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Myeloma Patients Share How They Make Treatment Decisions

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Published on November 20, 2019

How do multiple myeloma patients take an active role in their care? What factors do patients take into consideration before starting therapy? During this Patient Café, a myeloma patient panel shares their five unique treatment journeys, and how each decided on an option best suited for their condition, goals and lifestyle. Watch now to learn more about the treatment decision process from the patient perspective during what can be a difficult and stressful time.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc, Celgene Corporation Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control. Patient Power is solely responsible for program content.

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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.

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.


Cindy Chmielewski:

Hello everyone and welcome to the Patient Empowerment Network’s Myeloma Patient Café. My name is Cindy Chmielewski, and I’ll be hosting the program today. I was diagnosed with multiple myeloma way back in 2008. The Myeloma Patient Café is an opportunity for myeloma patients to get together and discuss their disease and also to share tips and information about myeloma.

Today’s topic is going to be how to make a treatment decision. But before we get into that discussion, I think it’ll be nice if we all go around and take a few minutes to introduce ourselves. We could say our name, where we’re from, and just a short history of our treatment journey. I’ll go first.

As you know, my name is Cindy. And I’m from Lawrenceville, New Jersey, and I was diagnosed with multiple myeloma back in 2008. When I was diagnosed, my myeloma was really tricky to begin with. My induction therapy stopped working for me just after a few cycles, and a stem cell transplant failed to put my myeloma into remission. So, I was very, very scared back then, and I retired from teaching.

But fortunately, a combination therapy was able to put my myeloma in what’s called a very good partial remission. But it took almost three years to get that maximum response. And right now, I’m staying in that very good partial remission with maintenance therapy.

Mike Burns: 

I was diagnosed in 2013 after having MGUS in 2009 and smoldering myeloma in 2010. My initial treatment was part of a clinical trial, and I had lenalidomide (Revlimid), bortezomib (Velcade) and dex (Decadron) for three cycles, then a stem cell transplant, and then two more cycles of RVD and then maintenance therapy on Revlimid until 2018. I was really fortunate. I went into stringent complete remission and MRD negative. But then in July 2018, I began to relapse. So, I’ve started another treatment with elotuzumab (Empliciti), Revlimid and dex, and that’s been working pretty well recently.

Cindy Chmielewski:

Good. Thanks for that introduction. And Alan, would you like to share a little bit about your story?

Alan Stephenson:

Sure, I was diagnosed in 2016. I was very far along, and the myeloma was very advanced. And when I was first diagnosed, I was put in the hospital and nearly died in the hospital because of some pain meds they gave me. It just shut down my digestive system. But anyway, everything happened really fast because it was so advanced. I really didn’t have much time to make decisions. We found it because my L5 vertebra had collapsed. I found out I had fractures in every vertebra, clusters of fractures in my ribs, 147 lesions on my bones, and 60 percent of the cells in my marrow were cancerous.

Like I said, it was so advanced I really didn’t have much time to make plans, but I went through two rounds of VDT-PACE. I went to a myeloma clinic that specialized in multiple myeloma. I did two rounds of VDT- PACE, then tandem stem cell transplants, then 16 rounds of Darzalex or daratumumab. Then they told me I was in remission and then went on maintenance treatments. I did Ninlaro and dex and – oh, Revlimid. That’s what it was. I did that for about seven or eight months. And my blood counts were just staying so low that they finally took me off that. My white count would never get over about 1.5 to 2. So, then I went back on the Darzalex, and that’s what I’m on now. I’m in stringent remission.

Cindy Chmielewski:

Good to hear that. You had some journey there. And Connie, can you tell us a little about your story?

Connie Bohm:

I was diagnosed January 3rd of 2010 after I fractured my sternum in a race. A gal was pacing me, and I thought I had a sports injury and just had too much fun sprinting. But it took about nine months before they finally realized that I’d fractured my sternum that day, and then I got diagnosed with the multiple myeloma.

Cindy Chmielewski:

And Josine, how about you?

Josine Young:

Hi. I was diagnosed actually five years ago this past month, Columbus Day weekend 2014, with 32 compressed fractures in my spine and my ribs from – I thought it was from lifting a box of legal documents at work in Manhattan, but it wasn’t. It was the myeloma pushing out because I had – 95 percent of the plasma cells were cancerous. Fast forward three months later I had a stem cell transplant, never went into remission. I’m on a triplet now of Revlimid, Ninlaro, and dex, and it brought my M- spike down to 0.2, which when I started out, I was at 8.0. So, life is good.

Cindy Chmielewski:

So, now let’s talk about how we make treatment decisions. And Mike, I’m gonna go back to you. When you were in smoldering myeloma, you had that opportunity to either watch and wait or to go on a clinical trial. What made you decide clinical trial? What was part of that decision- making process?

Mike Burns:

When I was in smoldering myeloma, I wasn’t really offered a clinical trial. It was when things switched from smoldering to active myeloma. And what made me decide to do the clinical trial is a couple of things. One, my background is that I am a scientist, an engineer. So, I’ve been interested in the science behind treating multiple myeloma and other cancers and wanting to do my little part to try to help advance the science through participating in a clinical trial. So, that was one factor.

The second factor is that I felt like I’d get really good treatment period, but I’d get the very best treatment if I was in a clinical trial. And it turns out that I was monitored much more frequently while I was in the clinical trial than I would’ve been otherwise. And that ended up over time giving me, I think, some peace of mind. So, I’m really glad that I did participate in the clinical trial.

Cindy Chmielewski:

Good. Anyone else participate in a clinical trial or had that option brought up to them? No?

Alan Stephenson:

I did not.

Cindy Chmielewski:

No. Did your doctors ever ask if you were interested? Or was that never brought to your attention?

Alan Stephenson:

It was never brought to my attention.

Cindy Chmielewski:

Josine, did the doctor ever ask you?

Josine Young:

No, no. I would definitely be up for it, but it never came up in conversation.

Cindy Chmielewski:

How about you Connie?

Connie Bohm:

My numbers are very, very gradually going up like myeloma likes to do. And so, we have – looking ahead to a relapse at some point, my specialist brought up clinical trials and that we could discuss them and look them over and decide at that point.

Cindy Chmielewski:

Good. And while I’m talking to you, I think I read in your biography that you chose not to go ahead and have a stem cell transplant. Is that correct?

Connie Young:

That’s correct.

Cindy Chmielewski:

And can you talk about – a little bit why – what went through your head to make that decision?

Connie Young:

I think at that particular time the result of quality of life or overall length of life were very similar in terms of whether you had a stem cell transplant or in my case with standard risk myeloma. And I might at that time could’ve – everything that we had talked about and looked at with the research – maybe buy six more months of overall life – of survival. And I have to admit I was a little bit skeptical about – I guess I’d say killing off your immune system and how that might come back or not come back. And with standard risk, I decided to go up to Mayo Clinic and have them collect my stem cells as an insurance policy of sorts and then see how my myeloma progressed.

Cindy Chmielewski:

And at that time, were you in a complete remission when you were making the choice of whether or not to have a stem cell transplant?

Connie Young:

No, I wasn’t. I know the standard of care, and that was explained to me – was to have a stem cell transplant. But when I looked at the numbers with my specialist and my local oncologist, lenalidomide (Revlimid) was seeing some very good results. So, it really looked very similar to me. I thought with a deeper response up front we might get an overall better response, but I decided to – at my age – just to see how it would progress.

Cindy Chmielewski:

And that’s why this is such a crazy disease because everyone has a different presentation and yeah. And, I think, Alan, you were a little bit different. You had double transplants? Was that tandem transplants?

Alan Stephenson: 

That’s correct, about 60 days apart.

Cindy Chmielewski:

Can you talk about how you decided and why you decided to have such an aggressive line of therapy?

Alan Stephenson: 

Well, I think part of it comes to my personality type. I’m a business owner, and I’ve been fairly successful in life by surrounding myself with people that know way more than I do and letting them do their jobs. As I said in the beginning, things happened so fast with us we didn’t have much time to make decisions. And we were sent to a myeloma center. They specialize in multiple myeloma, and I feel like it’s probably the best in the world. But, of course, I guess everybody feels that way about where they’re treated, but my doctor was one of the top people in the world that specialized in multiple myeloma. He’s a clinical research scientist. And he told me how bad it was, and he said we’ve gotta treat it aggressively. But if we do, we feel like we can get you in remission.

And, you know, I really – when I first met him, he introduced himself by his first name, and I liked him, and I trusted him. And I had done a little bit of research on him, and I had just decided to do what he said. And it really made it – in many ways, it was easier for me because my situation was so bad that – and I know there are people that have had way worse than I have. But it was urgent that we make decisions. I didn’t really have a lot of time to think about it. So, I just surrounded myself with really good people and did what they said.

Probably the only decision I’ve really had to make is between my first transplant and my second. And like I said, they were only about 60 days apart. I did really well recovering from my first transplant. They released me to go home 14 days after my transplant, which they said was fairly unusual. The day I got home, I got C. diff And I was brutally ill, and then I got the flu. And then I got C. diff, and then I got the flu again. So, basically out of a two-month break, I was sick for a month.

Cindy Chmielewski:

Oh my gosh.

Alan Stephenson:

And when I went back, he told me – he said, “Look, I know you’ve had a hard time. So, we can go one of three ways. Your test results were very good, so we can either let you go home for a couple weeks to recover.” Of course, he knew I had to run a business too while I was going through all that. And he said, “Or, we can do a reduced dose of melphalan (Alkeran), or we can just give you the full dose.” And I’m an idiot, and I said just give me the full dose. So, that also says a lot about my personality card.

But anyway – so, I don’t have any regrets. It’s taken me a long time to get back on feet, but I live a pretty normal life. About four or five weeks after I got home from my second stem cell transplant, I made arrangements to continue a family tradition of going fishing with my dad and my sons in South Louisiana. And I looked like a ghost honestly, but I’ve forced myself to do a lot of things I didn’t feel like doing so that I could recover.

Cindy Chmielewski:

Josine, can you talk about your initial treatment and if you were part of that decision-making process?

Josine Young:

Sure.

Cindy Chmielewski:

I know that initial treatment shocks us, and many of us are really, really sick. So, we’re really not part of it, but talk a little bit about your experience.

Josine Young:

Yeah. I was totally out of it at that point when I was first diagnosed because I was on morphine for 10 days, and I lost 10 days of my life. So, I never had anyone say that I had this cancer or discuss any treatments me. So, I was at their mercy. They gave me bendamustine (Bendeka) and bortezomib, cyclophosphamide and dexamethasone (CyBorD) – no. Yeah, CyBorD and bendamustine in the hospital. And I had, like I said, no recollection of any of it at all. My husband was there to make all those decisions at that time.

Cindy Chmielewski:

So, now, unfortunately, we have myeloma. And myeloma is one of those diseases of relapse and remission right now, although I’m very hopeful that we’ll be curing some people very soon. No one’s saying that they have a cure for myeloma. So, there’s a possibility that we will relapse in the future. Hopefully, the really, really, really distant future, but there’s that possibility. So, when we’re thinking about treatments, what do you think are some of the things that you consider when making that treatment option?

Mike Burns:

In my case, Cindy, last year – last July, my oncologist gave me eight different options. And we went through the list, the pros and cons of each of those eight options, and finally together decided on the elotuzumab (Empliciti), lenalidomide (Revlimid) and dex (Decadron). And it was very important to me to sort of understand what his thinking was and why he liked this option versus that option and so forth. Part of it had to do with how effective we thought things would be given my myeloma and my history with myeloma. Part of it had to do with side effects that we wanted to avoid. I have peripheral neuropathy left over from Velcade. So, that sort of ruled out Velcade. But anyway, it’s great that we had so many different options to be able to choose from. I’m fortunate enough to be in that position now. And it made me feel good to be able to go through those options one by one with my myeloma specialist.

Cindy Chmielewski:

Some of the things you considered is what your specialist was thinking, why he picked a treatment; but you also considered some side effects from previous treatments when selecting your new treatment, which makes a lot of sense. If you already had neuropathy, trying a treatment that is known to cause neuropathy might not be the best choice.

Mike Burns:

Exactly.

Cindy Chmielewski:

Yes. Anybody else – things that they considered in the past when making a treatment decision or think they would be considering in the future for future treatment decisions?

Alan Stephenson:

I had to make the decision about going on maintenance. And I have a lot of friends with multiple myeloma, and some of them chose not to do maintenance. I guess, once again, it goes to my personality type. The first thing I asked my specialist was, “If you were me, what would you do?” Nobody knows better than he does. And why would you do that. And he told me, and then the other side of it is – going back to my personality, I’m more likely to do the most aggressive thing to go ahead and get it over with. And that’s kind of why I decided I should finish my maintenance. They originally scheduled three years of maintenance for me. And I should finish that in January or February of next year.

Cindy Chmielewski:

So, it was trusting your specialist but asking why he chose that treatment.

Alan Stephenson:

That’s correct.

Cindy Chmielewski:

But your personality is – go for the gusto there.

Alan Stephenson:

Yes. And the other side of it is that right now I’m an 18-year-old in the body of a 70-year-old. I’m actually 52, but I figure I can handle the more aggressive treatments right now than maybe I could 10 years from now. I’ve got kids. I’ve got a grandson. And I figure if it means me doing the most aggressive things so I can be with them longer, I don’t mind doing that.

Cindy Chmielewski:

And Connie, I think one of your considerations was quality of life. I heard you talk about quality of life when you made that decision about not having your stem cell transplant right up front, harvesting your cells, keeping them in the fridge just in case you need it. Can you talk a little bit more about that?

Connie Bohm:

Yeah. I looked at having the stem cells available, so I could have a stem cell transplant if I needed one. And I wanted to continue to compete with the race walking. So, that was a small part of it. Also, I with my oncologist – this last appointment he mentioned that if my numbers continue to just go very slowly up that maybe the next appointment that we would discuss some options. He did mention that he liked – maybe for my particular situation – adding daratumumab. And we would be looking probably at a two- or three-agent combination. I’m, unfortunately, not able to tolerate the dex. So, I’m not sure how important a factor that is for trying to enter a clinical trial. I’ve noticed most of them do use dex because of the synergy there. So, that’s a bit of a concern for me as well.

Cindy Chmielewski:

I know you are not on your induction therapy now. You had some treatment decisions to make. Can you talk a little bit about what you thought about when going through those?

Josine Young:

Oh, sure. When the famous 100-day visit to the hospital – after you have your stem cell transplant; my specialist asked me if I wanted to go on consolidation or right onto maintenance. And I guess I was kind of like Alan. I’m like – I wanna do this consolidation first because I wanna do as much as I can to get to where I have to be and then start the maintenance. The only thing is I was on Velcade for those eight weeks, and there was no change at all in any of my numbers. So, then I was on Rev only for a year and a half.

And after that, the light chains went up, and I had new lesions. And my specialist had suggested adding Ninlaro and dex. And I had known that – well, he had told me. I didn’t know it then – that ixazomib (Ninlaro) and Velcade were in the same class. And I was questioning him. I said, “Why would I go on that if the Velcade did nothing for me. And he said, “Well, working as a triplet it’ll work better.” And it really did. So, I’m grateful for that, but I was very confused at the time.

Cindy Chmielewski:

You mentioned the words consolidation and maintenance. Can you explain what the difference between consolidation and maintenance therapy is?

Josine Young:

Sure, consolidation is something that you do right before a maintenance program. It’s just eight weeks. They’re gonna try something to bring the numbers down even lower because, obviously, the stem cell transplant wasn’t as magical as they thought it would be for me at that time. So, I opted to do that just to give it a little boost to see if something else would work. And then the maintenance – I know Alan said he’ll be on it for three years. I think I’m gonna be on it indefinitely. I didn’t get an end date on mine.

Cindy Chmielewski:

And usually consolidation is more of a full dose of whatever treatment that you’re choosing to use as consolidation, whereas maintenance is usually a reduced dose or a reduced scheduling.

Mike Burns:

One thing my myeloma specialist has said to me recently is that the line between consolidation and maintenance is kind of blurring now, and more patients are on sort of maybe in between consolidation and maintenance where you’re on treatment with more than one agent for an extended period of time. He’s told me I’m gonna be on something forever and ever for the rest of my life. So, it’s sort of hard to say whether it’s consolidation or whether it’s maintenance. It all just sort of blurs at this point.

Cindy Chmielewski:

Yeah, it’s hard to make that distinction. When does the consolidation end and the maintenance begin? At what dose level?

Alan Stephenson:

That also shows how different we all are, and I’m in some different Facebook groups and support groups and things. And I see people asking what are the – how does the treatment progress, and what are the side effects of this drug and that drug. But we’re all different. And that’s the thing that is so important, even though there are some general guidelines – even in our treatments. I was classified as low risk. They got me into remission pretty quickly. So, things could change; but as of right now, there isn’t an end date to my maintenance treatments. I know people that didn’t do any maintenance. And then I also know people that probably won’t ever stop. And we were all treated at the same place.

Cindy Chmielewski:

It is very different from person to person, from treatment to treatment and even within yourself. Sometimes, you respond very quickly to one treatment and very slowly to another. So, that’s one of the benefits of being seen by a myeloma specialist, someone who only treats myeloma. Is everyone here being seen by a myeloma specialist?

Mike Burns:

Yes.

Alan Stephenson:

Yes.

Cindy Chmielewski:

Actually, I see two myeloma specialists – one and one for a second opinion, but I really do get my treatment locally. So, I’m very fortunate that all three of my doctors communicate with each other and work well with each other. So, let’s think about – if we had to make a treatment decision in the future and you were given two options, what kind of information would you like to know about each of those options before you make that decision?

I knew early on – one of the considerations I thought of after my stem cell transplant didn’t work was, I was still working at the time, and I was a teacher. And being a teacher, it was hard to take off from school to go to an infusion center to get my treatment. Or if I had to go several times a week, that just was not something possible. And I was trying to continue to teach.

So, one of things that I was considering back then was how the treatment was given. And one of the treatments that I chose was an oral treatment because that allowed me to continue to be employed. Eventually, I did retire. And that wasn’t as much of a concern, but back then, when I was still working and knew that it would be a conflict, that was something that came into my decision-making process. Anybody else?

Alan Stephenson:

I would have to say for me the side effects probably would be the least important. I think I can probably endure a lot at this point in my life if it’s just temporary. I do have three businesses, and that would come into play as far as how treatments would go. My primary business as a financial advisor – I can pretty much do that from anywhere. In fact, even when I was going through my stem cell transplants, I always had my laptop with me. But since then, in the last year or year and a half or so, I’ve started two more businesses, and that would definitely come into play.

Cindy Chmielewski:

Does that – you were saying –

Alan Stephenson:

And the other thing is I’d wanna know what the track record is, you know? Do we have a long-term track record?

Cindy Chmielewski:

So, you’re saying side effects for you would be least. But track record – are you talking more about the efficacy of the drug, how well it works compared to other drugs? What do you mean by track record?

Alan Stephenson:

I would wanna know – I would be more willing to trust something that had a long-term track record of success than something new that we really just don’t know that much about. And that conversation actually came up with my doctor because there are a lot of new drugs out on the market right now. And he did tell me. He said, “Some of myeloma specialists are kind of getting away from the older drugs that we know work and going to these newer drugs.” He said, “I like to combine the two.” And that’s basically what he did. For my consolidation round, instead of doing a lower-dosed VDT-PACE of Velcade, dex, and thalidomide like they had historically done – for my consolidation round, they put me on the daratumumab. And I did 16 weeks of that, one treatment a week for eight weeks and every other week for eight weeks, and then I went on my maintenance.

Cindy Chmielewski:

Any other things that you would wanna consider or information you would want to know about a treatment before you make that decision?

Mike Burns:

I think we’re getting close to the point where it’s gonna be important to understand a lot about the molecular basis of your particular form of multiple myeloma in order to be able to personalize the treatment. So, what particular mutations are driving your or my myeloma at this particular point? Because we know that changes over time, and what drugs are most effective against those mutations? I don’t know if we’re exactly at this point yet, but I think we’re getting close to that. So, when I relapse again, that’s something that I’m gonna be talking with my doctor about – exactly what mutations have I got and what are the best drugs against those mutations?

Alan Stephenson:

I do agree with that, and I know the Myeloma Institute where I was treated they do genetic studies on every patient. I’m sure they do that in other facilities also. And I definitely agree that that’s where they’re trying to go. And hopefully, they’ll be there soon.

Cindy Chmielewski:

Finding a treatment that’s aimed at one of the mutations you have – the goal of precision medicine. That’s pretty exciting. Any other things that you might want to consider? How do find out about new treatments? There’s so many new treatments first that are FDA-approved and available. But there are also a lot of treatments and clinical trials. I know when I was newly diagnosed, I had no idea what was available to treat multiple myeloma. I didn’t even know if I had a choice of treatments. I just blindly followed my doctor’s orders. My doctor told me what he thought was best, and I said yes.

But now I know there are so many treatments. How do you find out information about them so that you can have that engaged discussion with your doctor?

Josine Young:

Selinexor – the newest one that was approved – one of the gentlemen in our support group has been on it for eight months on a trial. So, we watched him go from literally look like he’s dying to dancing the jig. It’s awesome. So, knowing people who are on that particular drug or whatever and then inquiring about it because I know Krissy is starting with that as well. That’s how we learn. And we just learn everything from the IMF. I learn on online and from our support group. Deena is an amazing support group leader.

Cindy Chmielewski:

Great. So, you learn information through your in-person support group –

Josine Young:

Yes.

Cindy Chmielewski:

– and through talking to someone else who’s been on that treatment. Other ways we could gather information about treatment options? Alan, do they talk about treatment options in some of your online support groups?

Alan Stephenson:

They do. I see a lot of information about that. I’m an administrator on a Facebook group for a particular drug. So, I see a lot of people making comments about different treatment options that they’re doing and their success.

I probably don’t put as much research into this as a lot of people do. I’ve battled the fight of not becoming my disease is what I call it. You can’t overwhelm yourself with information. I’m a big picture guy anyway. I’m not an engineer type-like. My wife is. Her dad was a retired engineer. So, she wants all the little details. I just want the big picture. When I go in, they do my test. I just wanna know good or bad. That’s all I wanna know. I would have to say that talking to people that have the disease and their experiences probably has a bigger impact on me than anything. Because I believe that sometimes studies can be skewed, and I like personal knowledge.

Cindy Chmielewski:

Anybody else? Anyone actually go to the studies and read the studies or abstracts of the studies or ask their doctors about studies?

Mike Burns:

I do.

Cindy Chmielewski:

I thought you would sneak up. You’re in my support group. I know you talk about those studies, so do I. Go ahead. Talk a little bit more Mike.

Mike Burns:

I am the detail guy on that. So, I do read the studies. I’m on the institutional review board for the cancer center that I’m treated at. So, I get to see some of the trials even before they start. I’m fascinated by the disease and the science. If I take off my patient hat and put on my scientist hat, multiple myeloma is a really, really interesting disease. It’s a complex disease. It’s a complicated disease. And there’s a lot that we can learn about cancer in general by using multiple myeloma as a model cancer.

So, it’s fascinating to me to talk with my doctor about the research; and fortunately, he puts up with my dumb questions for the most part. So, to me, I just enjoy kind of understanding as much as I can about it. It gives me a sense of power. And maybe that’s an illusion, but it still helps. The more that I know, the more comfortable I feel about things. So, I do a lot of reading about it and keeping up with webcasts and so forth that are put on various foundations. And there are lots and lots of opportunities to learn. There’s a lot more to learn than I have time for, but it’s an interesting disease.

Alan Stephenson:

Mike, you and I are exact opposites, and we’d make a great team. You know that, right?

Cindy Chmielewski:

Right.

Mike Burns:

Yeah, even though we’re wearing similar shirts.

Cindy Chmielewski:

I’m glad we have such a varied panel today. It’s good having many different perspectives. Any other ways we educate ourselves about treatment options that are coming up?

Alan Stephenson:

I wanna add also that I try to participate in events like this. I do quite a bit of public speaking. I’ve been asked to be a PACE ambassador for one of the pharmaceutical companies. So, I travel around, and I get multiple myeloma specialists all over the country. So, I’ve learned a lot through those conversations. And I think it’s important for us to do things like this to give back. We all know how scary it is when we’re first diagnosed. And if we can do something like this or help somebody that’s newly diagnosed, I mean we’ve done a great thing.

Cindy Chmielewski:

Right. I agree with you 100 percent. Being a retired teacher, it’s in me to help educate others because I really truly believe that knowledge is power. And there has to be just a variety of ways, whether it’s through teleconferences or online support groups or in-person support groups or mentoring, there’s just so many ways that you give back and help someone.

Alan Stephenson:

To me, the first of the unknown is worse than the actual treatments.

Cindy Chmielewski:

Exactly. And being able to talk to someone who’s been in your shoes is the absolute best.

Alan Stephenson:

Do you mind if I share something with you real quick?

Cindy Chmielewski:

Go ahead.

Alan Stephenson:

I mentioned that I went fishing four or five weeks after my second stem cell transplant. While I was there, I got a phone call from one of my clients, and one of her good friends had just been diagnosed with multiple myeloma. And he was gonna be treated where I was. And I was able to – she wanted me to talk to him. So, I called him. I shared my story. I told him how bad I was. And he said, “Well, I’m nothing like that. They caught mine early.” But I said, “Well, you understand my situation was serious.” I said, “I’d like to tell you where I am now. He said, “Okay.” I said I’m in South Louisiana fishing with my dad and my sons.” And he said, “You’re kidding!” I said, “No, I caught a 30-pound fish last night. I’ll send you a picture in a minute.” And just to hear the change in his voice, the tone of his voice, to give him that encouragement that everything was gonna be okay –

Cindy Chmielewski:

Right.

Alan Stephenson:

– was an amazing feeling. About a year and a half later, I was fishing again in South Louisiana. And I only go a few times a year at most. And I got a phone call, similar situation – a single dad with a 13-year-old daughter. And I got to share my story with them. I got her – I got them on speakerphone so they could both hear me. My daughter was 14 when I was diagnosed. I will never forget that – being able to talk to them and encourage them because we all know how important your attitude plays a part in our recovery.

Cindy Chmielewski:

Exactly. Thank you so much for sharing that very personal story. And I’m sure we all have a similar story of a way that we spoke to someone and probably made a difference at that point in their journey. So, we’re coming to the end of our program. What are some things that you know now that you wished you’d knew then about making treatment decisions? Anything that you know now that you wished you knew in the past?

Connie Bohm:

I think one of the things I’ve learned is not to self-diagnose. I think when – it took nine months to get my myeloma diagnosis. I had broken a rib previously. And so, after that race, I thought I had just broken another rib. And it got better and went away. And a couple of months later when I turned over in bed, it felt like a knife going through me and took my breath away. And then another two months went by. I thought – well, I just re-broke it. Another two months went by and same thing, turned on my side in bed at night, and it went another knife through me.

So, I just even competed in some other races that summer. And I didn’t quite feel like I could go as fast as I wanted to or I might really do some serious damage. And that’s when I knew I needed to see a doctor. And I did, and I got bronchitis. And they first treated me and checked out everything for heart and didn’t find anything. And then, when I got the bronchitis, I went back to the doctor. And that’s when they decided to send me to a specialist, and he just touched my sternum and realized it was deformed and said he didn’t even wanna touch it until he got some images. And that’s when he – after the images that he got, he referred me to the West Michigan Cancer Center for further diagnosis.

Cindy Chmielewski:

Josine, any final words of wisdom?

Josine Young:

Well, like Connie was saying about self-diagnosis. I thought I hurt my back at work. If I had only heard the words multiple myeloma in life growing up, which I never heard of it until diagnosis, I think it would’ve been less painful a journey to say the least. Well, you know, it’s all part of everybody’s journey. And we’re here today, and every day’s a gift.

Alan Stephenson:

As far as things I wish I would’ve known; I wish I would’ve known how hard the battle would be after the major treatments. It took me a long time to bounce back. My immune system just wasn’t very good. I kept pushing myself probably harder than I should have, but it goes back to the same thing – is do things that you don’t feel like doing. Push yourself to do the things – there are days when I don’t feel like getting up out of bed, even today. For the last week and a half, I’ve been fighting a cold. I actually – Thursday before last, me and my oldest son took our four-wheel drives to an off-road event and camped out for the weekend. Of course, I got sick the day we got there. But we had a great time and made some great memories, and the price was well worth it.

And that’s kind of the attitude that I have. I know that there’s a price to be paid at times for the things that I do, but every day is just a blessing. Every day is an opportunity to have a positive impact on somebody else’s life, and every day is a day to make memories with my family and my friends and the people I love. And put your focus there.

Cindy Chmielewski:

Wonderful words.

Alan Stephenson:

The way that I put it in my talks is – we will find in life whatever we look for. If we look for reasons to be sad and upset and depressed, we will find those. If we look for reasons to smile and be happy, we will find those also.

Cindy Chmielewski:

That’s true. Very good. I could listen to your words of advice all day long, but we don’t have all day. So, how about Mike. Do you have any final words of wisdom? Advice?

Mike Burns:

I guess the thing that comes to my mind that I know now that I didn’t know at the beginning – there’s so much. I didn’t know anything. But I realize now that I’m not alone. I felt very alone at first, but I’m not alone, and I’m not alone in lots of different senses. One sense is that there are other patients and other folks who are going through multiple myeloma just like I am. And so, a forum like this is really important to be participating in. I believe participating in in-person support groups is important, online support groups.

So, just realizing that you’re not alone is a key thing. And another way that I’m not alone is I have a wonderful team of doctors and nurses and healthcare professionals working to make me as well as I can be. And then I also am very blessed to have great friends and family. So, just knowing that I’m not alone is a key, key thing.

Cindy Chmielewski:

I like that. I’m not alone. Very good. Well, we’ve come to the end of our time. I think we learned a lot of great information between each other, and I’m hoping that it’s gonna be very beneficial to the myeloma community. So, to our audience, thank you for joining us for this Patient Empowerment Network programming, Myeloma Patient Café. I am Cindy Chmielewski. And remember that this fifth-grade teacher says, “Knowledge is power and is your best medicine of all.” Thank you very much for joining us.

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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