Myeloma Today: When were you diagnosed with myeloma?
Allan Weinstein: I was diagnosed around September of 2002. I had a symptom but it wasn’t a typical myeloma symptom. I was treated for an infection, but the infection recurred, and my internist didn’t like that. He discovered that I had an elevated protein level in my blood, so he looked further and ran some more tests. I had about 10% plasma cells, elevated IgG, and an isolated bone lesion in my sacrum, which was not painful.
MT: Did you require treatment?
AW: Yes, but I did not start treatment immediately because I needed time to understand what my treatment options were. Then I received three rounds of VAD, followed by three rounds of thalidomide and dexamethasone. I had my stem cells collected and, in July of 2003, underwent an autologous stem cell transplant.
MT: How have you been feeling since the transplant?
AW: My bone marrow biopsy is clear. My IgG has been stable in the 1600 to 1700 range, slightly above normal, for more than two years. I feel fine.
MT: Please tell us about your professional background.
AW: I am retired. In my first career, I had been an academician—ultimately, a full professor of Bioengineering and Orthopaedic Surgery at Tulane University, where I ran a research department. I did all the normal things that an academic scientist would do. I have a PhD and my background is all in bone replacement materials and devices, so the bone part of myeloma is something that I understood very well. In my second career, after I left academics, I went into industry. For ten years, I ran a company in the orthopaedic area. We took the company public and I retired. I was talked out of retirement to run a company involved in spinal disc prostheses. But now I am back in retirement and I won’t be talked out of it again, although I am still on the Board of another spinal company, and now I’ve joined the Board of the IMF.
MT: How did you come to be involved with the IMF?
AW: After I was diagnosed, I started seeking out information about myeloma online, and I found the IMF website. I attended the very first IMF Patient & Family Seminar that I could get to. I’ve been going to one IMF seminar a year ever since. That’s how I met Susie Novis. We got to chatting and we’ve stayed in touch ever since. Because of my background, I was asked to join the management committee for the Bank On A Cure® project. Eventually, I was invited to join the Board, which I was very happy to do.
MT: What is your outlook for the future?
AW: I’d like to see the IMF keep growing. Obviously, I would like to see a cure found, and the work that the IMF is doing will certainly help that along. Bank On A Cure is a great project. It has tremendous potential for understanding more about the disease process and for tailoring individual treatments. The IMF Patient & Family Seminars are a fantastic program. I tell every new patient I meet through my support group here in Phoenix that they should attend at least one seminar. The educational value of these seminars is incomparable. Also, they are an opportunity to meet people who are long-term survivors. When you are first diagnosed and you start reading the myeloma literature, it can be very scary. “Myeloma is an incurable disease” are devastating words. And some people fixate on the life expectancy statistics in the literature. They become very discouraged about their future. But there is no statistic that applies to an individual patient. Every patient is different. To meet people who are 10- or 15-year survivors is very encouraging. And I’ve met many long-term survivors at the IMF seminars! These are not isolated cases. I am also encouraged by the impressive amount of research being done in the field of myeloma. And the IMF is playing a big part in that. My outlook is very positive.