How Does Advocacy Work Impact Other People Living With Myeloma?

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Topics include: Patient Stories

During this highlight from our “Advocacy Opportunities for Myeloma Patients & Care Partners” program, a panel of people living with multiple myeloma, including Cynthia Chmielewski, Reina Weiner and Jennifer Ahlstrom, share rewarding experiences they’ve had as patient advocates. Tune in to learn more about the impact advocacy work has on other patients and families. 

This is a Patient Empowerment Network (PEN) program produced by Patient Power. We thank AbbVie, Celgene, Sanofi and Amgen for their financial support through grants to PEN.These organizations have no editorial control. It is produced solely by Patient Power.

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How about your advocacy work? Does anyone have a really gratifying experience they'd like to share?  

They were working on getting him to the CAR?T trials.  They didn't quite know how to go about getting on the waiting list, and she just had a lot of??she was dealing with a lot of emotion.  She was dealing with a lot of stress.  She was trying to figure it out.  And she was just so grateful to have a tool like that where she could now start maybe connecting with other patients that looked like her or her husband and also connect with, have me help connect her.  

To me, those are the most valuable experiences in all of the advocacy work, the days that I get to talk to somebody on the phone and just give them little tips or tricks that might—so something as simple as, she said, you know, I need more time with my doctor. I have this expert doctor.  I need really 30 minutes to start going through these conversations.  I said, well, why don't you use your patient portal where you're making your appointments and things to write out your questions in advance because if you write out everything you can probably get a really fast response from your doctor about what would you consider next.  

If I can't get into a CAR-T trial what do I consider next?  What clinical trials should I consider joining?  Or what would you suggest for the type of myeloma that I have?  So something just as simple as that.  She said, oh, I never thought about doing that before.  I'm just always disappointed that I don't have more time with my doctor.  

So sometimes it's just the really simple things.  And people are going through a lot when they're going through myeloma, a very active disease.  So just it's so valuable and it's so rewarding to participate as an advocate. 

I truly think that advocates, people who are advocating for themselves and others, I think they do better with their disease.  I had one of my doctors say that, that he said that it's really??I recognize that people who are really advocating for other people, they tend to do better. And who knows why.  Maybe it's just anecdotal, it could not be that scientific, but maybe it's true.  

I feel happier that I'm advocating for myself and others.  It helps me because the myeloma experience is a mind game.  You're in it for this long haul.  Every time you go get labs, like you said at one point, Cindy, you're getting the red card or the green card when you get your labs done, and going into that I always get really stressed out right before I go in to get my labs. How is it going to turn out this time? And I kind of have to think about making a treatment change or get on treatment or start a different treatment. So all those things are—it makes things easier when you're advocating.  

I think one of my most gratifying experiences was early on.  I'm a mentor for the 4th Angel program.  It's at the Cleveland Clinic, and they realized that I had a social media presence both on Twitter and Facebook as Myeloma Teacher.  And they had someone calling up and they were going through a stem cell transplant and they wanted to speak to someone, which isn't unusual, but what was unusual about the request is the person only spoke Spanish.   

So they needed to have a mentor who was fluent in Spanish and who went through a stem cell transplant to talk with this person that they had made a connection with.  And unfortunately at that time in their directory they didn't have someone who matched those needs, so they asked me if I knew anyone, and I said I personally don't know anyone but is it okay to reach out on social media and ask?  And they said, yes, we're desperate.  Please do so. And I did.  

I tweeted out, and I put it on a Facebook page, and within an hour and a half I had four people who spoke Spanish who were willing to mentor a myeloma patient.  So that kind of—that was very gratifying to me that I was able to use something I was good at, using social media, to help someone else.  So that was one of my gratifying experiences. 

Anyone else?  

I said, well, I'm going to make a call over to the NCI because I do know somebody who works in GI oncology and see if they can just help you get more information so that you can make an informed decision about what to do next.  So I called, and the person I wanted to talk to had moved to another area because that happens, you know, but they did give me a phone number and I called that person.  

And then I gave it to this lady who ended up speaking to this GI oncologist finding out also about the fact that there are other patients who had survived all that long.  And then also got in touch with—got her in touch with a pancreatic support group called PanCAN.  Ended up talking to these people at PanCAN for four hours until she could really feel comfortable with her decision.  

But what I tried to pass along too was that just because the data says that there's nobody else alive at three years on this treatment that doesn't mean that you would not continue to do well.  It's just that the data has not followed people out any further.  But the idea of connecting people is just—you know, what did I do?  I just said, here's the connection.  Kind of go from there.  And that was very—I mean, I haven't worked in oncology for years now, but that was very??that was gratifying to me, I have to say.  

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 September 9, 2019