Treatment trial for lupus uses patient's own bone marrow
July 6, 2004
The Huntsville Times
At 14, Heather Parsley, now 30, could predict the rain better than a radar could: The change in humidity and pressure would make her bones ache.
She didn't know it then, but those aches were probably the early action of systemic lupus erythematosus - for which she was genetically predisposed. It was triggered by who knows what to set her own cells to attacking her organs and swelling her joints.
When she was in her 20s, the lupus dragging at her like weights, doctors told her she was just lazy. They told her sister, Pam, now 39, and, like Heather, now recovering from lupus after an experimental stem cell transplant, that she had multiple sclerosis, then that it was just in her head.
It was in her head, Pam later found out: The lupus had begun to tear down her vascular system and attack her brain.
"Now I know why I couldn't think," Pam Parsley Steelman said Thursday, joining her sister at the store in Fayetteville that Heather runs for their parents, Joe and Gay Parsley. "I'd stand there and couldn't talk. I was having little strokes, and my brain wasn't getting any blood."
By the time they were in their 20s, doctors had diagnosed the lupus, but warned them there were few ways to treat the condition. They learned they probably had 10 years to live. By the summer of 2002, both women were at the point that doctors told their mother just to take them home and keep them comfortable. That there was no hope.
" 'No' wasn't an option for our mother," Steelman said.
Experiments in Chicago
Gay Parsley, their mother, who worked as materials cost manager for years at Avex Electronics, was determined to find help for her children.
She had watched, from afar, as her husband's sister died of lupus. She wasn't going to let that happen to her daughters.
"I searched the world," Gay Parsley said from her home Wednesday night. "They might have been grown women, but they were still my babies."
Hours of computer research and phone calls helped her uncover an experiment at Northwestern University in Chicago. Oncologists Richard Burt and Ann Traynor, now professor of medicine at the University of Massachusetts, had noted that a patient they were treating for leukemia was also cured of her lupus after treatment.
Burt and Traynor worked with a treatment that chemically kills a patient's own immune system, then they harvest the patient's own stem cells. Stem cells are amazing building blocks the body makes that can become tissue in several organs. With the patient further chemically depleted of the natural immune system, the washed and screened cells are re-injected into the patient.
The treatment had never been used for an auto-immune disease such as lupus, but the two won part of a $9 million National Institutions of Health grant allowing them to try it on 10 patients.
That's when Gay found out about it.
Once the researchers were approved for their third group of 10 patients in 2002, Parsley had battled to get her daughters' names onto the list. By that time, Heather had been mostly bedridden for nearly two years; Pam was near death in Cedars-Sinai Hospital in California, where she lived. And both were ballooned from the side effect of the steroids that helped fight their chronic pain.
Pam, who had her transplant in November 2002, just months after Heather's transplant, thought the procedure wouldn't do much good.
"When we were driving out of Fayetteville, I told Mother I was not leaving this town without seeing my best friend," Pam said.
So Gay drove her daughter to the school where her friend teaches, and watched in tears as the teacher came out to the car to say what each feared was their last "good-bye."
But the transplants worked.
"I felt different almost instantly," Heather said.
Help out there
Both had to stay in isolation as their immune systems built up. But both were able, in six months, to get off steroids. Both have watched the markers in their blood continue to decrease, showing a strong remission in Pam, and an increasing lack of the disease at all in Heather.
Pam's vascular system is getting stronger, though she will get another transplant to help restore vessels lost in a leg doctors nearly amputated. Heather's pain has disappeared, and her heart problem, for which doctors had been recommending surgery, has healed.
Out of the first 40 transplant patients, 36 appear to be in remission from lupus.
Apparently the stem cells did what researchers knew they could do: Find their way to damaged parts of the body and make them new again. The women have their energy back. They can concentrate again.
And both look at the world with the eyes of women back from the grave.
"My doctor in California looked at me in L.A. and said, in his Russian accent - this is the best-known vascular surgeon out there - 'If you don't believe in God, you need to,' " Pam said. "That just sent cold chills. I've never heard a doctor be so humble."
Neither knows how long their good health will last - hopefully the rest of their lives, possibly only until the lupus uncoils from some cellular lair in their bodies again.
"I think they're learning as they go," Heather said, referring to the doctors' prediction of how they will do.
Both women hope their experience helps people understand that stem cells can be harvested from other places than the fertilized human eggs that raise so many ethical questions. While those embryonic stem cells are capable of more dynamic growth and a broader range of transformations once they are introduced into a human body, stem cells can also be harvested from a person's own bone marrow.
"It's a marvel," Pam said. "That's what people need to know. There's
help out there. I don't know why I've been so blessed. I think it's to
guide other people and help them."
Copyright © 2004, The Huntsville Times