Her treatment stems from within
Alecia Warren | Hagadone News Network | UPDATED 13 years, 9 months AGO
If someone had asked Rami Amaro last year if she would do it again, she would've said no.
The experimental stem cell treatment for her multiple sclerosis was agony, she said, at best.
First chemotherapy that left her languishing in illness and confusion. Then a year of waiting for her immune system to grow back, a parade of colds and flus, tainted by the question of whether her stem cell injections would have any success slowing the progression of her disease.
"If you have chemotherapy, usually in a few weeks a doctor can tell you if it has shrunk your tumor. With this, you go through this horrible procedure and for a whole year, you don't know if it works," said Amaro, 42. "So I'm thinking, 'Did it work? Did I make a mistake?'"
At her recent follow-up exam, the Hayden Lake woman and former attorney got her answer.
It looks to be working.
"They found no new brain lesions, whereas before those were increasing every year," Rami said, which means that T cells are no longer attacking her brain and impairing her basic motor functions and cognitive abilities. "To have those lesions stopped - nothing else could have stopped them. So truly it is a miracle."
The overall impact of her treatment will continue to come to light over the next few years.
Her symptoms could disappear, or stay the same. She could get cancer, caused by the chemotherapy's affects on her immune system.
"The cure for cancer causes cancer. I just don't get it," she said.
But it's enough for now, said her husband, Lance.
"She got an extra year from her disease progressing. That's how I look at it," he said. "If it could even postpone it 10 years, that's her chance to live a normal, longer life."
Taking a risk
The mother of four had known all the risks going in.
About three in 10 have died going through the new, experimental treatment, which she and only 22 others nationwide ventured into last year.
The process involved harvesting her stem cells and then stripping them of their T cells, which have been harmfully crossing her brain barrier.
That followed with destroying her immune system with chemotherapy, and then injecting the stem cells back again, with the hopes that new, "naive" T cells would grow and work as they should.
"That's the study part of this," she said of the T cells removed from her blood. "If we do this extra procedure to remove every part, will we be more successful?"
The stem cell harvest at Fred Hutchinson Cancer Research Center in Seattle was hard on its own, she said. It was preceded with a marathon of exams to ensure she was up for it: Liver, kidneys, gynecological exam, MRIs, ultrasound.
"They must have taken 100 vials of blood," she said.
But the chemotherapy topped that.
The first day she started receiving four types of chemo last January, she said, she seemed unaffected.
"I was feeling fine," Rami remembered. "I thought, 'What does everyone complain about?'"
By day six, it hit her. Hard.
Constant vomiting, a 104 temperature that caused hallucinations and had her confusing her doctors with gibberish questions.
Her hair fell out in clumps.
It was hard to watch, her husband confessed.
"There were some points it was very doubtful if you were going to make it," he said, seated by his wife in their dining room. "It was two bags a day, and technicians would come in and were all suited up because if it (the fluid) gets on your skin, it burns you. And I'm thinking, 'They're pumping this through your veins.'"
It didn't help that in the middle of her treatment, her husband's insurance threatened to drop the coverage it had promised.
"He (Lance) had to deal with that. I was so out of it, and he kept trying to ask me all these technical questions," Rami said, adding that the family had to sue to regain their coverage.
After a few weeks, the chemotherapy had stripped her immune system completely.
Then it was a matter of injecting her with bags of cream-corn smelling stem cells.
"They call it your birthday, because you're getting born again," Lance said. "You're getting a whole new immune system."
She spent still several more weeks in Seattle, first in a quarantined room in the hospital, and then in an apartment complex for transplant recipients next door to the hospital.
"I was mentally in a fog, just lying there," Rami said. "I felt like I was in prison."
Throughout it all, her husband and mother cared for her around the clock. Back home, friends and family watched over their children: Hayden, 17, Savahna, 15 and Ethan, 5.
Their oldest, Hudson, is 20 and attends college out of state.
"Our whole family has been amazing," Rami said. "You definitely need a strong support system."
Keeping it clean
She returned home in March with a wisp of an immune system.
To avoid exposure to illness, Rami couldn't leave the house for three months, and her youngest had to be pulled out of school for even longer.
She also had a thick book of items she couldn't touch, eat or be near.
"When I could be around my kids again, it was constantly, 'No, mom, you can't touch that,'" she remembered with a laugh.
The family grew accustomed to scrubbing every surface to keep bacteria at bay, she added.
"We probably spent $1 million on Clorox," she said.
Still, she spent the entire year sick, she estimated.
And despite her immune system being that of a newborn's, the treatment had also pushed her into menopause practically overnight.
"They told me that it would make me infertile," Rami said. "I never put two and two together to realize that that meant menopause."
Rami's immune system still isn't fully restored, though she just received some immunization shots.
She has really hung in there, her husband said.
"I think her youth helped. Someone in their 40s could handle this better than someone in their 60s or 70s," Lance said. "If you're not a strong person, I wouldn't recommend it."
Looking forward
Her MS symptoms haven't gotten better.
Her legs still feel like rubber sometimes. Her arms fatigue quickly, even from spinning a spice rack.
She forgets basic words, and the names of her friends.
And her general awareness is dulled, to the point that when a pot holder was on fire in front of her, she didn't realize it until her child pointed it out.
"They already told me, the purpose (of the treatment) was to keep the MS from getting worse, not to heal the old damage, though that has happened in some cases," she said. "They said I wouldn't be able to tell (if the symptoms improve) until two years."
It could be a long time before Rami, who left her career as an attorney because of the MS, returns to work.
Still, Lance believes she has helped advance MS treatment.
"Hopefully it will pay off not only for Rami, but all MS patients," Lance said. "It looks like the future of treating MS."
The treatment cost more than $200,000. Her husband's insurance covered all but about $77,000, she said, and friends held a fundraiser that brought in $12,000.
"Between the insurance, the fundraisers and our savings, we were able to do it," she said. "If it means I get to keep my vision, that I don't have to end up in a wheelchair, that I don't get to the point where I don't recognize my loved ones, I'll pay anything."
Now that she has proof of success, she added, she would do it again.
"Now that I know it's worked, I'm definitely glad I did it," she said.