BY JENNY AHLSTROM
Find a Myeloma Clinical Trial
After I finished my initial treatment and maintenance therapy, I started looking for my next step to prepare for myeloma coming back. I got online and found over 1400 hundred multiple myeloma clinical trials. Over 450 of those were open trials. Really? They were written in what seemed like Greek, in technical wording I didn't understand. I had no idea what the trial hoped to accomplish and which was right for me. I wanted a tool that would describe the trials in layman's terms and make the search simple for me. To find a study that would give me the best outcome became a multi-year search. I started Myeloma Crowd Radio so that we could all better understand the latest and greatest research being done in multiple myeloma. If we want a cure, the research needs to pulse faster. Because fewer than 3% of myeloma patients join studies, researchers can't come to conclusions as quickly as they'd like. This horrendous participation rate slows down new options for all myeloma patients. But understanding the studies was just one piece of the puzzle. The next step was to have a tool that would allow me to quickly and easily search for a study - to understand it, see if it was open to me and give me locations where I could join. SparkCures now offers an excellent tool to find multiple myeloma clinical trials. They allow you search by your status (newly diagnosed or relapsed/refractory), or by treatment type (immunotherapies, targeted inhibitors, transplant and others). The purpose of each study is described simply, which is a huge improvement over the way the studies are described on www.clinicaltrials.gov. Visually, it is easy to see how close the study is to FDA approval, showing green stage phases that start at Phase I and then move to Phase II, Phase III and on to FDA approval. Each study clearly shows the treatments drugs, the number of patients to be enrolled and the company or facility sponsoring the trials. Each study shows who is eligible, and includes a contact you can email or call to join the trial. Once you find a trial you are interested in, you can enter your zip code to find a facility nearest to you. They offer searches for active multiple myeloma, smoldering myeloma and MGUS. We have created a permanent page on the Myeloma Crowd website for this new clinical trial finder. You can find it under "Popular Links" and then under "Find a Clinical Trial." Most myeloma patients don't realize that waiting to join a clinical trial until you run out of options is a very bad idea. By the time you are out of options, you are also ineligible to join the trials because you now have more serious health issues beyond just the myeloma. Looking for clinical trials, even as a newly diagnosed patient at at every stage in your myeloma journey is just smart. Myeloma trials compare the very best "standard of care" to something potentially better and by the time the study has been created, it has been validated and there is great hope that it is potentially "something better." There are no studies in which patients receive no treatment or a placebo - that would be unthinkable for the myeloma patient. I encourage you to use this simple tool today to browse through the studies, educate yourself on the most recent advances, and plan for your next step in order to receive your very best care. Clinical studies are where we will find the greatest hope and ultimately, a cure.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).