Hi, gang,
Sorry I coudn't post these past couple of days... my fever was so high that the computer seemed unbearable and blurry. But Steve passed along your messages of support and kept me going.
My temp is down today, although still not normal. It was just 101.4 at the last check. Still on those antibiotics, getting medication for my pain, and had another red blood cell and another platelet transfusion. Sometimes I think I need all of these transfusions because of all the blood draws! Had to pause there for another set of blood cultures.
I am going to start a little science discussion on stem cell transplants for autoimmune disease. It is probably too big a topic to post on one blog, so I may try to do a little follow-up day by day. Remember, too, that I'm not an expert. But, several people have asked for a little more information about what this is about, and why I am in Chicago for it... and those questions I will try to answer here.
http://www.allmystemcells.com/YJAUT_1067_1.pdf
I have placed a link here to an article which really helped solidify my decision to visit Dr. Burt in Chicago and pursue a stem cell transplant. It is called, "Hematopoetic Stem Cell Transplantations for Autoimmune Diseases: What have we learned?" Dr. Burt is the primary author, and certainly the opinions in the paper reflect his views. I also see an outstanding expert at UCLA who has a differing point of view with respect to some of the details. His stem cell transplant trial, the SCOT trial, is nationally enrolling and highly respected.
So, first let me say that this area is not without its controversy. I do not purport to know the answers. I am merely going to work on summarizing this paper (quite a bit!) and putting it into terms that are a little more accessible.
Stem cell transplants have been performed on cancer patients for the last several decades. I am getting a similar but different type of transplant--but an autologous (from my own cells), non-myeloablative (bone marrow would be able to recover function in theory), adult stem cell transplant. The theory is to "reboot" the immune system. It has learned, probably from an as yet unknown environmental exposure, that healthy internal tissues should be attacked. A new immune system will theoretically not go after these healthy tissues... if I can just avoid "the thing."
Initially, animal studies were done which showed that autoimmune diseases could be put into remission through this type of treatment. Unfortunately, even with the more aggressive myeloablative regimen, the one used for cancers in which the bone marrow is permanently destroyed, autoantibodies developed once again in some subjects.
So, second point: this is an experiment, and not necessarily a cure. The goal, rather, is to change the natural course of the disease.
Because I was experiencing fairly rapid decline in multiple organ systems, I was a great candidate for transplant.
Why? Well, first, let's hit on controversy #1 again. Using such an aggressive treatment for autoimmune diseases is considered by some to be too risky. Many people survive years or decades with scleroderma and have no life-threatening complications. These people should clearly not undergo a potentially life-threatening procedure. One way to do so is to look for recently diagnosed patients with rapid onset of diffuse skin disease or rapid development of internal complications. This population tends to have a much worse prognosis, so these people may think it is worth the risk of such a drastic procedure to change the course of their disease--slow it way down or even stop it.
In addition, I think that everything should be done to minimize risk to the patient and reduce life-threatening complications. Others would perhaps rather shoot for the moon than risk a huge, if safer, procedure, only to see their disease come back.
Next, the ideal candidate would be early in the course of their disease. While the very first safety studies were done on patients who were clearly in dire straights, most researchers now are actively looking for patients within the first few years of diagnosis. This is not just because we know they have the worst prognosis if they are already really sick, but also because the transplant is most effective in the early, inflammatory stage. Nothing can really reverse scarring. So, the disease you have you mostly keep, but the disease you were going to get you may be able to stave off.
Now, my last point for tonight. There are several types of stem cells transplants, and each differs in its goal, success rate, and danger. Not every type is appropriate for every disease for a variety of reasons. I have chosen what I think is the least dangerous type of stem cell transplant: adult, autologous, non-myeloablative. Other options are out there, and many people think that the myeloablative regimen, which contains total body irradiation, may be more effective. As I mentioned, in scleroderma these two methods are currently being compared, and I am part of it. I chose Chicago for this regimen. For me, it was the right choice but I know many other patients and researchers feel differently.
Let's keep funding research so we can get to the answers!
