What Key Tests Should Follow a Myeloma Diagnosis?

 

What Key Tests Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

What are the key tests that should take place following a multiple myeloma diagnosis? Dr. Peter Forsberg details the appropriate tests, including imaging and blood tests, that may aid in assessing the risk and informing treatment options.

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

Essential Tests & Imaging After a Myeloma Diagnosis

How Do Myeloma Test Results Guide Prognosis and Treatment?

How Do Myeloma Test Results Guide Prognosis and Treatment?

What Are Key Factors in Myeloma Treatment Decisions?

What Are Key Factors in Myeloma Treatment Decisions?

Transcript:

Katherine:                  

What testing should take place following a myeloma diagnosis?

Dr. Forsberg:             

So, after a patient is diagnosed with myeloma, or with suspected myeloma, a number of tests take place to both understand the myeloma. Get some sense for how aggressive the myeloma might be and understand what may be being caused by the myeloma at any given time. So, that involves a number of blood tests. It involves checking urine, doing at least one 24-hour collection of urine. Doing imaging, tests to look at the skeleton or different areas of the body for myeloma involvement.

And a bone marrow biopsy and what’s called an aspirate.

So, all those tests together are used to help confirm myeloma, to understand what’s going on with it and then to understand some of the characteristics of it that might be important over time.

Some of the more complicated tests when people are initially diagnosed with myeloma to get their head around are some pretty important blood tests that we monitor pretty closely.

Things called the serum protein electrophoresis and serum light chain assays. And basically, those are tools that help us measure antibodies. Myeloma is a disease; it comes from cells that make antibodies or fragments of antibodies. And by measuring those, we can understand the myeloma, we can give it some names. And then we can also measure it over time. So, those can seem a little bit impenetrable to patients when they’re first diagnosed, but they’re pretty important for patients and for people treating the myeloma to understand where the myeloma stands and how things are going.

Katherine:                  

What about genetic testing?

Dr. Forsberg:             

So, the main way that we use genetic testing in multiple myeloma is through something called, cytogenetics. And cytogenetics is a way for us to evaluate chromosomes. Chromosomes are in cells and that’s where genetic material is contained. And in myeloma, some of the main vents that drive myeloma cells to change from normal plasma cells come through changes in chromosomes.

And so, those chromosome changes that can be detected with different tests, sometimes they’re called karyotyping or what’s called FISH can give us a sense for some of the changes that may drive the myeloma or have driven it in the first place.

What is Multiple Myeloma?

 

What is Multiple Myeloma? from Patient Empowerment Network on Vimeo.

What is multiple myeloma exactly? Dr. Peter Forsberg defines myeloma, explaining how it affects bone marrow, and shares details about myeloma statistics and treatment in the U.S.

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

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner

How Can Myeloma Patients Advocate for the Best Care?

Debunking Common Myeloma Misconceptions

Transcript:

Dr. Forsberg:             

So, multiple myeloma is a blood cancer. It comes from cells that live in your bone marrow called plasma cells. They’re part of your immune system. And when they do their job, they help protect you from infections.

They’re antibody producing cells. In myeloma, unfortunately something changes in those cells and they begin to grow and live beyond what they normally would. So, myeloma is a disease that results from that and when myeloma is diagnosed, it’s usually because those plasma cells or the antibody they produce has started to cause problems, to cause destructive changes or symptoms. So, that’s multiple myeloma.

And it’s maybe a little more common than people sometimes think. It’s got an unusual name, so most folks haven’t really heard of myeloma when they’re diagnosed with it. But it is the 14th most common cancer and there are about 30,000 cases diagnosed each year in the U.S. and at this point, more than 150,000 people living with myeloma. And that’s because more and more people are living with myeloma all the time. Advancements in treatment have made people live longer and live better with myeloma.

Myeloma Treatment Decisions: What’s Right for You?

Myeloma Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When choosing an myeloma treatment, what should be considered? Dr. Peter Forsberg, a myeloma specialist, reviews key decision-making factors, treatment options for myeloma, including combination approaches, and shares advice on advocating for yourself.

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.

Download Program Resource Guide

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner

Essential Imaging and Chromosome Tests After a Myeloma Diagnosis

How Targeted Therapy Works to Treat Myeloma

Transcript:

Katherine:                  

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’ll discuss how you can be proactive in your myeloma care. And work with your healthcare team to find the best treatment plan for you.

Joining me is Dr. Peter Forsberg. Dr. Forsberg, thank you so much for joining us. Joining me is Dr. Peter Forsberg. Dr. Forsberg, would you please introduce yourself?

Dr. Forsberg:             

Sure. My name is Dr. Peter Forsberg. I’m a multiple myeloma specialist. I work at the University of Colorado and I’m happy to be here.

Katherine:                  

Thank you. A reminder that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be right for you. Well, Dr. Forsberg, let’s start with the basics. What is multiple myeloma?

Dr. Forsberg:             

So, multiple myeloma is a blood cancer. It comes from cells that live in your bone marrow called plasma cells. They’re part of your immune system. And when they do their job, they help protect you from infections.

They’re antibody producing cells. In myeloma, unfortunately something changes in those cells and they begin to grow and live beyond what they normally would. So, myeloma is a disease that results from that and when myeloma is diagnosed, it’s usually because those plasma cells or the antibody they produce has started to cause problems. To cause destructive changes or symptoms. So, that’s multiple myeloma.

And it’s maybe a little more common than people sometimes think. It’s got an unusual name, so most folks haven’t really heard of myeloma when they’re diagnosed with it. But it is the 14th most common cancer and there are about 30,000 cases diagnosed each year in the US and at this point, more than 150,000 people living with myeloma. And that’s because more and more people are living with myeloma all the time. Advancements in treatment have made people live longer and live better with myeloma.

Katherine:                  

What testing should take place following a myeloma diagnosis?

Dr. Forsberg:             

So, after a patient is diagnosed with myeloma, or with suspected myeloma, a number of tests take place to both understand the myeloma. Get some sense for how aggressive the myeloma might be and understand what may be being caused by the myeloma at any given time. So, that involves a number of blood tests. It involves checking urine, doing at least one 24-hour collection of urine. Doing imaging, tests to look at the skeleton or different areas of the body for myeloma involvement.

And a bone marrow biopsy and what’s called an aspirate. So, all those tests together are used to help confirm myeloma, to understand what’s going on with it and then to understand some of the characteristics of it that might be important over time.

Some of the more complicated tests when people are initially diagnosed with myeloma to get their head around are some pretty important blood tests that we monitor pretty closely.

Things called the serum protein electrophoresis and serum light chain assays. And basically, those are tools that help us measure antibodies. Myeloma is a disease; it comes from cells that make antibodies or fragments of antibodies. And by measuring those, we can understand the myeloma, we can give it some names. And then we can also measure it over time. So, those can seem a little bit impenetrable to patients when they’re first diagnosed, but they’re pretty important for patients and for people treating the myeloma to understand where the myeloma stands and how things are going

Katherine:                  

What about genetic testing?

Dr. Forsberg:             

So, the main way that we use genetic testing in multiple myeloma is through something called, cytogenetics. And cytogenetics is a way for us to evaluate chromosomes.

Chromosomes are in cells and that’s where genetic material is contained. And in myeloma, some of the main vents that drive myeloma cells to change from normal plasma cells come through changes in chromosomes.

And so, those chromosome changes that can be detected with different tests, sometimes they’re called karyotyping or what’s called FISH can give us a sense for some of the changes that may drive the myeloma or have driven it in the first place.

And also, some of the tools that tell us a bit how aggressive the myeloma may be. Certain changes within chromosomes may say that a myeloma may be a little bit more on the aggressive end of the spectrum. Because it is certainly a spectrum of aggressiveness that myeloma can display.

Katherine:                  

What do the results of these tests tell us about prognosis and treatment choices?

Dr. Forsberg:             

So, the tests that we do are important in terms of understanding some degree how aggressive the myeloma may be or what the prognosis may be. One of the most common or challenging things to break through when diagnosing myeloma or learning about your myeloma is that it’s a little different than other types of cancer. Unlike other cancers that’re more common, stage in myeloma is very different than it is in breast cancer or lung cancer or things that people may have more experience with. In myeloma, everybody has systemic disease.

That’s a part of the diagnosis of myeloma. It means it’s a body wide condition. So, being stage one or two or three is very different than what it might be in other diseases where that has a huge prognostic impact and also, really shapes what treatment might be. In myeloma, we do use blood tests and chromosomal changes to help us assign a stage to the myeloma, which may tell us about how aggressive the myeloma may be over time.

But our treatment approaches tend to be pretty similar, even for people regardless of their stage. So, our goals are always to get patients’ myeloma under control and maintain it there. So, treatment ends up overlapping pretty substantially. Regardless of what those in initial tests are that stratify potential disease aggressiveness. That being said, there are some ways that we do adjust treatment potentially in patients that we see evidence of potentially more aggressive disease or less. And that might be ways that we amplify treatment regiments, adding extra medicines or using maintenance approaches that’re a little more robust to try to help overcome those high-risk features.

Katherine:                  

What about the significance of chromosomal abnormalities?

Dr. Forsberg:             

So, chromosomal abnormalities are part of some of those staging systems. They’re included in what we call our revised international staging system, as well as just being part of our routine risk assessment.

To try to understand myeloma. So, in myeloma, at this point those genetic changes or chromosomal changes don’t necessarily drive specific treatment choices except in that they may stratify how aggressive disease could be and may be informative in that regard.

Katherine:                  

Are there common misconceptions you hear when you see a new myeloma patient for the first time?

Dr. Forsberg:             

Yeah, I think some of the more common questions that come up involve those questions like I mentioned about things like stage and understanding this unique characteristic to myeloma. Myeloma unfortunately remains an incurable disease in the year 2020. So, some of the questions come up regarding what prognosis or treatment approaches may entail. Certainly, going to not up to date sources can lead to a lot of misconceptions about what our options are and what our outlook might be for myeloma.

And certainly at times, patients wonder where the myeloma came from. Is there something that I did or that I was exposed to that was a real driver for me to develop this. That’s a really common question that comes up. And unfortunately, or fortunately, the answer is not really any that we know well about. So, let me rephrase. So, one question that comes up a lot is what may have caused the myeloma.

Is there something that someone did or was exposed to that drove the myeloma. And truthfully, at this point there aren’t a lot of drivers for myeloma that we know about. So, usually that’s something that can be a little hard to understand or to reconcile. But it is a type of disease that can, unfortunately, can affect anyone. It does get more common as people get older. But aside from some potential genetic impact or mild increased risk in family members and with certain ethnic groups.

Not a lot of historical things that were done might drive the development of myeloma.  

Katherine:                  

Well, Dr. Forsberg, when deciding on a treatment approach with a patient, what do you take into account when making the decision?

Dr. Forsberg:             

So, there’s pretty substantial factors that may impact treatment decision with myeloma. Our goal in almost all patients is to try to get the myeloma under control. Usually when we diagnose myeloma, it’s pretty active. Often, it’s causing significant problems. So, our goal in all patients is trying to get the myeloma under control to some degree.

Now, how aggressive we may be towards that is impacted by a number of things. One of the most important ones is who the patient is. Myeloma is diagnosed and it never develops in a vacuum. It always develops in a person and that person may have substantial other medical problems. They may be younger; they may be older. They may be more fit or more frail. So, those are all factors that may contribute to our initial treatment choice.

Because often, what we’re initially deciding on is how many medicines we may use initially to try to treat the myeloma. And our goal my be to try to push a little harder, to try to achieve the deepest possible remission. In those circumstances, in certain patients, we may incorporate things like a stem cell transplant as one of our second steps.

In patients who are somewhat less robust, we may be thinking that our primary goal is just to achieve and maintain control of the myeloma.

But not necessarily pushing for the deepest possible remission. Balancing the potential side effects from medicines with the importance of stopping the negative affects that the myeloma drives.

Katherine:                  

What about treatment choices? What does that mean exactly?

Dr. Forsberg:            

So, aside from deciding on a spectrum of intensity for therapy that may be the most appropriate for a given patient. In terms of treatment choices, that may be focused primarily on which combination we use to treat the myeloma. There are some pretty standard options that’ve been pretty well validated now.

We’re lucky in myeloma to now have a pretty robust body of data regarding the treatments we use for patients with newly diagnosed myeloma. Incorporating modern, very active and often well tolerated medicines into combinations. But there are emerging questions about how to use new medicines in terms of patients with new myeloma that can be something that’s worth discussion with a provider.

So, sometimes the question may be, which three drug combination. The three-drug combination versus a two-drug combination appropriate. Or should we even be thinking about a four-drug combination to begin the treatment of the myeloma. After that, one of the biggest treatment questions regards the role of stem cell transplant, which remains an important treatment consideration for many myeloma patients diagnosed even in the modern era. After that, the question come around maintenance.

What’s the right maintenance therapies? Because in myeloma, even after getting the myeloma under control, often our best way to optimize people’s long-term outlook is to stay on some amount of continuous medication for the long term.

So, those are all treatment choices that’re made in conjunction with your provider. But it is almost always the right step to begin treatment for the myeloma, to try and stop those destructive changes and to stabilize someone once they’ve been diagnosed.

Katherine:                  

Any talk about treatment goals and what that means?

Dr. Forsberg:             

So, as I mentioned, treatment goals may be different person to person. It takes into consideration who the patient is, what their priorities may be. What’s important for them in terms of not only living with the myeloma, but their life in general. So, there are many patients where our goal is to achieve a very robust, very long duration remission.

And there may be other patients where our goal isn’t just to control the myeloma, but to minimize treatment related side effects. So, our priorities may be somewhat different. But almost always, it is to prevent issues that may come up from the myeloma and we’re luck that often times those treatment goals align with tools we’re able to bring to bear. Our medicines for myeloma can help us achieve the goals of treatment, whether that’s achieving the deepest possible remission and sustaining it or prioritizing quality of life across a very broad patient spectrum.

Katherine:                  

What do you feel is the patient’s role in the decision and how does shared decision making come into play?

Dr. Forsberg:        

So, I think it’s always a really important piece of the puzzle to be a part of the decision-making process. Myeloma can be a challenging disease to understand. There are some pretty significant nuances in terms of what our treatment options are and what our goals may be.

So, I think having a patient who is involved in that process, who is actively asking questions. Engaging their provider if something doesn’t make sense. If our goal is not clear. Trying to make sure that you ask that. As oncologists, a lot of what we do involves communication and trying to help bridge gaps between our understanding of diseases and treatments and what patients see and feel and understand.

So, I think it’s really a critical piece of it for patients to ask questions, to engage. Now, I will say that one of the important things is often when the myeloma is newly diagnosed, we do need to move into treatment in a relatively timely manner. So, engaging with that process, being ready to move forward is our key components.

Katherine:                  

Now that we’ve discussed factors that go into the treatment choice, would you walk us through the currently available myeloma treatment approaches and who they might be right for?

Dr. Forsberg:          

So, I’ve already alluded to some of these. At this point, we’re lucky that we have a much broader toolkit to treat myeloma than we have had in the past. Myeloma is one of the successes in modern oncology in that way. At this point, we have a number of targeted therapies. Some of those are pill-based options, some are injections or infusional medicines. We have some immunotherapies, which are things like monoclonal antibodies, which help to work.

We use some conventional or older fashioned chemotherapy, often lower doses and as part of combinations. And steroids. Steroids are always the medicine that is one of the backbones of our combinations. In myeloma, we do often use combinations. So, it’s usually a mixture of targeted therapies. Sometimes immunotherapies or chemotherapies.

As well as steroids to try to treat the myeloma. And some of the considerations are, which combination makes the most sense. Are there other medical problems or disease related factors like disease aggressiveness that may influence which ones we wanna choose or how many. Also, is a three-drug combination the right fit or is a four or a two drug the right. And it does continue to evolve.

Our options and our ability to use multi-agent regiments has continued to improve as we’ve gotten better and better therapies that’re well tolerated and that allow us to use really active combinations, even in patients who may have substantial other medical problems. So, I think it’s been something that continues to evolve over time and will continue to evolve. But the good news is that it’s been an issue of just how to incorporate more and better options.

How do we bring these good new tools into the mix as early as is appropriate? To control the myeloma in really substantial ways. And again, as I mentioned, the question of the role of stem cell transplant continues to be an important one. That is a way for us to still use older fashioned chemotherapy at a high dose to help to achieve a more durable remission. But usually, the way that we parse through these targeted immunotherapies and chemotherapies, is something that may be individual.

Although, we have some broad principals that help guide us for how we manage patients across different types.

Katherine:                  

How do you decide who stem cell transplant might be right for?

Dr. Forsberg:             

The good news in the United States is that we’re able to be fairly broad in terms of our consideration of stem cell transplant. There is no age restriction above which it’s not. We’ve gotten better and better at supporting patients through stem cell transplant. We have better medicines to deal with potential toxicities. And so, patients do better and better in going through transplant. But it is still an intensive treatment modality. So, in considering it, it is an option for a large portion of myeloma patients at diagnosis. After we get the myeloma under control. But the decision remains an individual one. Some patients may prefer to defer stem cell transplant until a second line therapy or later.

Whereas others feel very comfortable moving forward with it in the first line setting. I would say that it is certainly something that we try to demystify for patients. It can sound a little bit intimidating, certainly because it is a little more intense and requires more support. But it is something that we have gotten quite good at navigating patient and supporting them through.

Katherine:                  

What about maintenance therapy, how does that fit in?

Dr. Forsberg:             

Following initial treatments to get the myeloma under control, whether that includes stem cell transplant or not. Usually we transition into a maintenance therapy. Maintenance therapy is a way for us to sustain control or remission of the myeloma. And make that longer lived.

So, what we use for maintenance may be different patient to patient. But it is a important part of our treatment approach for many patients.

Katherine:                  

Are some therapies less intense than others and what are some possible side effects of those?

Dr. Forsberg:  

So, certainly there are treatments with varying degrees of intensity or potential toxicities. The good news is that as we’ve gained more and more treatment options, we’ve also gotten better at using the ones we have had for a while now to minimize some of their toxicities. So, by adjusting dosing schedule and routes of administration, we’ve gotten better at fine tuning the tools we have toward minimizing those toxicities.

So truthfully, many myeloma patients after you start treatment, actually feel better than before they started chemotherapy because the myeloma itself is a destructive process and the treatments are quite often well tolerated. That being said, certainly over time, treatment related side effects often emerge. Some of the treatment toxicities may cause some challenges in terms of managing patients through their myeloma process. But usually, those can be overcome. Even if that means needing to adjust the treatment protocol.

Adjust doses, change medicines. And so, while there are varying degrees of intensity, we’re usually able to find the right balance for any given patient to still have a very active anti-myeloma regiment while trying to be very cognizant of potential treatment toxicities and taking steps to mitigate that.

Katherine:                  

Where do clinical trials fit in as a treatment choice?

Dr. Forsberg:          

So, I do clinical trials in myeloma, I am certainly an advocate for the important role of clinical trials in myeloma. It is how we learn more about how best to treat patients. So, clinical trials are the foundation on which our decision making has been built and continues to be refined. We are at a place where clinical trials don’t mean one thing. There are different types of clinical trials. Different stages of trials. Some that may be what we call, early phase that’re looking at brand new medicines or medicines in entirely different ways.

And ones that’re late phase, where they may be comparing a well validated standard of care, versus a new approach. So, understanding what the potential clinical trial is and what that entails and what its goals are, are an important factor for patients as they consider participating. But beyond that, trials are a really critical area for us to evaluate new therapies and to get better at using the medicines we have in novel or improved ways.

So, they can be a really useful piece for not only the myeloma community, but for patients as they navigate through. So, I haven’t had many patients who I take care of who participated in clinical trials and been disappointed that they did so. Usually, it’s a positive experience.

Even if it is one where you wanna understand what you may be embarking upon as you being the process

Katherine:                  

What is some key advice that you give patients when they’re considering their treatment options? 

Dr. Forsberg:             

Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.

So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.

Katherine:                  

Are there emerging approaches to treating myeloma that patients should know about?

Dr. Forsberg:             

One of the great characteristics of myeloma right now is that there are a number of very exciting new treatment options that are emerging. Things that continue to evolve include, using medicines that’ve now been pretty well validated in different settings, in new arenas. Medicines that’ve previously been used only when the myeloma comes back after some control are now being used up front or right at during initial therapy.

So, sometimes what we’re doing is we’re finding the use of medicines that we may have been using for five or 10 or 20 years. But then we have a whole host of new medications or new treatment approaches that’re emerging really rapidly. This includes a number of new immunotherapies. New targeted therapies. So, these are exciting but while they are exciting, it is important to know that they are coming in addition to what we have already available.

And what we have available now is a really substantial and robust toolbox of treatments for the myeloma to bring to bear in really effective ways.

Katherine:                  

Dr. Forsberg, some patients can be fearful when it comes to clinical trials. What would you say to someone who might be hesitant to consider participating in one?

Dr. Forsberg:        

Well, like I said, I would say that one of the most important things is making sure you understand what the goal of the trial is. What it entails. Clinical trials may have one name, but they’re very different things. And the right type of trial may be very different in different clinical circumstances. So, feeling comfortable with what it is. Making sure you feel comfortable asking your provider what the rationale for the trial is.

But also, as I mentioned, trials are a unique process and one that can often be very fulfilling for patients. Understanding that not only may you be trying a new treatment approach, but that you’re hoping to contribute to our improvement for how we manage multiple myeloma.

It’s an altruistic goal. But it can be one that can be pretty meaningful for patients if they’re comfortable moving in that direction.

Katherine:                  

Once a patient has started treatment, how do you know if it’s working?

Dr. Forsberg:             

So, we’re lucky in myeloma in that we have some pretty easily accessible tools to evaluate how our response is going. How the myeloma is responding to treatment. How we’re sustaining that response and if we may be losing it at some point in time. And a lot of those come down to those blood tests I mentioned before.

The tools that measure protein levels or antibody levels in the blood, whether that’s intact antibodies or fragments of antibodies. So, that is that serum protein electrophoresis or serum free light chain levels. Sometimes in conjunction with urine collections, which can measure abnormal antibodies in the urine. Those are ways that we can monitor on a month to month basis, how well the myeloma is responding to treatment. How well we are sustaining in a response or remission status. Or if it might be starting to come back.

We do at times use those in conjunction with other tests that look at things like bones using X-rays, MRIs or higher resolution scans like a PET scan. Or things like bone marrow biopsies which we may do at specific time points to evaluate the myeloma in different ways.

Whether that’s to evaluate a remission and see how deep that response might be, correlating it with blood work. Or if the myeloma come back, making sure we understand the characteristics of it. So, we’re lucky to be able to draw on tools that are not very invasive using bloodwork and sometimes urine. But we may couple that at certain other points in time with more substantial evaluations as well.

Katherine:                  

What could indicate that it’s time to switch therapies?

Dr. Forsberg:             

So, the most common indicator may be a change in one of those tests that I just mentioned. If we notice that there’s an increasing level of an abnormal antibody in the blood, one that’s usually produced by the myeloma, that may be our first indicator that the myeloma has become more active and that we need to change our treatment approaches. Other times people may develop symptoms from the myeloma that shows that it is becoming active and those would be our indicators. So, those are different ways that we help to monitor the myeloma. One is assessing the bloodwork and other things that we monitor pretty closely.

The other is being vigilant for new problems that may come out. So, we end up spending a lot of time with folks over the years with the myeloma and some of that may feel a bit routine, but we’re always trying to make sure that we’re attentive to new issues as they come up.

Katherine:                  

Let’s turn to patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?

Dr. Forsberg:             

Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.

And additionally, we always wanna be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks wanna be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.

Katherine:                  

Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?

Dr. Forsberg:             

Well, certainly using tools like, if you found your way to this material, I think is a great first step.

Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.

Katherine:                  

And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?

Dr. Forsberg:             

Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.

And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache.

Katherine:                  

Such great advice. To close, what would you like to leave the audience with? Are you hopeful?

Dr. Forsberg:             

Well, I certainly am. I think that I am lucky to have begun my journey with taking care of patients with myeloma at a time when we had a great group of tools to be able to use and that’s continued to get better.

So, we have more and more options to be able to treat patients and to not only focus on myeloma, but their quality of life and sustaining those things in conjunction. So, I think if I could communicate one thing to myeloma patients, it’s hopefulness. It’s positivity. And it is empowerment and becoming comfortable with their role as their own agents and their own advocates in their myeloma journey.

Katherine:                  

Dr. Forsberg, thank you so much for joining us today.

Dr. Forsberg:             

My pleasure.

Katherine:                  

For those of you watching, please fill out the survey that you will receive following the program. It helps us to plan future myeloma programming. And thank you to all of our partners.

To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell, thanks for joining us.

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner

 

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner from Patient Empowerment Network on Vimeo.

Speaking up, or self-advocating, may influence a myeloma patient’s health outcome. Charise Gleason provides a brief explanation of why patients should ask questions and seek advice from their healthcare team without hesitation.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

How to Get the Best Multiple Myeloma Care No Matter Where I Live?

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

How Targeted Therapy Works to Treat Myeloma

Transcript:

Charise:

I think for patients it’s important to ask questions. I think sometimes they feel like, “I’m sorry I’m asking this,” or, “I’m sorry I’m telling you all about my side effects.” And that’s what’s supposed to happen at our visits.

So, I think patients and their family members or caregivers are their best advocate. And they should never feel bad about asking questions, reaching our, reminding their team of things, and being that advocate. We know about side effects. And we know about these treatments. And we can tell them, but we’re not experiencing them. So, there’s nothing that’s too small. And with everything we do, come some sort of side effect. So, it’s really a team approach to manage these things. And you never want patients to be suffering through. And reaching out to your team, even between visits, is really important.

Writing things down. Coming to a visit with a list of questions. These visits go quickly and if you come with those five things you really want to ask, or more… But have them written down so you don’t miss it in your visit so you feel like you’re part of that discussion and you’re getting the information that you need.

How Targeted Therapy Works to Treat Myeloma

How Targeted Therapy Works to Treat Myeloma from Patient Empowerment Network on Vimeo

Nurse practitioner Charise Gleason explains how targeted therapies work to fight myeloma and how they may be used in combination. Charise also discusses how targeted therapies differ from radiation chemotherapy.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

Related Programs:

 

Essential Tests & Imaging After a Myeloma Diagnosis

Lab Tests in Myeloma: Key Results to Monitor

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key


Transcript:

Charise:                       

Plasma cells or myeloma cells have a target on the outside. And so, CD38 is a very common one. You think of daratumumab, for instance, that targets CD38, because it’s on the surface of every plasma cell.

You have what’s called CS1 on the surface of plasma cells that elotuzumab targets.

And these drugs target that particular marker to break down that myeloma cell in a different way. The reason we use combination therapies are not just because we think this is a great idea to put them together. We know dexamethasone, for instance, is going to make that plasma cell more presentable and make that target more presentable to let, for instance, daratumumab work on it. And then you take something like an immunomodulatory agent that works in another way. But as far as targets, that’s on the surface of the cell is what we’re looking for on that particular one.

With the translocation, that’s one that’s very specific. If you take a translocation (11;14), those patients can express high BCMA, another target on a plasma cell.

And so, that’s the reason again why that works for some of those patients, because it attaches and kills the myeloma starting from that outside and working into the cell.

The traditional chemotherapy approaches just worked at killing everything, including normal cells, right? And so, you have a patient who gets admitted for chemotherapy, for instance, it knocks everything down and with that, the myeloma. And then those cells come back up. And so, you think of that more from a traditional admit to the hospital. We give several days of chemotherapy or the conditioning regimen for transplant with melphalan It wipes out everything.

And so, sometimes we still need to do that and do that maneuver to reset the bar. But there’s more risk to the patient with that, we’re making a patient more immunocompromised. With targeted therapy, it’s more specific to that target. So, it’s really working more to kill those abnormal cells in there. So, the patient doesn’t experience quite that same immunosuppressive state where everything is knocked down.

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

Related Programs:

 

Essential Tests & Imaging After a Myeloma Diagnosis

Lab Tests in Myeloma: Key Results to Monitor

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


Transcript:

Charise:                       

So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.

And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.

Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.

And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.

So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?

When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.

But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.

We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.

So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance. 

Essential Imaging and Chromosome Tests after a Myeloma Diagnosis

Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.

Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

See More From INSIST! Myeloma

Related Programs:

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

Lab Tests in Myeloma: Key Results to Monitor

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


Transcript:

Charise:                       

The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.

That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.

So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.

What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.

So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.

So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.

At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.

When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.

And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.

Are Myeloma Clinical Trials More Critical for African Americans?

Are Myeloma Clinical Trials More Critical for African Americans? from Patient Empowerment Network on Vimeo

Are multiple myeloma clinical trials becoming more critical for African, Hispanic, Asian, and other racial and ethnic groups as U.S. demographics change? Watch as Dr. Sikander Ailawadhi from the Mayo Clinic explains the impact of low trial participation rates by African Americans and his experience with some of his myeloma patients.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Dr. Ailawadhi, the demographic in America is changing quite rapidly. Does this mean clinical trial participation is more critical than ever?

Dr. Sikander Ailawadhi:

It absolutely is, Rebecca. There is no way to kind of shine enough of a bright light on this topic. And I’m glad that we’re talking about it. There is more interest and also more thought process being put behind it. So you’re right in saying that the demographics are changing quite a bit. So we don’t know how and when we’ll get all the 2020 Census data; but over the past few years, the Census Bureau has been releasing updates where we know that Hispanics are the fastest growing racial ethnic group in the country and followed by Asians and African Americans are already a huge part of our demographic. So whatever we’ve discussed before when we said that patients can present at different ages, they can present with different symptoms, we also know from our experience of other diseases like hypertension, high blood pressure, diabetes, that the way certain drugs are metabolized could be inherently genetically different between, let’s say, African Americans and whites.

Unfortunately, in myeloma, we don’t know any of that, because clinical trial participation overall in cancer and also especially in myeloma, in a disease where African Americans may be affected by this diagnosis way more, the clinical trial participation is extremely low, in single digits. Which means that all the drugs that we utilize are FDA-approved, have become FDA-approved with not enough safety or benefit data in racial ethnic minorities. Now, I’m not saying that there is any problem in using those drugs; we use them, they benefit patients outrightly. But I think that underscores the importance that clinical trial data and generating robust safety and benefit data in all racial ethnic groups, considering that our demographic 10 years from today is not going to be what it is now or what it was 10 years ago. So understanding the dynamics of drugs, their impact, their benefit, their safety, in all racial ethnic groups becomes extremely important. And that can only be done when either clinical trials are specifically done in those populations, which, as Diahanna mentioned very well, appropriately before, it’s a very challenging thing, because there has been a traditional lack of trust there. So it becomes very important.

I can tell you that I had mentioned earlier that we’re doing a questionnaire just to understand why patients don’t want to go on clinical trials, or do they not want to go on. It’s just maybe, it’s an access issue. And I distinctly remember—I cannot take an anecdotal look at it, because I’m a clinician, I’m a researcher, I’m not supposed to look at the end of one. But I’ve had at least two specific cases where newly diagnosed multiple myeloma African American patients who’ve come, and I’ve very clearly explained to them that I’m just wanting them to consider going on this study with a one-time questionnaire. No samples, no bone marrows, no treatment, no nothing. All I want to understand is what they think about clinical trials. It’s a five-page questionnaire, 50 questions, multiple choices. We’re not taking any other data. Both these patients took the—they signed the consent, so they took the questionnaire. They took it home, we could do it electronically, but they said they wanted to think about it.

“Know what? I don’t feel comfortable with going on a clinical trial, even though it’s a one-time questionnaire. I’m going to kind of respectfully decline.” And I initially could not understand the whole thought process because it seemed, “Well, it’s just a questionnaire. We do so many surveys online.” But I’ve talked to them several times since then, and the thought process, which Diahanna brought, up about that lack of trust, that came out loud and clear. These patients are still receiving their treatment with us, because initially there were concerns, they said, “Well, if I don’t do the questionnaire, maybe this doctor won’t treat me.” They’re receiving their treatment with us, they are continuing, we’re good, we have a very good relationship, but they decided not to go on those. So I think clinical trial participation is extremely important, especially because of the changing demographics, like you said.

How Can a Myeloma Patient Advocate/Financial Advisor Help?

How Can a Myeloma Patient Advocate/Financial Advisor Help? from Patient Empowerment Network on Vimeo.

Diahanna Vallentine has not only experienced life as a multiple myeloma caregiver and patient advocate but also as a financial advisor to patients. Watch as she shares things she’s learned talking with African American patients—and how she helps those in underserved communities with affordable access to myeloma treatment.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Diahanna, we know many of the roadblocks to treatment boil down to access and the web of financial toxicity. In the work you do, how are you helping patients make informed decisions, and can you please provide some examples?

Diahanna Vallentine

I think one of the main variables that causes the disparity overall before even treatment is needed is a mistrust in the African American community as a result of past historical treatments, experiments that were done on the African Americans. And I find that talking to anyone. If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare.

Some of the things that I am doing is I try to be available to talk to anybody, no matter what time of day it is, talk to them where they’re wanting—where their needs are, listening to them and not making preconceived notions about who they are, where they come from, what their experiences are. And it’s an ongoing educational program for me, because we all come in—as difficult as we are, come in with preconceived notions of what our knowledge is, what our experience is, and how we’ve treated other people. And that has been one of the things that I have been practicing every day when I talk to patients, whether it’s in-person or on the phone. I have a unique perspective having been a financial advisor for more than 20 years, being a caregiver to a myeloma patient, being a patient advocate and not having the fear. I guess that’s something I grew up with. Not having the fear to talk to people or ask people questions, and let them know from the on-go that we all have something in common.

And once you establish that area of trust, then everything else comes easy. When you realize that that could be me in that bed, that could be my mother, my father in that bed, then we all become as one, per se. And so some of the things that I do is I talk to a person at the level they want to be spoken to. I ask them how they want me to communicate with them, how often they want me to communicate with them, is there anyone else they want to be involved in it. And then I take that information that they’re trying to gather and find resources for them so that financial toxicity will not become an issue, so that we can discuss with their caregivers what the treatment plan is, what the anticipated cost is, so that we can work around some of those financial barriers that they may come up against. And whether that’s looking at their current insurance plans, insurance plans they may have access to in the future, whether it’s through a spouse or their employers, or Medicare, Medicaid. We try to anticipate what those things are so that the financial toxicity does not become a burden, which again, affects their care, because stress affects your care and your outcomes.

What Do Disparities in Multiple Myeloma Look Like?

What Do Disparities in Multiple Myeloma Look Like? from Patient Empowerment Network on Vimeo.

How do health disparities in minority populations with multiple myeloma play out? Expert Dr. Sikander Ailawadhi from the Mayo Clinic joined to discuss data about African Americans and Hispanic Americans with myeloma. Watch as he shares the average age of disease onset, how their symptoms vary, transplant rates, new treatment rates and more.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Dr. Ailawadhi, for our audience who might not understand what health disparities in myeloma look like, can you give a high-level definition and overview, please?

Dr. Sikander Ailawadhi:

So, there are disparities at a lot of different levels, just taking the case of multiple myeloma, specifically. So, for example, patients from different racial and ethnic backgrounds tend to present in a different way. So, African Americans present with the diagnosis at a much younger age. The presence of the myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, is seen much more frequently in African Americans. Even I would say include Hispanics into that, because Hispanics also get diagnosed at a much younger age. The disease presents very differently, for example, African Americans will present much more frequently with anemia or kidney dysfunction, but they will present with much lesser bone fractures in multiple myeloma.

So, those are disparities in how the disease presents or how it becomes kind of evident. Now, when we talk about disparities, one of the very stark shades of disparities in myeloma is how treatment is given or made available to patients, especially when we talk about racial minorities. So, there has been a lot of literature looking at this, and it has been seen that patients who belong to racial and ethnic minorities, they do not get access to the same kind of treatment in the same timely fashion. So, for example, African Americans and Hispanics are much lesser likely to get a transplant when it comes to myeloma treatment. Now again, I don’t want to say that improvements have not happened. The rates of transplant, rates of new drug use, have increased across the board for all races and ethnicities, but when we compare, the rate of that increase has been much slower in African Americans.

In fact, one of the studies that we looked at, some national data, it took Hispanics a little more than 100 days from the time of diagnosis to get to initial treatment with bortezomib (Velcade), which is a cornerstone drug and is used almost across the board for initial therapy. So, the treatment, there are disparities. And similar, there are some outcome disparities. While on the face of analysis, it’s been said several times that races or different racial sub-groups will have similar outcomes, I think the important thing to understand is that biologically, African Americans have a less aggressive disease, which means that if given the right kind of treatment, African Americans are supposed to in fact have a slightly better outcome than even whites. And there’s one large analysis that came out of the VA system from the Dana-Farber group last year, which was actually highlighting that, because they were able to show that in an equal access system like the VA, African Americans actually had better outcomes, or better survivable. So, there are disparities at the time of presentation, at the time of how treatment is received, how timely is the treatment, and in fact also, outcomes. Because I would say that having an equal outcome for a racial minority is not necessarily lack of disparity, that may actually be underscoring the disparity.

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live?

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

“Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.” – Dr. Sikander Ailawadhi

There is a critical need to raise awareness of the treatment gaps among minority populations living with multiple myeloma. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to empowerment?

In this replay, a panel of distinguished myeloma experts and patient advocates tackle how we achieve health equity for multiple myeloma patients no matter geography.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Hello, I am Rebecca Law, and this is a Patient Empowerment Network program produced by Diverse Health Hub. We know the myeloma burden and treatment gaps among blacks highlights the critical need for raising awareness and working towards equal access for treatment. What we are really talking about is, “How can we achieve health equity and improve outcomes in multiple myeloma?” Our distinguished panel is at the heart of research for multiple myeloma patients of color, seeking a path for empowerment.

First on our panel is Diahanna Vallentine, a Board-Certified Patient Advocate and Myeloma Financial Coach with Myeloma Crowd. We also have Dr. Sikander Ailawadhi, Professor of Medicine in the Division of Hematology and Oncology at Mayo Clinic in Florida. We have Dr. Saad Usmani, Chief End Plasma Cell Disorders Program Director at Levine Cancer Institute, Atrium Health. And we also have Jenny Ahlstrom, founder of Myeloma Crowd. Thank you all for being a part of such an important program Diahanna, rooting out disparities and roadblocks within the myeloma community is a big priority for you. Why is that?

Diahanna Vallentine:

Well, disparities in healthcare include community access to care, ability to pay for care, feeling empowered to ask questions about care, understanding treatment plans, and many other variables that is impossible to pin point one that’s the primary driver, I guess, of this disparity. And as a black person, having been a caregiver and advocate to my husband who had myeloma for 12, almost 13 years, prior to him being diagnosed with myeloma and then going back into the hospital for various reasons, I found that there was a huge disparity in the way that he was treated. And some of those things have led me to do what I’m doing now with the Myeloma Crowd. There was an attempt for him to be put on an experimental treatment while he was on life support, with a doctor coming into the room with other doctors saying that, “This is what we’re going to do.” And I stood up and said, “Well, what is this treatment? What is the experiment? What were the outcomes of the experiment?”

And the doctor got in my face, six inches, yelling at me, and said, “You don’t have the right to ask questions, we’ll normally do this and you’ll find out about it later.” And that was very disparaging, especially since posted on all of their walls outside and one outside of my husband’s door, was, “Families are very included in the care and treatment of their patients”, because they found the outcomes were so much better. And that was not the case. That was one incident. Another incident was him being in the hospital, in rehab, and was almost comatose when I walked into the room, and they were insisting him get rehab treatment post hospitalization.

He was basically comatose. His resting blood pressure was 172 beats per minute. And it took me hours to get the doctor to even come in to see him before they actually agreed to release him to go back into intensive care, which was only a block away. And he died during that transport, and they weren’t able to resuscitate him at the emergency room doors. So, just the ability to be able to talk to the doctors, to be strong enough, empowered enough to question the doctors, to find out what the cost of care is going to be so that you can plan and make the appropriate and prudent decisions based on care, I found was somewhat lacking in the minority population.

And it had nothing to do with the education of the patient there, sometimes it had nothing to do with their economic backgrounds or situations, it was a matter of stereotypes that were being used, sometimes unconsciously, and I hope it’s unconscious, by some of the caregivers during his treatment. And as a result of that, some of the decisions that were made were not necessarily in a financial benefit of the patient, and therefore, when treatment plans were put into place there was a cost associated with getting help… Not just financial cost, but there was a physical cost and a mental cost for getting out of those treatments to get into better treatments. And that’s led me to work with Myeloma Crowd where they’re just so open, and to trying to help people in unserved communities, specifically people of color, to have the appropriate access and to have the appropriate treatment based on their needs.

Rebecca Law:

Thank you for sharing your story. Now, Dr. Ailawadhi, for our audience who might not understand what health disparities in myeloma look like, can you give a high-level definition and overview, please?

Dr. Sikander Ailawadhi:

Sure. Thanks Rebecca, and thanks for having me on this panel. Diahanna, first of all, I think I want to take a second and really appreciate you for having the courage to share that. And not only just to share that, but to devote your life and devote your time to this extremely, extremely important cause. We keep talking about so many advancements that are happening in the field of myeloma, and by all means there are. I don’t want to discount any of those advancements and how outcomes have improved tremendously for patients across the globe. But when we start looking at the details and the nitty gritty and we see that how the benefit or the impact of a lot of those things are different even based on race and ethnicity, it’s stark. So, Rebecca, you asked me to just talk about a very high-level discussion about what kind of disparities exist in myeloma? Or what do disparities mean when it comes to multiple myeloma?

So, there are disparities at a lot of different levels, just taking the case of multiple myeloma, specifically. So, for example, patients from different racial and ethnic backgrounds tend to present in a different way. So, African-Americans present with the diagnosis at a much younger age. The presence of the myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, is seen much more frequently in African-Americans. Even I would say include Hispanics into that, because Hispanics also get diagnosed at a much younger age. The disease presents very differently, for example, African-Americans will present much more frequently with anemia or kidney dysfunction, but they will present with much lesser bone fractures in multiple myeloma.

So those are disparities in how the disease presents or how it becomes kind of evident. Now, when we talk about disparities, one of the very stark shades of disparities in myeloma is how treatment is given or made available to patients, especially when we talk about racial minorities. So, there has been a lot of literature looking at this, and it has been seen that patients who belong to racial and ethnic minorities, they do not get access to the same kind of treatment in the same timely fashion. So, for example, African-Americans and Hispanics are much lesser likely to get a transplant when it comes to myeloma treatment. Now again, I don’t want to say that improvements have not happened. The rates of transplant, rates of new drug use, have increased across the board for all races and ethnicities, but when we compare, the rate of that increase has been much slower in African-Americans.

In fact, one of the studies that we looked at, some national data, it took Hispanics a little more than 100 days from the time of diagnosis to get to initial treatment with Bortezomib, which is a cornerstone drug and is used almost across the board for initial therapy. So, the treatment, there are disparities. And similarly, there are some outcome disparities. While on the face of analysis, it’s been said several times that races or different racial sub-groups will have similar outcomes, I think the important thing to understand is that biologically, African-Americans have a less aggressive disease, which means that if given the right kind of treatment, African-Americans are supposed to in fact have a slightly better outcome than even whites. And there’s one large analysis that came out of the VA system from the Dana-Farber group last year, which was actually highlighting that, because they were able to show that in an equal access system like the VA, African-Americans actually had better outcomes, or better survivable. So, there are disparities at the time of presentation, at the time of how treatment is received, how timely is the treatment, and in fact also, outcomes. Because I would say that having an equal outcome for a racial minority is not necessarily lack of disparity, that may actually be underscoring the disparity.

Rebecca Law:

Wow, that’s very interesting. Dr. Usmani, can you speak to key studies you and your colleagues are leading, which focus on racial inequities plaguing myeloma research, and what are some of the commonalities you observe in the studies?

Dr. Saad Usmani:

Thank you, Rebecca. So, I want to acknowledge the fact that we’re getting this panel together to talk about some very important difficult questions when it comes to racial disparities here. And when I moved from the myeloma program in Arkansas to the City of Charlotte to start a myeloma program, one of the striking things that we saw was the proportion of African-American patients that we were seeing in our practice, almost 35% of the patients that we care for in our myeloma program are African-American. And before we came here, when we looked at the data beforehand out in the community, there was clearly disparity in access to care, as well as to cellular therapies, as well as clinical trials to African-American patients. So, within our whole department of hematology, across the board, not just for myeloma but for other hemalignancies, looking at racial disparities and how to overcome them became one of the big clinical research foresights.

And so, our group, as well as lymphoma and leukemia colleagues, have actually looked at the survival outcomes, the disease features at baseline and other features to document the clinical characteristics within our population. And I echo what Sikander has already mentioned, that we find that the disease appears to be less biologically aggressive in African-American patients, and when we give them the same access to care, their outcomes are actually better than the Caucasian patients. And I believe Sikander has already published some data looking at the SEER database from previous years, but in their novel therapies with the availability of produce from inhibition, immunomodulatory drugs, as well as monoclonal antibodies, we’re finding this difference is pretty clear. African-American patients do benefit more than other groups when it comes to myeloma therapy. So, our ongoing focus now within our community at large is to embark on an ambitious screening study for our county, which has close to 3 million inhabitants, and more than 30% of those are African-Americans. So, what we are trying to do is create a campaign of awareness, as well as start a screening project to identify plasma cell disorders early within our county.

Rebecca Law:

Well, that’s great. Dr. Ailawadhi, if there’s anything you’d like to add in regards to studies or commonalities that you have observed in studies.

Dr. Sikander Ailawadhi:

Rebecca, one thing I want to add to that, and just like Dr. Usmani mentioned, and I’m also kind of building upon a little bit on what Diahanna mentioned in the beginning. When we talk about disparities, there has been a lot of literature showing how disparities exist and where they exist. I think now we’re to the point that we need to try to address them, and we need to try and figure out how to overcome them. And in fact, whenever this term is brought up in the literature or in discussions, it’s always brought up very frequently, “Yeah, it’s got to be an access issue”, that African-Americans or Hispanics are going to be lower socioeconomic status and there could be inequalities and that’s why they don’t have access to the right treatment. But I think what Diahanna just mentioned at the beginning of the discussion, that underscores that very thing. They did not have lack of understanding, they did not have maybe lack of insurance or healthcare availability, ’cause her husband did have access to rehab facility, ICU, etc. But there are probably stereotypes, and the last thing we want to do is stereotype our research into that box.

So, for example, one of the studies we’re doing right now is exactly on this thought process of clinical trial and participation. So, we know that in the US, less than 20% of individuals who are eligible to go onto clinical trials, go onto clinical trials. And when it comes to minorities, the number is somewhere about 5%-7% only. So, while we talk about the fact that, “Well, minorities need to get onto clinical trials”, yeah, sure, but we need to understand why this disparity exists. So, we’re doing a study where we’re actually bringing that understanding to try and see, “Well, why don’t patients want to go on clinical trials?” I mean, as it is, even with whites, we do a pretty dismal job. So, we’re doing a questionnaire. The goal of that is to run the questionnaire in about 500 cancer patients who come to Mayo Clinic as an initial kind of visit, and we’re asking them what are their thoughts about clinical trials. And the hope is that we’re going to get about 200 whites, 150 African-Americans and 150 Hispanics, and then try to compare that. Because unless and until we know where the gaps are, we won’t be able to address that.

So, the only thing I want to add to what Dr. Usmani rightly mentioned was that it’s important not to box our research also in stereotypes, and to really try our best to try and overcome these disparities, which I think a movement has already started. I think it is gaining momentum. I think we need to just keep working in that direction, whether it is from lawmakers, from patient advocacy groups, from large foundations and societies, and even from pharma. I think there is a lot of support that is building towards it, we just need to keep moving in that direction.

Rebecca Law:

I agree. I think we all agree Dr. Ailawadhi or Dr. Usmani, what do we know about how myeloma behaves in patients of color versus other races? Are there differences in risk factors? And if yes, what do we know?

Dr. Sikander Ailawadhi:

So, Rebecca, what we have learned from studying myeloma and its precursor diagnosis, MGUS, in African-Americans and Hispanics and Whites is that in African-Americans MGUS presents much more frequently. In African-Americans, the conversion from MGUS to myeloma happens at a younger age. In African-Americans, myeloma is diagnosed at a significantly younger age. And for that matter, I would say also in Hispanics it is diagnosed at a significantly younger age. We know that in African-Americans, the myeloma risk stratification or the risk category is different because African-Americans, in general, have a less aggressive kind of variety of multiple myeloma so they tend not to have the high-risk mutations, which means that if they are given the similar treatments, we should be getting better outcomes, not just the same. So that is what is known about the biology and presentation.

Dr. Saad Usmani:

Yeah. So, in addition to what Dr. Ailawadhi has already mentioned, I’d say that in our experience, within our prospective data base we have close to 5000 individuals with various plasma cell disorders, and a third of those are African-American. For patients who’ve got active myeloma, I would echo what Sikander has already mentioned, African-American patients are presenting at a younger age. So, we see in our database a median of 58 years of age at the time of diagnosis with active myeloma requiring therapy, compared to 63 years for the Caucasian patients. And then even Hispanics are presenting at a similar age to the Caucasian patients, at least in our data set. But interestingly, we see a numerically lower incidence of high-risk features in these patients, and they do quite well in terms of treatment.

And the pattern of relapse is also very interesting. We are finding more biochemical relapses where we actually have time to act on that relapse, and with some luxury of time at hand, and get those patients to either clinical trials with much ease compared to the Caucasian patient population. And then I want to build on the availability of clinical trial piece that Sikander had mentioned. We have, at our program, been able to get a 30% plus enrollment of African-American patients on clinical trials. And a big part of that has been creating awareness about disease, about getting diagnosed early, within the community and building those community partnerships.

Rebecca Law:

Jenny Ahlstrom, thank you again for joining us. I have a question for you. So, in the COVID era where health disparities have been exacerbated for vulnerable communities, how can myeloma patients not get lost in the shuffle and become a disparity within a disparity?

Jenny Ahlstrom:

I think this is a big challenge. I think it’s a challenge for myeloma patients, and I think the first two months we were all stunned. From what I’ve heard now, the facilities and the myeloma specialists are doing an incredible job now in treating patients. But we wanted to know what the impact was on COVID in the myeloma population, including racial disparity groups. And so, we opened a study using our HealthTree platform for — I think we have 1100 patients who joined the study in a four-week period, which I was surprised and delighted at. And we’re trying to figure out, “How were they impacted? Did they have worse access to care? Who are the high-risk patients?”

I think that’s a topic that is really important, especially when you think about Black or Hispanic communities, because is it just that somebody has hypertension or diabetes regardless of race? Or is it something else that’s another layer on top of an access issue, or what Diahanna was talking about before? Just somebody, a practitioner, taking somebody seriously when they say they come in with COVID symptoms and needing the right care regardless of race. So, we decided to run that study and we’re working on the results right now to just learn more about that. But it does… COVID adds another layer of challenge for all patients, and I think even more so for the disparity groups. And that can include rural groups as well, in addition to ethic communities.

Rebecca Law:

Well, I can’t wait to see those results, and thank you for that information. What I would like to shift to now is exactly what you were talking about, myeloma care in underserved communities, and eliminating treatment gaps. So Diahanna, we know many of the roadblocks to treatment boil down to access and the web of financial toxicity. In the work you do, how are you helping patients make informed decisions, and can you please provide some examples?

Diahanna Vallentine:

I think one of the main variables that causes the disparity overall before even treatment is needed is a mistrust in the African-American community as a result of past historical treatments, experiments that were done on the African-Americans. And I find that talking to anyone… If I were to walk into any community, African-American community, or under-served community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African-Americans contributing, being donors, African-Americans participating in trials. It all feeds over into everything that’s done in the African-American community or underserved community in regards to health care.

Some of the things that I am doing is I try to be available to talk to anybody, no matter what time of day it is, talk to them where they’re wanting… Where their needs are, listening to them and not making pre-conceived notions about who they are, where they come from, what their experiences are. And that has been one of the things that I have been practicing every day when I talk to patients, whether it’s in person or on the phone. I have a unique perspective having been a financial advisor for more than 20 years, being a caregiver to a myeloma patient, being a patient advocate and not having the fear… I guess that’s something I grew up with. Not having the fear to talk to people or ask people questions, and let them know from the on-go that we all have something in common.

And once you establish that area of trust, then everything else comes easy. When you realize that that could be me in that bed, that could be my mother, my father in that bed, then we all become as one, per se. And so, some of the things that I do is I talk to a person at the level they want to be spoken to. I ask them how they want me to communicate with them, how often they want me to communicate with them, is there anyone else they want to be involved in it. And then I take that information that they’re trying to gather and find resources for them so that financial toxicity will not become an issue, so that we can discuss with their caregivers what the treatment plan is, what the anticipated cost is, so that we can work around some of those financial barriers that they may come up against. And whether that’s looking at their current insurance plans, insurance plans they may have access to in the future, whether it’s through a spouse or their employers, or Medicare, Medicaid. We try to anticipate what those things are so that the financial toxicity does not become a burden, which again, affects their care, because stress affects your care and your outcomes.

25:21

Rebecca Law:

Absolutely. Absolutely. Also, Diahanna, what do you see as some of the main drivers of health disparities in targeting the underserved communities?

Diahanna Vallentine:

Wow. That’s a big one. That’s one of the things that… I don’t know if there is enough knowledge in the underserved communities to know what resources are available. A lot of people have not heard of The Myeloma Crowd. A lot of people are not aware of The Leukemia and Lymphoma Society because, unfortunately, I felt that myeloma was a step child of The Leukemia and Lymphoma Society because that’s all you heard about, was leukemia and lymphoma. You never heard about the myeloma. And when I became the board chair, I realized, “Oh my God, there’s that other blood cancer out there that nobody’s talking about, the one that my husband actually succumbed to.” So, I think getting into the community so people can… Where they are, not where we expect them to be, but where these people actually are, to let them know there are resources available to them. And making it an open environment, a non-transparent environment where the trust will come and that those disparities can be seen and they can be acknowledged and worked on at that point.

Rebecca Law:

Great, thank you. The other question, and anyone can chime in. You hear stories all the time like what Diahanna described earlier. Can patients truly get the best myeloma care no matter where they live?

Diahanna Vallentine:

I found that even people who are in regions where there are specialists for myeloma found that they didn’t know there were specialists there or they had to go travel outside of their treatment facility to get care. And for some people, that is an extreme hardship not only to be able to have the access to travel, the funds just to be there, the days of testing that might be involved, understanding what their insurance is going to cover or won’t cover if they’re in or out of network. There is a huge problem with that. There aren’t enough… I don’t think there is enough information in the places where those people are, whether it’s the doctors allowing this information to be in their plan. Unfortunately, a lot of African-Americans, when they do seek medical care, they’re comfortable with those doctors. They’ve been with those doctors for a long time and they have a difficult time separating or using that doctor to collaborate with a specialist. And I think therein is an inherent problem, is letting them know what resources are available, and then how to get to those resources.

Dr. Saad Usmani:

So, I want to build on what Diahanna has shared. I think in general, in the year 2020, there are more resources available to myeloma patients across the country. There’s more awareness by virtue of having organizations like The Myeloma Crowd doing good work and spreading knowledge amongst the myeloma patient community, as well as for caregivers. There’re aren’t enough myeloma experts in the world to see every myeloma patient, but there’s no reason why any given myeloma patient regardless of which geographic area they live in can’t have a myeloma expert in their back pocket, if and when they need help. It takes quite a bit for a patient to develop trust and a relationship with their own physician. And our job as myeloma experts is not to take care of every myeloma patient, but be there for them and provide guidance if and when needed, along with the physicians who are already caring for that patient. And in the era of COVID-19 pandemic, and Dr. Ailawadhi can speak to this as well, the capability to do virtual consultations and provide distance consults and advice to patients has also opened up a big opportunity for patients throughout the country. I do not see a reason why all myeloma patients can’t get the best optimal care in today’s day and age.

Dr. Sikander Ailawadhi:

I completely agree with that. And actually, I was going to add exactly the same thought process, that this is a very difficult time for everybody, myeloma patients and for literally the whole of this world with the COVID-19 situation. But I think this whole concept of telehealth has come about as somewhat of a silver lining. So I can tell you, I can share from at least my experience right now in clinic, that when we get a request for a patient to be seen, the way we have it set up is that actually a triage request comes for one of us in the disease group to confirm that the patient is actually coming to the right physician. So if, let’s say, someone by mistake may have said myeloma, but the patient has leukemia, then one of our job would be to make sure that rather than coming in and then the patient finding out that, “Hey, you are with the wrong doctor”, they end up seeing the right doctor even from get-go. So, when we’re doing these triage requests and we’re sorting them out, patients are actually reaching out and asking directly, saying, “Hey, I would like another opinion. I’ve been told I have a diagnosis of myeloma or smoldering myeloma or MGUS or something, I’m going to be sending in my records and I would like to do a virtual consult.”

And so, patients are actually reaching out that way, which gives us this opportunity that, “Hey, not everybody can come here, let alone the fact that we cannot accommodate.” And I’m not even going get to the point of we not being able to accommodate. We’re doctors, we’re institutions, health care workers… This is our job, to help as much as we can. But looking at it from the patient’s perspective, the patient cannot always have the resources to come. It’s not appropriate for us to expect, “Hey, we’ll build a hospital, you’ll have to come here.” I think in today’s day and age, when we can do so much more with technology, it’s… Healthcare was actually in some way lagging behind, but I’m glad that it’s coming up to that step. So, to be able to get the patients to get the consult, to get the opinion, to get that reassurance that what they are doing, what they’re getting in their area, in their community is actually right, because I can tell you and I think Dr. Usmani will agree with that, that nine out of 10 times, we actually fully agree with what’s being done for the patient or by the physicians, it’s just that they may not have access to a clinical trial, so they’re seeking it or the patient is just looking in for that reassurance.

So, I think now we have that opportunity to provide it for the patient. So, what we need is awareness, so that the patients, like Diahanna mentioned, they feel confident about asking for an opinion, asking for a consult and knowing that they have resources where Myeloma Crowd helps, where Leukemia Lymphoma Society helps, where International Myeloma Foundation helps, where they kind of bridge this knowledge gap. Once the patients know… It’s easier said than done to say, “Hey, be your own advocate.” But if a patient or a caregiver does not know what advocacy is, they’re not going ask the right questions. So, we need to educate them and we have the tools that we can help more patients across the world, across the country, and bring the advancements of myeloma care to everyone.

Jenny Ahlstrom:

Dr. Ailawadhi, I think that point is so important, and Diahanna referred to it earlier. Let me give you an example. So, we went across the country and visited 50 cities while we were building this HealthTree platform, we probably met with 850 patients. And we wanted to see all ethnic communities, all rural, big cities. We just wanted to see across the board what was happening. And as part of that, we met a woman named Cassandra. She had smoldering myeloma, she had severe back pain, she was just enduring this back pain for over a year. And because we met and we built that relationship, that one-on-one relationship, she felt comfortable calling me and saying, “I have this really severe back pain, what do I do about it?” She didn’t know that… She was going to a major cancer center, but no myeloma specialist necessarily, and I had to say, “What you’re enduring is inexcusable, you really need to push.” And she had been pushing, but she didn’t really know how.

So, I set her up with an appointment with a myeloma specialist that was just an hour drive away, and then she was able to get the proper care. So sometimes it’s this training of, “How are you an advocate? What education do you need to acquire so you can ask the right questions of your doctor? You should be seeing a specialist; how does that process work?” And just really walking the patients through this, because it’s confusing and they don’t feel good, and there is a lot. So, it’s really important, the points that both of you made.

Rebecca Law:

Yes, it is. Going back to telemedicine, do you guys think telemedicine will be a game changer for underserved communities, especially patients facing a myeloma diagnosis?

Jenny Ahlstrom:

I say yes. Completely.

So, in our study, we saw that, we asked that question, “Did you use telemedicine beforehand?” And either they said yes or sometimes, and it was at 9% prior to COVID, and then after COVID it’s at 60%. So, patients are using it, and I’m hearing some of the researchers, and I’m sure they’ll have their own experiences, say, “We never realized how much we could do via telehealth.”

Dr. Saad Usmani:

So, this is a time of innovation. I think we’ve seen a lot of innovative approaches to taking care of patients come about over the last four months. One of the limiting steps in doing virtual medicine however, is the reality that it does require insurance coverage. And so, Medicaid allows the virtual visits to be a billable service during the COVID pandemic, but I think right now there’s a push to reverse that ruling by the end of August. So, it will take a lot of partnership between patient support group organizations to actually push for this, because there’s no reason why you want to go back to the dark ages. You want to have these platforms available to provide better care for patients. It just opens up so many possibilities of providing optimal care to patients, especially in the remote areas. So, I think this is going to be a very active area of discussion, and will require engagement with legislature on parts of both physician organizations as well as patient organizations.

Rebecca Law:

Okay, let’s move on to disparities and its impact on myeloma clinical trial participation. So, Dr. Ailawadhi, the demographic in America is changing quite rapidly, does this mean clinical trial participation is more critical than ever?

Dr. Sikander Ailawadhi:

It absolutely is, Rebecca. There is no way to kind of shine enough of a bright light on this topic. And I’m glad that we’re talking about it. There is more interest and also more thought process being put behind it. So, you’re right in saying that the demographics are changing quite a bit. So, we don’t know how and when we’ll get all the 2020 census data; but over the past few years, census bureau has been releasing updates where we know that Hispanics are the fastest growing racial ethnic group in the country and followed by Asians. And African-Americans are already a huge part of our demographic. So whatever we’ve discussed before when we said that patients can present at different ages, they can present with different symptoms, we also know from our experience of other diseases like hypertension, high blood pressure, diabetes, that the way certain drugs are metabolized could be inherently genetically different between, let’s say, African-Americans and Whites.

Unfortunately, in myeloma, we don’t know any of that because clinical trial participation overall in cancer and also especially in myeloma, in a disease where African-Americans may be affected by this diagnosis way more, the clinical trial participation is extremely low, in single digits. Which means that all the drugs that we utilize are FDA-approved, have become FDA-approved with not enough safety or benefit data in racial ethnic minorities. Now, I’m not saying that there is any problem in using those drugs; we use them, they benefit patients outrightly. But I think that underscores the importance that clinical trial data and generating robust safety and benefit data in all racial ethnic groups, considering that our demographic 10 years from today is not going to be what it is now or what it was 10 years ago. So, understanding the dynamics of drugs, their impact, their benefit, their safety, in all racial ethnic groups becomes extremely important. And that can only be done when either clinical trials are specifically done in those populations, which, as Diahanna mentioned very well, appropriately before, it’s a very challenging thing because there has been a traditional lack of trust there. So, it becomes very important.

I can tell you that I had mentioned earlier that we’re doing a questionnaire just to understand why patients don’t want to go on clinical trials, or do they not want to go on. It’s just maybe, it’s access issue. And I distinctly remember… I cannot take an anecdotal look at it because I’m a clinician, I’m a researcher, I’m not supposed to look at the end of one. But I’ve had at least two specific cases where newly diagnosed multiple myeloma African-American patients who’ve come, and I’ve very clearly explained to them that I’m just wanting them to consider going on this study with a one-time questionnaire. No samples, no bone marrows, no treatment, no nothing. All I want to understand is what they think about clinical trials. It’s a five-page questionnaire, 50 questions, multiple choices. We’re not taking any other data. Both these patients took the… They signed the consent, so they took the questionnaire. They took it home; we could do it electronically but they said they wanted to think about it.

And for both these patients, they called back and they said, “You know what? I don’t feel comfortable with going on a clinical trial even though it’s a one-time questionnaire. I’m going to kind of respectfully decline.” And I initially could not understand the whole thought process because it seemed, “Well, it’s just a questionnaire. We do so many surveys online.” But I’ve talked to them several times since then, and the thought process, which Diahanna brought, up about that lack of trust, that came out loud and clear. These patients are still receiving their treatment with us because initially there were concerns, they said, “Well, if I don’t do the questionnaire maybe this doctor won’t treat me.” They’re receiving their treatment with us, they are continuing, we’re good, we have a very good relationship, but they decided not to go on those. So, I think clinical trial participation is extremely important, especially because of the changing demographics, like you said.

Rebecca Law:

Jenny, so many experts try to tackle this problem. What are organizations like Myeloma Crowd doing to open up access to those who have access issues?

Jenny Ahlstrom:

Well, I think this is a very common problem, and one I think a lot of the different foundations are working on. It’s a big challenge, as you heard. Like when we were talking about the clinical trial aspects, it’s hard to join a clinical trial regardless of your race, and then you layer on the trust issues or travel or those types of issues and it becomes even harder. I think we need to go back to what Diahanna said. To me, this is all about relationships. So, if you’re building solid on-the-ground relationships with individuals, they’re more likely to understand the importance of becoming your own advocate or getting educated about the disease so you can ask the right questions. We’re trying to build a lot of different tools for patients to use, but then you need to go back and invite them to use them or kind of teach them to use them because you have that relationship. So, for example, we’re building HealthTree University, where Dr. Usmani and many others, and Dr. Ailawadhi, hopefully you as well, will participate in teaching myeloma patients about multiple myeloma. So, we have over 30 classes planned, over 600 lessons. And that’s something that people would be able to go and get educated about myeloma at home, so that when they go to the clinic and are talking to their doctor, they start to ask better questions. So, that is kind of the beginning.

Rebecca Law:

Dr. Usmani, as you can see by turning on any news station, racism is very real in the US. Do you think some experts may be less willing to give patients state-of-the-art treatment, given they feel they have a special resilience?

Dr. Saad Usmani:

I think the racism question, it’s certainly at the top of our minds right now, especially in the context of recent events. But it has been inherently prevalent, and there’s been more of a divide in our country over the last five to six years. And I don’t want to get too political, but the bottom line is this issue is real. And for the most part, the physician community tends to be agnostic to it because with our job is to serve humanity, our job is to provide the best possible care. There are going to be, just like in any other profession, average, above average and exceptional physicians.

Diahanna Vallentine:

I have experienced it in my family with my husband, and I have been in hospital as an advocate watching other people experience the same thing. And one of the prevailing things that’s really surprising to me is that even in a educational setting in medical schools, there are a lot of physicians in training, and physicians that are practicing, believe that African-Americans do not have the pain, their skin is too thick, they don’t experience pain as other Caucasians may experience, and therefore may not be prescribed pain medicine as appropriate. And that could become very, very difficult, especially if you’re treating a chronic and sometimes a very painful disease as myeloma, with bone fractures and things. And so, their health outcomes, I think, are somewhat mitigated or lessened as a result of that type of treatment. My husband did experience that, and it became very difficult for us to finally get a physician to say, “Yes, he does have… Yes, there is a fracture, a multiple fracture. And there is bone pain associated, and aspirin and Tylenol is just not going be enough to manage his pain.” And I’ve witnessed that on several occasions with other people as well. So that is an ongoing problem. When we talk about disparities in access to, or getting into the community, I think one of the predominant problems is African-Americans and maybe people of color will be more likely to associate people that they relate to.

And that person of relation may be another African-American, a professional maybe in a community that can talk to them. Because now they see a face that looks like them. They have a face that may have experienced some of the same things they are going through, and they are open and willing to accept recommendations or information from people that they can relate to. And I think a lot of professional communities do not have that available, whether it’s through lack of education for minorities to be in positions like that, or just a lack of understanding what the actual community needs are.

Rebecca Law:

We tackled a big topic today, and as I close, I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?  

Diahanna Vallentine:

I think we all appreciate the fact that the African-American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foot-hold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So, I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix; this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

A Multiple Myeloma Advocate’s Uphill Battle to Care

A Multiple Myeloma Advocate’s Uphill Battle to Care from Patient Empowerment Network on Vimeo.

Diahanna Vallentine of Louisville, Kentucky shares how advocating for her late husband of 28 years following his myeloma diagnosis “felt like an uphill battle.” As any care partner in this position, Diahanna’s multiple myeloma research uncovered more questions than answers. When she sought clarity from her husband’s care team, she was met with hostility. The toll of emotional and financial toxicity ate into their life savings. Following her husband’s passing, Diahanna has made it her life’s mission to help other patients and families facing a multiple myeloma diagnosis avoid inequitable roadblocks to care.

Diahanna’s advice,“Find your voice, talk to your doctor and feel empowered to question your care team. These actions are key to staying on your path to empowerment.”

See More From the Diverse Partners in Your Myeloma Care Program

Related Video:

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live

Is Myeloma Hereditary? The Facts.

Is Myeloma Hereditary? The Facts. from Patient Empowerment Network on Vimeo.

 Can myeloma be inherited? Dr. Irene Ghobrial, a myeloma expert and researcher, explains whether myeloma is hereditary.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

The Truth About MGUS

Hesitant to Join a Support Group? Encouraging Advice from an Advocate 

Transcript:

Patricia:

How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:

It’s a very good question. So, it’s not hereditary specifically. However, there is a 2x increased risk in family members, and that goes back to that PROMISE study.

We are screening people who have first-degree relatives with myeloma. So, what does it mean? Why do I have a higher risk if I have a family member with myeloma? I recently saw a patient who – the patient had myeloma, the mother had myeloma, and the grandmother had myeloma, and you’re thinking, “Okay, there is something we’re inheriting.”

So, we don’t know. There are some susceptibility genes that we could potentially be inheriting, germ line, and we’ve done something called “germ line,” which means you have it from Mom and Dad, that can increase your risk. It could be other factors come in and we’re still trying to understand all of these factors. What are the genes that can increase your risk? Is there an immune factor that can increase your risk, and can we identify those early in the family members?

The Truth About MGUS

The Truth About MGUS from Patient Empowerment Network on Vimeo.

Is MGUS the same as smoldering myeloma? Myeloma expert, Dr. Irene Ghobrial, provides a detailed overview of MGUS, including the risk of progression.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

Hesitant to Join a Support Group? Encouraging Advice from an Advocate 

Transcript:

Patricia:

What about this one? “An MGUS diagnosis will lead to myeloma.”

Dr. Ghobrial:

Great question. So, let’s talk about MGUS in general. In the general population, once you’re over the age of 50, there’s a three percent change of having MGUS incidentally found, and that’s known from the big studies from Dr. Robert Kyle. Any of us walking around probably may have MGUS, and we don’t know.

We started recently a big study called the PROMISE study where we actually screen for the first time to look for myeloma – or, for MGUS – and the reason for that is we said, “You go screening for mammography with breast cancer, you go screening with a colonoscopy for colon cancer; we don’t screen for myeloma, which is an easy blood cancer with a blood test. Let’s screen for it.” So, that’s available online – promisestudy.org.

The other thing that we said is if you have MGUS, your chance of progression is only one percent per year. That’s very important to know. So, that means that in 10 years, you have a 10% chance of progression to myeloma. In 20 years, you have a 20% chance. So, if you’re 70 or 80, you may have something else that happens before you even develop myeloma or before you are at risk of myeloma.

However, that doesn’t mean that you don’t have the chance. You have a very small chance; it’s a precursor to myeloma, but it’s one of the biggest precursors to myeloma, so we always tell you, “Please go see your doctor, please do follow up with us because the one thing that’s important is we catch it early before it happens.” So, it does not always go to myeloma, but if we live for another 100 years, it may actually progress to myeloma because of the 1% chance per year.

Patricia:

How about this one? “MGUS and smoldering myeloma are the same.”

Dr. Ghobrial:

That’s not true. That’s a very important question. So, in general, MGUS is diagnosed as having less than 10% plasma cells and a small monoclonal protein, less than 3 grams, and you don’t have any organ damage.

Smoldering myeloma – and, the name says it; it’s almost myeloma, it has a higher chance of progressing to myeloma – in general, it’s about 10% per year, and usually, the bone marrow has more than 10% plasma cells. Now, you start telling me as a patient, “Well, if my bone marrow is nine percent, I’m MGUS, and if it’s 11%, I’m smoldering myeloma, that doesn’t make sense.” So, it’s correct. In general, those demarcations or numbers are more for us as physicians to talk to each other about what we’re calling rather than the patient themselves. The patient is a continuum.

So, you may move from MGUS to smoldering at a certain point, and it’s not really that extra percentage of bone marrow that moves you into the 10% risk. In general, again, smoldering myeloma, you have a higher chance of going to myeloma. So, I saw a patient recently who’s 30 who has smoldering myeloma. The chances of progressing to myeloma is 10% per year. In five years, you have a 50% chance.

You want to make sure that patient is followed up carefully, and you want to offer, potentially, clinical trials because we want to prevent progression. The hope in the future is you don’t want until you have lytic lesions, fractures in your bones, kidney failure, and then we treat. The hope is we treat you earlier and we can make a huge difference in that early intersection for myeloma.

Patricia:

It sounds like staying engaged with your care team is critical.

Dr. Ghobrial:

Absolutely, and I would say myeloma is a specialty field. Come and see a myeloma expert, wherever it is, even for a one-time consult, because it’s really complicated and it’s not a common disease, so it’s not something easy for everyone to know what to do with MGUS, what to do with smoldering, what to do with overt myeloma. I relax for the first time. All of these things are important, and just like you go and see the best specialist in anything, I would say care about your myeloma in a very specific way, ask your doctor questions, go online and look it up, and always ask an expert if you want to have a second opinion.

Why Should Myeloma Patients Visit the Dentist Frequently?

Why Should Myeloma Patients Visit the Dentist Frequently? from Patient Empowerment Network on Vimeo.

 Dr. Irene Ghobrial, a renowned myeloma specialist, explains why myeloma patients should be more vigilant about visiting the dentist.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Dr. Ghobrial specializes in multiple myeloma (MM) and Waldenström macroglobulinemia (WM), focusing on the precursor conditions of monoclonal gammopathy of undetermined significance (MGUS) and smoldering myeloma. More about this expert here.

See More From Fact of Fiction? Myeloma

Related Resources

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

Diagnosed with Myeloma? An Advocate’s Key Advice 

Myeloma Office Visit Planners

Transcript:

Patricia:

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:

So, there is something about the bisphosphonates that we give patients, and they can cause – in a very rare number of patients – something called osteonecrosis of the jaw.

In the old days, when we didn’t know about that side effect, people would go get a root canal, come back, and have a big problem of osteonecrosis of the jaw with severe pain, and it doesn’t recover.

So, we’ve learned our lesson. We know very well that we hold Zometa or zoledronic acid if they’re getting any procedures. We make sure they don’t get surgical procedures – it doesn’t mean don’t get dental cleaning, please do the usual things for dental health, but don’t go into surgical procedures when you’re getting zoledronic acid – and we’re very careful with that.

We talk to our patients. Most dentists know about it, so I think this is something that in the old days, it was a problem. Now, we know how to medicate that.