Pod4Cure #8: A Curriculum for Cancer

In this episode of Pod4Cure, we are joined by Cynthia Chmielewski, a myeloma patient whose work has helped many other patients better understand their disease. As the Curriculum Director for HealthTree University, Cynthia talks with doctors and myeloma specialists to help answer common questions from patients with myeloma. Her background as a schoolteacher helps her create engaging and buildable units where myeloma patients can arm themselves with knowledge and advocate for themselves in a doctor’s office.

Cynthia Chmielewski (Left) & Sara Lippert (Right)

Transcript:

Sara (00:10):

Hello, and welcome to Pod4Cure, the podcast brought to you by All4Cure discussing health care for patients with myeloma, their caregivers, and everyone in between. My name is Sara and today I have the pleasure of speaking with Cynthia, a myeloma patient research advocate, educator, and mentor. She manages HealthTree University, a free and comprehensive online curriculum for myeloma patients to learn more about their disease. Thank you so much for speaking with me today, Cynthia, how are you?

Cynthia (00:37):

Okay! How are you doing Sara?

Sara (00:38):

I am doing well, thank you. Could you tell me a little bit about yourself?

Cynthia (00:42):

Sure. Let's see, I am 62 years old I believe, I kind of lose track of time over years. I was born and raised in New Jersey. I even attended college in New Jersey and after college I went to Rutgers University and I then entered the teaching profession where I fell in love and was a teacher in public school systems for over 28 years. I'm married. I have a beautiful daughter and I love pets. I have right now, just two little kitties, Pumpkin and Spice, but I've had pets my entire life. And when the weather's nice outside, I enjoy playing in my garden.

Sara (01:25):

That's excellent. Thank you so much for your service as a teacher. I mean those careers, I feel like sometimes go overlooked. It makes sense as your handle on Twitter is the @MyelomaTeacher, correct?

Cynthia (01:36):

That's correct. I am the @MyelomaTeacher. You know when I first set up a Twitter account, I was Cindy C. on Twitter. But then I started posting information about myeloma and no one was finding it. I then noticed there was the @myelomadoc and the @myelomanurse. I said, "Well, myeloma, I'm a teacher. So @MyelomaTeacher."

Sara (02:00):

That's excellent. And you yourself are myeloma patient, correct?

Cynthia (02:04):

I am.

Sara (02:05):

If you wouldn't mind sharing, what has been your myeloma journey up to this point?

Cynthia (02:10):

It was a very different journey than I think most patients have. Maybe the beginning part was a little the same in the fact that I started having back pain back in 2006. I now know that is a typical sign of myeloma, but at that time I did not know that. I went to see an orthopedic doctor and after just a brief examination, (he told me to touch my toes and if I could do this and do that), he diagnosed me with degenerative disc disease. They never did any imaging of my spine and just gave me some physical therapy and pain medication to take. My pain really wasn't getting better. It was actually getting worse. But prior to being diagnosed with myeloma, I was brought up in that age of "doctor knows best."

Cynthia (03:08):

So even though in the back of my mind, I was saying, "Well, do you think it could be anything else? Maybe we should take some x-rays of my back or do an MRI?" I said, "No, no, no, I should not question the doctor. He knew what he was doing." And this happened for two years. It was two years of just returning to the doctor month after month. I think that was a total of 20 visits. And finally on the last visit I had with him, he decided to take an x-ray, which baffled me when I found out the x-ray machine was right next door. I didn't even have to go to a different building, it was in the room next door. He had the report immediately, we didn't even have to wait for a radiologist. He was baffled by the fact that I had all these compression fractures in my back. He said, "Don't worry." I guess in going to an orthopedic doctor, he wasn't quite as concerned as to why those fractures were there, but let's repair them.

Cynthia (04:08):

So it was sent to get kyphoplasty surgery to repair the fractures. I had to have some blood work done and the blood work came back really abnormal. I was sent to a hematologist to find out what was wrong and within days the hematologists knew that with my abnormal lab work and with the fractures, I had multiple myeloma. Back in 2008, induction therapy was usually two drugs. I started with the doublet, started responding, but stopped responding within cycles. All the therapy that's available today was not available back in 2008. By this time I was also consulting with a myeloma specialist in addition to my community oncologist. So the specialist was a little concerned that I had stopped responding so quickly thinking that my disease might have been a little bit more aggressive than they really thought it was in the beginning.

Cynthia (05:07):

So I went in, I had a stem cell transplant. You know, everyone who knows myeloma knows what a stem cell transplant is. 100 days post-transplant my myeloma markers were the same. I wasn't in remission. I still had lots of myeloma. I was devastated. My doctors were hopeful and gave me some treatment options. In time we found out that my myeloma was slow to respond. I was put on a triplet and took almost two years for it to respond. It was never a complete response. I've always had some myeloma in my bone marrow, but I'm still on maintenance therapy from that very good partial response. So it seems that I was a very, very slow responder and maybe my disease wasn't aggressive, it was just slow to take to the therapy. I'm very slow to relapse so that actually gives me time for my advocacy work because I'm not always out there searching for what the next treatment is going to be. I could spend more time dealing with some other things.

Sara (06:14):

That is an interesting path for myeloma. Having spoken to a lot of patients, unfortunately, it's very common for patients to go a while without being diagnosed. That response is unique.

Cynthia (06:25):

Yeah, the response was unique. The back pain and long time, that was common. But you know, not responding to transplant and then taking so long to reach maximum response was, I think, very unique. It was very hard because I saw my myeloma buddies doing so great and responding to transplants. Their therapy put them in complete remission after maybe four or five cycles. That wasn't happening to me. It was getting very depressing, but in time I've learned you can live with myeloma and that may be slow-growing, slow-responding myeloma is actually a good thing. But don’t tell that to someone who's newly diagnosed that's not responding.

Sara (07:09):

Right, definitely. You mentioned that having a long time in between having to change treatment gives you time for advocacy work. What is the main role of a patient advocate and what drew you to the position?

Cynthia (07:22):

That word, “patient advocate.” You know, people were saying, "Oh, you're a patient advocate," but I really didn't even know what a patient advocate was. I was really confused over time. Then I attended the AACR (American Association of Cancer Research has a program, it's called the Scientist Survivor Program. I attended that program. And then I figured out why I was so confused by what a patient advocate is. It's because the patient advocate isn't just one thing. There are many types of patient advocates and patient advocates do many different things. I mean, there are the paid patient advocates that people can hire to help advocate for them when they go to doctor's appointments or the fight with insurance companies and things like that. I wasn't that, I wasn't a paid patient advocate. But then there were patient advocates, you know, that go to Capitol Hill.

Cynthia (08:25):

They go and lobby Congress for research funds. They might go to their local government. Actually, I did that for a while. I worked with the Leukemia Lymphoma Society. We had mission days on Capitol Hill. I got to share my story, I got to lobby for NIH (National Institutes of Health) funding. I enjoyed doing that but lobbying wasn't my main interest. I continued to do that whenever there's a mission day, but I was interested in more than that. Then I learned that there were advocates that provided patient education. That really started to interest me because I was a teacher and I had gathered all this information when I was going through a stem cell transplant. I had put them in folders on my computer and I'm thinking, "I need to share what I'm learning because I'm learning so much."

Cynthia (09:18):

So that part of the patient advocacy is what drew me in at first. I wanted to figure out how I could share what I was learning. Finally, I had this brainstorm that I could use social media, and that's how the @Myelomateacher Twitter handles evolved, and then Myeloma Teacher on Facebook. So, I was able to share all the resources I happened to come across by now. I was attending some meetings and I wanted to share what I was learning at those meetings. That part excited me because I was a teacher and that's what I do. I share resources. But also when I attended that AACR meeting, I learned there was this other area of advocacy that I really didn't know about, but it also excited me. It was called research advocacy and research advocacy are patients who helped provide the patient perspective in myeloma research.

Cynthia (10:22):

When I taught, I taught fifth-grade math and science and I was always that science geek so I really like being part of that research paradigm. It was something that intrigued me. I started learning more about what I could do as a research advocate. I also really enjoy being on the patient advisory boards. I'm on the NCI myeloma steering committee, so I can help provide the patient perspective when they choose a question for a trial when they start developing the protocols for the trial. I can ask, "Why are some people being eliminated? Why are the eligibility criteria so strict? Why are there so many bone marrow biopsies? Can we do it in a different way?" I can look at that. I also can look at the informed consent forms to make sure that they're in a patient-friendly language. I'm part of an IRB (international review board) at the University of Pennsylvania. Each month I review informed consent forms. I could look at patient education materials and have that unique perspective of not only being a patient but also being an educator and knowing how people learn. You know, children learn, but adults learn the same way. They say, "This language is not patient-friendly," or "These words don't make sense," or "You need an image here", or "Maybe you should put a chart." It excites me. I love being a research advocate and I love being able to use the skills I was trained in to help the myeloma community.

Sara (12:06):

The work is really ringing a bell to me. I had the opportunity to speak with Jack Aiello. He talked about the different types of patient advocacy and specifically research advocacy. It's really exciting to talk to another person who does that type of work.

Cynthia (12:18):

Yeah. Jack and I do a lot of work together. Jack is one of my mentors and then there's Jim O'Mill and a whole bunch of us that help mentor each other. I'm the new guy on the block. Actually, it was the three Musketeers and they were all men. I guess now they let a lady into this area of research advocacy.

Sara (12:40):

An important perspective.

Cynthia (12:42):

Right, an important perspective. They've taught me a lot. I think you really need good mentors to help figure out what it is. How do you stay educated so that when you go to the table with these doctors or researchers or heads of pharmaceutical companies, they take you seriously because they know you know what you're talking about and that you understand the clinical trial process and you understand what can and cannot be done? So they helped me gain those skills that I needed to be an effective research advocate.

Sara (13:16):

Well, that's great! Small world, I guess, in the myeloma-verse, huh? You mentioned a little bit ago about HealthTree University and your role there. Myeloma education program. How did you get involved with that side?

Cynthia (13:31):

HealthTree University is an online curriculum by Myeloma Crowd. It's basically a video-based curriculum. I definitely am not a writer, I do not write curriculum for them. I kind of plan the curriculum manual. I got involved because just as she said before, my little world is a small world. So Jenny Ahlstrom, who is the founder of Myeloma Crowd HealthTree foundation. We are good friends. We were actually at an advisory board meeting and she had this idea. She goes, "Cindy, I want to create an online university where everything you need to know about multiple myeloma is in one spot." There's a lot of resources out there, but you have to search for them here and there. They're not organized. And you have to wonder whether the source is a legitimate source or if the materials are up to date.

Cynthia (14:30):

So she goes, "I really want to do this and I think you would be the perfect person to help me." And you know, when someone tells you that, I hear like, "Oh, well let me see. I'm not quite sure," but as we talked about things, and once I was assured that I would not have to write the curriculum, I would just have to develop what was going to be part of the curriculum. Then I was on board. I'm what's called the curriculum director. I put the frameworks together. I think about what myeloma patients really need and really understand. I put it in an organized sequence. Then I start writing questions that will help get those parts across. Being a teacher, I've learned how to question students and everyone that I talk with to get the information that's needed.

Cynthia (15:26):

I write the questions out and then I interview the myeloma specialists and ask them the questions. We get answers from people who are in the know, people that are doing research on this each and every day. Then, those answers are then put into a curriculum where we add animations, we add graphs, we add whatever it is that would make it easy for the person who's watching the video to learn. And of course, being a teacher, I have quizzes and we even have a notebook where patients could take notes and print them out to bring them to their doctors. So that's how it was. We started with myeloma basics. The myeloma basics are in three sections, myeloma basics one, two, and three. They're just the basic questions. Any myeloma patient would probably have a doctor who would tell someone newly diagnosed with myeloma.

Cynthia (16:25):

Many times doctors say this, but you're in an appointment and your mind is racing in all different ways and you forget what the doctor said. So this is just that basic information about myeloma. So that was our very beginning. We started with these basic courses and got the information from what the doctors were telling me and what I was learning in all these webinars and presentations I was going to. I also picked up lots of questions. I asked about the myeloma basics. I'm part of many patient online communities. So I hear newly diagnosed patients ask questions. And sometimes, I might not have one of those questions in our myeloma basics course, so we added it there. So things that newly diagnosed people would want to know about myeloma were in those basic courses. Then we started building out the curriculum and each of the other units is based around a topic.

Cynthia (17:25):

We did a course on stem cell transplants. It's everything you need to know about stem cell transplants. Not only from the doctor's point of view but even from a patient, like what should I bring to transplant with me? Why should I go for a transplant? There are lots of questions, always around the transplant. I actually have a number of questions that I plan on asking some doctors next weekend about transplants because it's changing. That's the one thing I have to make sure of when I'm working through this curriculum. Myeloma changes day-to-day so we have to keep that curriculum updated. The reason why somebody might consider a transplant two years ago may be different. There was a question on one of the boards: why should I consider a transplant if I am MRD (minimal residual disease) negative?

Cynthia (18:20):

Well, three, four years ago, no one even knew what MRD negativity meant. So this is a question I will ask. And usually, I ask more than one doctor when it's more of an opinion, as opposed to a fact. If I asked somebody what an antibody is, there's one answer to what an antibody is. If I ask, "Why should I consider transplant?" There may be more than one answer. So I will ask more than one doctor. Another course I'm working on now is immunotherapy. Just learning about what immunotherapy is, the different types of immunotherapy. And I get a lot of that content from attending meetings this way I listened to what the doctors are excited about. Then I develop questions in a more patient-friendly, directed language so that the patients can not only understand what therapies are available to them now, but what's happening in that research to get them excited about what's coming our way.

Sara (19:19):

It really does sound like, based on your very special set of skills, that you were a really excellent choice to do this. As somebody with a teacher's background, you understand the depth you have to go through to convey information, not only succinctly, but in a way to make sense to a wide variety of people.

Cynthia (19:37):

I think a lot of it is in sequencing and starting with the basics. It's the way you develop a curriculum, you know, get, get the background knowledge and then go deeper down into a subject. It's important to be able to have that sequence so that when they're learning about antibody-drug conjugates, they know what antibodies are. They know what immunotherapy is. Now we can take it one step further to build on the knowledge that you'd had before. It's important to not just take something out of context but to do that as a building block.

Sara (20:11):

Did you know what multiple myeloma was before you were diagnosed with it?

Cynthia (20:14):

Never heard of it. I had no idea what multiple myeloma was. I felt that since I never heard about multiple myeloma, it must not be a very bad disease because you hear about all the very bad diseases. At the time I was diagnosed, it was not considered to be good cancer to have. "When I ask, why didn't I hear about it?" When they were saying this is the second most common blood cancer, it's because patients really don't survive that long to make it known. But now patients are surviving so much longer than we do myeloma awareness month and myeloma action so that more and more people become aware of what myeloma is.

Sara (20:59):

Going from knowing nothing about a disease, to having it, to then being an authority online is a really impressive trajectory.

Cynthia (21:08):

Yeah. And you know when we were talking about how I grew up in that age of doctor knows best, I really didn't need to know anything about anything because I was just blindly following doctor's orders. But once I was diagnosed with this cancer, that was something that was major. I started reading and I was learning that educated, informed patients who are actively involved in their care tend to do the best for their particular disease. I remember attending a workshop from the International Myeloma Foundation and all the specialists up there were saying, "Yes, our educated patients tend to do better." I said, "Well, I'm a teacher so I can be educated." So that's what started me.

Cynthia (22:06):

After my stem cell transplant failed to put me in remission, my doctor said, "Well, we could do this, we could do this, or we could do this." I think gave me the pros and cons of each of those and why he might consider it and why not. But since there was no magic map of which way to turn it was going to be my decision as to which path to follow. He wanted me to answer, which way I was going to go. I really didn't know. And I realized that if I wanted to be part of that team and to make an informed decision that I don't regret or look back on, I had to educate myself. So I guess that became my passion, to first educate myself and want to learn. Once I'd educated myself to be part of my care, to share what I was learning in the myeloma community I'd help others become empowered in their care too.

Sara (22:56):

Absolutely. To me, it sounds like you're arming patients with one of the most important things when it comes to battling disease and that's agency. Having the confidence to be in a doctor's office and know not only what you're going through, but what is best for you. I think that's amazing.

Cynthia (23:15):

You know, people always tell me, "Bring questions to ask your doctor." You have discussions with your doctor, but before you're educated, you don't even know what questions to ask. I think that's what HealthTree University does. It helps people who may not know what questions to ask start to find questions that they should ask their doctor. They may watch a video and they might say, "Oh, I don't know about that. What happened to me? Let me ask my doctor about that." So it gives them a starting point because I didn't know what questions to ask either. I was on those patient online communities, and I was hearing the discussions going on between them. I'm thinking, "Oh, I better ask my doctor that because I don't know," or "Better ask my doctor that because I don't know the answer to that." So sometimes we don't know what we don't know.

Sara (24:09):

That's a really good way to put it. I can't begin to imagine the number of patients that you've been able to impact with your work. I just want to thank you so much for the opportunity to speak with you.

Cynthia (24:19):

Thank you for having me.

Sara (24:21):

Thank you all for listening to this episode of Pod4Cure. If you or someone you know has multiple myeloma and would like to register with All4Cure for free, you can visit www.all4cure.com.