In 2000, just 4 years after being diagnosed with an early, aggressive form of multiple sclerosis, Jennifer Molson started having relapses. Switching to a new, higher-dose medication provided no relief.
“In 2001, I stopped working,” she recalls. “My partner [now husband], Aaron, was bathing me, dressing me, cutting up all my food. I had no feeling from the chest down, bladder control issues, bowel control issues. I remember making a bowl of cereal, putting it on my walker, and dropping it on the floor. And I just sat on the floor and cried.”
A neurologist at the Ottawa, Canada, hospital where Molson was getting treatment suggested she join a clinical trial that was exploring whether a stem cell transplant could get her condition under control.
“The doctors weren’t trying to give me my life back; they were trying to stop my disease activity,” Molson says.
The procedure, known as hematopoietic stem cell transplantation, uses high-dose chemotherapy to zap your nonworking immune system. Then you get a transplant of hematopoietic stem cells, which are found in bone marrow. The goal is to restore more normal immune function, says Jeffrey Cohen MD, director of the Experimental Therapeutics Program at the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic.
Worth the Risks
Stem cell transplantation can work really well, but it does have risks. In addition to side effects like nausea, hair loss, and infertility that are common with chemotherapy, there’s a small chance of fatal complications.
The latest research shows that for more than 20 years, autologous hematopoietic stem cell transplant, or aHSCT, has been an effective treatment for those with highly active relapsing-remitting MS that doesn’t respond well to medications. It could also be useful for treating progressive forms of the disease.
At the Cleveland Clinic, Cohen is leading a clinical trial to show that the procedure, which costs upward of $150,000 and is rarely covered by insurance, is a safe, cost-effective approach to treating MS.
In some comparisons, aHSCT appears to work better than the most potent available medications, Cohen says. Stem cell transplants have much higher remission rates, compared to the available medications.
People with MS who get stem cell transplants might get “potent disease control benefits” that last up to 10 years with no need for additional medication, he says.
Molson knew the risks were high but, she says, “I didn’t have a choice. I’d tried everything else; this was my last hope.”
She got the stem cell transplant in May 2002. She was only the fifth person in Canada to have the procedure.
As part of the treatment, Molson spent a month in the hospital and then returned daily for blood draws to find out if she needed blood transfusions. Her side effects ranged from severe nausea to bladder and kidney infections. The chemotherapy also put her into menopause at age 27.
In the months after the stem cell transplant, she started noticing subtle changes. She could go grocery shopping without extreme fatigue and walk to the mailbox without using a cane for balance. Three years after the stem cell transplant, she started driving again and returned to work.
“It wasn’t like I got a stem cell transplant and started running down the hall,” she says. That’s not how it worked. “It was these gradual milestone achievements, these little steps. That was when doctors started to realize that something cool was going on, that they were starting to see recovery in patients.”
For Molson, little steps led to big leaps. She went from using a wheelchair and walker to swimming, kayaking, and downhill skiing.
“I was doing things that I never, ever in a million years thought I would ever be able to do again,” she says.
As part of the research study, Molson had an MRI every 6 months for 10 years. The final MRI, which was in 2012, showed no new disease activity. She hasn’t taken any disease-modifying drugs since the stem cell transplant almost 20 years ago.
“I’ve been in a lasting remission for 18 years,” she says. “I’ve been living longer in this lasting remission, than what I actually did with my active disease period.”
Although Molson had life-changing results from the stem cell transplant, the treatment is not a one-size-fits-all approach for everyone living with MS. Cohen says there are still a lot of unanswered questions. And he advises against seeking treatment from commercial stem cell clinics.
Molson is also careful when talking to others about stem cell transplants for treating MS.
“I can’t say enough about it, it gave me my life back,” she says. “But the treatments that are available now, compared to when I had my transplant, are so much better and different and, like my neurologists said, ‘Why would you want to use a nuclear bomb when you don’t have to?’ It’s not for everybody.”