even been able to swing a golf club. “I hadn’t golfed in three years.” P.J. said Molly’s first golf outing included seven holes of golf and her second outing was 11 holes.
Through physical therapy Molly can put on her shoes and socks and raise her arms higher and walk longer distances than before treatment. Her shortness of breath is gone.
“Before the treatment she couldn’t walk the dog. Now Molly keeps up a good pace,” P.J. said.
She has some permanent lung damage because of fibrosis. “It can reverse to some extent, but I will never have the lungs of what a 35-year-old should have,” Molly said.
When her hair started growing back after chemotherapy, it was darker and curly. “Before chemo I had shoulder-length, straight brownish-red hair. Now it’s almost black. I wanted to try a new hairstyle, and now I have one,” she laughed.
This month Molly returns to Chicago for a six-month follow-up. “There is no remission like cancer patients can have,” Molly noted. “But we can stop the progression.”
Treatment costs totaled around $200,000, the couple said. Out-of-pocket bills are between $10,000-$15,000, which includes travel and hotel expenses.
If all goes well at her October appointment, Molly will have a follow-up appointment in April and then yearly appointments for the next five years. Her local rheumatologist will follow-up every six months or as needed.
Because Molly works primarily out of her home, she went back to work part-time in May. By July she was three-quarter time and went back to work full-time, with some limited travel, last month. Her employer, Next Generating Consulting based out of Madison, Wis., has been supportive through her trials.
Although the chemotherapy has put Molly into early menopause, she still is glad she chose to do the stem cell transplant. She says that “anything is possible” in the future, thanks to her transplant.