Educating People With Myeloma, One Tweet at a Time
When Cindy Chmielewski was diagnosed with multiple myeloma nearly 10 years ago, she wasn’t the type of patient who asked questions. Growing up in the era of “doctor knows best,” she followed her doctor’s orders and advice “blindly,” she says.
Today, with her cancer in good partial remission, Chmielewski takes an active role in her team of caregivers. And, she shares everything she learns about myeloma with her thousands of social media followers at her Twitter handle, @MyelomaTeacher.
“Knowledge is power,” says the former fifth grade teacher, adding that social media has been a special boon to patients of rare diseases. She’s determined to take those tools even further: At a conference in 2018, she presented posters on how social media could be used to speed up the timing of clinical trials.
“I’ve taken it from something to educate me to possibly getting more drugs to people quicker,” she says. “People around the world can use social media from the recliner in their living room in their pajamas — and it costs nothing.”
That’s a far cry from the days of tracking down outdated medical journals in libraries — or from the days when making an impact involved the financial resources, time, and knowledge to start a nonprofit.
“Now a person like me can have an impact by just knowing the hashtags,” she says.
HealthCentral (HC): How/when were you diagnosed?
Cindy: In 2006, I started experiencing back pain so severe I sometimes couldn’t get out of bed. For two years I was treated for degenerative disc disease with physical therapy and pain meds but I wasn’t getting any better. … Finally, in 2008, I was referred to a hematologist. The day I was diagnosed he asked me if I came alone. I was completely shocked — I thought he going to give me iron pills, and he told me I had multiple myeloma.
HC: How did multiple myeloma change your life?
Cindy: I was devastated, but doctors were hopeful. There weren’t as many drugs then, but the doctors told me that I had three choices and that the final option was up to me — they wanted me to make the decision. That’s when I realized that if I wanted to be part of the team and make informed decisions, I had to educate myself. I transitioned from a passive bystander to someone actively involved in my care, delving into the literature so I could understand what myeloma is and what treatments are available. And at that point, I made a decision to retire from teaching. That was hard because I [wasn’t] retiring to travel and visit grandkids; it felt like I was retiring to die.
HC: What have you learned along the way?
Cindy: It took a long time, but over the years we realized I am a slow responder to therapy. While it may take someone else about eight cycles of a therapy or protocol to get a maximum response, it would took me years. It took me a while to adjust to that because at first I was thinking, I want to get rid of this cancer and resume my life. Now, I realize I can have multiple myeloma and still continue living my life. Right now, I am on maintenance therapy. I’m lucky that I’m working with specialists and doctors that feel comfortable enough treating multiple myeloma that they’re willing to experiment and to see what’s best for me.
HC: When did you start sharing your story on social media?
Cindy: A pharmaceutical company was starting a patient ambassador program. I found that my story could inspire others. And once I started sharing through that, I started to get a renewed purpose in life. Then I realized maybe I could use social media to share. When I [first tried Twitter] I noticed the search bar and I typed in myeloma. I saw well-recognized [multiple myeloma] specialists tweeting and sharing info. And I started seeing the hashtag #BCSM [breast cancer social media]. They were sharing stuff and having discussions, and I thought, well, if they can have a hashtag, so can we.
I changed my Twitter name to @MyelomaTeacher and started tweeting with the hashtag #mmsm. All of a sudden, I had thousands of followers. I’m thinking oh my, all these people are following me — I need to get good information! And it became my little unpaid part-time job, my way of giving back and being a teacher.
HC: What would you share with someone who just received a multiple myeloma diagnosis?
Cindy: I have three messages I would tell anyone who is newly diagnosed:
- First: Everyone is an individual. Just because so-and-so is doing this doesn’t mean it’s good for you. You can have discussions with your doctor and remind them things like I do, I’m the one who responds very slowly.
- Second: You have to be actively engaged. If you can’t do it yourself, then appoint an advocate for you who you trust who educates themselves and comes to appointments with you.
- Third: Find a team of support. You may need people who know nothing about multiple myeloma to take you out to a movie and get your mind off cancer, and you also need support people who know what you’re going through. You shouldn’t be walking this alone.