The Importance of Connection: Reaching Out to Myeloma Patients

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Topics include: Living Well and Patient Stories

Cynthia Chmielewski didn’t let multiple myeloma get the better of her. Since her diagnosis in 2008, Cynthia has found her passion in helping other myeloma patients understand their illness. She is an active leader and advocate through social media as well as “real life” patient conferences. 

Now known as the “Myeloma Teacher,” Cynthia is a major voice in the myeloma community. Cynthia shares her thoughts on being a mentor to patients in this video, taped during the 2012 American Society of Hematology Meeting. Watch now to hear her perspective on the importance – and the gift – of reaching out to others with myeloma.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Andrew Schorr on location, in Atlanta, at the American Society of Hematology meeting with Cynthia Chmielewski.  We are friends on Facebook, and she is someone, like myself, who has taken a diagnosis and it has fueled passion to help other patients.  And you were diagnosed with multiple myeloma in 2008. 

Cynthia Chmielewski:

That is correct. 

Andrew Schorr:

And had various treatments including a transplant that didn’t work out so well.  You’ve been on various therapies now.  Right now you’re doing okay. 

Cynthia Chmielewski:

I’m doing fine, yes. 

Andrew Schorr:

Okay.  And that energy gets poured into your computer, sometimes a telephone support group.  So tell us what that’s given you.  You give back to so many people.  What does it give you, doing this, while you’re living with a serious illness? 

Cynthia Chmielewski:

Well, when I retired from teaching I was very depressed, because I really didn’t feel like I had a purpose in life, and now that I am helping others I feel that there is a purpose again.  There is a meaning to my life.  And being a teacher all those years I really felt I had to continue educating someone, so now I’m educating a different population, not fifth graders but patients, hopefully. 

Andrew Schorr:

Now, your Twitter name is what? 

Cynthia Chmielewski:

Myeloma Teacher. 

Andrew Schorr:

So you’re very devoted to helping people understand the illness, living with a illness, and here you are at a major medical convention.  What’s the sense you get about myeloma?  Are you upbeat for people living with myeloma?  I mean, different people have a different story, but—so you can’t say it’s going to be the same for everybody, but what’s the buzz you get? 

Cynthia Chmielewski:

Well, you’re right.  Myeloma is a very individual disease, so everyone is a little bit different, but I get a feeling here that there’s a lot of growth happening in the field of myeloma and that doctors are now being able to identify that there’s more than one type of myeloma.  There are many different subtypes; high risk, low risk, and now they’re trying to think of therapies that, maybe, will benefit different people, and I think that’s very exciting. 

And I’m sitting there listening to the debates among the doctors.  It makes me in awe and feeling the passion that they have for this cause, and even if they disagree with each other, they push each other to defend their points even more, which is good for us patients. 

Andrew Schorr:

Now, do you think, from what you tell people on Twitter, and your support group, that people should play an active role in their care?  They should ask questions, too?  They should enter the debate, if you will? 

Cynthia Chmielewski:

Exactly.  When I first started I did not do that.  I listened to everything my doctor said, and I was even afraid to get a second opinion, thinking that I might offend my doctor by getting a second opinion, but I think you need to ask questions.  You need to be an active participant, and in order to do that you need to educate yourself.  You really can’t participate in your healthcare unless you know what’s going on.  So, I really believe you have to educate yourself.  You need to find support, people to help you out, and then participate in your healthcare. 

Andrew Schorr:

Somebody is diagnosed with multiple myeloma, maybe they’re older.  They’ve never heard of it.  They’re terrified.  It’s a cancer.  Their family is terrified.  But you know, from your work, that they are not alone.  Is that a key message we need to let them know now? 

Cynthia Chmielewski:

Yes, it is.  It’s very important to find some type of support, whether it’s a support group, whether it’s a telephone mentor that you talk to, whether you call one of the big organizations and speak with them, or join an online support group, you need to have someone there, talking with you, understanding exactly what you are going through, so it’s very important to connect with another myeloma patient. 

Andrew Schorr:

When you’re out there tweeting, which are very short messages— 

Cynthia Chmielewski:

Right. 

Andrew Schorr:

—what’s the power there?  What are you trying to say behind every message?  Every little bit that you put out, what’s your goal? 

Cynthia Chmielewski:

Well, I tweet with different ideas in mind.  Sometimes I tweet about financial assistance programs that are available from patients, cancer patients or myeloma patients.  Sometimes I tweet about mentoring programs that they can be involved in.  Sometimes I tweet about new drug discoveries.  Sometimes I tweet, just, where they could get more information.  So, I don’t have one goal, and I think each day I wake up and something strikes me, and then I tweet about that topic for the day. 

Andrew Schorr:

But the underlying thing is that there is information out there.  There’s power in this knowledge. 

Cynthia Chmielewski:

I remember attending my first IMF (International Myeloma Foundation) seminar, and that was just days after I was diagnosed, and I had no idea what anybody was saying, what an IgG was. 

Andrew Schorr:

It was Greek. 

Cynthia Chmielewski:

It was Greek, and these patients were asking questions.  I was like in awe.  But I just remember one doctor, and I don’t even know the doctor’s name, but I remember the doctor saying that the patients in this room are the patients that generally live the longest, because they’re an educated patient and they know how to push their doctors and ask the right questions.  And I said, well, I was a teacher, so I knew how to educate myself, and I wanted to live a long time, so that’s what I did.

Andrew Schorr:

Cynthia, I know nobody can predict the future, how your journey will myeloma will go, but you seem very energized by your mission now of helping educate other patients. 

Cynthia Chmielewski:

I am.  I really, truly enjoy working with other patients through mentoring, through Twitter.  I mean, myeloma is a disease of an older type patient, so sometimes in Twitter I don’t get that audience, but I get their children.  My mom has this, oh, no, what should I do?  And I’m able to respond back through, maybe, a private message and help put them on the right track.  So it’s, maybe, not the myeloma patient I’m reaching on Twitter because that might not be the audience for them, but their children are the ones who are out there. 

And they might not even be asking help.  They might be just writing about this devastation.  I help point them in the right direction, like, tell them where there’s a support group or where they could call to get good information. 

Andrew Schorr:

And just by doing it you get—

Cynthia Chmielewski:

I feel good. 

Andrew Schorr:

—a lot in return. 

Cynthia Chmielewski:

I feel good. 

Andrew Schorr:

Well, I want to give you a hug. 

Cynthia Chmielewski:

I give you a hug, too. 

Andrew Schorr:

Cynthia is great.  Nobody wants to be diagnosed with a serious condition, but then you find yourself—she’s used her ability as a teacher to be a myeloma teacher, so that’s your Twitter name, helping hundreds if not thousands of people.  And thank you for mentioning Patient Power programs along the way. 

Cynthia Chmielewski:

I do. 

Andrew Schorr:

We are together learning the latest in myeloma and bringing it in all our different channels to you.  Thank you for joining us.  Thank you, Cynthia. 

Andrew Schorr in Atlanta at the American Society of Hematology meeting.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on June 18, 2015