Tag Archive for: monoclonal gammopathy

How Does Disease Staging Affect Myeloma Treatment Choices?

How Does Disease Staging Affect Myeloma Treatment Choices? from Patient Empowerment Network on Vimeo.

What are the stages of myeloma, and how does this affect care? Dr. Abdullah Khan, a myeloma specialist, reviews how myeloma is staged, which genetic markers may affect risk, and the impact of staging on treatment decisions.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Khan.

See More from Engaging in Myeloma Treatment Decisions

 

Related Resources:

 
Expert Advice for Newly Diagnosed Myeloma Patients

Myeloma Induction and Consolidation Therapy Defined

Relapsed and Refractory Myeloma Defined

Transcript:

Katherine:

How does staging affect treatment option?  

Dr. Khan:

Staging is done by two methods. The older method is the international staging system, abbreviated as ISS. And then there’s the newer revised ISS, or RISS. 

The patients are assigned stages one to three. To determine the ISS you need lab values for the beta-2 microglobulin and albumin. For the revised ISS, you add on the lab value for LDH, lactate dehydrogenase, and you also add in the chromosome risk profile. So, there are certain genetic changes that predict a more aggressive myeloma. And the ones added to the revised ISS staging system are translocation 4;14, translocation 14;16, and deletion 17p.  

So, that’s the ISS stage and the revised ISS stage. There are also other factors patient providers look into when determining the risk profile for patients. So, that might include other genetic changes. 

One that is gaining a bit more traction right now is something called gain 1q, or amplification 1q, so more than one copy of part a chromosome. Some patients might have myeloma that doesn’t start, and the bone marrow might be found outside of the bones. And that’s called extramedullary disease, and sometimes that’s kind of high-risk. And some people have so much bone marrow plasma cells that it actually spills into their bloodstream. So, they might have high circulating plasma cells. Anyway, this will give information on staging.  

And in terms of how it affects treatment option, I’ll give maybe two examples. Let’s say in case one we have a 40-year-old patient high-risk multiple myeloma. The high risk portends a poorer prognosis, meaning the outcomes might not be as good as someone with a standard myeloma. So, in that case, I might try to do or use the most aggressive treatment option in order to maximize treatment responses because I know the overall outcome is poor. 

I do all this while acknowledging maybe the chances of having side effects might be higher, but that might be an acceptable tradeoff.  

In case two, I’ll flip to an 80-year-old with standard risk cytogenetics.  

So, I predict their myeloma to behave standard. In this case, I might try to use a regimen with a more acceptable safety profile, because the predicted response to treatment is anyways very good. So, I don’t want to hurt them in the process of getting their myeloma in remission.  

I’ll also say this. My practice pattern at The Ohio State University might be a little different than someone on the East Coast or West Coast, and that’s okay. We all have our experiences with the different treatment regimens, but we all have the same goal of being as aggressive as we can while being mindful of side effects. 

What Tests Are Essential Before Choosing a Myeloma Treatment Approach?

What Tests Are Essential Before Choosing a Myeloma Treatment Approach? from Patient Empowerment Network on Vimeo.

Dr. Abdullah Khan, a myeloma specialist, discusses the types of tests that myeloma patients should undergo before choosing therapy, at diagnosis, and if they relapse.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Khan.

See More From INSIST! Myeloma

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Transcript:

Katherine:

What testing should take place before choosing a myeloma treatment?  

Dr. Khan:

I thought I could answer this question in an indirect way first.  

Katherine:

Okay.  

Dr. Khan:

I just wanted to let the audience know that anyone, including those that are not in the medical field, can create an account with the nccn.org. That’s the National Comprehensive Cancer Network’s website.  

And from there they can download the myeloma guidelines, which are available to all myeloma providers as well. And in the guidelines, there are sections for workup, treatment, how to follow patients with myeloma, and many other things.   

So, going back to the question, the first patient encounter will likely include a thorough history and physical exam. Initial lab work includes blood counts, the serum chemistries so we know about the liver and kidney function, multiple myeloma markers. And patients about get very familiar with monoclonal protein, the serum immunoglobulins, and the serum-free light chains. 

These are used as the surrogates for responses when you’re undergoing treatment for the myeloma. We will also at the first visit probably also do a 24-hour urine collection, and that’s looking for the abnormal protein in the urine.  

There’s imaging. In the past, we used to do x-rays head to toe. That’s sometimes called the myeloma survey or the skeletal survey. But the new recommendations are actually looking for something a bit more sensitive.  

So, at our practice, what we do is a PET scan.  

So, that includes functional information as well the images themselves. And some institutions may do a PET scan head to toe using low-dose radiation. The final test we will do in patients with newly diagnosed myeloma is a bone marrow biopsy and an aspirate. 

So, the biopsy’s looking at the bone itself and the architecture. And the aspirate, you take the liquid part of the bone marrow, and you can ascertain a lot of information including the burden of myeloma when the patient’s newly diagnosed.  

Katherine:

What do you mean by “burden”?   

Dr. Khan:

You can quantify the number of cancerous plasma cells in the bone marrow. So, some of the information says you have a healthy amount of good bone marrow cells, 50 percent, 60 percent, for example, but of that 50 percent, 60 percent, maybe 80 percent is taken over by myeloma. So, you will get burden of myeloma information from there.  

Katherine:

What additional testing should take place following a relapse?  

Dr. Khan:

I’ll start that response by first talking about the types of relapses, and there are two broad categories. If we see the myeloma coming back as just the monoclonal protein going back up from its lowest, or maybe the serum-free light chain going up – and there are very specific criteria for what defiance a relapse. But if it’s just a number, we call it a biochemical relapse.  

On the other side, there’s a clinical relapse. And at that point, there might be new end organ damage. We’ve heard of the acronym CRAB when we’re describing myeloma. That stands for hypercalcemia, renal or kidney insufficiency, anemia, and bone disease. So, these are end organ damage directly from the multiple myeloma. 

So, typically, we’ll try to change the management at biochemical relapse, because a new organ injury may contribute to the patient’s frailty, or it might even limit the treatment options. The testing out of relapse is pretty similar to the first diagnosis. We’ll repeat the history and the physical example, the labs, imaging. And more often than not, I’ll also recommend a bone marrow biopsy to see is that myeloma changing genetically, and does it help me kind of determine new treatment options.  

Making Myeloma Treatment Decisions at Every Stage of Care

Making Myeloma Treatment Decisions at Every Stage of Care from Patient Empowerment Network on Vimeo.

Dr. Mark Schroeder, of Siteman Cancer Center, reviews the types of treatment approaches available for patients with myeloma, discusses how therapies are chosen and why, including in the relapsed and refractory setting. Dr. Schroeder also shares an update on new and emerging myeloma therapies.

Dr. Mark Schroeder is a hematologist at Siteman Cancer Center of Washington University School of Medicine in St. Louis. Dr. Schroeder serves as Associate Professor in the Department of Medicine. Learn more about Dr. Schroeder, here.

See More from Engaging in Myeloma Treatment Decisions

Download Resource Guide

 

Related Resources:

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Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. Today’s program is about how to actively engage in myeloma treatment decisions at every stage of your care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining us is Dr. Mark Schroeder. Dr. Schroeder, welcome. Would you please introduce yourself?  

Dr. Mark Schroeder:

Yeah. Hi, Katherine. Thanks for having me. I’m Dr. Mark Schroeder. I’m an Associate Professor of Medicine at Washington University School of Medicine in St. Louis. 

Katherine Banwell:

Thank you so much for taking the time out of your day to join us. As I mentioned, this webinar is about actively engaging in myeloma care decisions. So, I’d like to start with this important question, why is it essential for patients to play a role in their care and treatment decisions? 

Dr. Mark Schroeder:

Yeah, I mean patients are – a patient should be actively involved in decisions with their doctor. As a physician, doctors are thinking about “What is the best treatment for their disease or their cancer?” and patients, I think, have a role in trying to guide the doctor in terms of what outcomes they are seeking from treatment, what is there lifestyle like that we could potentially guide treatment around. Patients have different goals. Sometimes in cancer, we’re going for curative therapies. Sometimes we’re not, and quality of life is more important. Having an actively engaged patient ensures that your doctor is trying to tailor treatment to you.  

The patient who is educated also helps to bring resources to their physician about – sometimes physicians may not know of all the clinical trials that are ongoing or potentially even therapies. But have a patient ask about certain studies or ask about certain therapies, it helps to open a conversation with your physician to discuss those and to kind of talk through why it may or may not be a good idea for them in particular. 

Katherine Banwell:

Well, thank you. That helps guide us as we begin our conversation. As a patient, engaging in your care starts with understanding your diagnosis, so I’d like to go through some definitions. What is multiple myeloma? 

Dr. Mark Schroeder:

Multiple myeloma is a blood cancer. It’s a cancer in particular of a blood cell called a plasma cell. Everybody has normal plasma cells in their body. It’s part of your immune system that responds to infections; they are also cells that respond to vaccinations.  

And when a plasma cell becomes a cancer, it often forms a cancer called multiple myeloma. And that cancer results often times in damage to bones, low blood counts or anemia, potentially kidney problems, or possibly seeing high levels of calcium.  

Katherine Banwell:

What about smoldering myeloma? What is that? 

Dr. Mark Schroeder:

So, smoldering myeloma is a stage that happens prior to the development of myeloma that is causing organ damage. I talked about the damage to bones, kidneys, blood cells – that is called the CRAB criteria. The C stands for calcium, the R renal, A anemia, and B bones. We define myeloma by having damage to one of those four essential systems.  

Smoldering myeloma can happen when we actually see plasma cells that look like myeloma – that look like cancer cells, but they’re not causing the CRAB features of multiple myeloma. And there is a chance that sometimes that smoldering form of myeloma, it’s not causing any damage, but it can evolve and change into myeloma. 

Katherine Banwell:

What is MGUS?  

Dr. Mark Schroeder:

MGUS is a stage that happens prior to smoldering myeloma. We know that MGUS which stands for monoclonal gammopathy of undetermined significance – it’s a mouthful. That’s why we like to say MGUS.  

Katherine Banwell:

Yes. 

Dr. Mark Schroeder:

But it’s a protein that can be detected in your blood. Sometimes that protein does not mean you have a cancer. We can detect proteins like that in blood in patients who have, say, autoimmune diseases, and they’re at low levels. It’s just an immune response; it’s produced by those plasma cells that can be cancerous, but sometimes plasma cells grow because they’re stimulated – they’re overstimulated.  

And so, that monoclonal protein of MGUS can be detected in the blood, but we don’t see an increase in the number of cells in the bones that are classic for myeloma. But we know that about 1 percent of patients who have MGUS, every year, 1 percent might progress on to develop multiply myeloma. So, it’s a risk factor; it’s on the spectrum of disease from MGUS to smoldering myeloma to myeloma.  

Katherine Banwell:

Okay. And how is asymptomatic myeloma monitored?  

Dr. Mark Schroeder:

So, asymptomatic patients, I would consider those are the patients who have smoldering myeloma, so they don’t have the high calcium, the renal issues, anemia, or bone problems. And typically, those patients are followed up about every three to six months, depending on where they fit in kind of that spectrum of MGUS to smoldering myeloma to myeloma.  

Sometimes patients who have clinically identified myeloma and it presents very heterogeneous sometimes. They may not have a lot of organ involvement or organ damage, and maybe they’re frail, they’re elderly. And it may be appropriate also to observe patients who actually have some of the findings of myeloma, but the disease doesn’t seem to be as aggressive. 

Katherine Banwell:

Okay. Let’s talk about the different phases of therapy for myeloma, and I’m going to ask you for some more definitions. What is induction therapy? 

Dr. Mark Schroeder:

Induction therapy is the first treatment that we’re starting for myeloma. It’s oftentimes a combination of a number of chemotherapies that our goal is to get control of the cancer quickly, so reduce the burden of the cancer in a patient’s body.   

Oftentimes, when patients present with myeloma, that’s when the burden of cancer is the highest. So, induction therapy is a combination often of three or four different drugs given over the course of about three to four months to treat the myeloma and get initial control.  

Katherine Banwell:

What about consolidation therapy? What is that?  

Dr. Mark Schroeder:

So, after you have had a response to induction therapy, your oncologist might talk about, “Well, let’s deepen that response.” That’s when we think about consolidation. So, it’s going to be poten – most of the time is a change of therapy from the three or four drugs that you were treated for in the myeloma. An example of consolidation would be going through a stem cell transplant or more chemotherapy after stem cell transplant. So, that’s a change in therapy, and it ends up deepening the response, killing more of the cancer. 

Katherine Banwell:

And what about maintenance therapy?  

Dr. Mark Schroeder:

So, after you have gone through induction, you have control of the myeloma, we’ve deepened that response with consolidation, we know that myeloma is a cancer that tends to come back. And we know from experience that continuing some of the drugs that we used in induction at low doses are effective to try and prevent it from progressing or coming back, and it extends that period of time – and that’s maintenance therapy. It’s using some of the drugs we used to initially treat myeloma at lower doses to continue to suppress low levels of the cancer. 

Katherine Banwell:

Thank you for that. There are a number of treatments for myeloma patients. Can you talk about the types that are available? 

Dr. Mark Schroeder:

Yeah. So, the classes of – actually there is lots of drugs approved for treating myeloma but also recently approved.  

And we classify them into big categories. One of the categories is called immunomodulatory drugs – those are drugs like Revlimid and pomalidomide, or even thalidomide which was one of the first immunomodulatory drugs. Those are oral drugs that work on a specific pathway in the myeloma that leads to the myeloma cell dying. Another class of drugs are called proteasome inhibitors. Those include drugs like bortezomib or carfilzomib. Those drugs are often given under the skin or in the vein, and we know that they work really effectively on their own, but also when we combine them with an immunomodulatory drug like Revlimid or pomalidomide, the effect is even better. Another class is steroids. Steroids are kind of one of the first drugs used to treat this cancer, and steroids are effective at treating myeloma cells.   

Plasma cells are responsive to steroids. One of the first treatment regimens used to treat myeloma were traditional chemotherapies, and those are usually reserved for later on. You might think of traditional chemotherapy that causes hair loss, nausea, vomiting, low blood counts. Those, decades ago, were used to treat myeloma, but now we have effective oral, IV, or injection into the skin that don’t cause a lot of the traditional chemotherapy side effects but are very effective at treating the myeloma. And then another major class of drugs are considered immunotherapies. So, these are treatments that are engineered to either stimulate the immune system to go attack the myeloma, or maybe it’s even using part of your own immune system to engineer it to go attack the myeloma. 

Examples of those are called bispecific antibodies which kind of binds to the myeloma but binds to an immune cell, brings them together, or a CAR-T cell which takes your own T cells genetically modifies them to attack the cancer. 

Katherine Banwell:

And there is also a bone marrow transplant. Is that right? 

Dr. Mark Schroeder:

That’s right, yeah. I neglected – so, bone marrow transplant has been around for a while in myeloma. And despite it being around for so long and really good therapies being approved for myeloma, it’s still a standard treatment for myeloma. And bone marrow transplant in myeloma uses a traditional chemotherapy called melphalan that is associated with the chemotherapy side effects we talked about. But the advantage of bone marrow transplant is that it prolongs the time before the myeloma comes back and needs other treatments, and that’s why we do it. It can be toxic, but it can prolong the time before a patient needs another line of therapy.  

Katherine Banwell:

We know that everyone’s diagnosis is different. So, how do you determine a treatment plan for an individual patient? 

Dr. Mark Schroeder:

So, it depends in terms of the patient – initially, I will evaluate patients and determine how fit they are. Is it a patient that I think is strong enough to undergo a stem cell transplant? Is that going to be a benefit to them? That’s not necessarily a factor of just age, but it’s also, are they doing well functionally, or do they have any other medical problems like heart disease or kidney problems? Those things play into my decision on a treatment initially with patients. So, whether you’re fit or unfit will help to guide what your treatment is going to be in general. Fit patients are somebody that could undergo multiple treatments, go through a transplant, have minimal toxicity, and recover fully after more intensive treatments.  

Whereas, unfit may need more assistance, and we tend to reduce the intensity of treatments. It doesn’t mean the treatments, if you’re unfit, are less effective – they can be very effective. But our goals for treatment change in that situation. And we’re looking for responses but also looking for quality of life. And then it changes also depending on the genetics of the myeloma. Our treatment for patients who have genetic changes that are high risk will change compared to those that have what are called standard risk genetic changes.  

So, that is an important point to discuss with your oncologist if you have – Do I have standard risk or high-risk genetic changes in my cancer? And does that effect my treatment? And then also, treatment in somebody who is being treated a second time or third time or beyond for their myeloma depends on what treatments you had before and how effective they were.  

And what were your toxicities or side effects from those treatments? So, all those factors play into a decision of treatment for an individual.  

Katherine Banwell:

Oh, that’s great information. Let’s discuss what happens after treatment. How is the effectiveness of a treatment monitored? 

Dr. Mark Schroeder:

When you are initially diagnosed with myeloma, we will perform testing of blood. We look for that monoclonal protein or protein in the blood that is produced by the cancer cells. That protein level will be used to monitor the response of the cancer, and that’s a blood test – that’s called a serum protein electrophoresis. Also, initially, we’ll have x-rays of the bones, or it might be a CT scan or an MRI or PET scan that’s used to document if there is any bone damage. And oftentimes when we’re following up, we follow the bloodwork to look for reduction in that protein level.  

We may follow up additional x-rays to see if there are new areas in the bones that are damaged or if prior areas have responded to the treatment. And then oftentimes a bone marrow biopsy is used to document if you are in a complete remission which means that the protein we detected before or the cancer cells in the bone marrow cannot be detected after treatment. 

Katherine Banwell:

Why is it essential for patients to share any symptoms or issues they may be having with their healthcare team during and after treatment? 

Dr. Mark Schroeder:

Yeah, I mean, the treatments for multiple myeloma, they are typically continued in patients, and as we continue these treatments, side effects happen.  And as a physician, we can support patients through side effects. It may be as simple as adding a medicine to help with nausea. It may be modifying the dose of the treatments.  

So, it’s important to kind of monitor for things like, “I’m having a rash or diarrhea” or “I am getting nausea,” and letting us know right away. What the bad outcome would be if a patient is taking a medicine doesn’t let us know about side effects and decides to stop the medicine. Obviously, if you’re not taking a chemotherapy medicine, it’s not going to be effective to treat your cancer. That happens sometimes. So, having a good communication with your physician and your team of medical providers is important so that we can modify treatment. There are lots of alternatives for adjustments in the treatment that can be made that can be just as effective as the treatment you started on. 

Katherine Banwell:

So, communication is key. 

Dr. Mark Schroeder:

Yes. For sure, for sure. 

Katherine Banwell:

If treatment is successful, then when is a patient considered in remission? And what does remission mean? 

Dr. Mark Schroeder:

Remission – there are gradients on remission in myeloma. And we can have a partial remission which means we kill about half of the cancer cells. We can have very good partial remissions, or we can have complete remissions. And those equate to the depth of response or how well the myeloma responded. Those are measured by bloodwork, bone marrow biopsy, and may be repeat imaging or x-rays. So, if you have a complete remission, that means, we can’t detect that protein in the blood that was detected before, or protein that was detected in the urine, and we can’t detect the cancer cells on a bone marrow biopsy. We know that the deeper your remission or response to treatment, that equates typically with a longer time before the cancer may come back or need other therapies.   

Myeloma is a type of cancer that tends to come back, so we have very effective therapies, and sometimes, these therapies can get the myeloma to a state that we can’t detect one in a million cancer cells, but it tends to come back. And so, complete remissions means that, “Yes, it’s a good chance that the myeloma is not going to come back for years for you, but you still need to be monitored. You’re not necessarily cured of the cancer.” 

Katherine Banwell:

Unfortunately, relapse can occur after treatment as you’ve been talking about. And sometimes, a patient’s disease doesn’t respond to therapy, and that’s called refractory disease. What are the indicators that a patient’s disease may have relapsed?  

Dr. Mark Schroeder:

Yeah, so we would typically be following a patient about every three months. Somebody that has gone through the initial induction, consolidation, maybe they’re on maintenance therapy, or maybe they’re on active therapy for after they have relapsed from a myeloma. Each of those visits every three months, we are monitoring bloodwork, we’re monitoring the monoclonal protein that the myeloma produces.  

Or if it doesn’t produce much of that protein, we’re monitoring other parameters, so urine testing or maybe even imaging like a PET scan. And we’re looking for consistent rises in that number, and we’re looking for, not necessarily a little rise in the protein, but incremental continuous rise – that suggests that the myeloma is starting to grow again, and it’s growing on the current treatment, and we need to switch gears and try a different treatment. There are some patients who – that protein, the myeloma or the myeloma cancer doesn’t die to treatments – that’s refractory. So, we try a treatment, and there’s just no response. We don’t see a drop in the protein in the blood, we still see a good burden of the myeloma in the bone marrow biopsy. And those patients, that’s also an indication to try a different treatment.   

Katherine Banwell:

You mentioned that myeloma often returns, so how typical is it for a patient to relapse? 

Dr. Mark Schroeder:

Yeah, I would say that’s the norm for patients with myeloma. There are reports in patients who undergo things like stem cell transplant, that maybe 10 percent of patients might be out 10 years without detection of their myeloma, but that’s not the norm. So, most patients who are diagnosed with myeloma will go through periods of treatment and hopefully periods of remission – the majority go into periods of remission to myeloma where it’s not very active, but the myeloma tends to come back. 

Katherine Banwell:

If a person is relapsed or refractory, how are they typically treated? 

Dr. Mark Schroeder:

So, when they relapse, it depends on their prior treatment. So, if the myeloma is not responding to a drug, then it is, from the physician’s perspective that’s treating you, a good idea to change the type of chemotherapy drug that you’re on. Any time, whether it’s diagnosis or relapse, clinical trials are appropriate to engage with and potentially even use as primary treatment. All clinical studies in myeloma or for cancer in general are typically engineered around active treatments for the cancer. And so, those studies in myeloma when you’re having the cancer relapse, say, early in the course of your cancer, those studies typically are geared to use drugs that are approved by the FDA. Later in the lines of treatment, maybe you’ve had to progress after four lines of treatment, but trying to move them earlier, and they’re very active in the fourth line.  

So, you could potentially have access to an active treatment moved earlier in the treatment through a clinical trial. There is also a long list of other approved myeloma therapies. There is a good handout, I think, through the NCCN for patients for myeloma that lists a lot of the approved myeloma therapies and kind of guides patients. It’s a good resource book that I would point any of the listeners to. 

Katherine Banwell:

Oh, that’s a great idea. Thank you for that. What about emerging therapies for myeloma? What approaches are showing promise? 

Dr. Mark Schroeder:

So, I think the biggest news in myeloma, and across a lot of cancers now, are immunotherapies. We know in myeloma – now we have two CAR-T cells –  

Now a CAR-T cell is engineering your own immune cell called a T cell to express a receptor on its surface that binds to the myeloma, and then those immune cells go and kill the myeloma. That’s a form of immunotherapy.  

There’s two CAR-T cells for treating myeloma after the myeloma has come back four times, has needed four treatments. Those are very active in that line of therapy, and we can see response rates over 80 percent in patients who otherwise weren’t responding to other approved therapies for myeloma.  

On the other hand, there are other immunotherapies that are used earlier in the treatment course of myeloma. One that is not incorporated more frequently for the initial treatment is a drug called daratumumab – it’s an antibody. It’s a protein that binds to the surface of myeloma and stimulates the immune system to react against the myeloma. And so, it’s not a traditional chemotherapy, but it’s using your own immune system to attack the cancer.  

And then a third one that’s probably just as – it looks just as potentially effective as CAR-T cells are called bispecific antibodies. And that would use a protein similar to daratumumab which is an antibody, but it uses parts of antibodies to bind to – it could be two different proteins – one expressed on a T cell, the other one expressed on the myeloma cells. And when it binds, it brings those two cells together and causes your own immune system to attack the myeloma. Those are also very effective, and within the next month or two, there will be a bispecific antibody approved for treating patients with myeloma. 

Katherine Banwell:

Oh, that’s great news. Any others?  

Dr. Mark Schroeder:

Yeah, well – I mean, the other potential – there are other immune cells called natural killer cells that are also in clinical trials for development to attack myeloma, and potentially even engineering those natural killer cells to attack myeloma.  

There are other antibodies; sometimes the antibodies of protein bind a specific target on the surface of the myeloma. I mentioned one – daratumumab – but there is a whole list of others that are in clinical development. The one other antibody – or two, couple of other antibodies that are approved for treating myeloma are isatuximab which also binds to CD38. And another one called elotuzumab which binds to a protein called CS1 or SLAMF7 on the surface of myeloma.  

That’s more information than you probably wanted or needed, but those antibody therapies can be very effective in treating myeloma. There is another antibody therapy that has a payload of a toxin on the antibody, and it binds to BCMA or B-cell maturation antigen.  

That’s the same antigen that the bispecific antibodies as well as the CAR-T cells are targeting on myeloma surface, and so that is potentially one that is approved by the FDA also to treat myeloma.  

Katherine Banwell:

Okay. Let’s go to some audience questions. PEN community member, Mark, sent in this question prior to the program, “When is the right time for a clinical trial? When everything else is refractory?” 

Dr. Mark Schroeder:

No, I think clinical trials should be – you should engage your oncologist to talk about clinical trials right from the beginning. We typically think about clinical studies – they could be interventional where we’re actually giving a treatment. Some clinical trials are observational where we’re trying to learn about disease course in response to traditional therapies. Either of those may have direct benefit to the patient, or maybe it doesn’t affect the patient, but it affects future patients with myeloma.  

There are clinical studies like I mentioned that are moving therapies that are approved, but they’re approved after patients have been treated four or five times for their myeloma, and they’re now being moved earlier in the treatment. Some of those are at the initial treatment of myeloma in that induction phase. And so, we think that maybe by using some of these newer therapies or that immunotherapy class earlier on in the treatment of myeloma could result in deeper responses. We don’t know if it’s going to result in cures or that long remission beyond five or 10 years, but that’s the hope. If we can move the therapies earlier and prevent the cancer from becoming resistant to multiple treatments, maybe we can lead to longer remissions and longer survival of cancer patients. So, engage with your oncologist from the beginning through all of your treatment lines about clinical trials, is what I would say.  

Katherine Banwell:

Well, how can patients find out about clinical trials and what might be right for them? Where should they start?  

Dr. Mark Schroeder:

I mean, starting with your physician and having that conversation is a good start, but there are resources for patients. The Multiple Myeloma Research Foundation MMRF has good resources. There is a – called Myeloma Crowd that also has resources for patients with myeloma and social support for patients with myeloma to try to find and match you with a clinical trial. And then if you’re really academic and interested in doing your own homework online, all clinical studies in the United States, even internationally, are registered on a website called clinicaltrials.gov. Clinicaltrials.gov is – it can be searched, so you can search for myeloma; you can search for a specific drug.  

That will tell you, where are the studies being done, who are the study personnel, who should I contact to find out about the study? Unfortunately, not everybody can travel for treatment for their myeloma, and the best chance of potentially participating in a research study is to initially talk with your oncologist about it. There may be a larger center nearby that you can visit to consider clinical trials.  

Clinical trials that are trying to use the new immunotherapies would be a great option, but they may not be offered in, say, a community oncology practice. You have to have the infrastructure to conduct those studies. And if you have the resources to be able to travel, then finding something on clinicaltrials.gov and – I’ve had patients do the legwork and talk with their local oncologist and get referred to a center that actually has a study that they’re interested in participating.  

But a lot of times, studies are going to have you visit the center for all the screening tests and all the procedures for study. 

Katherine Banwell:

Right, so you have to know that you have the time available as well as the resources. 

Dr. Mark Schroeder:

Right, and the resources to do it. Yeah.  

Katherine Banwell:

Yeah. Trevor had this question, Dr. Schroeder, “My myeloma is considered high-risk. What treatment options are available to me, and are there clinical trials specifically for high-risk disease?” 

Dr. Mark Schroeder:

Yeah, great question. High-risk myeloma happens in about a quarter of patients, so one in four patients will have high-risk myeloma at the diagnosis. And it’s important because we know that when we say high-risk, that means that the myeloma is going to potentially come back sooner after treatments. It doesn’t mean that the treatment you’re going to be given is less effective, but it has a high propensity to come back sooner.  

Those patients with high-risk myeloma still benefit from a lot of treatments that we have for myeloma, but there are clinical trials geared to try and increase treatment in patients with high-risk myeloma to try to change the fact that their cancer comes back sooner than somebody who doesn’t have the high-risk features by using a novel chemotherapies or novel drugs to try to improve responses. So, there are for sure clinical studies, either at – potentially at initial diagnosis or at the time of relapse that could be entertained for patients with high-risk myeloma. And I would encourage you to seek those out for sure.  

Katherine Banwell:

Yeah. Great. Thank you. And please continue to send in your questions to questions@powerfulpatients.org, and we’ll work to get them answered on future programs. As we close out our conversation, Dr. Shroeder, I wanted to get your take on the future of myeloma. What makes you hopeful? 

Dr. Mark Schroeder:

Well, I am hopeful – just within the last five years, there have been a number of new drugs approved for myeloma. They are approved for later lines of therapy, but they are being moved earlier in the treatment. And within the last 10-20 years, we’ve seen an improvement in the survival of patients with myeloma. As these new therapies are in development, as they’re being moved earlier in the treatment line, I’m very hopeful that survival and potentially cure for this cancer is possible. The only way that we’re going to get to that point is through clinical research and for patients to partner with their physicians and to consider clinical trials because that is the only way that new drugs get approved and are available to other patients with myeloma. So, I’m excited about what is approved; I’m excited about what’s coming through the pipeline to treat myeloma.  

Katherine Banwell:

Dr. Schroeder, thank you so much for taking the time to join us today. 

Dr. Mark Schroeder:

You’re welcome, Katherine. It was a pleasure.  

Katherine Banwell:

And thank you for 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 today. 

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion? from Patient Empowerment Network on Vimeo.

When is the best time to seek a second opinion? Dr. Joshua Richter discusses the benefit of seeking a consult with a myeloma specialist to optimize your care.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More from Thrive Myeloma


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Transcript:

Katherine:

Randall writes, “I was diagnosed last year with myeloma, and my first treatment worked, but now I’ve relapsed. Is it too late to consider a second opinion or a consult with a specialist? Would that change anything?   

Dr. Richter:

It’s a phenomenal question. There have actually been studies to show that if you engage with a myeloma center at least once within your myeloma journey, you do better than someone who has never done that. So, it is never a bad time to seek out a specialist. And one of the good things that came out of COVID is telemedicine. So, if there’s not someone right in your area, reaching out to some of our advocacy groups to help connect you to physicians like me or any of my colleagues, we’re more than happy to see anyone, I’ll see you with an MGUS that’ll never bother you, as will all of my colleagues and people who work in myeloma.   

If you’ve had one prior line, 15 prior lines, anywhere in between. So, I think it’s always a good idea to see a specialist because he or she is more than happy to work with your local doctor to optimize your treatment without having to necessarily go to another center.

Defining the Myeloma Patient Role in Their Care

Defining the Myeloma Patient Role in Their Care from Patient Empowerment Network on Vimeo.

Why should myeloma patients speak up and be active partners in their care? Dr. Joshua Richter, a myeloma expert at Mount Sinai, explains the importance of communicating with your healthcare team and the difference it can make in your overall care.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Transcript:

Katherine:

Well, tell me what you think the patient’s role is, then, in setting care goals.

Dr. Richter:

Absolutely. The patient has the most crucial role of course. And, one of the things is honesty and really being to a point of brutal honesty with how they’re doing. I always tell patients, “You don’t get extra points for suffering. It’s not that if you sit there in pain you’re going to do better. Let me know what type of pain you’re having.” And pain doesn’t just mean a bone is hurting, or a muscle’s hurting, we call somatic pain.

There can be neuropathic pain where the nerves hurt.

There can be emotional and spiritual pain. These things all need to be addressed. And if you are suffering in silence, we have a lot of tools nowadays not just medicines. We have people to talk to. We have resources. So, letting us in to help is one of the most crucial things because we’ve actually shown that if you actually improve some of these, you may actually improve overall outcomes. So, the patient, please, all we want to do on the care side of the equation is help.

Let us know what’s bothering you. It may be small to you, it may be big to us, or vice versa, but the more open you are, the better we can help.

Katherine:

What advice do you have for patients to help them feel confident in speaking up and becoming a partner in their care? 

Dr. Richter:

So, that’s not always easy for a lot of people to do, and for some people, no problem. They’ll speak up at the first sign of anything. One bit of advice I would give to people who may have concerns or may not feel as comfortable about doing this is first of all, there’s a lot of members of the care team. So, I have patients that may not want to mention it to me, but mention it to my nurse or the medical assistant, and we all talk. So, that’s one way.  

The other thing that I think may help is involvement in patient support groups, hearing what others have to say about similar experiences and learning from them, them learning from you, and that may actually give you more of a confidence to speak with your care team. But the advocacy groups like the MMRF and IMF have tons of local support groups where you can sit in, and specialists come and speak or people share stories. And I think that can be really helpful to figuring out your optimal journey.  

How Does Immunotherapy Treat Myeloma?

How Does Immunotherapy Treat Myeloma? from Patient Empowerment Network on Vimeo.

Immunotherapy harnesses one’s own immune system to fight cancer. Dr. Krina Patel, a myeloma specialist and researcher, explains how this therapy changing the treatment landscape for myeloma.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

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Transcript:

Katherine:   

We’ve been hearing a lot recently about immunotherapy. Would you tell us what it is and how it works to treat myeloma?

Dr. Patel:       

Yeah, so I think immunotherapy is sort of where everything is  really changing the way we look at myeloma. So, I’ll date myself a little bit, but 15 years ago when I was a first-year fellow most people thought that immunotherapy wouldn’t necessarily work for myeloma. So, in all cancer care we have surgery possibly in myeloma.

We don’t use it as much, but if someone has a bone lesion that we need to do we might do some surgery there. We use radiation sometimes if we really need, for painful lesions or something that might be at risk for fracture. And we use chemotherapy all the time for treatment.

Immunotherapy is actually different types of medications. Some are proteins. Some are biologics that we can talk about it. But really, they harness your immune cells, all the other white blood cells that are in your bone marrow and in your blood, to actually go after the myeloma themselves. And so, there’s different ways we can do that. And, again, 15 years ago most people said, “No, we’re not going to be able to use immune therapy for myeloma because plasma cells,” which are myeloma cells, “are a white blood cell. So, their sisters, brothers, cousins, whatever you want to call those other white blood cells, how do we turn those into the enemy, or how do we make myeloma the enemy?”

And so, it took a long time for us to figure it out, but really, it’s about using your immune cells to kill that myeloma.

Could a Myeloma Clinical Trial Be Your Best Treatment Option?

Could a Myeloma Clinical Trial Be Your Best Treatment Option? from Patient Empowerment Network on Vimeo.

Dr. Saad Usmani, a myeloma expert, explains why clinical trials should always be considered when choosing myeloma therapy. Dr. Usmani also discusses common misconceptions about clinical trials and provides key questions to ask your doctor about this treatment option.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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Transcript:

Katherine Banwell:

Where do clinical trials fit into treatment?

Dr. Usmani:

So, as a clinical researcher, I’m a big proponent of telling my patients that if there’s a clinical trial that’s available to you, it doesn’t matter which stage of disease you’re at. Whether you’re newly diagnosed, or another myeloma has come back. Consider a clinical trial as your first and best option. Talk to physicians about both the standard of care options as well as clinical trial options.

Most clinical trials in myeloma are not someone getting treatment and the other person not getting anything. The trials that we’re doing, patients are getting at the very least the standard of care treatment. So, I would say that the – yeah. I mean, the clinical trials end up being the best option for majority of patients instead of standard of care.

Katherine Banwell:

Okay. If a patient is interested in participating in a clinical trial, what question should they ask their doctor?

Dr. Usmani:

The question that they should ask each time when you’re at that fork is can you please share with me what clinical trial options I have and compare them. Give me more information about “How do they compare with the standard of care treatments that are being offered?” And if you do not have any clinical trial options, would it be worthwhile, to again seek an opinion at a myeloma center of excellence to see if there are clinical trials available.

And in today’s day and age, you can have a virtual consult with a myeloma center of excellence. You don’t have to even go in. You can just chat with an expert on video and see if a clinical trial maybe right for you.

Katherine Banwell:

Are there common misconceptions you hear from patients concerning clinical trials?

Dr. Usmani:

Yeah. I think the most common perception patients have is “Oh, I’m going to be used a guinea pig for something that hasn’t been used in humans before.”

Katherine Banwell:

In a human before. Exactly.

Dr. Usmani:

So, most of the clinical trials are not first in human trials. Yes. We do have first in human trials where we are using novel treatments in some instances.

But there is strong rational and safety guardrails built around that. And if you’re participating in a first in human study, it’s highly likely that the other treatments have stopped working and there might not be other options. However, majority of trials that patients end up participating in are getting at least the standard of care treatment. So, I think it’s very clear to kind of communicate this to patients that, “Hey, you are going to be getting a standard of care treatment even if you go on the quote unquote control arm. It’s not that you’re getting placebo.”

So, I think clarifying what the protocol is, giving patients information kind of alleviates some of those concerns. But that’s the most common misconception people have. 

What Do Myeloma Test Results Reveal About Prognosis and Treatment?

What Do Myeloma Test Results Reveal About Prognosis and Treatment? from Patient Empowerment Network on Vimeo.

Myeloma expert, Dr. Saad Usmani, discusses how risk stratification is used in the care and treatment of patients with myeloma. Dr. Usmani reviews important test results that are used to classify low- and high-risk myeloma and the impact on treatment choices.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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Transcript:

Katherine Banwell:

How can the results of these tests affect prognosis and treatment?

Dr. Usmani:

So, currently for the most part, we’re treating myeloma patients in a similar fashion. Except for some tweaking based on these quote unquote high-risk features. So, there are certain chromosomes abnormalities that tell us that a patient has a higher chance of relapsing early even if they get the standard of care treatment. So, we try to enroll those patients into a clinical trial or have better optimization of their induction treatment and their maintenance strategy.

So, identifying these high-risk abnormalities is important because our treatment decisions may be modified for that patient’s disease. Or we might be able to get them to a clinical trial sooner than later.

Katherine Banwell:

Right. What is risk stratification? And how is it used in patient care?

Dr. Usmani:

So, risk stratification helps us identify people who are going to do well in terms of getting to a good response and maintaining that response and maintaining being progression free or being disease free versus those folks who maybe relapsing sooner. And that’s called risk stratification. So, you are essentially identifying and dividing patients into two different buckets saying, “All right. I have to pay attention to this person a bit more because they can relapse soon. So, I’m going to be keeping an eye on their labs and such very much, much closely.”

Katherine Banwell:

Let’s talk about therapy for myeloma patients. How are low-risk patients treated?

Dr. Usmani:

So, typically, the low or standard risk patients are treated with at least a three-drug induction treatment at the time of diagnosis. Or sometimes with four-drugs if you combine an antibody treatment. There are various regimens but the standard of care is at least three drugs. Then for patients who may be eligible for a stem cell transplant, they go on to receive autologous stem cell transplant. Once they’ve recovered from the stem cell transplant, they go on to maintenance treatment.

And the idea is that the induction along with stem cell transplant for those patients who are eligible gets patients to as deep as a response as possible. And the concept of maintenance is you maintain them in that response and delay the disease from coming back.

Katherine Banwell:

Right. And then what about high-risk patients? How are they treated?

Dr. Usmani:

So, for high-risk patients, we typically prefer using a four-drug regimen. Either daratumumab RVD or carfilzomib with Len Dex or KRD as induction treatment for high-risk patients. After the stem cell transplant, most patients would continue both the lenalidomide as maintenance along with the proteasome inhibitor. If patients had low or standard risk disease, they would only be getting lenalidomide as maintenance. So, here for high-risk patients, you’re adding a proteasome inhibitor. 

What Is Personalized Medicine for Myeloma?

What Is Personalized Medicine for Myeloma? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Saad Usmani defines personalized medicine for myeloma patients and reviews factors that are considered when tailoring treatment to a specific patient.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

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Transcript:

Katherine Banwell:

Thank you for taking the time out of your schedule to join us today. Before we delve into the discussion, let’s start by defining a term that we’re hearing more frequently. What is personalized medicine?

Dr. Usmani:

Personalized medicine is a fancy term to examine different aspects of a patient’s health outside of their cancer diagnosis. And also, the cancer itself – factors that are associated with good response to treatment or an early relapse from treatment. So, it’s a holistic kind of an approach that looks at all of these factors together. Also, looks at the patient’s mental and social well-being and comes up with a game plan for them.

So, I would probably divide the various factors that kind of come into play with the personalized medicine or personalized approach to cancer treatment by taking into account factors that are patient related, factors that are cancer or disease related, and then factors that are related to treatments that they maybe receiving.

So, these three kinds of combined together to form a plan that is unique to that individual patient. 

How Does Essential Testing Affect Myeloma Care and Treatment?

How Does Essential Testing Affect Myeloma Care and Treatment? from Patient Empowerment Network on Vimeo.

 Why is it important to ask about essential testing for your myeloma? Find out how test results could reveal more about your myeloma and may help determine the most effective care for your individual disease.

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Transcript:

Why should you ask your doctor about essential myeloma testing?

When a patient is diagnosed with myeloma, they typically undergo a series of tests that aid in diagnosing and staging their individual disease. The standard tests include:

  • Blood Test
  • Urine Test
  • Bone Marrow Biopsy, and
  • Imaging

As research in the field evolves, genetic profiling via more in-depth cytogenetic testing is increasingly common to further classify your myeloma. This testing often identifies unique biomarkers of the myeloma, such as translocations or changes in chromosomes.

So why do the results of these tests matter?

  • The presence of certain biomarkers can indicate a patient is low-risk, which can suggest a more positive prognosis.
  • There are certain biomarkers that indicate high-risk myeloma, meaning an aggressive treatment approach may be more effective.

Knowing your risk in myeloma is useful to your healthcare team when choosing a treatment approach or may help in determining if a clinical trial might be right for you.

How can you Insist on the best care for YOUR myeloma?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR myeloma care. Your doctor is expecting you to ask questions and should be able to answer them.
  • Ask your doctor if you have had or will receive genetic testing for risk stratification and how the results may impact your care and treatment plan. Be sure to ask for paper or electronic copies of your important test results.
  • And finally, bring a friend or a loved one to your appointments to help you process information and to take notes.

To learn more about your myeloma and access tools for self-advocacy, visit powerfulpatients.org/myeloma 

Which Myeloma Treatment Is Right for You? What You Need to Know

Which Myeloma Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo.

What should you know before deciding which treatment is best for YOUR myeloma? Myeloma expert Dr. Saad Usmani reviews essential testing that may help guide treatment decisions, and discusses the impact of risk stratification on myeloma care. Dr. Usmani also provides an overview of treatments in development, the importance of clinical trials, and shares why he’s hopeful about the future of myeloma research.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

Download Guide

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Transcript:

Katherine:

Hello. And welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss how to access the most personalized care for your myeloma and why you should insist on essential testing. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Okay. Let’s met our guest today. Joining me is Dr. Saad Usmani. Dr. Usmani, would you introduce yourself please?

Dr. Usmani:

Certainly. Thank you for inviting me, Katherine. I’m Saad Usmani. I’m the incoming chief of myeloma at the Memorial Sloan Kettering Cancer Center in New York.

Katherine:

Excellent. Thank you for taking the time out of your schedule to join us today. Before we delve into the discussion, let’s start by defining a term that we’re hearing more frequently. What is personalized medicine?

Dr. Usmani:

Personalized medicine is a fancy term to examine different aspects of a patient’s health outside of their cancer diagnosis. And also, the cancer itself – factors that are associated with good response to treatment or an early relapse from treatment. So, it’s a holistic kind of an approach that looks at all of these factors together. Also, looks at the patient’s mental and social well-being and comes up with a game plan for them.

So, I would probably divide the various factors that kind of come into play with the personalized medicine or personalized approach to cancer treatment by taking into account factors that are patient-related, factors that are cancer- or disease-related, and then factors that are related to treatments that they maybe receiving.

So, these three kinds of combined together to form a plan that is unique to that individual patient.

Katherine:

Right. What tests are necessary to help understand a patient’s specific disease both at diagnosis and prior to treatment?

Dr. Usmani:

So, the testing includes – what’s the objective of testing – we do tests to help in diagnosis to assess how much of cancer we’re dealing with and then what kind of cancer we’re dealing with. Even within a given cancer, how much cancer you have and what kind you have is important. Folks can have a little bit of cancer in

terms of burden. But it can be aggressive in its nature. So, you can have King Kong at your door, or it could be the green giant just trying to serve up veggies. Whereas King Kong will bite your head off.

So, with that in mind, there are things that we do such as blood tests to see effects on blood counts, kidneys, liver. We also do certain blood tests to identify what kind of multiple myeloma a patient may have as an example. So, the kind of myeloma protein they’re secreting. The kind of light chain they’re secreting. Then urine tests are done to see if there are any proteins that are leaking through the kidneys if there is kidney damage. Then bone marrow biopsy to a) look at how much myeloma and b) what kind by specific testing that we do on the bone marrow biopsy. And then imaging to see what parts of the bone’s affected.

Katherine:

Great. I’m assuming that these tests will help with the opening of the stages of myeloma.

So, how is myeloma staged?

Dr. Usmani:

So, the staging of myeloma is still a work in progress. The reason why I say that is we have a good way of accessing how much myeloma a patient may have. But if we don’t combine it well with what kind or how aggressive it may be. So, staging in myeloma relies on two blood tests that are serum albumin and serum beta-2 macroglobulin.

And they help us give a good assessment of how much myeloma patients have. And maybe a little bit of information about whether patients may have a bit more aggressive kind. But then you overlay that with cytogenetic information from the myeloma cells that are from the biopsy as well as another blood test called LDH.

If patients have any of the quote unquote high risk features, they are – along with a high level of beta 2 microglobulin, you stage them as stage three. If they don’t have them, they’re stage one. If they have some of the features, they’re kind of in between in stage two. And that’s how we stage multiple myeloma.

Katherine:

You mentioned cytogenetics. What testing is involved in that?

Dr. Usmani:

So, bone marrow biopsy – it’s very broad. But there are two parts to it.

One part is getting the bone marrow aspirated where we insert a needle into the pelvic bone and get parts of the bone marrow – the blood inside the bones out. And look at how much percentage of plasma cells are there. What kind of surface markers or features they have.

And then we look at if those cancer cells have any chromosome abnormalities that are unique to myeloma. And some chromosome abnormalities can be high-risk.

What does high-risk mean? High-risk means if you treat patients in a certain fashion, they have a higher chance of relapsing or a higher chance of the myeloma coming back out of remission. So, we identify those features by way of looking at cytogenetics. And there are different techniques in which we can take a look at that.

Katherine:

And what are those techniques? There’s something called FISH, right?

Dr. Usmani:

Yes.

Katherine:

And flow cytometry and also next generation sequencing?

Dr. Usmani:

Yes. So, and there is also conventional cytogenetics. So, flow cytometry looks at the different proteins that are part of the surface of any cell – any blood cell for that matter. It could also be any other cell as well, not just blood cells.

But in this particular case when we do flow on the blood marrow aspirate, we’re looking for unique features of those myeloma cells. But that does not tell us anything about the chromosomes. Conventional cytogenetics is the old fashion way. It’s a 40 – 50-year-old technique in which you make the cells in a test tube. You make those cells go through cell division. Each human cell has 46 chromosomes or 23 pairs. And when the cells are dividing, those chromosomes kind of line up in the center.

And the old fashion technique of conventional cytogenetics was take a look at the cells when those cells – when the chromosomes are aligned, and see if some parts of the chromosomes are missing or one chunk of one chromosome has attached to the other. That’s the old fashion way. The FISH technique, what it does is it’s geared toward identifying specific abnormalities.

And one part of that particular protein or molecule that goes and attaches to that chromosome has a color-coded probe. So, you can see within a cell different colors light up. And based on those unique features, you can identify “Okay. This cell over here is missing a part of chromosome 17. Or this part of chromosome 14 is attached to chromosome 4.” That’s FISH. So, FISH is very specific. Conventional cytogenetics is not. Next-generation sequencing, there are – that’s a broad term. You can measure different types of nucleic acids: RNA versus DNA. And those different techniques identify specific – they can identify specific mutations in a cancer cell.

So, each of these techniques provide different layers of information for our myeloma patients.

Katherine:

Thank you for that explanation. I appreciate it. How can the results of these tests affect prognosis and treatment?

Dr. Usmani:

So, currently for the most part, we’re treating myeloma patients in a similar fashion. Except for some tweaking based on these quote unquote high-risk features. So, there are certain chromosomes abnormalities that tell us that a patient has a higher chance of relapsing early even if they get the standard of care treatment. So, we try to enroll those patients into a clinical trial or have better optimization of their induction treatment and their maintenance strategy.

So, identifying these high-risk abnormalities is important because our treatment decisions may be modified for that patient’s disease. Or we might be able to get them to a clinical trial sooner than later.

Katherine:

Right. What is risk stratification? And how is it used in patient care?

Dr. Usmani:

So, risk stratification helps us identify people who are going to do well in terms of getting to a good response and maintaining that response and maintaining being progression free or being disease free versus those folks who maybe relapsing sooner. And that’s called risk stratification. So, you are essentially identifying and dividing patients into two different buckets saying, “All right. I have to pay attention to this person a bit more because they can relapse soon. So, I’m going to be keeping an eye on their labs and such very much, much closely.”

Katherine:

Let’s talk about therapy for myeloma patients. How are low-risk patients treated?

Dr. Usmani:

So, typically, the low or standard risk patients are treated with at least a three-drug induction treatment at the time of diagnosis. Or sometimes with four-drugs if you combine an antibody treatment. There are various regimens but the standard of care is at least three drugs. Then for patients who may be eligible for a stem cell transplant, they go on to receive autologus stem cell transplant.

Once they’ve recovered from the stem cell transplant, they go on to maintenance treatment.

And the idea is that the induction along with stem cell transplant for those patients who are eligible gets patients to as deep as a response as possible. And the concept of maintenance is you maintain them in that response and delay the disease from coming back.

Katherine:

Right. And then what about high-risk patients? How are they treated?

Dr. Usmani:

So, for high-risk patients, we typically prefer using a four-drug regimen. Either daratumumab (Daralex) RVd or carfilzomib (Kyprolis) with len dex or KRd as induction treatment for high-risk patients. After the stem cell transplant, most patients would continue both the lenalidomide as maintenance along with the proteasome inhibitor. If f patients had low or standard risk disease, they would only be getting lenalidomide as maintenance. So, here for high-risk patients, you’re adding a proteasome inhibitor.

Katherine:

Right. I see. Okay. And where do clinical trials fit into treatment?

Dr. Usmani:

So, as a clinical researcher, I’m a big proponent of telling my patients that if there’s a clinical trial that’s available to you, it doesn’t matter which stage of disease you’re at. Whether you’re newly diagnosed, or another myeloma has come back. Consider a clinical trial as your first and best option. Talk to physicians about both the standard of care options as well as clinical trial options.

Most clinical trials in myeloma are not someone getting treatment and the other person not getting anything. The trials that we’re doing, patients are getting at the very least the standard of care treatment. So, I would say that the – yeah. I mean, the clinical trials end up being the best option for majority of patients instead of standard of care.

Katherine:

Who is stem cell transplant right for?

Dr. Usmani:

So, stem cell transplant are kind of a misnomer. There is nothing magical about getting your own – collecting your stem cells and giving them back to you. I think the stems cells are – the way that – what they’re really doing is helping the patients bone marrow recover from the melphalan chemotherapy that’s given as part of the stem cell transplant because it’s melphalan, which was our first anti-myeloma medicine discovered back in the ‘50s and early ‘60s. That has been a mainstay of treatment of myeloma for six, seven decades now.

But if you give high doses of melphalan, there’s certain side effects. It can damage the stem cells and delay blood count recovery. So, that’s why patients get stem cells. So, in the body of evidence we have, most myeloma patients would be eligible for a stem cell transplant either at the time of diagnosis or if they decide to collect their stem cells and hold it back for the first relapse. That would be the other setting. But age is not a barrier. It’s more about how fit a patient is. And this is where a comprehensive myeloma geriatric assessment becomes important because an eyeball test is not good enough. You need to have more complex assessment of patients. So –

Katherine:

So, this is looking at comorbidities.

Dr. Usmani:

It is looking at comorbidities.

It’s looking at performance status. It’s looking at cardiopulmonary reserve. It’s looking at cognition and mental health as well. So, all of those factors. And obviously besides that, if you don’t have good social support, then going through a stem cell transplant becomes a challenge as well. So, there’s all these factors that kind of come into play together.

Katherine:

Yeah. Dr. Usmani, how is immunotherapy advancing in this field?

Dr. Usmani:

I think that’s the big area of research and clinical therapeutics over the past five or six years is immunotherapies. And it’s a broad umbrella. There are a few things that kind of fall under it – under that category.

So, it includes antibody-based treatments, includes CAR T-cell therapies. Yeah. I mean, it’s a very active area. Again, we can have a one-day seminar just talking about all the advances that are happening in that specific space. But that’s the new frontier. I think that’s the immunotherapies play a big role in finding a cure for myeloma.

Katherine:

You mentioned CAR T-cell therapy. Is it showing a lot of promise in myeloma care and treatment?

Dr. Usmani:

It is in the relapse refractory as in the advance refractory patients as well as in early relapse patients. And we are just starting to do clinical trials in newly diagnosed, high-risk patients. So, yes. It’s showing good promise. One advantage of CAR T-cell therapy is once you get the CAR T-cell therapy, it’s a one and done deal.

You just get CAR T-cell therapy and there’s no maintenance. So, patients really enjoyed that part of being off of therapy. They go into remission and then they don’t have to take anything for months or even a few years. So, I think that’s the biggest excitement about CAR Ts.

Katherine:

Yeah. Once a patient begins therapy, how do you monitor whether a treatment is working?

Dr. Usmani:

So, as part of the diagnostic work up, we typically have identified in the blood using serum protein electrophoresis and serum free light chains. What kind of myeloma proteins these – that particular patient’s myeloma cells are making. And we can monitor them every cycle of treatment. So, every three or four weeks.

And that’s the most noninvasive way of seeing if the treatment is working. The second obviously important thing is if someone has symptoms. If they have kidney damage, if they have bone pain, all of those things start improving as you’re getting treatment. And then in some patients, we’re also looking at imaging like PET CT scans at certain time points. And at some point, we do also look at the bone marrow biopsies to see what’s really going on in the factory.

Katherine:

We often hear the term MRD, or minimal residual disease used in the myeloma space. So, what is it exactly and how is it used in patient care?

Dr. Usmani:

So, minimal residual disease is a way to measure how much myeloma is left over in a given patient.

And historically, we were simply looking at the serum proteins and the light chain levels along with just the morphology of the bone marrow to see if – kind of determine a response. But we can have a much deeper assessment of how many cancer cells as a leftover from a bone marrow biopsy by different measurements. Someone can be in a complete response with M-Spike is gone. The light chains have normalized.

Yet they can still have 10,000 – 100,000 myeloma cells still in the bone marrow. And just using the bone marrow biopsy the way that we used to, we won’t be able to see them. We’ll just see, “Oh, these look like normal plasma cells.” So, using next generation sequencing and flow cytometry, we can look at normal myeloma cells at a very deep level – one out of one million.

But these tests are highly specialized. And especially the flow cytometry requires a lot of expertise. The NGS requires good sampling at the time of diagnosis as well as subsequent specimen.

Katherine:

Here’s a question we received from a viewer before the program. Mary writes: “I was just diagnosed with MGUS, and I’m obviously very concerned. What should I be looking for and how often should I check in with my doctor?”

Dr. Usmani: That is a very good question. MGUS is a precursor disease to myeloma and other class cell muscle disorders. And based on the original homestead county data from the mayo clinic, if there were 100 folks who had MGUS, one out of 100 every year would – there’d be one percent likelihood of them progressing to myeloma or some other plasma cell disorder.

So, the overall risk say in the next 20 years for a given patient is fairly low. And what we look at when we’re determining how frequently to check the blood or see the patient is the value of that M-spike.

If it’s a high value, if it’s two or three, we’ll be checking the labs more frequently every three months or so. Maybe seeing them every six months for the first year or two. If the M-spike value is very low, it’s one gram or less, we might be just checking labs once or twice a year and seeing patients once a year. But I would highly recommend in addition to seeing your regular hematologist who diagnosed you with this MGUS to do seek an opinion at a myeloma center of excellence.

Katherine:

Okay. If a patient is interested in participating in a clinical trial, what question should they ask their doctor?

Dr. Usmani:

The question that they should ask each time when you’re at that fork is can you please share with me what clinical trial options I have and compare them. Give me more information about “How do they compare with the standard of care treatments that are being offered?” And if you do not have any clinical trial options, would it be worthwhile, to again seek an opinion at a myeloma center of excellence to see if there are clinical trials available.

And in today’s day and age, you can have a virtual consult with a myeloma center of excellence. You don’t have to even go in. You can just chat with an expert on video and see if a clinical trial maybe right for you.

Katherine:

Are there common misconceptions you hear from patients concerning clinical trials?

Dr. Usmani:

Yeah. I think the most common perception patients have is “Oh, I’m going to be used a Guinea pig for something that hasn’t been used in humans before.”

Katherine:

In a human before. Exactly.

Dr. Usmani:

So, most of the clinical trials are not first in human trials. Yes. We do have first in human trials where we are using novel treatments in some instances.

But there is strong rational and safety guardrails built around that. And if you’re participating in a first in human study, it’s highly likely that the other treatments have stopped working and there might not be other options. However, majority of trials that patients end up participating in are getting at least the standard of care treatment. So, I think it’s very clear to kind of communicate this to patients that, “Hey, you are going to be getting a standard of care treatment even if you go on the quote unquote control arm. It’s not that you’re getting placebo.”

So, I think clarifying what the protocol is, giving patients information kind of alleviates some of those concerns. But that’s the most common misconception people have.

Katherine:

If patients are concerned about voicing their concerns and I think many of us are, why should they feel like they’re a partner in their care?

Dr. Usmani:

Well, that’s the only way that they will feel empowered. And we have to remember why we’re doing this, right? So, we’re doing this so that we can alleviate the burden of this disease from our patients and give them as good of quality of life as possible. And it’s a partnership. And in that partnership, the patient is the most important partner. Everyone else – it’s like you’re the main character.

The patient’s the main character in the movie. And all of us are supporting cast around them. I think that’s how you have to approach it. That’s how – that’s why it’s very important. And of course, patients – we’re not expecting our patients to read the papers and be knowledgeable about everything. But have a general sense of what to expect and it will be – so, having a more educated patient helps them deal with treatments better and have realistic expectations of what’s to come.

Katherine:

Right. As I mentioned at the start of this program, Dr. Usmani, patients should insist on essential myeloma testing prior to choosing a treatment. As we conclude, I think it’s important to point out that some patients may not know if that can even receive these important tests. So, what key question should they ask their physician about them?

Dr. Usmani:

So, you should be asking your physician about what kind of myeloma you have? What stage of myeloma you have? How much involvement in the bones you have? Do you have any chromosome abnormalities or any features of disease that put you at a higher chance of the myeloma coming back?

As you ask these questions, your physician will be prompted to think about “Okay. Am I missing something in my work?” And you can always ask is there anything else you need to do in terms of testing to give you a better idea of how best to approach my treatment and follow up.

Katherine:

I’d like to close by asking about developments in myeloma research and treatment.

What’s new that you feel patients should know about?

Dr. Usmani:

Oh, my. We can spend a long time with this answer. I would say that we understand what’s driving myeloma as a disease. We have a better understanding of what’s going on with the rest of the immune system and the bone marrow microenvironment where the myeloma cells live. So, the treatments that are being developed right now are trying to combine different ways in which you can shut the myeloma cell down by targeting those abnormalities or those abnormal pathways. And also, to harness the patient’s immune system to go after the cancer cells. So, combining what we’re calling immunotherapy with small molecule or more cancer directed treatments.

So, I think that’s kind of where the field is headed. And it’s – these are smarter strategies, smarter treatments. And we’re moving away from old fashioned conventional chemotherapies.

Katherine:

Dr. Usmani, thank you so much for joining us today. It’s just been a pleasure.

Dr. Usmani:

It’s been my privilege. Thank you so much for inviting me to this.

Katherine:

Thank you. And thank you to all of our partners.

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

 

Myeloma Research: What’s the Latest Treatment News?

Myeloma Research: What’s the Latest Treatment News? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares updates from recent conferences and provides tips to help you stay up-to-date on myeloma research developments.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful?

Dr. Fonseca:

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T-cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active.

I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made at ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD-negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.

Katherine:

How can patients stay up to date on information like this?

Dr. Fonseca:

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with

this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.

How Will I Know If My Myeloma Treatment Is Working?

How Will I Know If My Myeloma Treatment Is Working? from Patient Empowerment Network on Vimeo.

How do multiple myeloma experts determine if treatment is working? Expert Dr. Rafael Fonseca explains factors that are examined when assessing treatment effectiveness and why it’s important for patients to speak up about side effects. 

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

Once on therapy, how is the disease monitored, and how do you know if the treatment is working?

Dr. Fonseca:

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.

Katherine:

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment?

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment? from Patient Empowerment Network on Vimeo.

As a newly diagnosed multiple myeloma patient, the thought of treatment can be overwhelming. Expert Dr. Rafael Fonseca shares insight about expectations when starting a new treatment, and what goals providers have in mind for patient care.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re going to have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.

What Key Questions Should Myeloma Patients Ask About Treatment?

What Key Questions Should Myeloma Patients Ask About Treatment? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares specific questions that patients should ask about their treatment plan, and explains how to ensure optimal care for specific myeloma subtypes.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

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Transcript:

Katherine:

What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re going to be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re going to be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc.

Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.

Katherine:

Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100 percent of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.