I attended a very detailed seminar last evening, sponsored by the Leukemia & Lymphoma Society. Held in Brooksville, Florida (about 45 minutes north of Tampa), the event was hosted by Lourdes Arvelo, Director of the Suncoast Chapter of the LLS, along with a group of positive and helpful volunteers, led by the very friendly Jack and Linda. Titled, “New Directions for Blood Cancer Therapies, the content leaned heavily toward understanding clinical trials and multiple myeloma therapies. The speaker was oncologist Dr. Vikas Malhotra from the Florida Cancer Institute. Dr. Malhotra did an incredibly thourogh job–if anything, his presentation was too detailed for the casual observer. Here are a few important things I learned during the seminar:
1) At the ASH conference in December, my impression of European myeloma studies I attended was that their use of novel therapy agents lagged behind us here in the United States. Surprisingly, Dr. Malhotra feels this isn’t the case for many of the other blood cancers–especially lymphoma and leukemia. He gave several examples of how British, Italian and Eastern European researchers are the ones developing the majority of the newest drugs in this area–primarily because of more liberal consent laws which allow their clinical studies to move forward more quickly.
2) The LLS supports blood cancer research in 11 different countries. Their goal is to help blood cancer patients world-wide–and they don’t care where they need to go to help develop new drugs that can help.
3) I had a clear understanding about Stage I, II and III studies going into the seminar. What I didn’t realize is Stage IV studies are used to monitor a drug’s progress and efficacy once it is approved by the FDA.
4) Most importantly for myeloma patients, the LLS offers expert help for matching a patient with available clinical studies. I knew they had an online clinical trial search tool (called “TrialCheck”). What I didn’t know was that if you call (800) 955-4572, between 9 AM and 6 PM Monday through friday, Eastern time, you can talk one-on-one with an IRC Information Specialist who will help guide you through the maze of available clinical trials.
Now that it looks like my multiple myeloma has returned (Did it ever leave?), I think I will call an IRC Specialist myself and see what we can figure out so I can more effectively weight my upcomming treatment options.
Networking with other patients and caregivers is so important! A reader, named Richard, sent me a flyer and then reminded me about the seminar–which lasted almost three hours and included a tasty and healthy meal. Richard is a high school teacher and newly diagnosed myeloma patient. He brought his wife and brother, who was visiting from Boston, to the seminar as well. It was an intense, but enjoyable experience. Telephone and computer conferences are convenient. But if physically possible, get out to a live LLC, IMF or MMRF program whenever possible. There is no substitute for sharing experiences with other patients and family members!
Feel good and keep smiling! Pat