MM Treatments and Clinical Trials Archives

When it comes to treatment, Multiple Myeloma patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Multiple Myeloma Treatments and Clinical Trials from Patient Empowerment Network.

How to Make a Treatment Decision

Myeloma Patient Cafe®

Myeloma Patient Cafe® – How to Make a Treatment Decision from Patient Empowerment Network on Vimeo.

Five myeloma patients from around the country sat down to discuss their disease and how to make the best treatment decision for them.

See More From the The Myeloma Patient Cafe®


Transcript:

Cindy:

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:

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 Revlimid, Velcade, and dex 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, Revlimid, and dex, and that’s been working pretty well recently.

Cindy:

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

Alan:

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:

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

Connie:

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:

And Josine, how about you?

Josine:

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:

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:

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:

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

Alan:

I did not.

Cindy:

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

Alan:

It was never brought to my attention.

Cindy:

Josine, did the doctor ever ask you?

Josine:

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

Cindy:

How about you Connie?

Connie:

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:

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:

That’s correct.

Cindy:

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

Connie:

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:

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:

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, 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:

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:

That’s correct, about 60 days apart.

Cindy:

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

Alan:

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:

Oh my gosh.

Alan:

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, 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:

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

Josine:

Sure.

Cindy:

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:

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 and 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:

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:

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, Revlimid, and dex. 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:

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:

Exactly.

Cindy:

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:

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:

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

Alan:

That’s correct.

Cindy:

But your personality is – go for the gusto there.

Alan:

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:

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:

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:

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:

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 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:

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

Josine:

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:

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:

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:

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

Alan:

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:

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:

Yes.

Alan:

Yes.

Cindy:

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:

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:

Does that – you were saying –

Alan:

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:

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:

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:

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

Mike:

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:

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:

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:

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:

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

Josine:

Yes.

Cindy:

– 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:

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:

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

Mike:

I do.

Cindy:

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:

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:

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

Cindy:

Right.

Mike:

Yeah, even though we’re wearing similar shirts.

Cindy:

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:

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:

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:

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

Cindy:

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

Alan:

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

Cindy:

Go ahead.

Alan:

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:

Right.

Alan:

– 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:

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:

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:

Josine, any final words of wisdom?

Josine:

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:

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:

Wonderful words.

Alan:

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:

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:

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:

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 Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. 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.

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference?

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Nurse Practitioner, Beth Faiman from the Cleveland Clinic, explains in maintenance therapy versus continuous therapy in multiple myeloma, which can sometimes be confusing.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

What Does Remission Mean in Myeloma?

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

Find Your Voice Myeloma Resource Guide

Transcript:

Beth Faiman:

I’d like to define the difference between maintenance therapy and continuous therapy. When patients have a stem cell transplant, they have a pre-therapy, the transplant consolidation is the second step, and then they have a maintenance to maintain that remission. For some people that don’t have a transplant, you can just stay on continuous doses of a therapy that’s very well tolerated. So, maintenance and continuous can sometimes be confused, but it’s — maintenance is lesser doses of something that got you into remission and continuous is just kind of staying on that same dose of tolerated medication.

How Side Effects Can Be Managed in Myeloma

How Side Effects Can Be Managed in Myeloma from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Office Visit Planner – Myeloma

Discussing Treatment with Your Doctor: Key Questions to Ask

Diagnosed with Myeloma? An Advocate’s Key Advice

Transcript:

Beth Faiman:

In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.

So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.

And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.

Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy,  they can feel comfortable to keep taking that with lesser chance of side effects.

And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.

The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.

Key Considerations When Choosing Myeloma Treatment: What’s Available?

Key Considerations When Choosing Myeloma Treatment: What’s Available? from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

The Benefits of Seeking a Second Opinion in Myeloma

Find Your Voice Myeloma Resource Guide

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Transcript:

Beth Faiman:

There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.

Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”

Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.

So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.

I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.

We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone

That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.

People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.

Evolving Approaches to Myeloma Treatment: Staying Up-to-Date

Evolving Approaches to Myeloma Treatment: How to Stay Up-to-Date from Patient Empowerment Network on Vimeo.

Multiple myeloma research is fast-moving and showing promise. Dr. Peter Forsberg, a myeloma specialist, provides an overview of the changing treatment landscape and shares resources for keeping up with the latest news.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Find Your Voice Myeloma
Resource Guide

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I think research in multiple myeloma remains a really active area. It’s been a major evolution over the past 20 years. Myeloma’s been one of the real success stories of modern oncology in terms of how much research has translated into improved options for patients.

But, many new things continue to evolve. It can be challenging to feel like you’re abreast of what’s going on. I think there are great resources for patients. Organizations like the International Myeloma Foundation, the Multiple Myeloma Research Foundation, or Leukemia and Lymphoma Society are good places for patients to start.

I also think that social media can be useful although those types of things can be a bit of a double-edged sword. I certainly find lots of things out via Twitter, and I think there’s a pretty active myeloma community in some of those areas, but you have to be a little bit careful about where you point your attention when you’re interacting with the internet. I think there can be lots of places where you might get less up to date or less thorough information and that can sometimes be concerning or challenging for patients So, I do think it is great that we have tools, but it is important to be thoughtful about how you approach them and trying to find good, reliable resources in that regard.

 I think there’s a lot of really exciting things on the horizon. That’s gonna include using tools that we have in better ways. I think we’re gonna be expanding our approaches to how we treat newly diagnosed patients. It looks like we’ll be starting to use four-drug regimens in patients with newly-diagnosed myeloma in the near future, hopefully with ever-improving results. We’re gonna be more cutting edge in terms of how we test and measure disease, using things like minimal-residual disease testing in different and expanded ways.

And then there’s a number of immunotherapeutic treatments especially that are looking very promising in relapsed myeloma.

That includes CAR T-Cell therapies, bispecific monoclonal antibodies, and antibody drug conjugates, all of them look like really promising approaches and really new things that hopefully in the not-distant future are gonna expand our toolbox for how we’re able to help maintain and improve life for patients with multiple myeloma.

New Developments in Myeloma Therapy

This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

 

Adriana Rossi, MD – Speaker Bio

Know What Your Doctors Know: Multiple Myeloma

This video was originally published by the National Comprehensive Cancer Network on April 15, 2019, here.

Experts discussed updates in the treatment of multiple myeloma during live webinars hosted by the National Comprehensive Cancer Network (NCCN) on April 15 and 16, 2019.

Get The Best Myeloma Care NOW: A Physician’s View

Get The Best Myeloma Care NOW: A Physician’s View from Patient Empowerment Network on Vimeo.

Advocating for yourself is critical when diagnosed with multiple myeloma. Dr. Peter Forsberg details the value of collaborating with your healthcare team on treatment decisions.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

Should You Consider a Second Opinion? Advice from a Myeloma Advocate 

Find Your Voice Myeloma Resource Guide

Transcript:

Patient education and self-advocacy I think are critical in multiple myeloma. Myeloma is a complicated disease. Getting your head around it can be challenging. Beyond that we have more and more treatments. Treatments are fairly complex. Our goals can be pretty different patient to patient. So really, patient education can be a key to understanding that and removing layers of complexity from something that can be a little challenging to get into.

I think self-advocacy is also really important in that, sometimes you can feel swept up into a wave of what the next treatments are gonna be, what the next steps are. So, making sure you’re taking time to voice your opinions or concerns for yourself, to make sure that you’re not leaving stones unturned in terms of what your best options are, what the best next steps are, what treatments or testing might be available.

I think myeloma, maybe more so than even some other diseases because it’s such a unique type of cancer, one where patients are often dealing with it for many years… Making sure that there’s a good level of education that evolves over time can help make sure that the patients get the best out of their treatments; to make sure that they’re able to have the most fulfilling experience dealing with their cancer and with their cancer team, and making sure that they’re advocating to get all options available to them in the mix potentially.

I think patients are often very thoughtful about knowing that providers are busy and that clinic can be kind of fast-paced, but I want to make sure that they know that the last thing that they’re ever doing is bothering me or other members of my team when they ask questions. I think one of the keys to making sure that everybody is comfortable with the steps we’re taking with their myeloma is to recognize that it’s a team. And the patients and myself and other members of my team, you know I think that the goal is for all of us to be on the same page and to understand what we’re working towards.

So, I think that my philosophy about how best to take care of patients tis to try to make it as collaborative as possible. To make sure people understand what we’re doing and why. And to be all on the same page I think you have to feel comfortable to take a moment to say, “Why are we doing this?” or to voice concerns about what’s going on or what the next steps might be.

Clinical Trial Toolkit

ASH 2018 – Latest News and Research in Multiple Myeloma

ASH 2018 – Latest News and Research in Multiple Myeloma from Patient Empowerment Network on Vimeo.

Dr. Amrita Krishnan, Director of the Judy and Bernard Briskin Center for Multiple Myeloma Research, City of Hope, shares the latest news and research that was shared at the ASH 2018 conference in the field of Multiple Myeloma.


Transcript:

Esther Schorr:

Hello to everybody.  This is Esther Schorr with Patient Power, and I’m here today at the 2018 ASH conference, the American Society of Hematology.  And I’m surrounded by, oh, 20-, 25,000 amazing researchers and clinicians who are studying hematological malignancies.  And I have about me today Dr. Amrita Krishnan.  Is that correct?

Dr. Krishnan:
That’s correct.

Esther Schorr:
And she is the Director of the Multiple Myeloma Program at the City of Hope in Los Angeles.  Thank you for being here.  So what I wanted to talk to you about today is what’s going on for myeloma patients.  What are the headlines from ASH this year?

Dr. Krishnan:
Good morning, Esther.  Thank you for the opportunity to talk.  I don’t even know where to begin.  There’s—every myeloma session has been packed, standing room only, which tells you obviously, number one, the advances we’re making and the enthusiasm regarding them.

I’d say the three biggest news really is obviously CAR-T cells in relapsed disease, and we started out just hearing about one CAR-T construct, the BB121.  Now we obviously are hearing many other companies presenting their results and other CAR-T constructs, which I think is very good for us because we can understand better both the technology as well as side effects and efficacy and understanding among different T-cell constructs.

The other big thing, I would say, antibody drug conjugates by specific antibodies.  And then the last but not least let’s not forget in terms of stem cell transplantation there was a big session this morning looking at new drugs in the maintenance setting, so specifically oral proteasome inhibitors.

Esther Schorr:
Oh, boy.  Okay.  So now I’m going to drill down a little bit from a lay person’s standpoint about what you just said.

Dr. Krishnan:
Okay.

Esther Schorr:
It’s a lot of alphabet soup.  So I know that you’ve been doing some work with the drug daratumumab (Darzalex).  It’s a mouthful, and I know that that’s a monoclonal antibody.  And can you talk a little bit about what the relevance is about that?  Because I think our audience has probably heard of it but doesn’t know what’s happening in that area.

Dr. Krishnan:
Sure, happy to.  So daratumumab targets CD38, which is a protein on the myeloma cell.  So it’s very specific in terms of attacking the myeloma cell.  Now, that protein is expressed in other things like red blood cells, but really it’s very highly expressed on plasma cells, sort of the myeloma cell per se.  So daratumumab was already approved for relapsed myeloma, both multiply relapsed as well as patients who have a first relapse in myeloma in combination with some of the other drugs we think about such as bortezomib (Velcade) or lenalidomide (Revlimid).

This meeting this year, though, the big excitement is in regards to using daratumumab in newly diagnosed myeloma.  So we already know it’s a very effective drug in the relapsed setting.  We’re familiar with the toxicity profile, and overall it’s quite well tolerated, and so now the question becomes if it’s such a good drug should we move it earlier in the course of therapy to get the maximum benefit.

Esther Schorr:
So it could be a first-line therapy.

Dr. Krishnan:
Exactly.  So it’s already approved in the first-line setting in combination with Velcade, melphalan (Alkeran) and prednisone (Deltasone), so VMP, but that’s not a regimen we use in the United States.  So there’s going to be an abstract presented Tuesday, so I can’t even tell you yet because it’s a late breaker, but we only know a little hint of it which is using daratumumab plus lenalidomide and dexamethasone (Decadron) in newly diagnosed patients.  It’s called the MAIA study, and that’s the one that we’re all waiting to hear to see is that going to establish a new standard of care in the newly diagnosed front-line setting.

Esther Schorr:
So that helps me to understand that, thank you.  So then are there other studies that you’re involved in that would be interesting for patients to know about?

Dr. Krishnan:
So there’s another study that actually was presented yesterday.  It’s called the GRIFFIN study.  That uses daratumumab in combination with sort of I would say a quote/unquote standard regimen in the United States, RVD or lenalidomide, Velcade and dexamethasone.  And what it asks again the same question.  If you add to our standard backbone another potent agent, does it even further improve the responses?  So what they presented on Saturday was very early data on 16 patients, so we need to wait more, but it just shows you the excitement around that.  And that data they presented really was around the safety and suggesting that it’s a well-tolerated combination with a very high response rate, 100 percent response rate.

Esther Schorr:
Well, that would be my question then just as a care partner myself is when you’re talking about doing those kinds of combinations of two, three, four drugs are you all looking at the combined toxicity of those things and the side effects?

Dr. Krishnan:
Oh, yes, absolutely.  So the MAIA study, for example, very specifically looked at the three drugs of daratumumab plus len-dex comparing it to the two drugs, lenalidomide and dexamethasone, so–and the same thing with the GRIFFIN study.  That also was randomized so half the people got daratumumab in combination, the other half just got the standard RVD.

And there was, to be fair, a lightly higher increase in side effects when you added the daratumumab, a bit more infections and a bit more blood toxicity, so lower white counts.  So it is something to sort of, you know, take as a note of caution too, when you add more drugs that you do certainly expect that you are going to get more toxicity.  And obviously it becomes does the benefit outweigh the potential risk.

Esther Schorr:
As usual.  So I guess the other question I have is where does stem cell transplantation fit in all of this, or does it?

Dr. Krishnan:
So obviously I have a somewhat biased opinion.  I come from City of Hope, which is the largest transplant center in California, and two things I could say in terms of myeloma.  So we do over 8,000 transplants a year in the United States for myeloma, so it suggests that it’s a standards of care backbone of therapy.

As a transplanter I would say transplant still has the longest track record in terms of remission length and even if you compare it to standard RVD chemotherapy you get a longer remission when you throw transplant into that mix.  And I think what will be of interest to us is further improving upon that by either different maintenance strategies or induction strategies, so new treatment before the transplant as well to further improve the outcomes of the transplant.

And then the other thing I should mention, this is not a study that is open yet but it’s a study that we actually had some meetings about through the BMTCTCN, so a cooperative group of transplant networks, trying to ask the question.  So this is a group—you know, I used to chair the myeloma committee, and I’m still on the committee—we try and look ahead.  Right?  So we say, what can we do as a strength of network of transplant centers that patients really need?  What is the question they want to ask?  And one of the unmet needs is high risk-myeloma.  So whatever we do right now, and there’s been data presented at this meeting too, we need to do better.

For those patients who have advanced stage of myeloma, high-risk cytogenetic abnormalities, the therapy we have right now is still not optimal.  And one of the things that we’re going to do that we’re very excited about is we’re going to open a study that we’re literally going to go home and start writing in January, using CAR-T cells after an autologous transplant for patients with high-risk myeloma.

Esther Schorr:
So that gives—that’s hope for patients that have not had any real viable treatments till now or durable ones.

Dr. Krishnan:
I think that durable is what we would say.  So we’re all very excited about that.  It’s going to harness our strengths as transplanters, our strengths in cellular therapy and CAR-T and moving it up front.

Esther Schorr:
Good.  Well, thank you, Dr. Krishnan for all the work that you and your associates are doing.  I know that it’s, especially for myeloma patients and their families, it’s so important.  So thank you.

This is Esther Schorr from San Diego at the ASH conference.  Remember, knowledge can be the best medicine of all.

A Conversation With Becky Pleat

Specialty Pharmacy and the Patient Journey with Specialty Medication

In this segment of A Conversation With, Becky Pleat the Associate Director of Medical Managed Care Oncology Specialist at Sanofi discusses specialty pharmacy and the patient journey. Becky answers the following questions:

  1. What is a specialty drug?
  2. What is a specialty pharmacy?
  3. Where can patients find a specialty pharmacy?
  4. How do patients receive a specialty medication?
  5. Will a specialty medication be covered by a patient’s health plan?
  6. What kinds of services and/or resources are offered at specialty pharmacies?

Medication Maintenance Tips for Caregivers

Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.

Make Sure Providers Are Aware Of Vitamins And Supplements

Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.

Instructions

Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.

Alarms

Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.

Keep A List

Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.

Smartphone apps can also be helpful in tracking this information.

Follow Up

It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.

Store Medications Properly

Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.

When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:

  • Odd smells
  • Discolored pills, tablets and injections
  • Cracked or crumbled pills
  • Pills and tablets that are stuck together
  • Creams and ointments that show separation
  • Cloudy injections

If you see these signs, contact your senior’s pharmacist as soon as possible.

Sort Medications Into Pill Organizers

Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.

Make Sure All Caregivers Know About Medications

A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.

Plan Ahead For Refill Needs

Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.

Consider Compounding Medications If Needed

Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.

Get Tips from A Medical Provider

When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.

Always Communicate With Family Members

Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.

On the Horizon for Multiple Myeloma

ASH 2018 Conference Coverage

Dr. Elisabet Manasanch, Assistant Professor Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center, shares what’s the latest and on the horizon for Multiple Myeloma.

ASH 2018 – Multiple Myeloma Highlights

A Multitude of Options in Myeloma

Dr. Robert Orlowski, Director of Myeloma and Professor in the Departments of Lymphoma/Myeloma and Experimental Therapeutics at The University of Texas MD Anderson discusses the multiple myeloma highlights and what patients can be excited about from the ASH 2018 meeting.


Transcript:

Esther Schorr: Hi there. This is Esther Schorr from Patient Power coming to you from ASH 2018 in San Diego, and I have with me today Dr. Bob Orlowski who has joined us at Patient Power before. He’s the Director of Myeloma and Professor in the Departments of Lymphoma and Myeloma and Experimental Therapeutics—that’s a very long title—at the University of MD Anderson—University of Texas MD Anderson. Sorry.

Dr. Orlowski: Thanks very much for having me.

Esther Schorr: I’m glad you’re here again.

Dr. Orlowski: It’s a pleasure to be back on Patient Power.

Esther Schorr: Thank you, sir. So what’s going on in myeloma now at ASH? What are the highlights? What are patients going to be excited about, and what are you excited about?

Dr. Orlowski: One of the exciting areas is definitely talking about the different therapies that are targeting what’s called BCMA or B-cell maturation antigen. This is a protein on the surface of myeloma cells, and the excitement about it is it’s a target which is almost only on myeloma or normal plasma cells, not on other kinds of tissues. And that’s important because if you want to target for immunotherapy, you don’t want that target to be on too many normal cells, or the immune therapy will kill those cells and cause side effects.

So there are really three categories of drugs now that are looking very attractive. One is what’s called an antibody-drug conjugate. So this is a plain old antibody that has another chemical attached to it, and it’s given usually IV right now, attaches to the myeloma cell. It then gets inside the cell and the drug is released. So the antibody is essentially like a carrier molecule.

Esther Schorr: Kind of like a cruise missile?

Dr. Orlowski: Sort of like that. I like that analogy, yes. And then it blows up, using that analogy, the cancer cell once it’s inside.

So one of the first of these drugs that already is in the clinic is showing a 60 percent response rate in very heavily pretreated patients. The registration study, meaning the trial that hopefully will get it approved by the FDA, has already finished enrolling, so we’re hopeful that maybe by the end of 2019 this drug as a single agent will be available. And it’s really easy to give. It’s IV once every three weeks, which is pretty darn good.

Esther Schorr: And what’s the drug called? I’m sorry I missed that.

Dr. Orlowski: Well, it’s a good question. Actually, it doesn’t have a name yet, which is why I didn’t tell you what it’s called, but the abbreviation for it is GSK 916.

Esther Schorr: Okay.

Dr. Orlowski: And the reason for that is it’s actually quite expensive to come up with a name, because they have to find a name that, first of all, is not confused with other drugs so that it minimizing errors and also one that us poor feeble-minded doctors will remember so that we prescribe it often.

Esther Schorr: We’re not sure how you can remember all the letters anyway. Okay. So that’s one. Is there something else going on that you got to share?

Dr. Orlowski: So a second category of drugs that target the same protein, BCMA, the first formal presentation of those data were shown here at ASH, and this is what’s called BiTE or Bi-specific T-cell engager. And it’s sort of is a molecule, if you want to use the cruise missile analogy, that has two war heads. One end binds to the cancer cell. The other end binds to the patient’s own T cell, brings them together and the T-cell attacks the cancer cell. So it’s a way to use immune therapy with the patient’s own immune cells, and there are reports here of the first one of these which is called AMG 420. Again, doesn’t have a name yet, but it’s showing in very heavily pretreated patients complete responses with MRD, or minimal residual disease, negativity, which is really exciting.

Esther Schorr: So and that’s different than—and we’ll probably talk about it in a minute—that’s different than CAR-T.

Dr. Orlowski: Exactly.

Esther Schorr: Okay. So we can talk about that in a minute.

Dr. Orlowski: Yeah, that would be great. So the next topic is the CAR-T, also against B-cell maturation antigen, or BCMA. It’s a little more complicated though because what you have to do is you take out the patient’s own T cells and then in a laboratory you infect them with a virus. The virus has a gene in it that expresses a receptor on the T cells so that they can better recognize the cancer cells.

Esther Schorr: An invitation.

Dr. Orlowski: Exactly. Kind of. I like that.

Esther Schorr: Okay.

Dr. Orlowski: And then you infuse the cells back into the patient. They find the cancer cell, they attack it, and they kill it. So it’s great, because it’s personalized. It uses the patient’s own T cells. The problem is that it takes two to four weeks to manufacture the cells after they’ve been taken out of the patients, and so in the meantime the myeloma can sometimes be creeping up. So that’s one problem.

And also there are activities with the disease or with the T cell against myeloma, but there are also some side effects like cytokine release syndrome. But the response rates with some of the more advanced molecules are in the 90 to 100 percent range, and the durability of that is at least a year to 18 months, depending on what patient population you look at. And those are the most mature data of the three categories of immune therapies that we’ve talked about.

Esther Schorr: So of those three are any of them being looked at for first-line therapy, or these are at the moment still for people who have relapsed or are more difficult cases?

Dr. Orlowski: Right now it’s more for very advanced disease, but there are already trials planned with all three of these technologists in earlier patients and some in newly diagnosed patients, especially those with high-risk disease, because they still don’t do as well with standard therapies that we have. So it’s really an exciting time because these are some of the best results we’ve had in very difficult to treat patients, which means they should work even better when we give them earlier.

Esther Schorr: So one other question then. What’s happened to stem cell transplants for multiple myeloma patients? With all of these new combinations of treatment s, where is that in the mix of consideration for treatment?

Dr. Orlowski: Stem cell transplant is still considered part of the standard of care for patients with newly diagnosed myeloma, and in some cases it can be used for relapsed disease, especially if the patient had a really good durable benefit with a first transplant. The advantage of the stem cell transplant right now is that it with works very well, the toxicity profile is very well defined, and compared to a CAR-T cell it’s actually relatively cheap. But as the technology hopefully becomes cheaper and more available there would be great interest in comparing outcomes of people getting chemo plus a transplant, for example, versus chemo plus a CAR-T cell.

Esther Schorr: So it sounds like there’s a lot more options that are coming up for multiple myeloma patients. Is there anything else that patients that are listening would want to know about, that they should feel good about?

Dr. Orlowski: Well, there’s a lot more data with other immune therapies including earlier use of daratumumab (Darzalex), which is an anti-CD38 antibody. One of the presentations, which is still to come on Tuesday, shows the data of that drug with lenalidomide and dexamethasone in previously untreated patients, and the results really look excellent. So that will probably be one of the new standards of care for transplant ineligible patients. And there are studies ongoing with daratumumab in transplant eligible patients as well.

Esther Schorr: That’s a lot.

Dr. Orlowski: And that’s not all of it, but I think that may be all we have time for.

Esther Schorr: Thank you so much, Dr. Orlowski, for being with us again and making this a little more comprehensible for us normal mortals.

Dr. Orlowski: Thank you very much.

Esther Schorr: This is Esther Schorr coming to you from ASH. And remember, knowledge can be the best medicine of all.


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