Yesterday morning Gretchen and I fought miserable weather and rush-hour traffic conditions driving to the Farber for my scheduled infusion of iron dextran. The total procedure took over 5 hours, so we had the pleasure of hitting the afternoon traffic on our way home as well. Fortunately, I had no side effects or allergic reactions and the procedure went smoothly. Hopefully, this will solve my persistent anemia without the need for any more iron pills. We'll see. I head back to the Farber again on Monday for my monthly checkup and Zometa infusion. Mary McKenney didn't want me to get the iron dextran and Zometa on the same day, necessitating the two trips.
I keep getting comments on my blog post from August 28, 2012 entitled "Myeloma-Lyme Connection? I Say Yes!" I suspected that the reason for this is that people searching for any connection between Lyme Disease and MM must come across that particular post. To check that, I Googled "multiple myeloma lyme connection". Guess what the number 1 Google result is. Yup, that's the one! I don't know how it got there (I sure didn't pay Google to push it up the list), but I'm glad because it keeps attracting comments. I try to respond to these comments, so the result is a continued dialog between me and other Lyme/MM sufferers. I got another thoughtful comment the other day from a woman whose 15-year old daughter was seriously ill with Lyme Disease and had MGUS as well. After extensive treatment for the Lyme, the MGUS disappeared. Hmmmm.
I followed up with the Multiple Myeloma Research Foundation (MMRF) as I said I would in my last post. I talked to an RN Millicent and suggested that they should change their list of general health categories to include Lyme Disease and other autoimmune disorders. While she was polite, I detected a distinct lack of enthusiasm for my suggestions. She said she would follow up, but I don't expect to hear back any time soon. My next step is to start sending emails in the hope of getting some positive response. I'll let you know what happens.
While at the Farber yesterday, I read an article in their newsletter about a novel compound the prevents MM from metastasizing into the bones. Myeloma cells originate in the bone marrow, get into the blood stream, and eventually return to the bones, where they can form numerous lesions. A substance called stromal cell-derived factor-1 (SDF-1) is a protein that attracts myeloma cells. Mice with advanced MM had sharply higher levels of SDF-1 in the sites in their bones where metastasis had occurred. Farber researchers, headed by Dr. Irene Ghobrial, are testing a substance called olaptesed pegol that binds tightly and specifically to SDF-1. Lab experiments with mice have shown that olaptesed pegol alters the bone marrow, rendering it uninviting to myeloma cells, leading to prolonged survival. It is now being tested in a clinical trial with MM patients, with more trials to come. Great! I'll keep an eye out for results from these trials.