Tag Archive for: imaging

Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care from Patient Empowerment Network on Vimeo.

This animated video reviews the types of myeloma, essential testing following a myeloma diagnosis, and advice for working with your healthcare team for the best overall care.

See More from Collaborate Myeloma

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Collaborate | Being an Empowered Myeloma Patient

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

The Benefits of Shared Decision-Making for Myeloma Care


Transcript:

Bianca: 

Welcome back! I’m Bianca, and I’m a nurse. I specialize in caring for people with myeloma. And this is Suzanne, a myeloma patient advocate.  

In this video, we are going to learn more about diagnosis and testing, and how test results may impact myeloma care. 

Suzanne: 

That’s right, Bianca. Most patients want to–and should– understand their diagnosis. Let’s start with the basics. Can you explain the different types of myeloma? 

Bianca: 

You bet. Let’s start with MGUS, which stands for monoclonal gammopathy of undetermined significance. MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine. This type of myeloma doesn’t require treatment but should be monitored regularly. 

Smoldering myeloma is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly. 

And then there’s multiple myeloma, which is a buildup of plasma cells in the bone marrow that crowds out healthy cells, and causes symptoms and other problems in the body. Multiple myeloma requires treatment, and there are a number of approaches available. 

Suzanne: 

Thanks for explaining the difference. When I was initially diagnosed, I underwent a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.  

Bianca: 

Those are the standard tests when diagnosing myeloma. Your healthcare team should also order a more in-depth FISH test, which comes from the bone marrow biopsy sample, and FISH  testing can provide a better understanding of your disease. This is important because the results may impact your treatment options. 

Suzanne: 

Right—and it’s important ensure that you have had all necessary testing including this more in-depth test. You should also review the lab results with your healthcare team. You can ask questions like:  

  • Am I high-risk or low-risk?  
  • What do the results mean? 
  • How will the results impact my options for therapy? 
  • And, how often should testing be repeated? 

Bianca: 

That’s good advice, Suzanne. All of the information gathered during your diagnosis, or following a relapse, should be considered as well as your overall health when deciding on a care plan.   

And, as you’ve modeled, working with your healthcare team to make therapy choices is essential. This is a process called shared decision-making, which basically means that patients and their providers collaborate on healthcare decisions. Participating in this process encourages patients to engage in their care, helping them to feel more confident about the approaches they choose. 

Suzanne: 

That’s right! Working WITH my healthcare team makes me feel included and brings peace of mind when considering my options.  

Bianca: 

That’s the way it should be—you should always be at the center of your care. So, when considering a plan with your healthcare team, here are a few key steps: 

  • Start by understanding your diagnosis. 
  • Develop a good relationship with your healthcare team so that you can participate in your care. 
  • Ensure you have had all essential testing, including in-depth testing. 
  • Discuss the tests results with your doctor and ask questions about what they mean. 
  • And, as always, do research on your own and confirm what you’ve learned with your healthcare team. 

Suzanne: 

And don’t forget to visit powerfulpatients.org/myeloma to view more videos with Bianca and me. Thank you for joining us!  

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview from Patient Empowerment Network on Vimeo.

What should patients know about myeloma treatment and testing? Dr. Sikander Ailawadhi shares an overview of myeloma testing and discusses the importance of getting key questions answered by your healthcare team. 

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

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Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

What sort of tests should be done following a myeloma diagnosis?   

Dr. Ailawadhi:

Generally, when myeloma is suspected, we need to know what the basic blood counts are, something that is called a CBC, complete blood count. We’re looking for anemia, low white blood cells, low clotting cells, or platelets. We want to do serum chemistries or blood chemistries, looking for kidney function, liver function, electrolytes, calcium, et cetera.  

Then, we want to do some kind of an imaging of the body. Generally, routine X-rays are no longer done, and the most preferred is a PET-CT scan, a PET scan. We do PET-MRIs frequently. So, there are different tests available, but you want a good test to know what’s the state of bones and presence of any lesions or tumors. And then, the important question comes is doing a bone marrow biopsy.   

The reason for doing a bone marrow biopsy, and even if somebody has had a biopsy done from a compression fracture, et cetera, that diagnosed myeloma, a bone marrow biopsy still should be done. It gives us a lot of pieces of information.  

It tells us what is the percentage of plasma cells in the bone marrow. So, what is the disease burden we are starting with? Secondly, that bone marrow biopsy specimen can be sent for what is called a FISH testing, which is fluorescent in situ hybridization.  

It is basically looking for any mutations in the cancer cells. Based on those mutations, myeloma can be classified into standard or high-risk myeloma. And sometimes our treatment choices are differed based on whether somebody is standard or high-risk. So, blood work, basic counts – and I skipped over one of the things. Right after chemistries, I wanted to add also are myeloma markers.  

There are typically three lab tests of myeloma markers. One is called protein electrophoresis. It can be run in blood and urine. Ideally, it should be run in both. One is immunoglobulin levels, which gives us the level of IgG, IgA, IgM, et cetera. And the third one is serum-free light chains, which is kappa and lambda light chains. Neither one – none of these tests eliminates the needs for the other.

So, everybody, in the beginning, should have complete blood count, blood chemistries, SPEP or serum protein electrophoresis, urine electrophoresis, immunoglobulins, light chains, imaging, and then a bone marrow. This completes the workup. Then, based on that, the treatment can be determined.  

 Katherine:

Well, you mentioned lab work. How often should tests and blood work be done?   

Dr. Ailawadhi:

Good question. Very, very important question because we see very frequently that the patients come in, they’re getting treatment somewhere, and every single time the patient steps foot in the door of that institution or wherever they’re going, they got a blood draw. That’s how they start their day. It’s needed more frequently in the beginning but needed less frequently later on.

Generally, the myeloma markers, those protein electrophoresis, immunoglobulins, light chains, they are frequently done just about every month. Generally, in myeloma, one month, three to four weeks is one cycle. So, at the beginning of every cycle, you want to know how good your response was. So, the myeloma markers once a month.  

The blood counts and chemistries in the first month, first one to two months, they can be done every other week or so just to make sure counts are fine, no need for transfusions, kidney/liver is okay, et cetera. But after the first couple of months, when the body is used to the drugs when the patient is settled with the treatment, frankly, once-a-month labs are good enough. We don’t really need labs on every single treatment visit. Because the other thing that happens is some of these drugs can lower the blood counts normally during treatment, but they have a rest period at the end of the cycle when the counts recover.   

So, if somebody does labs in the middle of the cycle when the counts are expected to be down but not an issue, treatments are stopped, and growth factors are given. And this is done, but that is not really necessary. So, first couple of one to two cycles, maybe every other week to make sure counts are okay. Myeloma markers monthly, but after the first couple of months when things are settled, once a month should be sufficient. 

Katherine:

Okay. What questions should patients be asking about their test results?    

Dr. Ailawadhi:

Yeah. Very, very, very important. In fact, whenever I’m speaking in a patient caregiver symposium or anything, I spend a lot of time on these test results because frankly, a lot of times it sounds like jargon and the people talk about, “Oh, my ratio is going up,” or the doctor is saying, “Hey, your immunoglobulins are normal. You’re in remission.” But so, I think the patients need to understand and ask from their doctors, “What is my marker of the disease that you will be following?” And I’ll tell you that immunoglobulins, that IgG or IgA level, is nearly never the marker. It’s either M spike or light chains, generally one of those.  

So, the patients need to understand what is their marker. They also need to know what did their bone marrow show. What was the percentage and what was the FISH result or cytogenetic result? I think other than the tests, I will also add the patients need to ask their doctor a lot of these questions that you’re asking me. How frequently are the labs going to be done? Why is it important?  Why was a certain treatment selected? What is the expected outcome? What are the chances that I can go into remission? How long does the intense treatment stay?  

When does it go to some kind of a maintenance? Et cetera, et cetera. Basically, you want to understand everything about the disease and its treatment. It is overwhelming. This is a lot of information. A lot of times the patients may say, “Well, I got a diagnosis. I got a treatment started. I just need to move on.”  That’s right. But once you spend all that time initially understanding your diagnosis and the treatment and the disease, it’ll make the rest of the journey much, much easier.  

What Key Factors Impact Prostate Cancer Treatment Decisions?

What Key Factors Impact Prostate Cancer Treatment Decisions? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Channing Paller reviews key variables that impact prostate cancer treatment decisions and explains immunotherapy, PARP inhibitors, and personalized medicine.

Channing Paller, MD is the Director of Prostate Cancer Clinical Research at Johns Hopkins Medicine. Learn more about this Dr. Paller.

Download Resource Guide

See More From INSIST! Prostate Cancer

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Why Prostate Cancer Patients Should Consider Participating in a Clinical Trial


Transcript:

Katherine:

What are other options that are available now, for patients? 

Dr. Paller:

For curative intent, the main two treatment options are surgery, radiation. Many people for very localized disease are trying other therapies, such as cryotherapy, and more focal therapies. But really, for curative, the standard is surgery or radiation. And as it gets more advanced, circling back to advanced prostate cancer, we are learning that combination therapy is better. So, adding pills like abiraterone, adding systemic therapies, help patients do better.  

So, there’s a big, long list of therapies upfront that we use for metastatic hormone-sensitive prostate cancer. There’s abiraterone, there is apalutamide (Erleada), there’s enzalutamide, and now, darolutamide (Nubeqa). 

And in fact, in fit patients that can tolerate chemotherapy for metastatic high-volume prostate cancer patients, we always recommend triple therapy, either with abiraterone, docetaxel, and ADT, or with darolutamide, docetaxel, and ADT, and these patients really seem to do better for longer. The other thing I would add is the PEACE-1 trial, which looked at abiraterone and docetaxel, found that patients would do best by adding growth factor support. And so, that is recommended. 

The other thing I want to point out to patients is, I know we’re all eager to get started when we find out we have a diagnosis of metastatic prostate cancer, but sometimes, these therapies are quite tough on the system when you have a lot of cancer in your body, and my recommendation to everybody is, one thing at a time. 

So, start the hormone therapy and wait at least 30 days, and in fact, in the PEACE-1 trial, they waited 45 days, right? That allows the testosterone levels to fall, it allows you to adjust to the side effects of hormone deprivation therapy, and it allows your body to be ready for the next line of therapy. And you can add the ADT to second line, such as abiraterone or daro during that time, but not adding the chemo all at once, that really makes a difference. 

I find, unfortunately, when patients and their providers don’t follow those strict criteria, as they did in the trial, meaning they start chemo and abiraterone and ADT on day one, the levels of chemotherapy get higher in the bloodstream because testosterone regulates that, and we’ve published on that before. And they end up with terrible side effects from the chemotherapy, such as neutropenic fever, which means you end up in the hospital with a bloodstream infection and a fever, and more neuropathy, meaning numbness and tingling in your hands and feet. 

And so, I really caution people to spread those therapies out over the first 90 days, and you’ll do better in terms of side effects, and just as well in terms of overall survival. 

Katherine:

Where does hormonal therapy fit into the treatment options, and have there been any advances in hormonal therapy?  

Dr. Paller:

Yes. So, hormonal therapy is the mainstay of how we take care of prostate cancer patients, whether we do this with surgical castration, which is not done very often anymore, or we do it with an LHRH agonist, or we do it with an LHRH antagonist. So, that means that we can do it with medicines that block the signaling, but that tells your body to produce testosterone in various ways. What’s really neat is we’ve made advances, that there are now oral options for some of these therapies. 

In particular, there’s a new therapy called Orgovyx, or relugolix, that is an oral LHRH antagonist that locks testosterone and allows us to stop prostate cancer growth. In addition, there are a variety of LHRH agonists that can be given as subcutaneous shots. 

How Are Myeloma Patients in Remission Monitored?

How Are Myeloma Patients in Remission Monitored? from Patient Empowerment Network on Vimeo.

How often should testing be administered when myeloma is in remission? Dr. Brandon Blue discusses how patients in remission are monitored and when a bone marrow biopsy may be required.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More From INSIST! Myeloma

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Stem Cell Transplants for Myeloma: An Update

Stem Cell Transplants for Myeloma: An Update

Should You Push for a Stronger Myeloma Treatment at Relapse

Should You Push for a Stronger Myeloma Treatment at Relapse?

Questions and Considerations When Making Myeloma Treatment Decisions

Questions and Considerations When Making Myeloma Treatment Decisions


Transcript:

Katherine Banwell:

Dr. Blue, how often should bone marrow biopsy be performed in the years following a stem cell transplant?  

Dr. Brandon Blue:

So, typically following stem cell transplant patients are kind of switched to what we call maintenance therapy.  

Meaning that the disease is typically under control after transplant, and our job right now is to kind of put the lid on the disease and keep that lid on so that the disease doesn’t kind of bubble over. And likely, people are on that maintenance therapy for three, four, sometimes even five years, or more. And so, sometimes when the disease is very stagnant or very stable, and people are on maintenance therapy, there may not be a need for multiple repeated bone marrow biopsies. 

Because the disease may just be in a kind of dormant or remission stage. However, at the first sign that we see that things are changing, we see that unfortunately the disease may be starting to relapse, or maybe even there’s a new pain, or things happening that just need further investigation, I think a bone marrow biopsy would be very warranted at that time.  

Katherine Banwell:

Okay. So, when patients are in a kind of remission stage you just monitor them. Do you continue to do bloodwork, and test their urine, and so on?  

Dr. Brandon Blue:

Blood, urine, imaging. Blood, urine imaging. 

Katherine Banwell:

Yeah. Blood, urine, imaging.   

Dr. Brandon Blue:

Yup. Those would be the best ways to follow it. Of course, the gold standard would be a bone marrow biopsy, but typically what happens is that the blood, the urine, and the imaging typically reflect what’s happening in the bone marrow. It’d be sometimes very unlikely for a patient’s bloodwork to be normal, but then the bone marrow to be ridden with cancer. Typically, it doesn’t work that way. There are some unique circumstances where bone marrow biopsies are needed in people who have something called non-secretory myeloma, but that’s a very small percentage. 

What Testing Is Appropriate for People With Smoldering Myeloma?

What Testing Is Appropriate for People With Smoldering Myeloma? from Patient Empowerment Network on Vimeo.

How is smoldering myeloma monitored? Myeloma expert Dr. Brandon Blue explains why treatment is not necessary and the types of tests that are used to monitor this diagnosis.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More From INSIST! Myeloma

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How Are Myeloma Patients in Remission Monitored

Myeloma Combination Therapy _ What Patients Should Know

Myeloma Combination Therapy: What Patients Should Know

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Questions and Considerations When Making Myeloma Treatment Decisions


Transcript:

Katherine Banwell:

What testing and treatments are appropriate for smoldering myeloma? And first, could you define smoldering myeloma for us?  

Dr. Brandon Blue:

Yeah. So, one of the things that makes multiple myeloma kind of a very difficult disease is that it can attack people’s bones.  

When people have the smoldering myeloma, they have none of those bone disease. When people typically have multiple myeloma it can affect their kidneys, and actually cause low blood counts called anemia.  

When people have smoldering, they don’t have any of those classic features, however, they still may have a burden of cancer cells. Anywhere from 10 to 59 percent of plasma cells is really still considered this smoldering, or inactive cancer, but it’s still cancer. And so, we know that roughly in the first five years about 10 percent of those patients will go from this inactive smoldering stage to the active myeloma and required treatment. 

A lot of times we do observation for those patients to kind of make sure that they get the treatment when they need it. There is some studies to show that some people do get treatment during the smoldering stage, but for a lot of times observation is needing because sometimes it can be several years really before someone would need treatment. 

And a lot of times we try not to expose people to treatment if it’s really not necessary at the time.  

Katherine Banwell:

I see. So, it’s more of a watch and wait. 

Dr. Brandon Blue:

Exactly right. And sometimes you actually watch and wait, and then you keep watching, and waiting, and sometimes people never develop the active disease. And so, especially in those patients, you would’ve exposed them to chemotherapy that they really never needed. And one thing that I always tell my patients is that it’s important to know that you have cancer cells, but it’s also important for us to follow it. We are here to help and support you, right? And having cancer in your body sometimes can be very anxiety-provoking. 

And so, for a lot of patients who are in that category, sometimes we offer them clinical trials that we have available to say, “Hey, this is something that we’re trying to explore and learn more about smoldering myeloma. And maybe this is something that may benefit you.” 

Katherine Banwell:

Yeah. Can a patient with smoldering myeloma be monitored through blood work? Is that something you would do?  

Dr. Brandon Blue:

Yeah. So, typically what we try to do because the disease is so multifaceted, meaning that myeloma is not the same for each person. So, the blood is a fantastic way of following the disease, and monitoring, however, we need to do a little bit more than that. We also like to collect urine because, again, multiple myeloma can affect people’s kidneys. And the good thing about urine is that we flush it down the toilet all the time, but there’s so much information that gets flushed down that we really can learn about the disease and learn about the person by following the urine over time. 

The next thing is that we can follow imaging because, again, multiple myeloma can affect people’s bones. Sometimes if you get aches, and pains, we don’t know if that’s the muscle, we don’t know if that’s a ligament, we don’t know if that’s the bone. Pain is such a subjective thing, so we need to follow people, and have them be monitored with imaging. So, I think that combination of blood, urine, and imaging would be the best thing to do. 

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer from Patient Empowerment Network on Vimeo.

What is lung cancer biomarker testing? Dr. Grace Dy defines both biomarker and molecular testing and explains how these test results are used in lung cancer patient care.

Dr. Grace Dy is Chief of Thoracic Oncology and Professor of Oncology in the Department of Medicine at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Grace Dy.

See More From INSIST! Lung Cancer

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Advances in Non-Small Cell Lung Cancer Testing

Advances in Non-Small Cell Lung Cancer Testing


Transcript:

Dr. Grace Dy:

My name is Grace Dy. I’m a thoracic medical oncologist at Roswell Park Comprehensive Cancer Center here in Buffalo, New York. 

Katherine Banwell:

Thank you for being with us today.  

Dr. Grace Dy:

Thank you for having me. 

Katherine Banwell:

What is biomarker testing, and is this the same as molecular testing for non-small cell lung cancer? 

Dr. Grace Dy:

That’s a very good question. So, let’s first maybe define what biomarker means. So, biomarker is an all-encompassing term relating to a measurement of a biological parameter. That’s what it means.  

So, you can actually have biomarker related to imaging. So, it’s not specific to a particular test. But what it’s trying to do is to guide doctors in making decisions. So, you can have, for example, a PET scan as a biomarker to indicate the effectiveness of therapy. 

So, it’s not specific to a test. So, it’s a broader scope. But in cancer, generally, it’s used interchangeably with molecular testing. And molecular testing is a more focused test on the genetics of the cancer.  

In some aspects, sometimes it also refers to testing for proteins, characteristics of different proteins in the cancer. Again, to help doctors generally define what might be a better treatment option that is personalized to the patient’s cancer. 

In some instances, the biomarker can also be what we call prognostic, meaning independent of what we do with the treatment, it may define to us how well a patient will survive or have their outcomes, whether they have treatment or not. 

So, those are maybe the nuances between a predictive versus a prognostic biomarker. But for all intents and purposes, the most common test that we use for lung cancer patients are what we call predictive biomarker testing. Molecular testing is one of the ones that we often commonly request to help us define treatment modalities, especially in non-small cell lung cancer. 

Tools for Accessing Quality Prostate Cancer Care

Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 

Niki: 

Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 

Anthony: 

And overcoming or addressing these barriers is the goal of health equity.  

Niki: 

Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 

Anthony: 

First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 

Niki: 

That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  

Anthony: 

Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 

Niki: 

Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 

Anthony: 

Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 

Niki: 

That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 

Anthony: 

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

Living With Prostate Cancer

Living With Prostate Cancer from Patient Empowerment Network on Vimeo.

What follow-up care is important for people with prostate cancer? This animated video discusses support and tools for managing life with prostate cancer.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Niki: 

Hi! I’m Niki and I’m a nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer. 

Anthony: 

Thanks for joining us!  

In this video, we’re going to discuss tools for managing life with prostate cancer.  

Niki:  

Living with prostate cancer means that patients will be monitored for signs that the cancer may be progressing, and assess if it is time to treat the cancer or consider a different treatment plan.   

Anthony:  

But for all patients, an important part of living with prostate cancer is follow-up care. This may include:  

  • Disease monitoring and managing symptoms and side effects, 
  • As well as emotional support. 
  • And, in some cases, creating a survivorship plan with your team.  

Niki:  

Let’s start with disease monitoring: This may include regular exams and testing to keep an eye on your disease progression or recovery. And your individual situation and risk will determine the frequency of your appointments. 

Anthony: 

And for patients like me who have had treatment, managing short and long-term side effects is an essential part of living with prostate cancer.  

One issue that can be challenging for some prostate cancer patients is the impact of treatment on a patient’s sexual function and self-image.  

Niki: 

That’s right, Anthony. It’s important to note that there ARE options that may help manage certain side effects, but you have to talk about them with your healthcare team. While bringing up sexual side effects or bladder control issues to your provider may be difficult, it’s the only way your team can assist you.  

Anthony: 

In my case, I found it easier to communicate my sexual issues in writing, using the patient portal. Plus – don’t forget that care partners can be a resource to help bring up difficult topics. 

Niki: 

Exactly – utilize your resources and communicate in a way that you feel most comfortable! 

And, as we mentioned, there can also be emotional side effects for men living with prostate cancer. Patients may feel stressed about their diagnosis or anxious about their cancer returning or progressing. Working with a health professional like a social worker, counselor, therapist, or psychologist may help reduce anxiety and worry.  

Anthony: 

Right – the other approach that really helped me emotionally was participating in a support group. 

Support groups allow men to meet and interact with others who are living with prostate cancer and provide a platform to share experiences and information. In a support group setting, it may be easier for men to share details that they don’t necessarily want to share with loved ones.  

Niki: 

That’s a great point, Anthony. Studies show that participating in a support group can help cancer patients cope with anxiety and depression 

Anthony: 

It certainly encourages me to know that other men are facing similar challenges. While my support group meets in person, there are online options for people who prefer to connect in a virtual setting.   

Niki: 

But as much as it can be reassuring, the support group format isn’t for everyone. Talk to your social worker or counselor about additional support options to find an approach that feels most comfortable to you.  

Anthony: 

Now that we’ve walked through disease monitoring and resources for emotional support, let’s talk about survivorship. Niki, what is a survivorship care plan?  

Niki: 

Sure. A survivorship care plan organizes your follow-up care. It may include: 

  • Information about the treatment you received. 
  • A follow-up schedule for exams and tests. 
  • A list of potential symptoms and side effects. 
  • And lifestyle recommendations to establish and to maintain healthy habits.  

Your healthcare team, along with a care partner, can help you develop and stick to a plan. 

Anthony: 

That’s great advice, Niki. Now that we have learned some tips for living with prostate cancer, what can you do to participate in your follow-up care?  

Niki: 

  • Make sure to schedule and keep regular visits with your team – including your general practitioner – so that all aspects of your health can be monitored.  
  • Report any new symptoms that you experience – no matter how small. 
  • Next, don’t hesitate to speak up about lingering side effects – including bladder and sexual side effects – so your team can identify solutions. 
  • And ask for emotional support and resources. 
  • Finally, if it’s right for you, talk with your doctor about a survivorship care plan. 

Anthony: 

Thanks for joining us! Be sure to download the guide that goes with this video to access the information we discussed.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials from Patient Empowerment Network on Vimeo.

What do you need to know about prostate cancer clinical trials? This animated video reviews the clinical trial process and provides questions to ask your healthcare team about trial participation.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi, I’m Anthony, and I’m living with advanced prostate cancer. And this is my nurse practitioner, Niki.  

Niki: 

Thanks for joining us! 

Without medical research, advances in prostate cancer treatment can’t move forward. Throughout this video, Anthony and I are going to discuss a key part of research: clinical trials. We’ll review what they are and how they work.  

Anthony: 

Niki, what is a clinical trial exactly? 

Niki: 

Excellent question, Anthony. Clinical trials are research studies in people who have a specific condition, or are healthy volunteers, to help find new ways to treat diseases – like prostate cancer.  

Most clinical trials examine the safety and efficacy of medicines, vaccines, and other medical treatments. 

And clinical trials are the main path for cancer treatments to be approved. The U.S. Food and Drug Administration – also known as the FDA – requires that all new medicines and treatments go through the clinical trial process before they are approved. 

So, why would someone consider participating in a trial? Some people choose to participate to access a potential new medicine or treatment that’s not yet approved to see if it helps their condition. And some people want to help move research forward to help others with the same condition – while other people participate for both reasons. 

Anthony: 

That’s right – advancing research through participation is an important path to new options for treating prostate cancer.   

So, Niki – can you explain how clinical trials are designed to answer key questions? 

Niki: 

Yes, of course. Most importantly, each clinical trial has a protocol, which is a document that sets guidelines that define and outline the activities of the clinical trial as well as who may be eligible to participate. 

The early phase trials determine the safety of the treatment, and the latter phases typically examine if the potential therapy is effective. 

All along the way, the study clinic staff  – including nurses, researchers, and study doctors  –check clinical trial participants regularly to monitor for any safety concerns.  

Anthony: 

But to be successful, clinical trials require people to volunteer. And people interested in participating will have to meet the trial criteria to participate, correct? 

Niki: 

Yes, that’s correct, and this can include things like a person’s age, disease stage, prior treatments, and overall health. Remember that everyone’s situation is unique. 

Anthony: 

And people often have misconceptions about clinical trials that prevent them from considering participation. Let’s run through a few common concerns. 

For instance, some people worry that they will receive placebowhich is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 

Niki:  

A cancer patient would never receive only the placebo without the current standard-of-care and will always be told that the trial will contain a placebo in advance of their participation. 

Anthony: 

OK, that makes sense. Some people also wonder about the risks and safety of a clinical trial.  Niki, can you share some information about this?  

Niki:  

Great question. Most importantly, research must meet ethical standards to ensure that participants are protected. There is a strict screening and testing process that occurs before a person can participate.  

And, clinical trials are voluntary  – participants have the right to leave the trial at any time.  

Additionally, there is an informed consent process, which ensures that people are fully informed about all potential risks and benefits and helps people understand their rights before taking part.  

Anthony: 

Ok. Thank you for clearing that up. Niki, what about the misconception that clinical trials are just a last-resort treatment option?  

Niki: 

They are not just a last-resort option at all, Anthony. No matter when a patient was diagnosed with prostate cancer, or where they are in their care, clinical trial participation may be an option.  

Anthony: 

So, if someone is interested in participating in a clinical trial or learning more about clinical research – where do they start?  

Niki:  

Your doctor is the best source of information. You can ask your doctor: 

  • What trials are available to me? 
  • Is there a clinical trial that you would recommend for me? Why? 
  • What are the possible risks and advantages of participating in this clinical trial? 
  • Are there costs associated with the trial, and will my health insurance help cover costs? And if not, is there financial assistance available?  
  • Where is the trial being conducted? Is there a clinical trial available to me in my local community? If the trial isn’t nearby or convenient, is there transportation and/or housing assistance? 
  • Finally, if you want to learn more about ongoing prostate cancer research and clinical trials, ask your doctor for a list of credible resources. 

Anthony:  

Be sure to download the guide that accompanies this video to access a list of these questions and to help you review what you learned. 

Niki: 

Thanks for joining us! And visit powerfulpatients.org/pc to access more videos with Anthony and me. 

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

Living With Prostate Cancer

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Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Niki: 

Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   

Anthony: 

Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  

Niki: 

Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 

Anthony: 

And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 

Niki: 

Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 

Anthony: 

Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

How Are Patients on Myeloma Maintenance Therapy Monitored?

How Are Patients on Myeloma Maintenance Therapy Monitored? from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Omar Nadeem explains how a follow-up care and monitoring plan for patients on maintenance therapy is determined.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

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How Is Relapsed or Refractory Myeloma Managed?


Transcript:

Katherine Banwell:

Dr. Nadeem, many patients are on maintenance therapy following active treatment. So, how is a patient on maintenance therapy monitored? 

Dr. Omar Nadeem:

Yes, so, majority of the time just with blood work. We don’t necessarily need to do a lot of bone marrow biopsies and PET scans for a majority of patients that are on maintenance therapy unless we’re either worried about their blood markers or some symptoms. Generally speaking, any time – it depends on what maintenance therapy they’re on, of course. If they’re just on lenalidomide (Revlimid), which is the most commonly used maintenance therapy, a lot of times we check in with them every one to three months. 

Depending on how their disease status is and how they’ve been doing and whether there’s any side effects that we need to worry about. So, they still have to see their doctors, still have to get the blood work. Usually you can get away with having it done no more than once a month or so, unless they are on other medications along with Revlimid, where we then have to check in with them a little bit more frequently. 

And some of that changes, so patients can be on maintenance therapy for five plus years, and we get a very good sense of how they are doing and kind of how their disease is doing, and we can kind of be a moving target in terms of the frequency of the follow-ups. 

What Are Currently Available Myeloma Treatments?

What Are Currently Available Myeloma Treatments? from Patient Empowerment Network on Vimeo.

Dr. Omar Nadeem reviews myeloma treatment classes, including immunomodulatory therapies, proteasome inhibitors, and monoclonal antibodies. Dr. Nadeem also discusses how combining these therapies has boosted the effectiveness of myeloma treatment.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

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How Is Research Advancing Myeloma Treatment and Care?


Transcript:

Katherine Banwell:

Dr. Nadeem, what types of myeloma treatment classes are currently available?  

Dr. Omar Nadeem:

Yes. So, we started over three decades ago plus with just having basically steroid medications and some older chemotherapy drugs that weren’t very targeted at all, and that was basically all we had up until about a little over 20 years ago, where immunomodulatory drugs were first discovered to be effective in multiple myeloma, and that included thalidomide (Contergan or Thalomid) and now a commonly used agent called lenalidomide, or Revlimid.  

After that, we had a next class of medications approved called proteasome inhibitors that work differently than the immunomodulatory drugs, and then we combined all of these therapies about a decade plus ago and showed that that was better than anything else that we were doing before that. So, combining the steroids with the immunomodulatory drugs and proteasome inhibitors became the standard of care. 

And then we had the next class of drugs approved in 2015 called monoclonal antibodies, and that’s the first time we have monoclonal antibodies approved for myeloma, and it first started in patients that had relapsed myeloma, and then they made it all the way up to front line therapy with a drug in particular called daratumumab (Darzalex).  

And now what we’re going is entering an era of combining all four of these therapies, just like we did 10 years ago with three drugs, and showing that combining four drugs is actually better than three. And the important thing there is that it’s not necessarily adding cumulative toxicity. These are targeted therapies; they all work differently, but they all work really well together. So, now combining these agents has allowed us to really treat the disease effectively and allow for patients to tolerate the therapies.  

And then over the last couple of years, we’ve now entered kind of the next renaissance in myeloma where you have immunotherapies, and these are sort of true immunotherapies, in some cases taking the patient’s own T cells and then genetically modifying them to recognize myeloma cells and putting them back into patients. This is called CAR T-cell therapy, and that’s now approved for patients with multiple myeloma.  

And that again, just like the previous drug, sits in patients that have – you know, at a space where patients have had multiple relapses. But we’re now studying that earlier and earlier, and that along with another class of drugs called bispecific antibodies that also use your T cells via a different mechanism. A lot of exciting things going on, and we keep adding to the available agents for this disease.  

How Is MGUS Monitored?

How Is MGUS Monitored? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Irene Ghobrial discusses how patients with monoclonal gammopathy of undetermined significance (MGUS) are monitored over time and shares an update on research being conducted to learn more about this myeloma precursor condition.

Dr. Irene Ghobrial is Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School. Learn more about Dr. Ghobrial.

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What Experts Are Learning About the Hereditary Risk of Myeloma


Transcript:

Katherine Banwell:

Dr. Ghobrial, how are people with MGUS monitored? 

Dr. Irene Ghobrial:

Yes, so how do we even diagnose them, right? It’s a big question because it’s incidentally found. Someone will go to their primary care doctor and have a little bit of a high protein or slight anemia, and it may not be related, and then their doctor will check for serum protein electrophoresis, and that’s pure luck. We want to take away luck from this equation. We want to take away chance from this equation. 

And we want to start screening people who are at risk, and we are doing that with the PROMISE study. It’s online available to everyone nationwide, international now, where you can sign up on promisestudy.org and try to ask the question that we do for you research level, the serum protein electrophoresis, and a new test called mass spectrometry that is much more sensitive than SPEP to find it. 

Now, once we find MGUS, we want to know what is my own personal risk of progressing to myeloma? Because I could be 30 years old with MGUS, and likely I will progress to myeloma in the next 10 years, 20 years, and by the time I’m age 60, I would have been diagnosed with myeloma. Just a true case in many, many people. If people are diagnosed today with myeloma, they are going to their doctor because they had back pain or anemia, and they are diagnosed with myeloma. In almost all of the cases, they would have had MGUS and smoldering, but they didn’t know about it three years ago, four years ago because they never got tested for it. 

So, we want to change that completely and become proactive rather than being reactive and waiting for symptoms to happen. Once you have MGUS or smoldering, because we don’t know, we start looking for all of the things to help us identify your risk of progression. So, we look at the height of your M-spike. Is it small or big? And then we in many cases say okay, maybe you need a bone marrow biopsy if your M-spike is a little bit on the higher side because we don’t want to miss smoldering myeloma, which will change the prognosis. 

And then we start looking at do you have anemia? Do you have kidney failure? Do you have any of the other things that may predict that you may be actually going into myeloma? 

We also look at it more as a movie rather than as a snapshot, rather than a picture. If your M-spike is changing or your light chain is changing every three months, every six months, that’s an indicator that the cancer cells are doing something. They’re working in there and growing, and that’s why they’re increasing the M-spike and the light chain. 

And that evolving number is actually a very big predictor of telling us that there is a risk of progressing. Those are all clinical markers that we can do. When we look at the FISH, which we talked about, we can tell the certain markers are chromosomal changes that tell you that those cancer cells want to grow a little bit faster. So, 1q abnormality, 4;14, 14;16, 17p, all of those have been shown that when you have them, the cancer cells are not just sitting around and doing nothing. They’re actually starting to grow, and we want to catch them and understand what is the biology of the disease rather than just how many cancer cells you have. 

We do a lot of research level, and potentially now we’re going to give them back to the patients as clinical level, where we can give you more information about that prediction of your risk of progression. One of my colleagues calls it predicting the hurricane. We know that the hurricane will happen, and it’s a question of how precise could you be? We’re the Weather Channel men here.  

And we could be very precise and tell you it’s going to hit Miami at 2:00 in the afternoon tomorrow, and you could be prepared for it and get out of there. Or, you could be completely unprepared because we were not very accurate in our prediction and tell you it may hit the whole East Coast in the next two weeks. That’s not accuracy. So, we want to be more accurate in our prediction of myeloma because one person will never develop myeloma and can go have fun and enjoy life and not be worried and anxious about their risk, and another person we might say let’s watch you more carefully, or let’s think of interception preventing things. 

So, we do things called next-generation sequencing, taking all of those small numbers of cancer cells, even as little as single cells, and we can do whole genome sequencing and give back that information.  

We look at the immune cells and give back that information. We can do mass spectrometry. And with Betsy and Omar, we’re doing more and more tests so that when we have this prediction model, circulating tumor cells and so on, we can be more accurate in giving you that prediction. 

And help you make the next decision of are we watching carefully, are we preventing and intervening with behavior modification with other things? Are we intervening with therapy to intercept the disease? 

Katherine Banwell:

When are more in-depth tests necessary?  

Dr. Irene Ghobrial:

It depends, of course, on everything. I would probably say for every patient, it is a unique discussion. Some patients will tell me, “Let’s watch again in three to six months, and then I will do more testing,” and some patients want to know everything immediately. And we have those discussions with every patient, and we tailor our therapy as well as our diagnostics workup with every patient, depending on how much they want to know, how much their risk is, and how much they want to be involved in that discussion of how much to prevent myeloma. 

What Should Patients Know About Myeloma Testing?

What Should Patients Know About Myeloma Testing? from Patient Empowerment Network on Vimeo.

Testing following a myeloma diagnosis, or relapse, can impact care and treatment decisions. Drs. Betsy O’Donnell and Omar Nadeem provide an overview of essential myeloma testing, how the test results impact staging, and discuss recent advances in testing that have changed myeloma care.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

Dr. Betsy O’Donnell is Assistant Professor of Medicine at the Dana-Farber Cancer Institute specializing in Plasma Cell Disorders.

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Transcript:

Katherine Banwell:

Dr. O’Donnell, let’s move on to testing. What tests are necessary to help understand a patient’s specific disease? 

Dr. Betsy O’Donnell:

Absolutely. So, testing really does depend a little bit on the stage at which your disease is found. In general, we use a very specific blood test that lets us know that there is clonal protein present. Remember, plasma cells are a type of white blood cell, and they make something called antibodies. We use a test called a serum protein electrophoresis, which is a blood test – an SPEP, we call it – that can tell us the difference between normal, healthy antibody and clone that are made from the plasma cells that we see in MGUS, smoldering, and multiple myeloma. 

So, that’s a very important test, and sometimes your primary care doctor may notice that your total protein is elevated and send that test. 

Or there may be other things that tip them off. Perhaps the kidneys are not where they used to be. And so that test is sent, and that’s the first tip-off that someone might have a plasma cell disorder.  

Once we identify that there’s a plasma cell disorder, then that can set in place a workup, depending on the amount of clonal, monoclonal, M-protein that we see. So, sometimes that involves bone imaging. Historically that was a skeletal survey where we took lots of X-rays of your body. Now we have other tests we use. PET scans, CT scans, whole body MRIs. Sometimes it depends where you’re getting your treatment, and also it depends a little bit on your doctor’s degree of suspicion.  

Bone marrow biopsies are a procedure that we sometimes do. We use a thin, hollow needle to take out just a little piece of bone, about the size of an inchworm, and take some fluid with it. There’s actually fluid inside the bone marrow.  

And that can tell us, just as Dr. Ghobrial was defining the spectrum of plasma cell disorders, based on the percent of plasma cells, that can tell us where somebody belongs, which group they might belong in. So, we can use all of these tests to help give us a good sense of how much disease someone has and where in the spectrum or continuum a person is – MGUS, smoldering, or multiple myeloma. 

Katherine Banwell:

Okay, great. Thank you. I’m assuming these tests can help with understanding the stage of a patient’s myeloma. So, Dr. Nadeem, how is myeloma staged? 

Dr. Omar Nadeem:

Yes. So, myeloma is staged very differently than traditional cancers. Because this is a blood disease, we don’t really think about it like we may in other solid tumor cancers, where if it’s spread to multiple locations it’s IV, etcetera. That doesn’t apply to multiple myeloma. It’s actually staged out of three stages, and uses your blood work for the most part, some blood tests, to help identify which stage you are. Historically, that has correlated with how you may do. 

However, now we are learning that it’s far more to this story than just the blood work. So, we’re now using our bone marrow test results, particularly a test called a FISH test, which looks at the mutations that are present in examinable plasma cells, and if you have presence of some of these high-risk markers, that can actually either upstage you or downstage you if you don’t.  

So, we’re now I think becoming a little bit smarter how we think about this disease. It’s not just based on some blood test. We’re actually looking at the biology of some of these cells and the amount in the bone marrow. A lot of times patients ask, “Well, if I have 50 percent, 60 percent, or 80 percent involvement of the bone marrow, that actually does not have anything to do with staging, right?” So, I think it’s important to know that it’s actually a very unique staging system in multiple myeloma.  

Katherine Banwell:

Okay. Dr. O’Donnell, the landscape of myeloma has changed significantly in recent years. How have advances in testing changed care from myeloma patients?

Dr. Betsy O’Donnell:

So, I mean, the landscape has changed incredibly just in terms of the treatments we have, and I think that Dr. Nadeem was talking about something really important. 

In that when we look at FISH, which allows us to know the biology a little bit more, sometimes it helps us to decide kind of the risk that a patient is. We aren’t really at the point now where we do truly tailored therapies, like you see in some cancers, where we can detect specific mutations and pick drugs that align with that, but there are some that we do use. An example would be a drug called venetoclax (Venclexta), which works very well in patients who have a specific translocation, 11;14. 

So, there is some degree in which we use that FISH and those cytogenetics to help define our treatments, but also really we’re just fortunate that we have new and evolving therapies. We’ve changed how we treat myeloma in the up-front setting, and then at the back end we have an exploding field of immunotherapies, CAR-T cells, bispecific antibody that we’re now using that really have tremendously benefited our patients.  

Katherine Banwell:

Dr. O’Donnell, should all patients undergo in-depth testing, like cytogenetics?  

Dr. Betsy O’Donnell:

Yes, so if you’re doing a bone marrow biopsy, absolutely. The question in terms of who needs bone marrow biopsies, if someone has a low risk MGUS, those patients don’t necessarily require a bone marrow biopsy. It’s an invasive procedure, it’s an uncomfortable procedure. But if we’re doing a workup for multiple myeloma or smoldering myeloma that includes a bone marrow biopsy, then absolutely. 

Katherine Banwell:

Okay. Dr. Nadeem, what are you looking for with cytogenetics, and how might test results affect prognosis and treatment? 

Dr. Omar Nadeem:

Yes, so as mentioned earlier, there are some mutations that are considered high risk, I will say with the caveat that we don’t fully understand every single mutation yet or have identified every single mutation yet that may be high risk or low risk.  

But there are roughly five that we have identified that if a patient has one or two or several of those abnormalities, then their disease may behave a little bit more aggressively or may not respond as well to treatment. 

However, I think myeloma is just very complicated, so we look at a lot of these results in the beginning, both whether they may be good or bad. But I think, ultimately, we have to see how patients do, and that by far is the most important prognostic factor, in my opinion. So, if we look at some of these tools, including staging, some of the bone marrow results and cytogenetics, and try to give some prediction in terms of what we may see from this person’s disease, but ultimately the treatments that are so effective now really dictate the course for the majority of the patients. 

Katherine Banwell:

Are there specific tests that patients should ask for that could impact their care decisions? 

Dr. Omar Nadeem:

Yes, I think it depends on where they are in their disease state. So, if we’re looking at whether a patient has a precursor or plasma cell disorder or multiple myeloma, then they need all the testing to help us figure that out. 

So, that includes a bone marrow biopsy, the FISH testing as we just talked about. Advanced imaging like a PET scan or an MRI is now critical to identify patients that may have multiple myeloma versus those that have a precursor condition. So, we used to count on X-rays, as Dr. O’Donnell mentioned, but now really we do prefer one of those advanced imaging techniques for patients to undergo so that we can know. 

So, I think if they have basically those tests completed, that gives us most of the information that we need.