GRIFFIN, Ga. - It’s a major gamble. This weekend, Griffin, Georgia, father of 5 Mark Rosenthal board a plane to Mexico, banking everything on a high-risk, experimental treatment designed to stop Multiple Sclerosis in its tracks. He’s raised $60,000 to pay for it. Rosenthal says if you’re skeptical, so were they, at first.
“Especially my wife,” says Rosenthal. “(She said) ‘This sounds crazy! You're going to do chemo and about kill yourself and go to Mexico?'"
So, why take this risk? Diagnosed with MS 4 years ago, Rosenthal says his immune system is gradually attacking and destroying the protective lining around the nerves in his brain and spinal cord. He now walks with a cane, and needs a chair for distances.
"It's changed my life a lot,” says Rosenthal. “I used to love being outside and active, and I had to quit all those things. I couldn't get hot. You have brain fogs some days, where you forget your own wife's name."
But last summer, Rosenthal met Erika Grant, a 53-year old Butts County, GA, MS patient who'd just come back from a stem cell transplant in Russia.
"Before I went, I had uncontrollable shaking in my hands,” says Grant. “And my hands felt like boxing gloves. They didn't move."
5-years earlier, Grant's MS had relapsed, returning with a vengeance.
"I was one step away from a wheelchair,” she says.
Today, Grant is walking on a treadmill, just ten months after undergoing HSCT, a hematopoietic stem cell transplant. It’s a procedure still in clinical trials here in the US, but it’s available -- for a price -- abroad.
"So I applied to 7 countries that were doing this procedure,” Grant says. “And Russia accepted me."
Last June, Grant's stem cells were collected, and then she was given high-dose chemotherapy to wipe out her malfunctioning immune system. Then, those same stem cells were reinfused back into her body.
At first, as her doctor warned, nothing happened.
"I kept saying to my husband, 'It didn't work, it didn't work,'" Grant says.
But, six months out, Grant had an MRI. The results, she says, were remarkable.
"No new lesions, no progression, it (MS) has been stopped,” she says.
Shepherd Center neurologist and MS specialist Dr. Ben Thrower agrees HSCT may be a very promising tool down the road, especially for patients with early-stage, aggressive MS. But, he warns, tweaking the immune system can be risky, and there are a lot of unknowns with stem cell therapies like HSCT.
"The devil is really in the details,” Dr. Thrower says. “So, how do we wipe out the immune system? Can we do it safely? Are there long-term side effects from doing that?"
Dr. Thrower says if you want to try this treatment, go with a clinical trial, where patients are carefully selected and monitored. Because a stem cell transplant may not help people with longer-term, well-established MS.
"So it's possible that some people going to a clinic where they're paying large sums of money could be putting themselves at risk of complications with very little potential for benefit from it,” Thrower says.
Mark Rosenthal believes a stem cell transplant is his best shot, worth every penny of the money his family and friends have raised. He says he’s talked to many patients like Erika Grant.
"I've gotten to see a couple of them that used to be in wheelchairs and now they walk and run,” Rosenthal says.
He's hoping his gamble -- will pay off.
The MS Society says stem cell therapies are promising, but right now there are no approved stem cell therapies for M-S. And, experts warn, even in a controlled setting like a clinical trial, there can be substantial risks.
Northwestern University is heading up an international trial of HSCT.
But, Mark Rosenthal says, with his MS progressing, he doesn't have a lot of time to wait for the treatment to get through clinical trials. He needs it now. So, Rosenthal is leaving for Mexico this weekend.