Can You Live a Normal Life With Multiple Myeloma? Real Answers From Myeloma Experts 

Dr. Joseph Mikhael:
Hi, everybody. Dr. Joe here from the International Myeloma Foundation.
Beth Faiman:
And I'm Beth Faiman. I'm also from the International Myeloma Foundation's Nurse Leadership Board. And I'm thrilled to be here today.
Dr. Joseph Mikhael:
Beth and I are here with you today to answer the huge number of questions that come in across our social media channels, on X, on Facebook, on Instagram, and on YouTube. But just before we dive into those questions, Beth and I have a favor to ask of you.
Beth Faiman:
Well, nearly 70% of people that watch this channel aren't actually subscribed.
Dr. Joseph Mikhael:
So, take a moment to hit that subscribe button because it'll allow us to reach even more people who are searching for answers about multiple myeloma.
Beth Faiman:
The questions that you care about and the questions that you ask are those that shape this channel.
Dr. Joseph Mikhael:
So, here we go. Let's dive into these questions that you've sent in.
Beth Faiman:
So, this question is from Shelly. Is multiple myeloma always fatal or are people living normal lives with this for years?
Dr. Joseph Mikhael:
Well, we are truly changing the course of multiple myeloma. When I started in myeloma many, many years ago, most of our patients didn't live one or maybe even two years with the disease. Now the average survival of our patients is more than 10 years. Now, of course, there's a huge spectrum. Sadly, there's still patients that succumb to this disease within the first year or two, but the vast majority of our patients are living much longer. So, really, to answer your question, Shelly, it is not universally fatal. Yes, there are patients that are living very long lives with this disease, more so than the quantity of life, also the quality of life. These new therapies that we have in myeloma have really changed the experience that our patients have, allowing them to continue to work, to have time with their families, to do the things that they want to do.
There are, of course, challenges and there are side effects and there are things that have to change in patients' lives, but we are seeing a complete change in the way patients are living with multiple myeloma, and it's very encouraging to see that happen. This question comes to us from Mark. And he asks, "What does life actually look like in the first few months after a myeloma diagnosis?"
Beth Faiman:
So, Mark, that's a very interesting question because I get this all the time. So, you go through this period of time, many of the patients, where they have this MGUS, a little extra protein that is in their blood or their urine. And it's watched regularly. Some patients will then go into a smoldering category where you're watched a little bit closer. And then ultimately, fortunately, if we've had time to watch patients for this, they'll go into a myeloma. So, that's where I get this question a lot is, what is it going to look like when I actually need treatment? So if you've been monitored for MGUS or smoldering myeloma, you're ahead of the game. So, knowledge is power and hopefully you'll be prepared. But unfortunately, sometimes patients don't have that luxury of knowing that they have a pre-malignant condition. It's oftentimes an information gathering time. Sometimes for people, it's a deer in the headlights, where you have a care partner or somebody's spouse, significant other that helps them information gather.
But after that first few months, we get a game plan. One thing I wanted to underscore is if you're newly diagnosed with multiple myeloma, it's really important to seek an expert opinion to hopefully work with your community oncologist, if you're in the community, and an academic center so you can information gather and plan a journey that is right for you.
Dr. Joseph Mikhael:
And of course, connect with the IMF. Whether it's through the website at myeloma.org, through our info line, through our AI chatbot, through all of the educational offerings we have. In those first few months of the diagnosis, it can be very challenging. It can be very intimidating, but we're here for you and we want to walk through it with you.
Beth Faiman:
The next question comes from Brad. "I'm only just learning about these new treatments. Am I already behind because I didn't know about my options earlier?"
Dr. Joseph Mikhael:
Well, it's a great question, Brad, and I would say you are not behind. The fact that you are engaging in your care, that you're learning about the options, is so important. The days of you just go to the doctor and they tell you what to do or tell you what to take have really gone. We believe in the model. And I know the Nurse Leadership Board very much believes in the model of what we call shared decision-making, where the patient and their team and the healthcare team come together, look at all of the options and decide what's best for everyone together. So, it's not a on way street, it's a two-way street. So, you're being empowered, Brad. And we hope through these videos, through all the offerings of the International Myeloma Foundation, that you can be prepared for those conversations. As Beth always says, knowledge is power.
Beth Faiman:
Absolutely. And the treatment is changing rapidly. We have American Society of Clinical Oncology meetings, we have ASH meetings, and we're always gathering new information. So, stay with the International Myeloma Foundation and you can learn more about your treatment options as they're currently evolving as I speak, right?
Dr. Joseph Mikhael:
Absolutely. All right. Let's take another question here, Beth, that comes to us from Tim. And Tim asks a very challenging but I think critical question. "How much of my life is going to revolve around cancer now?"
Beth Faiman:
Tim, that's a great question because it's different for everyone. Everybody who's diagnosed with myeloma is at a different stage in their life. So, for some people, you're working full-time, you're supporting your family, others might be retired. I think it's important to keep in mind what your goals of care are. Your goals of cure versus control of the disease varies for everyone. As far as let's say that you're a young 50-something man who's working full-time, talk with your healthcare provider about what your important needs are. Do you need to work full-time? And so, tailoring your treatments around your work schedule or vacation schedule is important. We do have some flexibility around that as healthcare providers. So, share your concerns, talk with your healthcare team and we'll find a treatment plan that's right for you.
Dr. Joseph Mikhael:
I'll just add to that, that myeloma does not define you. We've had a recent campaign of more than myeloma to remind everyone that our patients and all of us in the field are more than myeloma. So, yes, cancer sadly is going to be a big part of your life, but not everything in your life will revolve around it. And we want to empower you to enjoy life to its absolute full.
Beth Faiman:
Absolutely. Frank said, "I was just diagnosed and I don't even know where to start. What questions should I ask my doctor when I don't even know what to ask?"
Dr. Joseph Mikhael:
What a great question, Frank. I'm very sorry about your diagnosis, but I'm glad you're already engaging with us to gain the information that is going to help you with this diagnosis of multiple myeloma. I know there are so many things to learn and so many things to understand, but sometimes I break it down to three simple questions you want to make sure you ask your doctor. Number one, do I have standard risk or high risk myeloma? Because we tend to divide it into two categories that might influence treatment. Question two, what are my baseline numbers of multiple myeloma? What I mean by that is, what are we going to be measuring as you're being treated to see that the myeloma is responding? Sometimes we follow something called the M spike. Sometimes we follow something called the light chain level. It's different for every patient. And we want to make sure that we know exactly what we're following as we go through.
And then number three, what is the treatment plan? What is the combination of drugs, typically four drugs together, combination of drugs that we're going to use to tackle this multiple myeloma? With those three questions, Frank, that'll start you in the right direction to work with your healthcare team. But remember, you're allowed to ask many more questions. It's important to develop that relationship with your team, where it's open and honest communication that is going to guide your treatment.
Beth Faiman:
And I would just like to add the Nurse Leadership Board a few years ago created something called a myeloma discussion tool. It's online in myeloma.org. So, if you're wondering about what questions to ask, there are some questions in there that might be really important. And it's a little piece of paper that opens and closes and you can write down your questions for your doctor and share what's important to you. Do you want cure versus control or just to get the disease under control? So, if you go to myeloma.org and type in the shared discussion tool or Milo, the chatbot will help you find it as well. Then that might be another way to... You can organize your thoughts and ask the right questions that are important to you.
Dr. Joseph Mikhael:
How do I know if I'm receiving the most up-to-date treatment available?
Beth Faiman:
So, Kim, there are so many different factors that go into the decision as to whether or not this is the best treatment for you. Whether you're newly diagnosed or relapse, that varies. What's important, to stay up to date on cutting edge treatments. We also have patient and family seminars with the International Myeloma Foundation, regional community workshops, and of course, ask your healthcare team. Ask them if they're up-to-date on the latest and greatest information that you might need to know. Also, ask if you're a candidate for clinical trials. There's so many great clinical trials out there. And clinical trials aren't for last ditch effort anymore. It's for any stage of disease, which I think we'll talk about later on as well.
Dr. Joseph Mikhael:
And make sure you subscribe to the IMF, where we will be able to provide to you resources that keep you up to date. We have a weekly myeloma minute, a quarterly myeloma today, and a whole host of resources that are available to you so that you can be up-to-date and know what is the latest and greatest in multiple myeloma.
Beth Faiman:
So, let's go to our next question. John asks, "Should I always get a second opinion and how do I know who to go to?"
Dr. Joseph Mikhael:
Well, great question. And the answer is almost always yes. We know that myeloma is complicated. We know that there are many of us in this country and around the world, actually, who dedicate our practices to multiple myeloma. We call the myeloma expert. In fact, I tend to call it, Beth, the expert opinion, as opposed to a second opinion, because the second opinion might make it sound like the first one was wrong. And the reason for that is that in most of our patients who are treated in the community, their community oncologists are doing great jobs, but they're treating about 40 different tumor types. And so, it may be hard for them to keep up with the latest.
And the partnership between a myeloma expert and the community oncologist is really a beautiful thing that can help the patient ensure that they get the most up-to-date treatment, but that they get it locally and conveniently delivered close to where they live. So, we do encourage people to consider an expert opinion and call us on the info line. Reach out to us at the IMF and we can help you find someone nearby who is a myeloma expert.
Beth Faiman:
And I recommend to all my patients to get an expert opinion within the first few months of diagnosis. Again, you want to start that partnership with an academic or expert center. And as Dr. Joe mentioned, the community oncologists do a great job in the community. And you might never need to access any additional resources, but the academic centers do have access to clinical trials, CAR T-cell therapies, and all these innovations. And so, I want you to get the best treatment for you and the right drug at the right time, at the right dose. And so, forming that team early on in the diagnosis can only help increase your options and hopefully increase your outcomes.
Dr. Joseph Mikhael:
Well, let's come to another question that is asked to us by Derek. "Are clinical trials only for people who have run out of treatment options?"
Beth Faiman:
No. So, Derek, clinical trials are available at all different parts of the trajectory. So, I like to just briefly review what the phases of clinical trials are. So, there's a phase one of clinical trials where it's a small group of people, usually under 50 people, that test all different cancer types, myeloma, leukemia, lymphoma. And then we see the right dose of the drug and if it's effective in that disease group. The second phase, phase two trials, you see commonly in myeloma in relapse populations or early relapse populations and everybody gets that drug. It's a larger cohort of patients. And we still sometimes are finding the right dose, but it's all designed for safety. And then we determine the efficacy. Phase three clinical trials will compare a standard of care therapy to the investigational therapy. These are your randomized trials. These are the ones that go towards FDA approval.
It's really important, if you are a patient with myeloma, to talk to your healthcare team as to whether or not you're a candidate for clinical trials, whether it's a therapeutic trial with a drug or a supportive care trial, maybe testing a new bone therapy or doing bone marrow biopsy samples. So, there's lots of different types of clinical trials. Find out if there's one that's right for you. And you can go to myeloma.org, SparkCures as well, if you wanted to see a list of clinical trials that might be in your area. Kimberly says, "What happens if I join a clinical trial and it doesn't work?"
Dr. Joseph Mikhael:
Well, thanks for this great question, Kimberly. We encourage patients to look at their options in clinical trials, because we know that clinical trials are not only to help the whole field and to help others, but to help use the individual patients. So many of our patients benefit from a clinical trial that provides them an option that is otherwise not available or before they're fully available and fully approved. So, entering a clinical trial gives a patient that new therapy, which may or may not work. And when it doesn't work, like with any other therapy that may not work any longer, we now look at the various options that we have, whether it be a clinical trial or whether it be a standard of care. Having been on a clinical trial will not disqualify you from being able to have those standard treatments. Well, unfortunately, that's all the time we have for today.
Thank you again, Beth, for joining me for this Q&A session. Do you have more questions that we didn't get to today? Lots of ways you can have your questions answered. One way is, right at the bottom of this video, there's a comments section. And if you start your question with the number sign or hashtag, ask the IMF and then add your question, we will get that question and we'll do our best to answer it as quickly as possible. But of course, come to us at myeloma.org and learn about all the different other places that you can ask questions. Not just on social media, but at our live events, at our virtual events. We're here for you and we want to be able to answer the questions that we know are important to you.
Beth Faiman:
And if you like these videos, hit subscribe and follow the International Myeloma Foundation to learn about more content and more opportunities for education.