Seven years ago I was diagnosed with Stage 3 IgG kappa multiple myeloma. I started the recommended treatment protocol immediately without asking my hematologist any questions. Unfortunately I stopped responding to my induction therapy after only 3 months. A third drug was added to my chemo cocktail as I prepared to have a stem cell transplant. The stem cell transplant failed to put me into remission. I was devastated and hopeless. I retired from my teaching profession to focus on getting my myeloma under control. Fortunately consolidation therapy after my stem cell transplant and ongoing maintenance therapy has kept me in a very good partial remission for the past several years.
Since my diagnosis I learned how important it is to educate yourself about your myeloma, find support and make sure you are actively engaged on your healthcare team. My learning and support began right here at the Philadelphia Multiple Myeloma Networking Group. The PMMNG gave me the foundation I needed to evolve from being a passive bystander in my healthcare, allowing my doctors to make all the decisions about my treatment plan, to an empowered partner.
In addition to attending the monthly PMMNG meetings, I also used social media as a source of education and support. I joined several online patient communities such as Smart Patients (previously known as ACOR), the Myeloma Beacon Forum and several closed Facebook Groups. In these patient communities I learned from the other group members and hopefully they learned something from me. I also listened to podcasts produced by CureTalks and the Myeloma Crowd during which doctors were interviewed about their research. Eventually I was asked to be a regular panelist on these shows. I watched countless teleconferences/webcasts on living with myeloma and subscribed to YouTube channels that were broadcasting myeloma videos. I also discovered Twitter as a source of real-time myeloma information.
Each year at the annual meeting of the American Society of Hematology (ASH), tens of thousands of hematologists from around the world gather together to learn from each other and to share the latest research being done in the field of myeloma and other blood disorders. I have been privileged to attend these meeting the last few years as a patient advocate representing the International Myeloma Foundation. I was part of their social media team sharing real time myeloma updates from the meeting via Twitter, Facebook and blogging.
This year I will attend ASH once again. In addition to being part of the IMF Patient Advocate team I will also be a presenter at the conference. I was asked by the Communications Committee of the American Society of Hematology to be part of a specialist interest session entitled “Social Media for the Hematologist.” I will be sharing the patient perspective during a panel discussion on how oncologists can use Twitter to educate patients and to promote conversations that might lead to a positive impact on patient outcomes.
Here is the program description:
Social Media for the Hematologist,
Sunday, December 6, 11:15 a.m. – 12:15 p.m.
CHAIR: Joseph Mikhael, MD, Mayo Clinic, Scottsdale, AZ
Michael A. Thompson, MD, PhD, ProHealth Care Cancer Center, Waukesha Memorial Hospital, Waukesha, WI: Introduction to Social Media and Medicine
Cindy Chimielewski, Patient Advocate, Lawrenceville, NJ
Navneet Majhail, MD, Cleveland Clinic, Cleveland, OH
Laura Michaelis, MD, Medical College of Wisconsin, Milwaukee, WI
Jeffrey Szer, MD, The Royal Melbourne Hospital, Melbourne, Australia
Amber Yates, MD, Baylor College of Medicine, Houston, TX
Panel Discussion: USING TWITTER TO ENHANCE HEMATOLOGY RESEARCH AND PATIENT CARE
Social media is increasingly becoming recognized as an important and valuable means of communicating advances in science and medicine. Perhaps one of the most impressive displays of the utility and power of social media in this context is at medical meetings. For example, at the 2014 ASH Annual Meeting, more than 3,000 users, many of whom were attending the annual meeting in San Francisco, posted more than 18,500 tweets using the designated “#ASH14” meeting hashtag. The goal of this session is to educate attendees about how the use of social media can be professionally beneficial. The session will offer basic guidance about how to use Twitter as well as some case studies on how Twitter has been successfully used in medicine. The session will also feature a panel discussion focusing on how professional hematology research and clinical communities can use Twitter effectively to promote conversations that might lead to a positive impact on patient outcomes. A question- and-answer session will follow the panelists’ presentations.
I am extremely excited to learn the latest breaking news in the care and treatment of myeloma at this year’s ASH. I think immunotherapy will be a hot topic. You too can find out the news in real time by following the meeting hashtags on Twitter. Hashtags to follow are #ASH15 #IMFASH15 #MMSM You can also follow my Twitter feed: @MyelomaTeacher