During yesterday’s blog, I focused much on details of studies, trying to absorb as much of the scientific data as possible. As a nurse who hasn’t had formal training on data collection and research, it can be very easy to get lost in that data. I found myself feeling like I was in the middle of a tornado, spinning around in circles, and grabbing ahold of whatever I could, information-wise.
ASH is intense! 879 Abstracts at ASH 2021 focused on multiple myeloma — that’s a TON of information to soak in in 4 days! I decided to take a step back and refocus on my goal. I took advantage of some of the mindfulness exhibits available to try to calm the storm! This storm is not a negative one, I want to be clear on that. The information storm that I speak of is simply a lot of information in a short time. I do appreciate the ability to view the abstracts for the rest of the month and absorb more information, including details, from each one.
My personal goal for attending ASH this year was to be able to communicate information from the research back to my support group members and their care partners. It seemed like a simple goal when I made it, but when given this amount of information, it is so easy to get stuck in the weeds about what parts to report on, what details are important.
What is REAL LIFE info that patients will benefit from? I have to admit, sitting in front of my laptop for 10 hours straight, feverishly taking notes, snapping screenshots, looking up keywords, making outlines, and trying not to miss a word of this important information being shared was OVERWHELMING! I started to reevaluate my strategy for moving through the rest of the conference, and to be real with myself! I’m not going to catch every word or understand every definition or statistic. I’m not going to remember all the data and be able to recite it word for word. That’s not realistic, nor attainable!
My major takeaways from Sunday’s oral and poster presentations:
• I appreciate, more than words can say, myeloma specialists who can present incredibly technical information in a way that is understandable! Drs. Luciano Costa (O’Neal Comprehensive Cancer Cen ter University of Alabama — Birmingham, AL) and Thomas Martin (UCSF Helen Diller Family Comprehensive Cancer Center — San Francisco, CA) are two of the best! Truly personable, funny, and down-to-earth enough to be able to simplify some incredibly difficult information! Thank you, from patients and nurses alike!
• It is important to acknowledge the financial disparities between the US and the rest of the world when it comes to drug costs and availability. We have to do better so that patients can have access to proven therapies.
• Ciltacabtagene autoleuce (cilta-cel) is EXCITING! Updates to 24-month progression free survival and overall survival data were presented and look incredibly positive. With an updated Prescription Drug User Fee Act (PDUFA) date in February 2022, there is much anticipation for this therapy for at least triple refractory patients. Hopeful that the manufacturing slot availability will be able to support the almost assured demand!
• I overheard a comment made when discussing the diversity profile of a study group of a particular clinical trial that stated that the 17% African American participation in this trial was “impressive and encouraging.” This makes me sad when less than 1/5 of the study population being minority is encouraging! We need to do better with recruiting more minority subjects into myeloma clinical trials. With a disease that clearly has a great impact on the African American population, we need to do better getting an appropriately diverse study selection when researching and learning more about it!
Share Hope. Education is Power. Stay excited and motivated for the future!
Becky Bosley, on Twitter @MidAtlanticMSG