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Multiple Myeloma Patients Discuss Support and Survivorship

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Published on May 7, 2020

Key Takeaways

In this segment from our recent virtual myeloma town meeting, 18-year myeloma survivor Maddie Hunter discusses support and survivorship with 10-year survivor Lynn Worthen, his care partner Mary and 12-year survivor Cindy Chmielewski.
 
Watch as Lynn shares his story of being diagnosed, receiving treatment at the University of Arkansas for Medical Sciences (UAMS) Myeloma Center and what life is like now being in remission. Lynn’s wife Mary offers tips for other care partners. Cindy Chmielewski shares helpful resources and discusses the importance of survivorship plans and mentoring programs. This segment concludes by each of our guests sharing a message of hope. 

This program is sponsored by Takeda, Janssen and Karyopharm. These organizations have no editorial control, and Patient Power is solely responsible for program content. It is produced by Patient Power in partnership with UAMS Myeloma Center. 

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University of Arkansas for Medical Sciences Myeloma Center

Transcript | Multiple Myeloma Patients Discuss Support and Survivorship

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.

Maddie Hunter: 
Without further ado, I'm going to welcome Lynn and Mary Worthen—and Lynn is the patient. Lynn and his wife Mary have been on a journey that has lasted about 10 years. And what I'm told about you, Lynn, is that you're a retired minister and have had a number of treatments that have allowed you to experience remission in a number of ways.

And most recently, you were actually tested with an MRD test that came up with a negative result. And in the MRD world, negative is good. And we heard some talk about this earlier with our treatments, but you have had an experience with a transplant, you've had a number of treatment protocols, and here you are with no medication currently. You are sort of in this drug holiday place.
 
So I hope I've captured the essence of your trip. And I know that, Mary, this is a joint trip. Myeloma is a family disease. So we're going to start with some questions, but I also want to welcome our other patient today, Cindy Chmielewski.
 
She's a friend and a member of my support group. She's part of our leadership team. She's our social media expert, but she's also one who started off—you started off your experience with back problems. As it’s true with so many myeloma patients and after a saga of trying to get at what was going on with your back, you were finally diagnosed. And so that was 12 years ago, you had a number of regimens including a transplant and have not experienced remission. You have had a very stable VGPR (very good partial response), which is a very good partial remission, and you're currently in a maintenance mode with bortezomib (Velcade) with that plateau of a very good partial remission. So you've done patient advocacy work in many ways all across the nation. So a lot of people here probably know you as the Myeloma Teacher, and so I welcome you, Cindy.

Cindy Chmielewski: 
Thank you.
 
Maddie Hunter: 
So we've got two different stories I guess. Lynn, you were discovered myeloma through a physical, and I think Cindy has the story of this longstanding issue with her back. So I'm just curious, I'm going to start with you, Lynn. What kind of support have you benefited from along the way, and what did you learn about yourself relative to this?
 
Lynn Worthen:
 
Well, I was diagnosed in a simple blood test and an annual physical, and I didn't realize how fortunate I was that that happened. And they sent me immediately to Little Rock where they did their tests. And then I ended up in treatment. That was in May of 2010 and I had, subsequently, by December, I'd had the total treatment program, which was two stem cell transplants and all the things that went with that.
 
I think I learned from myself that you can enter into a difficult circumstance like a treatment for cancer, especially myeloma in this case. And you can't choose that you have that. I didn't wake up one morning and say, “I believe I'll go get myeloma,” I just found out I had it. But I can choose how I respond to it. And I decided, I told my wife, and our journey is much longer than the 10 years. We've been married 52 years. So anyway, I said, “We can choose our attitude about this, and we're going to try to be as positive as we can.” And that's been the path we've tried to take, and the attitude we've tried to take. I trusted the doctors in the clinic, my own doctors at home had told me the reputation of the clinic, and I didn't realize when I went that I was in a very special place that was known nationally and worldwide for its work.
 
And so I realized that I couldn't get any better treatment than I was getting. And so we'd been walking that path. I was in remission. I had what they call a slight remission. I had a relapse, but very quickly I was back in remission. And in about a year-and-a-half, the term MRD-negative was used, and that was in sometime in late 2016. And since then, I completed the regimen of treatment that I had, but I’ve been MRD-negative and I have been taking nothing for about a little over two years. I haven't had any treatment at all and have remained in that. Just a month ago, I went back in and had my follow-up, and everything was good. So, I think as a patient that it's up to me just like any patient, “How do I respond to this? How do I think about it?” And I tried to be as positive as I could be. And I believe that helps in the whole process, that your attitude about it makes a lot of difference.

And I've had the opportunity to speak at several places around the country to support groups; from a very small town in Minnesota to large groups in Florida and Houston and places. And I've watched the power of a support group help a person go from saying, "I'm not going to take any treatment. I don't want that poison in my body," to seeing the support group help that person accept treatment and have a better chance for their life. So I think those things have been important to me to see how much one patient can help another patient. How much your attitude makes a difference. Listening to your doctor, trusting your doctor; ask questions, but trust what they tell you, realizing that they are the person who has the information. And that a specialty clinic, a place of excellence, like Little Rock is really important, because they do have the cutting-edge material. They are doing this every day.
 
It's not something they do, it's what they do. And it made all the difference in the world, I think in being very well treated. I would also say, and Mary is sitting here with me, the role of a caretaker is so very important. They required me to have someone with me all the time. Mary continued to teach at the university where she taught music and be with me through all of this. And having that support that comes from an individual with you means everything. Having family support. In my case, I had a whole congregation that was there for me. Letting people be there for you, being honest with them and letting them encourage you, it means so very much
 
Maddie Hunter:
Before we hear about the care partner perspective, Mary, forgive me for a minute, but I want to bring Cindy in. Cindy, what are some additional things that you have done for support that have been helpful to you?
 
Cindy Chmielewski:
Well, there are a lot of ways to support yourself, and I really think it's a family of support. You have different people to help you on different times along the way—supporting me with myeloma and my education about myeloma and treatment journeys. Of course, our in-person support group, that has helped me tremendously, but I'm also a member of many online support communities. Some of them, like on smart patients are moderated by people that know a lot about myeloma. There are also some very good moderated online support groups on Facebook that help.
 
When I started was back in the dark ages, and we didn't have these online communities. We had something called ACOR, which was a listserv. And that helped me. So there are many ways that I found support to learn, online webinars from different organizations like the LLS and CancerCare.
 
But also you need support emotionally. And that emotional support sometimes may come from a friend if you have a really good friend to talk to. I did go to counseling for some time to understand what was happening to me and how I'm going to respond to that—so that emotional support there. Sometimes you just need physical support, like when you're going through a transplant, you might need someone to cook you dinner, you might need someone to take your child somewhere.
 
And for those types of things, there are some online tools like Lotsa Helping Hands or CaringBridge. You could really set up a way to enlist your friends in your community to help you without having to make those phone calls to everyone. You just list what you need and people just sign up and help. So there are lots of different ways that you need support, and there are lots of things out there that can help you.
 
Maddie Hunter: 
And it starts at home potentially with the support that we find there. So I want to go back to Mary now. And, Mary, I want to ask you, not as a big question like, what has it been like being a caregiver for Lynn? Because I want you to be able to stay connected to him. What are some tips that you have for people who find themselves as a care partner?
 
Mary Worthen: 
I think two things that were important to me, of course it was easy with Lynn's attitude as a myeloma patient. And I tried to take my cues from him, but the first thing I would say is keep it simple. You as a caretaker, you may need to be an extra set of ears that day, or you may need to be a word of encouragement or a cheerleader. You can do this. It will be all right. Or you may just need to sit there and just be quiet and just know that your presence is appreciated. So it was easy for me to know what his needs were and to kind of read his direction that he particularly needed.
 
And then secondly, I think for me it was important to stay in the moment.  It's really easy as a patient and as a caregiver to do all the what ifs. You're thinking out there in the future, what if this happens? What if that doesn't happen? And it really at times was difficult for me to do this, but to stay in the moment. This is one day at a time. What do we need to do today?
 
And UAMS in Little Rock they included me as well as Lynn as part of the team, and I was so grateful for that to kind of know what direction as a caretaker that I could help with Lynn's treatment. And I think staying in the moment two ways that you're not overwhelmed as a caretaker and as a patient, but also that you don't miss a moment of joy or finding something that you're grateful for. And I'm grateful that I've had an easy patient.
 
Maddie Hunter:
I think that one of the things that in our support group, we have something called a patient-caregivers split meeting where we have patients in one room and caregivers in the other room as a way of being able to just help the caregivers frankly have an opportunity to ask enough questions about each other to be able to give each other support.  And it's clear from, because I'm the patient, I don't ever go into that meeting, and I don't get read-outs of it. But my life partner does, and he has said to me that it's in that venue where he can talk about me as sometimes not being the most, like you Lynn, easy person and have some support there. So I think that you have outlets too to be able to talk are probably important. Do you find that to be the case, Mary?
 
Mary Worthen: 
You know there are just times where you just need to let it all out in a safe place.
 
Maddie Hunter: 
Well, so these are valuable things. I want to ask both of you, the patients now, Cindy, I'll ask first. People talk about survivorship, and we have this notion that because myeloma is now becoming more and more chronic. Lynn, you've built a life that rich with the myeloma, as have you, Cindy, so well. What do you think about when you hear someone say we need to be paying attention now to survivorship?
 
Cindy Chmielewski: 
Survivorship I think includes more than just living in the present, but now that we're living long active lives with myeloma, we need to think about what the future looks like. There are things that are called survivorship care plans and those survivorship care plans—and if you don't have one or don't know much bad, something you might want to be talking to your doctor about. They talk about the long-term or the late-term side effects of some chemotherapies that you may have had in the futureSo they might pick up a red flag of something you had in the past that may affect what's happening to you now. So I think of that. I think of survivorship is that I'm more than my myeloma. So I need to go to all the screenings, I need cancer screenings, I need to see my primary care physician.
 
Survivorship means that I need to keep taking care of myself and eating a proper diet and exercising when I can. So survivorship is a whole notion of being more than your myeloma, living a long life. And what are ways you can actively do that? What are things that you as a person could be doing to make sure that you're living your best possible life? Those survivorship care plans are important and if you don't have one, there are many resources. I know OncoLink, you could develop your own survivorship care plan by putting in information about it.
 
And one last thing I wanted to talk about support, because I didn't talk about, but I think it's really important so I'm going to bring it up now is there are a lot of organizations that provide mentors. There's mentorship, and the LLS has a First Connection Program and Imerman Angels and 4th Angel, and I know the Myeloma Crowd has a coaching program, so sometimes you need that one on one support and look for a mentor. There are lots of ways you could get one.
 
Maddie Hunter: 
Great, thank you. And that idea of survivorship is something relatively new that people are talking about that's connected with how long, I mean you both have 10- and 12-year journeys. I have an 18-year-old journey. We're really thinking about the long term. Lynn, would you had anything to, do you consider yourself to be a survivor and plan for the long term?
 
Lynn Worthen: 
Yes, I do. And I think I decided even in the treatment process in 2010 when I had the tandem transplants and all the chemo and everything that I was alive today. And I was going to try to be alive today as best I could. And everybody is different. But if I could do anything, I wanted to do it. And I didn't want to sit around in a room and mope about what I was going through. And after that, we've done exactly the same thing. We've tried to live each day, as Mary said a moment ago, be in the moment and to try to plan for the future and say, “I want to plan on being there. If I don't get there, well I, I might not get there anyway, without myeloma.”
 
So to try to live our lives as fully as we can and be very careful to what Cindy said a moment ago. I have a checkup every year from my skin doctor to a primary care doctor to prostate exam and whatever it is I have; I cover those things myself. And just try to live a normal life doing as much as I can. I'm retired, but I've continued to pastor on a part time basis when churches needed that. So I did what I was called to do and continue to do. And I think if you live that way, you have a better life in every way.
 
Maddie Hunter: 
So, Lynn, what is something that you know now that you wish you knew when you were first diagnosed about the myeloma journey?
 
Lynn Worthen: 
Someone along the way said when you get told things, it's an alphabet soup. I don't know that you would ever not do that, because when the doctor told me he thought I had MGUS or multiple myeloma, that would have sounded about the same as if I tried to read the Greek New Testament to you. I don't know what that is. Tell me. But quickly, I began to learn. With the help of the folks at the clinic and everything, I began to learn. Every time I had a visit with a doctor, they gave me a printout of an exam or anything, and they helped me to learn what I was doingAnd so yeah, I wish I had known at the beginning what I was getting into, but I don't think it would've changed anything as to what I did along the way.
 
Maddie Hunter: 
Okay. And how about you, Cindy? What would be something you know now that you wish you knew back 12 years ago?
 
Cindy Chmielewski: 
Well, 12 years ago I was a really different person than I am now. I grew up in an age of doctor knows best. So for the very beginning part of my treatment, I just like blindly follow doctor's orders. I did things because I was told to do them. Sometimes I had questions in my head, but I was kind of afraid to ask questions. I just listened. And over time, I learned that's not the best way to be a part of your care, that you really need to be engaged. It's important to ask questions.
 
It's not that I don't respect my doctors or don't believe what they're saying, but sometimes I do seek second opinions. Like the first time I had to seek that second opinion I thought I was doing something wrong. I didn't want the doctor to send a note to my local oncologist that I was there to speak with him.
 
I was thinking that my doctor would not like me. I think I wish I knew in the beginning how important it is to be involved in your care, to ask questions, to seek second opinions and maybe third opinions. You might want to see more than one myeloma specialist if you have treatment decisions to make, because there's no clear path forward. Everyone has different ideas how to treat patients, and it depends on the patient themself. And I think sometimes you may want to listen to more than one path forward and then choose the path that you think is right for you. So I wish I knew that back 12 years ago.
 
Maddie Hunter: 
One of the differences in the two, you, Cindy and Lynn, is that Lynn has experienced remissions and you have not. How do you cope with the fact that you are not in remission? This is put out as a goal for so many of us, and you're an example of someone who is thriving without a remission.
 
Cindy Chmielewski: 
I've never had a complete remission. I've been in what they call partial remission. So I guess depending on what we define remission is whether or not I've been in it, but I've never had a complete response or been MRD-negative. I've always had a measurable spike in my blood and at first, that was hard.  It was really hard to comprehend that because everything I was reading and everyone was saying, you need to be in a CR (complete remission), you need to be MRD-negative. People that are in complete remissions after induction therapy and stem cell transplant tend to have a better outcome.
 
So it was devastating. And for a while I felt that I couldn't go on with my life. I couldn't live my life until I got into that complete remission. I was on pause, on hold, but then that never came. But my numbers stayed steady, and they were stable and stable at a very low level, like a 0.5 M spike.
 
So doctors were starting call me like an MGUS-like patient. And once I felt that my numbers were either plateaued and stable for a long time, I realized that maybe I could go on and live my life and live having myeloma. So yes, I'm moving forward, and I'm living with myeloma, and it's good. It took a while, because I just really didn't think that I could move forward with my life until the myeloma was completely gone, and that never happened.
 
Maddie Hunter: 
Well, and you know the fact that you are so active and thriving, the state you are, I hope really people pick up that the power of this notion that you can be plateaued, and you can have long periods of time when that's the case. As is true with you, Lynn, you could perhaps have long periods where you're not taking all the drugs that in some cases can make us a little unsettled or have side effects. So I thank you. I thank you, Lynn. I thank you, Cindy, for your perspectives.
 
Okay. How about, Lynn and Mary? Each of you gets to have your own separate message about hope. So how about, Mary? You start.
 
Mary Worthen: 
Okay. I would just say you have an incredible myeloma team all over the world. It is working. They're working every day. They are your biggest advocates. So hang in there, keep taking one step at a time.
 
Maddie Hunter: 
Great. And, Lynn?
 
Lynn Worthen: 
I would piggyback on that and what's been said here that it's like a snowball rolling down a hill that more and more knowledge is gained. Newer treatments come about, and I think one day there'll be a cure. And I'm alive today, and I'm going to keep believing that maybe I'll be here when that cure comes.
 
Maddie Hunter:
 
Thank you. Thank you, both. And, Cindy, what kind of message are you going to offer to us as we say goodbye to one another?
 
Cindy Chmielewski: 
Well, I've been fortunate that I've been allowed to go to big meetings with doctors like ASH (American Society of Hematology) and ASCO (American Society of Clinical Oncology), and years ago when I started attending these meetings, I never heard that four letter word, cure. It was never, never said. They were trying to control the disease. And more recently, I guess over the last three or four years I've heard doctors say yes, we are curing some patients. We might not know the demographics or exactly who are those patients we're curing. But we are, and most of the myeloma specialists think there's going to be a cure just around the corner—maybe not for every single person immediately, but for maybe a group of patients. And now when I go to these meetings, they're talking about a whole new way of harnessing our own immune system to fight our cancer and maybe have that immune system continue to do that job forever. So, I'm a science geek, and science really makes me hopeful. 
 
Maddie Hunter: 
Thank you. Thank you, science geek Jersey girl buddy of mine. And I want to say goodbye again. Thank you for your attention. Thank you for your participation. I'm Maddie Hunter and remember, knowledge is the best medicine of all. Have a great, great day.

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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