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What is Multiple Myeloma?

 

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

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

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Dr. Forsberg:             

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

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

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

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

 

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

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

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

See More From The Pro-Active Myeloma Patient Toolkit

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

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

How Targeted Therapy Works to Treat Myeloma

Transcript:

Charise:

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

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

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

Can Multiple Myeloma Be Cured?

Cancer, the abnormal growth of cells that multiply aggressively, has become one of the most prevalent diseases in today’s time. Diagnosis marks one of the most challenging periods in a person’s life. Although curable at early stages, the malignancy itself and the side-effects of treatment change the sufferer’s life at a significant scale.

Lymphocytes represent a major component of the body’s immune system. There are two types of lymphocytes, T lymphocytes and B lymphocytes, and both are crucial for fighting pathogens. When the B lymphocytes respond to a foreign body, they mature into plasma cells and memory cells. The plasma cell is responsible for making immunoglobulins, also known as antibodies, specific to that particular pathogen. These antibodies are the most important precursors in the defense mechanism of the body.

Multiple Myeloma is a type of cancer that seeds itself in these plasma cells that comprise the body’s major immune component. Plasma cells are the prime fighters against foreign organisms such as bacteria, virus, and fungi. Their tendency to engulf the opponent malfunctions and thus the immunity gets badly affected in Multiple Myeloma.

Causes and risk factors for Multiple Myeloma

Although the cause of multiple myeloma is not known, certain risk factors can contribute to it.

1. Toxic chemicals

Toxic, cancer-causing chemicals include benzene-infused products, products that contain sulfates and parabens, fire retardants, dioxins, polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). These all are said to be the highest cancer-causing agents. Out of all the chemicals, the ones containing chlorine are the ones that rank first in the production of cancer. Research has demonstrated the relationship between Multiple Myeloma and occupational exposure to six chlorinated solvents: 1,1,1-trichloroethane (TCA), trichloroethylene (TCE), methylene chloride (DCM), perchloroethylene (PCE), carbon tetrachloride, and chloroform, respectively. The occupational solvents here refer to those used in industries and factories.

The study concluded that among all six chlorinated agents, TCA showed the most elevated levels in leading to Multiple Myeloma.

2. Exposure to radiation

Workers at hospitals or diagnostic institutes are at higher risk of Multiple Myeloma. The radiation emitted is so powerful that it can surpass the skin, tissues, and muscles and can penetrate the bones to enter the bone marrow. A cohort study done in Mayak concluded that radiation emission greater than 1 Gy has significantly produced a higher risk of Lymphoma, Leukemia and Multiple Myeloma.

3. Viruses and immune disorders

Certain viruses have a correlation with Multiple Myeloma however, their association is still unknown. The viruses include: 

  • Simian Virus 40: This is one of the most intense polyomaviruses. It induces primary brain and bone cancers. It’s oncogenic (cancer-causing) property makes it the major culprit in causing multiple myeloma.
  • Several herpes viruses: A study was conducted to evaluate the role of human herpesvirus 8 in the pathogenesis of multiple myeloma. Patients with Multiple Myeloma were selected, and their samples of blood were drawn and sent to the lab for testing. The study concluded that the majority of the patients with Multiple Myeloma showed the evidence of human herpesvirus 8 in their blood samples.

Apart from the above viruses, first degree relatives of patients with Multiple Myeloma may develop MGUS (monoclonal gammopathy of undetermined significance). Hepatic viruses and HIV have also proven to be linked to Multiple Myeloma.

4. Hereditary

As with many other diseases, Multiple Myeloma tends to run in families who have already been affected by it. In some cases, Multiple Myeloma goes undiagnosed in a principle patient who transfers it to several offspring before discovering it.

5. Age

Patients aged 40 to 60 are at a higher risk to develop Multiple Myeloma.

6. Gender

Multiple Myeloma inflicts men more often than women. The cause is still unknown, but it could be due to hormonal differences. The male to female ratio is approximately 1.54 to 1.

7. Obesity

The role of obesity in contributing to Multiple Myeloma is unclear, but it might be due to insulin resistance and improper functioning of the hormones.

8. Race

African-Americans are twice as likely to have Multiple Myeloma than other races.

Signs and Symptoms of Multiple Myeloma

Based on Multiple Myeloma cases observed so far, following are the signs and symptoms of Multiple Myeloma:

  • Anemia,
  • Bleeding,
  • Nerve damage,
  • Skin lesions (rash),
  • Enlarged tongue (macroglossia),
  • Bone tenderness or pain (including back pain, weakness, fatigue, or tiredness),
  • Infections,
  • Pathologic bone fractures,
  • Back pain,
  • Spinal cord compression,
  • Kidney failure and/or other end-organ damage,
  • Loss of appetite and weight loss,
  • Constipation,
  • Hypercalcemia (high levels of calcium in the blood), and
  • Leg swelling.

Is Multiple Myeloma Hereditary?

Multiple Myeloma is not considered a hereditary disease. While in some cases Multiple Myeloma may occur due to genetic abnormality, there is no evidence that heredity plays any role in its development. Research has shown several factors may contribute towards the development of Multiple Myeloma. While researchers have indicated a very slight chance that disease could be transferred from parents to their offspring,  it’s very uncommon for more than one member of a family to have multiple myeloma.

Stages of Multiple Myeloma

Progressive stages of Multiple Myeloma have been recognized as follows:

  • Smoldering: Multiple myeloma with no symptoms.
  • Stage I: Starts with anemia, relatively small amount of M protein, no bone damage.
  • Stage II: Severe anemia and M protein as well as bone damage.
  • Stage III: Huge concentration of M protein, anemia, kidney damage.

Treatment of Multiple Myeloma

Treatment of Multiple Myeloma varies from patient to patient as cases become more and more complex. But some commonly treatment practices are explained briefly below:

  • Radiation therapy: Treats a small mass of affected cells. Radiation therapy normally targets the damaged part of bone (where cancerous cells have affected bone causing severe damage). Radiation therapy includes use of high energy rays to kill and stop growth of damaged cells stopping cancer growth. ERBT (external beam radiation therapy) is the most common type of therapy done.
  • Surgery: Involves removing or repairing of a body part. It can also fix the bones that have been damaged due to Multiple Myeloma.
  • Chemotherapy: Involves the use of drugs to kill the cancer cells. It kills the fast growing cells and in some cases it also damages bone marrow.
  • Stem Cell Transplant: Stem cell transplant replaces damaged cells in bone marrow with healthy plasma cells.
  • Order of Treatments: Different patients have been given different type of treatments based on type of areas affected. But the order of treatment remains the same. The initial treatment given is known as Primary Treatment, which includes the curing the cancer after the diagnosis. This treatment is also known as an Induction Treatment. the Second step is of Maintenance Treatment, which is done to keep cancer cells suppressed.

Survival chances of Multiple Myeloma patients

Statistics can be confusing because each Multiple Myeloma case varies from patient to patient.
Survival rates are measured from the first point of treatment, such as chemotherapy. In the past, patients often could not survive even beyond the first stage of treatment because when cancer cells grow fast they cause too much damage. Since 2000 the percent of patients living five years after diagnosis has been increasing considerably, for up to 50 percent of patients.

Can Multiple Myeloma Be Cured?

For decades, multiple myeloma was considered incurable and only disease control was the goal of treatment. This was due to the fact that there were very few treatment options available.

With the introduction of high-dose therapy, stem-cell transplants, and immunomodulatory drugs, the survival rate for myeloma patients doubled when compared to the 1990s when only chemotherapy was used.

When deciding if multiple myeloma can be cured we have to define some terms:

  • Partial remission – some, but not all signs and symptoms of myeloma have disappeared
  • Remission – a decrease in or disappearance of signs and symptoms of myeloma
  • Complete remission – all signs and symptoms of myeloma have disappeared

In an article for Myeloma Crowd, Jennifer Ahlstrom says, “Does remission mean a cure? In myeloma it typically does not. Though we love the word remission, we hesitate because myeloma is known to come back after some time.”

As a myeloma patient, you may always worry about the chance of recurrence, but there is hope that you can live with long treatment-free periods with excellent quality of life.


Sources:

Multiple Myeloma Bone Marrow

Is Multiple Myeloma Hereditary? What you need to know

Normalcy and Myeloma Remission

How Side Effects Can Be Managed in Myeloma

How Side Effects Can Be Managed in Myeloma from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.

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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Office Visit Planner – Myeloma

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Diagnosed with Myeloma? An Advocate’s Key Advice

Transcript:

Beth Faiman:

In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.

So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.

And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.

Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy,  they can feel comfortable to keep taking that with lesser chance of side effects.

And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.

The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.

Lab Tests in Myeloma: Key Results to Monitor

Lab Tests in Myeloma: Key Results to Monitor from Patient Empowerment Network on Vimeo.

Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.

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

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Transcript:

Beth Faiman:

Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.

You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.

But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.

Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.

The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.

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

 

Key Considerations When Choosing Myeloma Treatment: What’s Available? from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

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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Related Resources

    

The Benefits of Seeking a Second Opinion in Myeloma

Find Your Voice Myeloma Resource Guide

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Transcript:

Beth Faiman:

There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.

Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”

Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.

So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.

I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.

We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone

That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.

People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.

Diagnosed with Myeloma? Why to See a Specialist and What to Expect

 

Diagnosed with Myeloma? Why to See a Specialist and What to Expect from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, provides insight into her relationships with patients and the importance of seeking a second opinion with a specialist, even for just a single consultation.

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

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Transcript:

Beth Faiman:

So, my role in treating patients with multiple myeloma is very variable. So, I am a member of a treatment team. I have doctors that I work with, as well as nurses, other nurse practitioners, and social workers.

Sometimes I’m the first face that patients will see when they come to the cancer center. And hopefully, I’ll be fortunate to follow them along with their treatment trajectory.

Some of the other things that I do for patients who have multiple myeloma  — I’m involved in the diagnosis and management of their care. I am responsible for obtaining and reviewing their laboratory results at each visit, and if they have a certain symptom that needs to be controlled, I am oftentimes the one that they call or reach out to for some answers.

I think it’s very important for patients to meet with a myeloma specialist at least once. I understand there are a lot of barriers from transportation to finances to just not feeling comfortable with going to an outside institution. But working at a major center which focuses on multiple myeloma for the last 20-plus years, I can really see the value in even just getting an opinion.

So, one of the things I try to encourage is for patients to come and meet with us once or twice because not only are we educating the community physician, but we’re also partnering in their care. So, if they’re getting an injection once or twice weekly, we can see them every couple months, review their laboratory values, and they can get care closer to home. And so, there’s that partnership that forms and then you’re not only educating the patient, but you’re oftentimes educating the community physician or provider that might only see one or two myeloma patients in a year.

So, when patients come to me all they know is that they’re in a cancer center. Oftentimes they have to go on whatever information they’ve been told. I see consultations independently at the Cleveland Clinic so sometimes they’ve been told by their outside physician or nurse practitioner that they might have a blood cancer. Sometimes they fall into a category of patients that have what’s called MGUS or monoclonal gammopathy, so these individuals might not even need treatment forever.

Others might have what’s called smoldering myeloma, which is a different second level, and those patients might need treatment within two to five years. But for those that have been told they have multiple myeloma, there’s a myriad of emotions, and oftentimes I like to take time, share with them first what I know about their case, get time to know them on a one-on-one basis. What they like, what they don’t like, what they do for a living, their hobbies. Because you’re building a relationship.

You might be with that patient for many, many years. So, taking the time to let them know what I know about their case, finding out about themselves, and then pooling it all together with what we need to do now, with this information is oftentimes a good way to start a relationship with the patient and their caregiver.

Evolving Approaches to Myeloma Treatment: Staying Up-to-Date

 

Evolving Approaches to Myeloma Treatment: How to Stay Up-to-Date from Patient Empowerment Network on Vimeo.

Multiple myeloma research is fast-moving and showing promise. Dr. Peter Forsberg, a myeloma specialist, provides an overview of the changing treatment landscape and shares resources for keeping up with the latest news. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Dr. Peter Forsberg:

I think research in multiple myeloma remains a really active area. It’s been a major evolution over the past 20 years. Myeloma’s been one of the real success stories of modern oncology in terms of how much research has translated into improved options for patients.

But, many new things continue to evolve. It can be challenging to feel like you’re abreast of what’s going on. I think there are great resources for patients. Organizations like the International Myeloma Foundation, the Multiple Myeloma Research Foundation, or Leukemia and Lymphoma Society are good places for patients to start.

I also think that social media can be useful although those types of things can be a bit of a double-edged sword. I certainly find lots of things out via Twitter, and I think there’s a pretty active myeloma community in some of those areas, but you have to be a little bit careful about where you point your attention when you’re interacting with the internet. I think there can be lots of places where you might get less up to date or less thorough information and that can sometimes be concerning or challenging for patients So, I do think it is great that we have tools, but it is important to be thoughtful about how you approach them and trying to find good, reliable resources in that regard.

 I think there’s a lot of really exciting things on the horizon. That’s gonna include using tools that we have in better ways. I think we’re gonna be expanding our approaches to how we treat newly diagnosed patients. It looks like we’ll be starting to use four-drug regimens in patients with newly-diagnosed myeloma in the near future, hopefully with ever-improving results. We’re gonna be more cutting edge in terms of how we test and measure disease, using things like minimal-residual disease testing in different and expanded ways.

And then there’s a number of immunotherapeutic treatments especially that are looking very promising in relapsed myeloma.

That includes CAR T-Cell therapies, bispecific monoclonal antibodies, and antibody drug conjugates, all of them look like really promising approaches and really new things that hopefully in the not-distant future are gonna expand our toolbox for how we’re able to help maintain and improve life for patients with multiple myeloma.

What Does Remission Mean in Myeloma?

What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.

The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

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

 

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What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.