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Is Treatment Adherence & Socioeconomic Disparities in Myeloma Creating Roadblocks to Best Care?

A Diverse Health Hub #NewsyNugget

How Can Myeloma Patients Facing Disparities Be More Proactive in Their Care?

Dr. Victoria Vardell of Huntsman Cancer Institute discusses her study where key findings reveal underserved myeloma patient populations are less likely to receive a stem cell transplant (SCT). Vardell encourages patients to ask questions of their providers until they have a complete understanding so they can make the most informed decisions in their myeloma care. Watch the complete interview below.

Myeloma Treatment: Black patients less likely to receive SCT

ASH 2019 Study: Here

Speak Up: Patients should ask questions until they understand in order to make more informed treatment decisions

Does Treatment Adherence in Myeloma Impact Outcomes?

Myeloma expert Dr. Sikander Ailawadhi of Mayo Clinic breaks down the importance of treatment adherence and disease management in multiple myeloma in order to get the maximum benefit. In Dr. Ailawadhi’s own words: “In myeloma it has been shown again and again, if you use the right treatment for the right duration and you get a deep response, you are more likely to do better.” Watch the complete interview below.

Myeloma Treatment: staying on regimen long enough for deepest response is important

Treatment Adherence: a known issue in multiple myeloma and many cancers

Treatment Duration: staying on the right treatment for full duration coupled with deep response is key


Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs in 2020. 

Fact or Fiction? Myeloma Treatment & Side Effects Resource Guide

Download This Guide

Fact or Fiction? Myeloma Treatment & Side Effects Guide

Download This Guide

 

Is Myeloma Hereditary? The Facts.

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

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

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

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

The Truth About MGUS

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

Transcript:

Patricia:

How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:

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

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

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

The Truth About MGUS

The Truth About MGUS from Patient Empowerment Network on Vimeo.

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

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

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

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

Transcript:

Patricia:

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

Dr. Ghobrial:

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

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

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

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

Patricia:

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

Dr. Ghobrial:

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

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

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

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

Patricia:

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

Dr. Ghobrial:

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

Why Should Myeloma Patients Visit the Dentist Frequently?

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

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

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

See More From Fact of Fiction? Myeloma

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Myeloma Office Visit Planners

Transcript:

Patricia:

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

Dr. Ghobrial:

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

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

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

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

The Truth About Myeloma Treatment Side Effects

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

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

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

See More From Fact of Fiction? Myeloma

Related Resources

Why Should Myeloma Patients Visit the Dentist Frequently?

Myeloma Treatment Options: What’s Available?

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

Transcript:

Patricia:                      

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:              

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

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

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

Patricia:                      

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. You tell me. Treatment side effects are unavoidable – we already talked a little bit about that. How about this one? “Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:              

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

Addressing Clinical Trial Misconceptions: The Facts

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

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

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

See More From Fact of Fiction? Myeloma

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Transcript:

Patricia:

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

Dr. Ghobrial:

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

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

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

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

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

Patricia:

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

Dr. Ghobrial:              

Oh, absolutely.

Myeloma Treatment Options: What’s Available?

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

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

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

See More From Fact of Fiction? Myeloma

Related Resources

Addressing Clinical Trial Misconceptions: The Facts

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Office Visit Planner

Transcript:

Patricia:

Let’s get an overview of available myeloma treatments.

Dr. Ghobrial:

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

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

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

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

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

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

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

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

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

Fact or Fiction? Myeloma Treatment & Side Effects

Fact or Fiction? Myeloma Treatment & Side Effects from Patient Empowerment Network on Vimeo.

When it comes to online myeloma information, how do you separate fact from fiction? Dr. Irene Ghobrial shares facts about current myeloma treatments, common side effects and emerging research. Download the Program Resource Guide, here

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

See More From Fact of Fiction? Myeloma

Related Resources

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Discussing Treatment with Your Doctor: Key Questions to Ask

Transcript:

Patricia:

Welcome to Fact or Fiction: Multiple Myeloma Treatment and Side Effects. Today, we’ll review common misconceptions about myeloma. I’m Patricia Murphy, your host for today’s program. Joining me is Dr. Irene Ghobrial. Dr. Ghobrial, why don’t you introduce yourself?

Dr. Ghobrial:

My name is Irene Ghobrial. I’m a professor of medicine at Dana-Farber Cancer Institute, Harvard Medical School.

Patricia:

Great, thanks so much. Before we get started, just a reminder: This program is not a substitute for medical advice, so please consult your care team before making any treatment decisions. Okay, Dr. Ghobrial, let’s get started.

Let’s talk about some of the things, first, that we hear from patients. You tell me whether or not this is fact or fiction. Here’s one: “There are a number of treatment options for myeloma.”

Dr. Ghobrial:

Fact. It’s amazing because I trained in the old days – and, this shows you how old I am – when we only had bad chemotherapy: Vincristine, Adriamycin, and dex. None of you would even know about it.

Then, we had had high-dose dexamethasone, and that was it, and then we had stem cell transplant, and that’s all we had until suddenly, we had thalidomide, lenalidomide, bortezomib, carfilzomib, ixazomib, and you think about it, we are now in an era where we have 15-20 new drugs, we have another 15-20 coming up, we have an amazing time to completely cure myeloma in the future, and that’s just an exciting time to see that happening in the last 15 years of our lifetime, when patients were living three years, when we had – I remember five percent complete remission rate.

Now, we expect that all of our patients should get into a deep remission into potentially MRD-negative disease, and that’s just the beauty of how myeloma has changed completely.

Patricia:

Well, you’ve already busted our second myth, I guess, that there is no cure for myeloma.

Dr. Ghobrial:

That’s correct. There is no cure for myeloma, but there is a long remission, and the question is if someone lives for 20, 25, 30 years without evidence of myeloma and they die from something else, it’s a step forward. I would love to see us say to a patient, “You are cured,” but until then, we’re getting longer and longer remissions.

Patricia:

How about this one? “Only blood relatives can be donors for bone marrow or stem cell transplant.”

Dr. Ghobrial:

That’s not correct at all. If we think about it, what is stem cell transplant? There are two types. There’s something called autologous stem cell transplant, meaning it’s from myself, so that means that I’m taking my own stem cells, and the whole idea of that autologous transplant is basically high-dose chemotherapy.

So let’s take your own cells before we give you that high-dose melphalan, give the chemo, and then give them back to you, so that you’re not with low blood counts for two weeks, four weeks, you’re only with low blood counts for a couple of weeks. So, that’s autologous transplant; that means I’m giving my own stem cells to myself.

Allogeneic stem cell transplant, which we rarely do now in myeloma, is from another person, and that could be from a relative, but also can be from unrelated donors if they are matching us, but that’s very few cases.

Patricia:

Let’s get an overview of available myeloma treatments.

Dr. Ghobrial:

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

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

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

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

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

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

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

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

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

Patricia:

We’ve been talking a little bit about what patients believe when they come in, some of the things they’re thinking about. What else do you hear from patients that you either have to correct or affirm when they come into your office?

Dr. Ghobrial:

A lot of things. I think the first thing is, of course, they say myeloma is fatal, and they’re so scared, and absolutely, I understand that, but the median survival has become so much better, so much longer. There is a lot of hope, enthusiasm, and excitement right now with the treatments we have. The second thing is most of our treatments are not your typical chemotherapy, so unlike breast cancer or other cancers where you lose your hair, you’re throwing up, you cannot work, you have to take time off, most of our drugs now, people are working full-time, they’re active, you don’t lose your hair, so probably, no one has to know unless you tell them.

And, I think that’s something important for a patient to think about. It’s their own personal life, and not having to interrupt that. I think that’s very unique. So, these are a couple things that, as they come in, that anxiety of “Oh my God, I have cancer,” and then, taking a deep breath and saying, “Now, how do I handle this situation?”

Patricia:

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

Dr. Ghobrial:

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

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

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

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

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

Patricia:

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

Dr. Ghobrial:              

Oh, absolutely.

Patricia:                      

What are the common myeloma misconceptions about treatment side effects?

Dr. Ghobrial:              

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

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

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

Patricia:                      

Dr. Ghobrial, let’s talk about some of the things that patients are concerned about when they come in about treatment side effects, and maybe some of those things aren’t true. You tell me. Treatment side effects are unavoidable – we already talked a little bit about that. How about this one? “Myeloma patients should visit the dentist more frequently.”

Dr. Ghobrial:              

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

31:59

Patricia:                      

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

Dr. Ghobrial:     

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

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

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

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

Patricia:                      

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

Dr. Ghobrial:              

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

Patricia:                      

Sure. How about this one? “Myeloma is hereditary.”

Dr. Ghobrial:              

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

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

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

Patricia:                      

What about preventing progression from smoldering? Is there anything patients can do?

Dr. Ghobrial:              

I would say enroll on the PCROWD. Study PCROWD is empowering patients themselves to go online. You can look it up – PCrowd with Dana-Farber – so, precursor crowdsourcing.

This is a study where anyone who has MGUS or smoldering myeloma can tell us about their data – so, their clinical information – tell us about their samples – so, give us their samples whenever they’re going to get their peripheral blood or their bone marrow – and by doing that, we can look at 1,000-3,000 people, put it all together, and hopefully give you very soon the answer of what causes progression, what are the specific markers genomically and immune that can predict progression, and can we target them?

Can we develop therapy for you specifically as a smoldering patient and not use the same drugs as myeloma, but target it for one specific patient for one specific operation?

Patricia:                      

When patients come into your office, they’re learning a lot of new things. Are there terms that are confusing to patients that you need to define for them?

Dr. Ghobrial:              

Absolutely. I think a lot of those terms are very hard. The words “complete remission” – was that a cure or not? It’s not.

We decrease all of your M spike, we decrease your plasma cells to zero, but it doesn’t mean that we’ve cured you. I think progression is very important. We use certain numbers. A 25% increase in your M spike or a 0.5-gram increase – even monoclonal protein is important to understand, that that’s the antibody that your plasma cells are secreting.

So, absolutely, there are so many words that could be very daunting for any patient to go through all of this. I think having an advocate with you – don’t go on your own because there’s so much information you’re getting that first time. I personally think if patients are recording us or taking notes, that’s perfectly fine because you go back and think about it, and you want to make sure that the information is clear.

So, it’s a lot of information to take in, especially if you’re not in the medical field, and I would encourage patients to ask questions, take notes, think about it a lot.

Patricia:                      

Tell me what an M spike is.

Dr. Ghobrial:    

So, an M spike – a monoclonal spike – is the protein – the antibodies. So, plasma cells are actually antibody-secreting cells, so they secrete the antibody, it goes in the blood, and when you have a lot of it from the same type of cell, they’re monoclonal, so they’re all the same IgG kappa – IgG kappa because they came all from that same kind of plasma cells.

And, when we run a specific gel, called serum protein electrophoresis, all of those antibodies will run in one area, and they will do a spike instead of going into a bigger area, where we call it polyclonal. So, that tiny little spike, which is a very high level of all of them coming together, we can measure it, and we can say, “Your monoclonal spike is 3 grams per deciliter.” If you don’t have all of them the same type of protein, they will just go around in one big area – big lump, basically, on that electrophoresis, and they will not come out as a spike. So, that’s monoclonal spike. 40:44

Patricia:                      

And, what are some reliable source of information for myeloma? The world wide web is vast.

Dr. Ghobrial:              

Yeah, and it’s unfortunate. So, there is so much information, and you can get lost, and you can also get misinformation. I think some of the big foundations are very important So, I would say the Multiple Myeloma Research Foundation, the International Myeloma Foundation, the Leukemia and Lymphoma Society, and of course, if you go to clinicaltrials.gov, you will find that information, and you’ll find a lot of the clinical trials. But again, ask your doctor. Ask the experts.

Patricia:

There are a lot of online forums – again, we talked about how vast the internet is. How can a patient identify misinformation online? What are some clues?

Dr. Ghobrial:              

That’s a hard one. I would say again, print it and take it to your doctor. Tell him, “Does that make sense? I’ve read this.” This is where you really need to do your research and go to the sites that you have confidence in so that you’re not lost in the middle of so much misinformation.

Patricia:                      

Do you have patients come in and say things to you that you just have to say, “Whoa, that’s just not accurate”?

Dr. Ghobrial:              

Yeah, but again, this is part of the discussion. I personally think every question is a good question. Even if it sounds completely ridiculous, ask it. That’s why we’re here. We’re here to tell you, “This is right, this is wrong, this one I don’t know, I’m not so sure,” and that’s okay. It’s part of the discussion.

Patricia:                      

Before we finish up, let’s get your take on the future of myeloma. What are you seeing on the horizon?

Dr. Ghobrial:              

Oh, a lot, and I hope I live long enough to see all of the amazing things. I truly think that we will cure myeloma. I think we should treat patients early. That’s an absolute change.

I think immunotherapy is coming in, CAR-T, bispecific antibodies. We will harness our immune system to kill myeloma, and I think there’s so much to be done there. I think precision medicine is very important. The first study is from MMRF [Multiple Myeloma Research Foundation] coming out now, genotyping, asking the questions “Which mutations do you have?”, and then putting them into different buckets so you can understand which disease should be treated with which drug.

We always say we know there is different subtypes of myeloma, then we treat you the same way, so let’s stop doing that, let’s do precision medicine, let’s individualize treatment specifically for you. So, I think that’s another big thing. So, in the future, there will be so many options. The hope is truly we’ll cure myeloma, we diagnose it early, we screen for it, we diagnose it early, and we prevent it from even causing one lytic lesion for a patient. 41:52

Patricia:                      

Dr. Ghobrial, let’s end by talking about why you’re so hopeful about the future of myeloma.

Dr. Ghobrial:              

Well, again, I trained – and, I said that 15 years ago – at Mayo Clinic, where we only had few drugs, when the survival of myeloma was three to five years, when we saw patients having severe fractures and severe pain, and now, we look at it, and it’s only 15 years in our lifetime, and we look at it that myeloma is a completely different disease.

We can diagnose it early – in fact, we’re thinking of screening them early – we can make a huge difference in all of the comorbidities, but the most important thing is we have so many amazing drugs that we’re using together to get an amazing, complete remission, MRD-negative disease, and then, in the next 5-10 years, I think we will change, again, immunotherapy with CAR-T. We will have precision medicine and immunotherapy to completely change how we treat myeloma. So, I am extremely hopeful and extremely excited for our patients.

Patricia:                      

So, how do you talk to your patients about this hope? I would imagine that when they come in, they’re pretty terrified about what’s going on.

Dr. Ghobrial:              

Absolutely. Again, the first thing is you want to say, “Yes, you have a cancer,” and that shocks you. That is a big thing. It makes a big difference in a patient. “I have cancer now” is an important part that you have to acknowledge.

And then, you go to the next step, and now, let’s talk about treatment. Let’s talk about survival. Let’s not say, “I will not see my kids grow up.” These are not things – again, we cannot predict. We’re not gonna play God, and we can never predict if someone will respond or not, but we know from the data that we have so far that we have amazing remissions and long-term survivors. I have many of my patients that I transplanted 15 years ago still alive, doing well. Again, I cannot say that myeloma is cured, but we have a good remission rate currently.

Patricia:                      

Dr. Ghobrial, thank you so much for taking the time today.

Dr. Ghobrial:              

Absolutely. Thank you.

Patricia:                      

And, thanks to our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Patricia Murphy.

ASH 2019: Timely Myeloma Care Makes a World of Difference; Experts Prioritize Addressing Race-Associated Risks

Diverse Health Hub and the Patient Empowerment Network will partner to produce ongoing educational programs beginning in 2020. These programs identify demographic disparities found in existing diagnostic and treatment practices for multiple myeloma. Program content and educational resources will supply actionable and meaningful material tailored to healthcare providers, patients, and patient care teams. When patients feel heard and understood by their healthcare providers, they are more likely to participate in clinical trials and advocate confidently for treatment options. Our joint goal is to empower a targeted and unique population of myeloma patients to spark life-saving conversations with their providers. Be sure to sign up for PEN’s newsletters to learn more.


Onsite at ASH 2019, Diverse Health Hub interviewed prominent myeloma researchers, including questions from our members.

Is earlier effective treatment for a deeper response keeping myeloma at bay? Yes. According to new evidence around timing of treating myeloma presented at ASH 2019, immunotherapy drug daratumumab (DARZALEX) demonstrated it could repeatedly attack marker CD38 – a game changer. Dr. Sikander Ailawadhi sheds light on these new findings: “In the past the thought was that once the patient was treated by a drug that targets one particular marker that whole pathway or that mechanism of action is gone, but there was data presented at ASH, which we are all very encouraged about. Patients who have let’s say been treated with daratumumab (DARZALEX)—so one drug affecting that pathway – when they had disease progression at some point, they were treated with a brand-new drug going in for that pathway and the patients got very good deep responses.Watch the complete interview below.

  • Myeloma Treatment: Earlier effective treatment for a deeper response to keep disease quiet
  • New Drugs: 2020 to be a big year for myeloma, drug approval buzz
  • Encouraging Data: News at ASH 2019 reveals CD38 marker can be targeted repeatedly

Are disparities shortening the lifespan of a subset of myeloma patients? Yes. Several published papers indicate that the burden of disease was higher for a subset of myeloma patients as a result of socioeconomic status, age, race, lack of resources, access, and insurance type. Dr. Ailawadhi identifies the need for programs that educate both patients and providers to mitigate underlying disparities. Watch the complete interview below.

  • Access to Care: Significant number of minority patients unaware of medical record access
  • Burden of Disease: African Americans and Hispanics get treatment later than whites; costs tend to be higher for minority patients
  • Observation: More frequently diagnosed with myeloma later stage, at a younger age
  • Need: Educate patients, educate providers. Patients need to be their own advocates and direct the conversation with their providers in order to get to the right expert care

What role does education and awareness play in the diagnosis of ethnic myeloma patient populations? Despite advances in the treatment of multiple myeloma, Dr. Ajay Kumar Nooka identifies a gap between patient education and awareness of current therapeutic options. Dr. Nooka discusses how myeloma presents in various ethnic groups, and identifies disparities in access to initial treatment for African Americans and Hispanic populations. Nooka says, “education and awareness is the biggest gap we tend to see.” Watch the complete interview below.

  • Good news: “Really good time in myeloma, more therapeutic options”
  • Need Improvement: Education and awareness gaps still need to be filled; disparities among people of color, long road to diagnosis, delays and access to drugs
  • Clinical Trials: Lack of minority awareness and participation in clinical trials contributes to treatment disparity

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

ASH 2019: Multiple Regimens, Deeper Responses in Multiple Myeloma Treatment

 

Dr. Sikander Ailawadhi of Mayo Clinic provides high-level highlights for multiple myeloma from the 61st American Society of Hematology (ASH) Meeting in Orlando, Florida.

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

Related Programs:

Good News for Future of Myeloma Treatment, Still Addressing Race-Associated Risks

ASH 2019: Disparities Around Accessing Health Technology Revealed for a Subset of Myeloma Patients

ASH 2019: Disparities Around Accessing Health Technology Revealed for a Subset of Myeloma Patients

In this Diverse Health Hub interview, Dr. Sikander Ailawadhi of Mayo Clinic, discusses disparities around access to care in multiple myeloma from the 61st American Society of Hematology (ASH) Meeting in Orlando, Florida.

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

Related Programs:

Good News for Future of Myeloma Treatment, Still Addressing Race-Associated Risks

ASH 2019: Multiple Regimens, Deeper Responses in Multiple Myeloma Treatment

Good News for Future of Myeloma Treatment, Still Addressing Race-Associated Risks

Respected myeloma expert, Dr. Ajay Kumar Nooka, provides an update from the 61st American Society of Hematology (ASH) meeting. Dr. Nooka shares why this is a good time in myeloma research and the important work that remains around myeloma treatment disparities for people of color.

About Diverse Health Hub:

Diverse Health Hub is a health equity education and awareness channel producing educational content for both patients and providers in order to bridge the gaps between healthcare practices and the needs of multicultural communities.  Diverse Health Hub works directly with a diverse patient and respected provider population in multiple therapeutic areas to promote cultural competence in healthcare. The organization believes access to these diverse perspectives cultivates culturally competent communities.

Related Programs:

ASH 2019: Disparities Around Accessing Health Technology Revealed for a Subset of Myeloma Patients

ASH 2019: Multiple Regimens, Deeper Responses in Multiple Myeloma Treatment

The Empowered Myeloma Thriver and Expert Chat

The Empowered Myeloma Thriver and Expert Chat from Patient Empowerment Network on Vimeo.

 Dr. Nina Shah, a specialist in multiple myeloma, discusses what newly diagnosed myeloma patients need to know.

Dr. Nina Shah is a specialist in blood diseases who focuses on treating multiple myeloma at University of California San Francisco. More about this expert here.


Transcript:

John Rosengard:

Hi, and welcome to the Patient Empowerment Network Program. My name’s John Rosengard, and I’m a myeloma patient survivor. I just wanted to tell you a little bit about our program today. I’m joined by my hematologist and oncologist, Dr. Nina Shah, from the University of California San Francisco. Dr. Shah, could you give us a little bit of your background, please?

Dr. Nina Shah:

Hi. My name’s Nina. I’m really thrilled to be here at this event. I have been at the University of California San Francisco since 2017. And before that, I was at MD Anderson Cancer Center. My clinical focus is in multiple myeloma, and my research focus is in immunotherapy and cellular therapy for multiple myeloma. I look after hundreds of patients with multiple myeloma, and our clinic here at UCSF as 1,500 active myeloma patients, and I really love participating in a mixture of clinical trials, which includes antibody therapy, novel drug combinations, novel agents, phase one trials, and chimeric antigen receptor T-cells or CAR T-cells.

John:

That’s great. Thank you. I’ll give a brief rundown of my myeloma journey for other patients who may be tuning into this. I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018.

After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?

Dr. Nina Shah:

Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we – the standard now, give three drugs upfront, but this explored possibly using an additional drug. And in your case, this drug was daratumumab, which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab, was just FDA approved to be given, upfront, exactly in your setting, with a transplant.

And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.

And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple Myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together.

John:

Yeah, absolutely. The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T-cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.

But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the Myeloma patient community.

That didn’t come out until, I guess, my second or third faithful Google search, but it was really helpful as a layperson because my initial reaction was additional medications. And I brought along a show and tell for us. Here’s the additional medications.

Dr. Nina Shah:

Oh, good.

John:

– and here’s the backup if those don’t work. I don’t take those now, but it’s not inconsequential to say, “It’s really important to understand the multiplying effect.” I’ll call it that as a layperson. The multiplying effect and the quick or measurable response. So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?

Dr. Nina Shah:

Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients – actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case.

So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen – what they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.

We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to e-mail every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are gonna work together. If we see something abnormal together, we’ll chase it.”

And similarly, the bone marrow results – because those are also – I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.

John:

Would you say that it’s easy or difficult for a patient or a caregiver to get bogged down in detail as they’re picking up the vocabulary, picking up the processes available to them?

Dr. Nina Shah:

Yeah, I think that’s definitely patient dependent and caregiver dependent. What I’ve noticed – and I know I have a skewed perspective because I practice at an academic center, but what I’ve noticed is that a lot of people want to know. They want to know the details, and, at first, it’s a lot of information to digest because, the day that they’re seeing you for the first time, we’re talking about disease and prognosis and risk. And maybe, the second time, we’re talking about treatment and eventual transplant. But each time, I do show or I talk about their “markers”, and we talk about the labs. Each time that we have a visit, it’s a chance for patients to get more details and to digest those details more.

So, if-if they’re detail-oriented, that actually ends up being a good thing, uh, because then, as time goes on, they feel like, “Okay, I have an idea of what’s going on. I know what to look for.” But that doesn’t mean you have to be. Some patients would rather just have their provider tell them what they need to know, and they don’t wanna be a slave to the lab, and that’s fine, too. Either way is fine as long as both the patient and the provider know how to navigate each system.

I think that one of the things that you kind of already brought up is what tools that you guys, as patients, have, particularly within electronic medical records, and this is actually something relatively new for all of us. Like I said, 10 years ago, we didn’t use it as much. But now, you have things like the MyChart app, and then you have social media. We have patient advocacy groups. If you had to look at all that, what would you say is the most useful for you?

John:

I’d say, a little selfishly, it was following your suggestion to follow you on Twitter, to keep up with the research because you’re a great filter for all of the content that’s out there. I know a few of the doctors that are very active in the multiple myeloma community are thoroughly well published. They’re speaking on a regular basis. And your Twitter feed, by the way, ninashah33 – just ninashah33 all one term.

You filter that out for me, so I have a running chance at actually finishing it in an hour when I pull it up because the content that you bring together is some highlights about what medications are working, what therapies are coming out that are that are combinations of medications – stem cell transplant, CAR T-cell therapy, and so on.

And in getting up the learning curve, which I think every patient and caregiver has got a duty to do, is a lot easier if there’s someone saying that there’s some raw research in the UK. There’s some raw research in these medical centers here in the U.S. Follow them. Follow these doctors. You’ll get a good read on what’s the curve. I think that that was a lifesaver because I could’ve really spent 10 hours a week just getting background and just getting comfortable with the content. And at some points, it was a little unnerving to find out that there’s a 50/50 chance of the life expectancy being measured in a very short time span versus having the forecast that you could really be returning to your life.

But I travel quite a bit for my work. You travel quite a bit for your work. To be able to get back to that pretty quickly was evident a month after my stem cell transplant, which I remember ticked you off a little bit that I should be just saying that I can’t just stroll in the San Francisco Airport and go wherever I wanted to. I had to give a little bit of thought about my compromised immune system, which I well and truly did. But again, going off of the filtered information as opposed to the raw information was a big plus for me.

Dr. Nina Shah:

Yeah, I mean, that was one of the things, I think, for you and I, as a doctor/patient relationship, that I saw you were really focusing on things – that you wouldn’t ask, necessarily, “Okay, when’s this gonna be cured? When’s this gonna be cured?” But rather, “Okay, I know that there can be times between my state right now and eventual potential progression or not, and how do you tell a patient – if you see a patient who’s newly diagnosed, how do you tell them to focus on those types of things so that they can bite off small pieces and go day to day, get back to their life, and not focus on just one thing about, “Oh, is this gonna be cured ever?” What advice do you think you can help people with that?

John:

Well, my first thing is – and this is me being me, but I built a spreadsheet. I built a giant spreadsheet of my lab data, going back to, really, the 1990s. Nothing to do with UCSF’s treatment, but just I wanted to put it all in one place so I had just a reference point to start with.

And it gave me a silly sense of control, I guess, to say, “I can now detect if there’s a very, very slight change in the IgG kappa reading from month to month to month. I can be on top of it just like you are.” That doesn’t give me an MD or a license to practice medicine, but it gives me the ability to at least say, “Is this anything to be concerned about, or is this still in the error bar of I’m still okay? And we haven’t gone up here. We haven’t gone down here. We’re still sort of moving along over time.”

And that comfort level of just building some sensitivity to what data mattered and what data could still move around and be perfectly normal, that sensitivity that’s – Microsoft Excel doesn’t give you that. The raw lab data doesn’t give you that. That’s where your position and honest conversation can take you to a good understanding of how those different variables interplay with one another and how a sudden spike in one can be indicative of nothing more than having a cold or picking up the flu, unfortunately, during that time of the year, cold and flu season.

Dr. Nina Shah:

Yeah. Yeah, I think that, patients like you, who are either, maybe, just starting therapy or maybe just starting to get engaged with their process, trying to have more control, power, and, also, education about what they’re doing, it’s really important to ask questions to their provider. And what you said is right. You’re looking at the labs on the spreadsheet. I’m looking at it at the electronic medical record. We’re both human, so I may miss something. And I try not to, but – and you may catch something.

Even though we have our “roles” as provider and patient, we are on this together. So, I think it’s really important for patients to ask things of their doctor. They should never feel shy. I know it’s sort of hard because you’re talking to a stranger and, yet, someone you have a relationship with. So, it’s kinda interesting. You may not want to question that person, but you should with all our capable thinking and processing information different ways. And it’s really nice – I actually like it when the patients ask me, “Well, what do you think about that?” And I may have not thought about it in the way that they’re thinking about it because they may tie it into a symptom that they’re having, or, like you said, you may have a virus or something and say, “I have this virus,” and maybe I was worried about this IgG, but it turns out that you had a recent virus. So, they’re all ways that we can put information together and, more information, the better.

So, one thing I would just say to patients and what I feel like you benefit from is, ask questions. Ask questions about lab interpretations, about what next steps are, just questions about what’s been going on lately. And I think that will give education and, I think, ultimately, will give the patient more power.

John:

Mm-hmm. And just to go a little further into that point, every month, I come in for my lab work as part of the participation in the clinical trial. Other patients may be coming in on a less frequent basis, perhaps every 90 or 180 days or once a year if they’ve got a, for example, smoldering myeloma or other conditions. My point in bringing this up is that one of those may be – and if we all live long enough, one of those probably will be – one to say, “It’s not getting better, and this condition is getting a little worse.” That’s another step I’m ready for, to just say, “What are our options at that point? What treatment options do we have available?”

Because it’s not a one and done. It’s not like having a broken bone where you can just say, “Set it, get it in a cast, take good care of it, and keep the weight off of it. And then, six to eight weeks later, something new will be ready to happen.” This is an ongoing battle with them and being a part of a clinical trial that does help the 30,000 newly diagnosed multiple myeloma patients here in the U.S. be a little closer to some effective treatments is, I think, all part of the healthy part of the equation. Any further thoughts on first steps for those newly diagnosed patients?

Dr. Nina Shah:

Yeah. I think, as you already mentioned, things like the Patient Power website, Myeloma Crowd, healthtree.org, Myeloma Beacon, MMRF – all of these are really important places where patients can get good quality information. I like hearing that my patients have gotten information from other people. It’s okay to get a second opinion. It’s totally fine. You should feel in control of your health and your decision making.

John:

Absolutely. Just a little bit about Dr. Shah, from my perspective, she’s my go-to person for multiple myeloma at UCSF, but UCSF is like any big institution. If you like processes, multiple myeloma is your condition. If you want to talk about faster infusions, because they might be taking too long, there’s a team, but she’s not the right person to talk to directly. If you wanna understand lab results, she’s the right person. But if you have trouble logging in or with the helpline being available for you, there’s a team for that. If you have questions about billing and insurance, there’s another team for that. Team management support groups, another team.

UCSF has got depth and strength, and other regional medical centers that have, I guess, the specialists, rather – a large specialist team in multiple myeloma – will, inevitably, have that layering of people. And I found that my treatment team grew from my one best friend or two best friends, my general practitioner here in the Bay Area, California – it grew to 10 people to include Dr. Shah, and then it grew to 25 people. Before I knew it, I had 25 best friends who wanted to know how I was doing and how my symptoms were relative to subsequent treatment stages.

And it took time for me to get to know them and for them to get to know me, but that investment of time and effort to, again, be part of the team and be part of the equation and processes was an important part of just getting through the clinical trial efficiently and effectively and then just being ready for the next steps of, again, prospectively, full remission, relapse, refractory, and just a whole variety of outcomes that have yet to play out over the years and decades to come.

So, with that in mind, I just wanted to move on to a couple of questions that have come up from different participants at the Patient Power website. The copays for multiple myeloma drugs can be very expensive. Any advice on how to deal with that, or are there programs that can help?

Dr. Nina Shah:

Yeah, this is a really important question. I’ve frequently noticed this, especially in my Medicare population, particularly with oral chemotherapy, for example, lenalidomide. There are patient assistance programs, which are company-specific, and you can ask the company directly. They usually have a hotline, or you can ask, at your particular oncologist office, if they have a connection with a local area rep who can put you in contact with that helpline. This is a frustrating part, and what I’ve been trying to do is, when I meet with a lot of these representatives, I try to take your complaint about this to them directly and say, “Look, my patients are not gonna get your drugs if it’s not affordable.” And ultimately, that means that that drug company needs to work with all the insurance companies, including Medicare drug coverage, to supply this for patients. So, that’s what I can do on my end. And then, from your end, really working with the patient assistance programs. They do exist, but they’re a pain. They’re one more thing you have to do, which it’s hard for us to tell you, but we also want you to get the drug.

John:

Second question comes from Jefferey. It’s been two years since I was diagnosed with smoldering myeloma. My oncologist said that my numbers are not at a point for treatment today, but he has me doing bloodwork and bone x-rays every three months. This is causing me a lot of stress and mental anxiety. Is this a normal situation to be diagnosed and not doing anything about it? Any advice on how to cope with the stress and anxiety of waiting to be treated? What do you think, Dr. Shah?

Dr. Nina Shah:

Yeah, this is a really important question because there are a lot of patients out there who are diagnosed with smoldering multiple myeloma, or what we call asymptomatic myeloma, meaning that you have some plasma cells in your bone marrow, and you also have some evidence of M-protein or light chain, but you don’t have enough to require treatment, and the first thing I can say is there’s reason for that; because, as of now, we don’t have any data to show that treating you early before you develop symptoms is going to prolong your life.

That being said, there are some clinical trials that look at patients, what we call high-risk smoldering myeloma, to be enrolled in clinical trials of treatment versus not. I have mixed feelings on this because I’m one of those people that likes to preserve quality of life as much as possible, and most of my smoldering myeloma patients are full-time at work, not doing anything else. And so, what I always tell these patients – and I don’t wanna put this on every other physician out there, but I always say, “Let me do the worrying. You come in for your labs. You come in for your assessment.”

I usually do a bone marrow and either PET or MRI every year because that can change decisions. But I always tell my patients, get the labs, walk out of the lab building – out of your Quest or whatever it is – and let me do the worrying because there is nothing you can change, and I want it to be something that’s just a part of monitoring but not anxiety. In response to the question, it is totally normal to get that frequency of checking, and that’s really on us, as a partnership, to make sure that you feel comfortable with that frequency, but also that your provider is checking up on the labs when they come to the boss.

John:

What do you think are some of the mistakes that a newly diagnosed patient can make about their treatment or about their recovery?

Dr. Nina Shah:

Well, that’s a hard question because I think the patient, really, can never make a mistake because, ultimately, it’s about what the patient wants. But I will say that, a lot of times, patients think that they can not get treatment for symptomatic myeloma. For example, they have a new plasmacytoma on their shoulder or have broken a bone or a new anemia. And they’ll say, “Well, I just wanna use natural means to get rid of this.”

And I don’t have any problems with natural medicine or anything like that, but my education and experience has taught me that it’s not gonna be enough to stave off this really aggressive malignancy, and the last thing I want someone to do is to break a bone in their spine and then become paralyzed. So, I always say, “I’m happy to work with you and whoever your naturopath is or whoever your other physician is, but I truly feel that you need treatment, and then I want that to get through to you.” And that’s just my experience. But again, I always do try to respect what the patient’s wishes are.

John:

Another participant on the Patient Power website asks, “Is there a resource for local oncologists to reach out for information and collaboration about multiple myeloma?”

Dr. Nina Shah:

Yeah. Now, depending on where you are, you’re probably in touch with the local, maybe, academic hospital, and it’s hard to know – just depends on where you are in the U.S. But I really do like going to the Multiple Myeloma Research Foundation website because they have information there, and you can actually contact them, and they would be able to put you in touch with someone who might be a myeloma expert. I mean, you already said it. You can even look on Twitter and follow myeloma feeds and actually do a direct message to any one of us. Usually, one of us gets the message, and we’ll respond back.

Most everyone has a way to contact through the American Society of Hematology. That’s another way that physicians who are hematologists contact each other. If you really want to get your doctor to somebody who’s a myeloma expert, it should not take more than three tries of contacting this person or that person to be able to get through. My email is public, and other people’s are as well, and I usually respond. So, it’s more a question of making that initial effort. Okay, I’m gonna go through a web search and find this person’s e-mail and send them a message. But we are always willing and happy to answer these questions because, a lot of times, these patients may wanna come for a second opinion or consider a clinical trial or just need some advice, and that’s totally fine.

John:

Just to add to that, Dr. Shah, one of the things that I’ve noted from MMRF and other organizations is, periodically, there are patient summits that are offered all over the country, and they’re generally – in my experience so far, is that there are at least 500 to 3,000-person beds. They’re quite large, and it may be, I guess, comforting, to a degree, to meet and be met by others that have the same concerns about multiple myeloma as a patient or a caregiver and see that there is some strength in numbers. Do you have any closing thoughts on our talk today?

Dr. Nina Shah:

Yeah. I really like the point you said about meeting other people with this disease and other caregivers. We’re fortunate enough, in the Bay Area, to have a patient-centered support group, and I really like doing programs with them.

And what I’ve noticed about all the patients who attend something like that, even if it’s a cancer, in general, support group, is that they can share stories and sort of talk. I mean, it’s important. It’s a really huge thing you’re going through, and you need to talk to other people about it and people who understand. So, it’s great to get a support group even if it’s just cancer, even better if you have a myeloma support group. And online, there are support groups as well. So, whatever you can do to make yourself feel not alone will also add to your empowerment.

John:

Well, thank you, Dr. Shah. It’s been great catching up with you today. Thank you for participating in this event, and that is it for us. Thanks for joining us.


Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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

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

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

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

See More From The Pro-Active Myeloma Patient Toolkit

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What Does Remission Mean in Myeloma?

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

Find Your Voice Myeloma Resource Guide

Transcript:

Beth Faiman:

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

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