I went on oral chemo for about three months, but there was no change. It was my decision to stop. I began a protocol for Bosenten, which is a drug for PAH. In order to get Bosenten you had to prove you had PAH, since it was not approved for Scleroderma technically. I was barely over the line, but I qualified. Imagine someone being happy because they had another life-threatening disease.
I started taking it on May 1 2003. In 10 days I noticed a difference: I felt great! I had felt so bad for so long I didn’t really know what good was. Bosenten allowed me to continue teaching normally. I had by this time acquired an oxygen tank, to use on demand. I also used a concentrator at night. One of the doctors suggested I take up kayaking to build up my upper body. My idea of enjoying bodies of water is to either be along side them or on top of them. Not in. I can swim, I just don't enjoy it. Now I know it is because of my lung situation . But once in the kayak, what a joy. It was peaceful. I did not even need the oxygen tank. I could paddle and was not out of breath. Apparently this was because I was using different muscles.
That summer there was talk of a lung transplant. I researched that and was not thrilled at the information. I was not willing to undergo this operation when the odds were so bad. Later that summer Friedman told me that there was a treatment which wasn't quite ready, but for which I might be a candidate. If I could stay healthy until then, I might not need a lung transplant. It was called an Adult stem cell transplant.
My condition continued to deteriorate during the next year. My lungs were getting worse, requiring more and more oxygen. The fatigue would do me in. I had to lie down between classes. Walking was too much exertion. I stopped cooking, I didn't want to eat much. My husband had to assume the chores. I would get home from work, fall dead asleep on the couch for three hours, wake up, eat dinner that someone else cooked, fall asleep again, wake up for the news, and go to bed. I had no life, and what I had I spent on the couch. My face started to tighten. I could not open my mouth to clean my back teeth. My hands were getting worse. I would sew my fingers to the material I was working on, or drop things. The favorite seemed to be full plates of food. I stopped singing. I stopped all outside activity. I stopped playing the piano. My handwriting was a mess. I could not open jars. I could not do any fine motor skills. Worst of all, I didn't have the stamina to teach the students. I was no longer leading the parade of kids, but chasing after them. It was clear I would have to retire.
My husband and I talked about the transplant. I was reasonably healthy, except I couldn't breathe. It seemed to me that if one had a transplant when one was healthy it would have better results. He agreed. No one could really say if this reasoning was right or not. But we decided to go for it anyway.
In 2004 the trial was ready. In June Friedman and I decided I would go to one of 5 facilities which were doing the trials. He had picked the program at UMASS Medical Center in Worcester for two reasons: it was the closest, and that was where the principal investigator, Ann Traynor was working.
Friedman explained how a clinical trial worked. This one was a single arm, meaning everyone got the treatment no one got placebo. I was very excited. I called the other doctors to tell them of the decision. They were, to a greater or lesser degree, not supportive. I was very disappointed. I had been fortunate to have a team with whom I could communicate well and be part of the decision making process. Their reactions meant I would have to go on without them. I was very sad at this.
To be fair, their reactions were out of concern for me. There was no track record. What about mortality rate? What happened if it didn't work? I asked Friedman that. He took a big breath and said, "we'll find out. You're going to be a pioneer."
I went to Massachusetts and met Ann Traynor. She had come recently from Northwestern University in Chicago, where the rest of her research team is. She spent a long time reviewing my records. She looked up and said, "you are definitely a candidate." She examined me, and then told us how this whole thing came about.
A bone marrow transplant requiring painful invasion of the hip area has been replaced in most cases by the minimally invasive stem cell transplant. The stem cell transplant has been used for Cancer since the late 60's doctors began to notice something strange: if a cancer patient had a bmt and also had ra, their ra disappeared! They decided to try it on LUPUS patients. The results were startlingly effective. Patients' symptoms were arrested, and there was lung improvement. After 7 years of testing they decided to try it on Scleroderma patients with lung involvement. As of November 2004 there were 10 people who had a sct, all were alive and improving. This means the mortality rate is zero.
She then told me we would use my own stem cells, eliminating the need for a donor, and also anti-rejection medicine. My symptoms would be arrested, the fatigue would go away, my skin involvement would return to normal and my lung function would improve. She could not tell me how much improvement because there was only three years of data, but this was 60 per cent more than I had hoped for. I was ready to go now.
Understand we are talking about adult stem cells. Every kind of stem cell transplant in to date is done with adult stem cells. Embryonic stem cells are not deemed useful to this point. This may be for the next generation to uncover.
Legislation has now mandated the founding of the National Cord Blood Bank for stem cells and has over 150,000 donors to date.
I was scheduled for the transplant in July of 2005. I
was to be number 11, first on the east coast. There was a lot of red tape
with FDA and also the hospital. I would be the first person at UMASS to
have this done. We needed permission. It was granted in June 2005, I was
up there three weeks later. (Continued)
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