The IMF Atlanta Patient & Family Seminar was held on March 8-9, 2002. This seminar originally had been scheduled for September, 2001, but had to be postponed because of the events of 9/11.
This seminar was my second chance to attend one of these very informative IMF learning and networking opportunities. I attended my first IMF seminar here in Atlanta about three years ago and found it to be extremely enlightening. The IMF staff was very friendly and very well organized. The registrants of the convention covered people across the entire treatment spectrum. There were people there who had been diagnosed as recently as a couple of months ago and people who were survivors of 15 years.
The seminar was a fast-moving one with information being presented by an extremely capable and well recognized myeloma expert faculty that is unrivaled. Each session lasted about 20-30 minutes and there was always an opportunity to ask questions. I must admit that sometimes the questions got a little repetitive and off subject, but what can you expect when you’ve got 300-400 concerned and anxious people in attendance – many of whom really need personal and subjective advice.
The first session was Myeloma 101, a primer of all the basics that we need to know and tend to forget if we’ve not focused on it recently. It was very good for me because I am one who tends to move away from the “Myeloma World” and on to living my life for periods of time when I am really feeling well. When I was initially diagnosed back in May, 1996, I spent hours poring over materials and data trying to learn something about this little-known and devastating disease. Since then, I have had a stem cell transplant and various regimens of chemotheraphy. I have been on thalidomide since August, 2000. It’s been a lifesaver and has stabilized my counts, and I now enjoy a good quality of life.
The next session was Standard Therapy by Dr. Robert Kyle of the Mayo Clinic. Dr. Kyle covered the various treatment options that one has when diagnosed. I took note of his thoughtful comparisons of the various treatments that I had chosen and those that had been chosen for me since my diagnosis.
Dr. David Vesole addressed the topic Transplantation and covered it well. I found the talk interesting but doubt that transplantation is something that I would choose to do again. The remission after my transplant lasted about eighteen months and I understand that the remissions get shorter with each transplant. Never say never, but it now seems to me that if you can maintain control of this disease by utilizing any of the other less invasive methods of treatment, then that certainly is the way to go.
There was also a session conducted by Dr. David Roodman covering Bone Disease. Zometa®, recently approved to help myeloma patients with bone disease, is given in just 15 minutes versus the two hours that Aredia® takes. That’s really convenient for a lot of people. However, having had a kidney issue in the past, I am going to play it safe and stick with Aredia®. If it ain’t broke, don’t fix it!
Dr. Alec Goldenberg talked about the new Goldenberg Snare Coil that has been developed to help make bone marrow biopsies a lot more bearable. Sounds good!
The highlights of the seminar, from my perspective, were the sessions that focused on Novel Therapies. Thankfully, there are many: PS-341, Genasense, Beta LT, Mylovenge, Neovastat, O-6-benzylguanine, Panzem®, Trisenox®, and others. All of the above mentioned are already in either Phase II or Phase III trials. The trial results with PS-341 (Millennium Pharmaceuticals) have been so good that they are widening the Phase III trials to include more medical facilities and more people across the country. The problem there for me is that you are not eligible for the trials if you suffer from neuropathy. I do have a neuropathy problem as a result of taking thalidomide.
Not to worry. With all of the new drugs in trial, and with more money than ever before going into myeloma research, I left the seminar feeling more optimistic than ever. It is inevitable that some drug will be discovered to control multiple myeloma the same way many chronic diseases are controlled. I left this seminar feeling very informed and very confident that there is more reason than ever before for real hope.