Guest post by Cathy Nabuurs, Canadian Bone Marrow Transplantation trial participant
The opportunity to become a participant in the Canadian Bone Marrow Transplantation (BMT) trial was a dream that came true. I’ll never forget the conversation I had with my Neurologist, Dr. Freedman, in 2005. I was told that my multiple sclerosis was changing and it had progressed to a more aggressive form of the disease, known as secondary progressive, which means continuous attacks without relapses. Although it was difficult for my doctor to be certain, based on my MRI’s, he felt that I might end up in a wheelchair within 10 years. When I had my last severe MS attack, during the first trimester of my second pregnancy, it felt like my final warning. On top of the regular symptoms I would experience during an MS attack (extreme fatigue, pain, numbness and weakness in the upper and lower extremities), I was unable to move my right leg or use utensils to cut my food. I remember sitting down with my husband and saying, “that’s it, we need to go for this – investigate the BMT trial further, and grasp this opportunity before it’s too late.”
I was the 16th participant in the trial. I felt very nervous at first, but was confident in the results of the other participants. I look at those who went before me as the true hero’s; the people who took the plunge when no one knew what to expect as a result of the procedure. Yes, something could have gone wrong as some participants remained ill from the effects of the chemotherapy, and one died as a result of liver complications, but it was a risk I was willing to take for myself and my family.
As a participant in this study, our family needed to move from Prince Edward Island to Ottawa in 2007, where I received my first round of chemotherapy, followed by a bone marrow harvest. After that, they collected my stem cells and put them through a machine at Canada Blood Services where they were purified and frozen until my body was ready to accept them again. Then I went through 25 doses of chemotherapy to remove my immune system, because that’s what is malfunctioning in MS. Your immune systems doesn’t work properly and it attacks the myelin, the protective covering around your nerves, in the brain and spinal cord. Once the doctors were certain that my immune system was destroyed, my stem cells were thawed and returned to my body. After some time, I regrew a new immune system and the transplant was a huge success. I was required to have all of my inoculations again, as if I was a newborn.
It’s amazing to think that it has been almost 10 and ½ years since my transplant. My MS has stopped progressing; I’m not on any treatments for my MS and I have not had any new signs of disease activity. The only thing that reminds me of my MS is the residual damage I had before the treatment. The damage that was done to my right leg before the transplant cannot withstand the aging process. This means that I use a leg brace, and sometimes require a cane.
I am extremely fortunate. I’m an active mom who works part-time and volunteers at my daughter’s school and at a local library, in addition to the jobs within the household and helping my husband take our children to their extracurricular events. I no longer have to worry about that next attack around the corner.
I know that if I hadn’t participated in the trial, there would be no way I’d be where I am today. My advice to others who’re thinking about receiving this treatment would be to evaluate your life at this moment as well as your support system. I’m lucky to have an amazing support system and it’s what kept me going.
Dr. Atkins and Dr. Freedman saved me, and gave me back my life. I’m a strong advocate for MS research and especially the BMT trial and what it has done for me and my family. The BMT trial is responsible for the immunoablation and autologous hematopoietic stem cell transplantation (IAHSCT) option for people with an early aggressive forms of MS, like I had. It’s miraculous really.
For more information about the BMT trail, visit: https://drkarenlee.ca/getting-personal-with-a-promising-treatment-approach-to-ms/
For more information on eligibility for IAHSCT, visit: www.ohri.ca/newsroom/newsstory.asp?ID=584