The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long focus on MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, Cathy Nabuurs, a patient in the study, shares her MS stories.
A: I was diagnosed with MS in January of 2001 at the age of 28. I was beginning my career as a speech-language pathologist and had been married for about three years.
Q: What kind of symptoms prompted you to see a doctor?
A: I was experiencing vertigo, numbness and tingling in my extremities. Later on I had dexterity issues and difficulty with gait, muscle strength, pain and fatigue. When I was first diagnosed with MS, I was given a disease modifying drug. It was not very effective for my type of MS and my disease continued to worsen. In 2006, I was told that I had progressed to a more aggressive form of the disease known as Secondary Progressive MS. My body was now experiencing continuous progression without attacks or remissions.
Q: When and how did you find out about the stem cell trial?
A: I originally heard about the stem cell trial on a local news radio show. This was before I was officially diagnosed with MS but was experiencing symptoms and suspected something neurological.
Q: What was the process of being accepted into the trial?
A: There were three factors: I had to be physically fit (with normal function of the heart and lungs), I had to have Secondary Progressive MS, and I had to have had unsuccessful results with a disease modifying drug. I was accepted in January of 2007 and my family relocated to Ottawa for a year. My husband was able to come with me and my parents also were extremely helpful and supportive. They moved to Ottawa and lived with us for four months. This was great for our children because they had some sense of normalcy in their lives. Before departing for Ottawa, our friends and family organized a benefit event which raised significant money and was a huge help. Without all the support, this treatment would have been much more difficult.
Q: How did you prepare to enter the study?
A: My son was five years old when I entered the study and I needed to explain to him the purpose of our move and what was going to happen to Mommy in the simplest of terms. It was very difficult for me as a mother with two small children (ages five years and nine months). The worst case scenario was the slight possibility that I would die. Dr. Freedman and Dr.Atkins made sure that we didn’t make the decision lightly, which I greatly appreciated. And I was the 16th subject in the study, so I felt very encouraged. Physically, I had to undergo many tests and procedures to ensure that my body was up for the treatment. At each stage of testing, there was a chance that I would no longer be eligible for the treatment. The doctors had to be certain that my body was strong enough to make it through the chemotherapy. I was very nervous that the results of this testing would not be favourable.
Q: What were your expectations going into the study?
A: I was given a copy of the treatment protocol to review. Dr. Atkins and Dr. Freedman were very helpful with my questions. and reviewed each step so that I could fully absorb the information. This was extremely helpful and comforting.
Q: What was the treatment like?
A: It was a very difficult procedure, but also very beneficial and life changing. The first step of this process involved having my medical files submitted to the ethics committee. After we received their approval, I had to undergo many tests and procedures prior to moving to Ottawa, to ensure that I was physically fit for the transplant. In May 2007, the first significant medical procedure to be performed was a bone marrow harvest. It was performed as a precaution so that my bone marrow could be used to re-grow my existing immune system if the new one did not grow as expected or if for any reason the transplant was unsuccessful. The next step was the harvest of my stem cells which were then purified and frozen until my body was ready for them. The following step was the most risky and difficult. It was the eradication of my existing immune system through heavy doses of chemotherapy (25 doses), in order to make way for a new, healthy immune system. After the last day of chemo and a day of rest, I received my purified stem cells.
Q: How did you feel throughout the different steps of the study?
A: I was very nervous prior to starting the trial, however, once I arrived in Ottawa I knew that I was in very good hands. The doctors and nurses were very sensitive and caring to me and my family. The hardest part for me, emotionally, was seeing my children while I was in the hospital receiving the chemotherapy. It was wonderful to be able to see them on a regular basis, but it was tough to watch my oldest child, Ethan, who was five years old at the time. During our talk before we left for Ottawa, I explained to him why we were moving. This treatment was going to make Mommy better. This is why it was so difficult for him when he saw the effects of the chemotherapy. The look on his face clearly revealed his thoughts that Mommy was not getting better, only worse. It was also very hard for me to see my one year old daughter as well, because I wasn’t able to really hold her. During the chemotherapy treatment, I was very ill. On one particular day, I remember saying to my husband that I was finished with the chemotherapy and I wanted to go home. My husband looked at me and said “No…you started this ride and now you have to finish it”. I knew this deep down, but it was just a very hard day and I needed a push.
Q: What were the outcomes of the study for you?
A: The biggest change that I saw three months post transplant, was that I was no longer nauseated and I could keep my food down. Halloween night was the first time I felt strong enough to eat and keep food in my stomach. I think that it was sheer Mommy determination that helped me get through trick or treating with my husband and children. Last year, I was feeling stronger, but my immune system was still fairly new, and I would pick up colds and flues very easily. I was not able to receive the flu shot until this year because of the age of my immune system. This year, I feel terrific. I have had only a few colds. I feel stronger and as a result I am able to exercise and work a little bit, without getting ill. This August will be my third year anniversary of the stem cell transplant. There have been improvements, most noticeable has been the decreased fatigue. Prior to the transplant, I had to have naps at least five days of the week. Now, I don’t nap unless I am sick with a cold or if I’m extra busy with my children (ages 3 and 8). I’ve also noticed increased strength in my legs. The indisputable proof that this treatment has been successful is in the results of my bi-annual MRI scans. My brain and spinal cord show no new signs of the disease as there are no new lesions on any of my MRIs since the treatment.
Q: How has the study affected your life?
A: I have a new lease on life which is hard to put into words. My family and I have been given a second chance and I will always be extremely grateful for this and indebted to the doctors, nurses, family and friends who helped us make this a reality. At my last check up in Ottawa in February, my rating on the MS disability scale was a 2.0. Prior to starting the study, I was a 3.5. The transplant was successful and today I have an immune system which shows no signs of disease activity.
Q: What are your hopes for the future?
A: It would be nice to have more myelin repair, but I would be very happy if my body can stay the way that it is at this present time. I am just so relieved and overjoyed that I can play an active part in my family’s life. Without the support of my family, I would not have been able to get through the treatment. They helped me to fight this illness and the effects of the chemotherapy in the hospital.
Q: What do you hope people take away from your story? What do you want people to know about the trial and about stem cell science?
A: I would like people to know that there is hope. I am living proof of the success of this trial. I know that I am extremely fortunate and I will never take that for granted. I look at the results of this trial as miraculous. It still amazes me that I have a new immune system and my body has no memory of the MS. Sure I have the old lesions to contend with when I am ill or tired, but my hope is that they too will fade away physically and emotionally.
Cathy Nabuurs and her family were recently named the 2010 MS Family of the Year for P.E.I. Read about it here.