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How Can Myeloma Patients Advocate for the Best Care?

 

How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.

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

Myeloma Treatment Decisions: What’s Right for You Resource Guide

What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options?

Transcript:

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:                  

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 want to 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 want to 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. 

Is My Myeloma Treatment Working?

Is My Myeloma Treatment Working? from Patient Empowerment Network on Vimeo.

How can a myeloma patient know if their treatment is working? Dr. Peter Forsberg explains tests involved in determining if myeloma treatment is effective and factors that may indicate that it’s time to switch therapies.

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:

What Key Tests Should Follow a Myeloma Diagnosis?

What Key Tests Should Follow a Myeloma Diagnosis?

Myeloma Treatment Decisions: What’s Right for You Resource Guide

Transcript:

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.

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Myeloma Treatment Options: Where Do Clinical Trials Fit In? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg discusses how clinical trials help improve care for myeloma patients and shares advice to patients who are fearful about joining a trial.

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:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

Is My Myeloma Treatment Working?

Is My Myeloma Treatment Working?

How Can Myeloma Patients Advocate for the Best Care?

 

How Can Myeloma Patients Advocate for the Best Care?

Transcript:

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 are 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 want to understand what you may be embarking upon as you begin the process.

Katherine:                  

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.

What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg outlines options in the myeloma treatment toolkit, including targeted therapies, chemotherapy, immunotherapy, and combination approaches —and explains how the recovery process from stem cell transplant has improved.

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:

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Myeloma Treatment Options: Where Do Clinical Trials Fit In?

Essential Imaging Tests After a Myeloma Diagnosis

Myeloma Treatment Decisions: What’s Right for You Resource Guide

Transcript:

Katherine:                        

Would you walk us through the currently available myeloma treatment approaches and who they might be right for?

Dr. Forsberg:             

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 regimens 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 regimen while trying to be very cognizant of potential treatment toxicities and taking steps to mitigate that.

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg shares his perspective on how patients fit into the shared decision-making process and their role in helping move treatment forward in a timely manner.

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:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

How Targeted Therapy Works to Treat Myeloma

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

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 component.

 

What Are Key Factors in Myeloma Treatment Decisions?

What Are Key Factors in Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Peter Forsberg explains the factors that he considers when making a treatment choice, including how treatment goals can vary from patient to patient.

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:

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

How Targeted Therapy Works to Treat Myeloma

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities Is Key

Transcript:

Katherine:                        

 When deciding on a treatment approach with a patient, what do you take into account when making the decision?

Dr. Forsberg:             

So, there are 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:

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 lucky 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.

Debunking Common Myeloma Misconceptions

 

Debunking Common Myeloma Misconceptions from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Peter Forsberg discusses common misconceptions about the disease and explains who may have an increased risk for developing myeloma.

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 Can Myeloma Patients Advocate for the Best Care?

What Is the Patient’s Role in Myeloma Treatment Decisions?

What Is the Patient’s Role in Myeloma Treatment Decisions?

Transcript:

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.

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

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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.

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

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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.

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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.

The Truth About Myeloma Treatment Side Effects

The Truth About Myeloma Treatment Side Effects from Patient Empowerment Network on Vimeo.

 Managing myeloma treatment side effects can be overwhelming. Dr. Irene Ghobrial reviews common side effects and shares how life can go on, even while undergoing treatment for myeloma. Download the Program Resource Guide, here

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.

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Transcript:

Patricia:                      

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:              

I think the biggest thing is the loss of hair, the nausea, and fatigue, and to the point that I cannot travel, I cannot see my family, I’m gonna be so immunosuppressed. And again, that’s a huge misconception. Yes, there is toxicity for every drug. Even if you take aspirin, you have toxicity from it.

But, every drug has risks and benefits, and currently, the combinations we have are just impressive that they are well tolerated in general. I’m not saying there is no side effect – there is, for every different class of agents, there are, and you will go through those side effects with your doctor in detail – but in general, yes, you’re slightly immunosuppressed, you have to take care of it, and I said it yesterday to one of my patients – if someone is looking very sick in front of you, don’t go and hug them.

Christmas is around the corner, and we want to make sure people celebrate and enjoy life and enjoy the holidays with their family members.

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. You tell me. Treatment side effects are unavoidable – we already talked a little bit about that. How about this one? “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.

Patricia:                      

Sure. How about this one? “Treatment causes increased risk for blood clots.”

Dr. Ghobrial:              

So, a couple of the drugs that we have – especially immunomodulators – can increase your risk for DVTs, blood clots, or pulmonary embolism, PE. So, the first thing we say is, “Let’s assess your baseline risk.

Are you someone who is at risk of clotting anyways?” Remember, myeloma also increases your risk of clotting, so you’re double. So, if you are at a high risk of clotting, then we would give the full anticoagulation. If you are not, then we would say aspirin is good enough to control that inflammation and endothelial damage that happens early on with therapy, and that can take care of it.

Patricia:                      

How about this one? “Side effects can be managed by diet and lifestyle.”

Dr. Ghobrial:              

So, I am a big believer that exercise and good, healthy living helps you in general. It makes your mood better, it makes you feel stronger, it gives you that energy because of the fatigue from the side effects, it helps with the dexamethasone because dex is a steroid, so you’re gonna be hungry, you’re gonna be eating more, and the on-and-off makes you fatigued and tired.

So, absolutely, diet and good healthy living – I’m not saying you have to go into extreme starvation and things like that. We say in general, be good, healthy living; exercise if you can.

Patricia:                      

What do you hear from your patients about side effects and treatments that they may think is true?

Dr. Ghobrial:              

I think neuropathy is very important, and we underestimate the neuropathy, so if you have numbness or tingling, tell your doctor.

That comes from Velcade; it comes from thalidomide when we used to use thalidomide, but it can happen in many patients who have an underlying amyloidosis and we did not diagnose it yet, or it can just happen as you go on from myeloma, rarely. So, tell your doctor about this.

I think the fatigue is very important to know about it because people suddenly change their life, and they want to know about that. I think the rashes that can happen with many of the drugs are very important to know about so that you’re not surprised when you get the rash. We know, for example, Revlimid can cause itching of the scalp, and that’s something that if we don’t tell the patients and they start going like this, then there is a problem.

So, it’s small things, but we want to let them know. We usually tell the patients everything, to a point of just going through all the side effects. It’s better to be aware of it, and then, if you get or not, at least you were aware.

Patricia:                      

Sure. How does one distinguish treatment side effects from comorbidities like fatigue?

Dr. Ghobrial:              

I think that’s important, and again, talking to your doctor is very important. Keeping a diary on the side is very important because you may have had some of those problems, and that could be from myeloma before you even started the drugs, and making sure that we know what’s from myeloma, what’s from your thyroid issue, what’s from your lung problems if you have asthma or COPD, what’s your diabetes if you have that or your other medications, from what are you doing with those medications.

I think that’s why when you start therapy, we tell you, “Try not to take too many other medications that we don’t know about, herbal medicines and other things, because then we don’t know what are the side effects and what’s causing what.”

Patricia:                      

Sure. You mentioned neuropathy. Let’s talk a little bit about what that is.

Dr. Ghobrial:              

So, neuropathy can come in different ways, but the most common one is numbness and tingling that you have in your tips of toes and tips of your fingers, and that can happen from medications, as we said, or from the underlying myeloma or amyloidosis. It can be painful, and we’re careful that if you have this, tell your doctor because if it get worse and worse, it’s very hard for us to reverse neuropathy, so just always tell us because we can stop the drug, we can decrease the dose rather than having you go through it.

Addressing Clinical Trial Misconceptions: The Facts

Addressing Clinical Trial Misconceptions: The Facts. from Patient Empowerment Network on Vimeo.

Dr. Irene Ghobrial, a myeloma specialist and researcher, dispels common myths associated with clinical trials, including a review of each phase of the clinical trial process.

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.

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Transcript:

Patricia:

Sure. What about clinical trials? What common misconceptions do you hear from patients enrolling in trials?

Dr. Ghobrial:

There’s a lot of misconceptions, and it’s unfortunate. I would say I would absolutely go on a trial if I can. I’m a believer in clinical trials because they’re the way forward to bring in new therapies and new options. I think a lot of people think that we’re experimenting on them when we’re doing clinical trials, meaning that it’s first in human, meaning it’s the first time we try this drug, and I would say that most of our clinical trials are not first in human.

They’re not the very first time we’ve tried them. Likely, those are drugs we’ve tried, we know the side effects, we know the toxicity, but it’s the first time we’ve put it in a different combination or it’s the first time we’ve put it in a specific subset of patients to look at response or at overall survival.

Most of the trials – so, before you decide “Oh, it’s a trial,” just think – is this a phase 1, a phase 2, or a phase 3? Phase 1 are usually that first time that we try in a population. Phase 2 are usually we know already what happens, we know the toxicity, we’re bringing it to look at the response rate in general or the survival, and then, phase 3s are the bigger studies, going to the FDA for approval.

The second thing is you want to think about is there a placebo arm in it. Most of my patients really worry about “Oh my God, you’re gonna give me the placebo,” and I’m like, “No, we don’t have a placebo arm in this trial. You’re taking the drug that we tell you about.” So again, depending on the trial – read it carefully – there may be a placebo arm, but in most of them, it’s not a placebo arm.

So, I would personally go ask the doctor every time, “So, you’re talking about standard of care. What else do you have? Do you have clinical trial options or not? What’s new?” Almost every single new drug that we’re gonna get approved in the next 5-10 years from now is what we have today in clinical trials. It would be cool to try and get access to those earlier.

Patricia:

So, there’s a significant amount of vetting that goes on before clinical trials are actually in process on humans.

Dr. Ghobrial:              

Oh, absolutely.

Myeloma Treatment Options: What’s Available?

Myeloma Treatment Options: What’s Available? from Patient Empowerment Network on Vimeo

Renowned myeloma researcher, Dr. Irene Ghobrial, provides an overview of current treatment options for myeloma, including an explanation of the now commonly used four-drug regimen.

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.

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Transcript:

Patricia:

Let’s get an overview of available myeloma treatments.

Dr. Ghobrial:

Oh, boy. Okay, how long do we have here? It depends. The moment I see a patient – and again, maybe we can start with smoldering myeloma because that’s an area I’m really excited about.

If you have asymptomatic disease, it does not mean you have to watch and wait until you fall apart, until you have bone lesions, until you have anemia. We want to see those patients early because we have a lot of clinical trials, and potentially, the cure may actually be in an earlier precursor session when we treat you earlier before you have the disease.

But, the standard of care is when you have symptoms – anemia, hypercalcemia, lytic lesions, and renal failure, or other things like 60% plasma cells – we say you have active multiple myeloma, and in that case, we start saying, “Well, are you a transplant candidate or not?” In the old days, it used to be by age, but now, we say age is just a number, so it really depends on if you have good organ function, are you in an active good state, do you have good lungs, good heart, are you willing to take the transplant, because now, there’s a big discussion whether we should transplant patients or not.

And then, at the end of the day, we’re starting to actually blur that, saying that most of our treatments are almost identical, whether you are old or young, whether you’re a transplant candidate or not. It depends on frailty. Can you tolerate this treatment or not? Maybe a few years ago, we used to say a three-drug regimen is the best way to go.

Now, most of us are starting to say four-drug regimen up front is the way to go, which is an antibody – currently, it’s daratumumab – a proteasome inhibitor – it could be bortezomib or carfilzomib – an immunomodulator – likely, this is lenalidomide – and then, dexamethasone. That’s sort of the option that we have right now, at least in the U.S.

If you go to Europe, you’ll find us using different drugs, like thalidomide or other things, but most of us are thinking of a four-drug regimen to think of our up-front myeloma treatment to get you the best remission, eventually MRD-negative disease, and then we talk about transplant or no transplant, and then, of course, we talk about maintenance.

We want to keep everyone on maintenance therapy; the question is how long, which maintenance, do we use one drug or not? So, there is a lot to be discussed in treatment of myeloma, and that’s the beauty of it. It’s truly an art and science together. It’s not just “Here’s a combination because you have this treatment.” We really personalize therapy for you.

We look at your cytogenetics, your FISH. We say you have high-risk cytogenetics or not, you’re young or not, you have good organ function or not.

There are so many things that we put in consideration when we come up with a treatment plan for a patient.