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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.

Living With Prostate Cancer

Related Resources:

What You Should Know About Clinical Trials

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

March 23, 2023/in PC Care Videos, PC Care: What You Need to Know, PC Newly Diagnosed, PC Programs, PC Videos ND, Prostate Cancer /by Kara Rayburn

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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.

Living With Prostate Cancer

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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

March 23, 2023/in PC Care Videos, PC Care: What You Need to Know, PC Newly Diagnosed, PC Programs, PC Videos ND, Prostate Cancer /by Kara Rayburn

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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.

What You Should Know About Clinical Trials

Related Resources:

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

March 23, 2023/in PC Care Videos, PC Care: What You Need to Know, PC Newly Diagnosed, PC Programs, PC Videos ND, Prostate Cancer /by Kara Rayburn

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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.

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Related Resources:

Tools for Accessing Quality Prostate Cancer Care

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 placebo – which 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

March 23, 2023/in PC Care Videos, PC Care: What You Need to Know, PC Newly Diagnosed, PC Programs, PC Videos ND, Prostate Cancer /by Kara Rayburn

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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.

What You Should Know About Clinical Trials

Related Resources:

Living With Prostate Cancer

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.

The Power of Shared-Decision Making: A New Revolution of Care

March 20, 2023/in Carly Flumer, PEN Blog /by Carly Flumer

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I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward.

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient.

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes.

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient!

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

How Can DLBCL Patients Benefit From Shared Decision-Making?

February 22, 2023/in Diffuse Large B-Cell Lymphoma (DLBCL), DLBCL Newly Diagnosed, DLBCL Programs, DLBCL Thrive, DLBCL Thrive Collab, DLBCL Videos ND /by Kara Rayburn

See More from Thrive DLBCL

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How Can DLBCL Patients Benefit From Shared Decision-Making? from Patient Empowerment Network on Vimeo.

What is shared decision-making, and how can it help diffuse large B-cell lymphoma (DLBCL) patients? Expert Dr. Amitkumar Mehta explains the process and shares key questions to ask about treatment and care.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

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DLBCL Treatment and Research Updates Patients Should Know About

Why Should DLBCL Patients Feel Empowered to Speak Up?

Transcript:

Katherine:

What is shared decision-making, and how does it work?

Dr. Mehta:

Shared decision-making has evolved over the last couple of decades.

And exactly as we were talking about the treatment, this is – I always share with my patient that we are on your side, right? We are with you. We are part of your journey. And, of course, for anyone, this could be a brand-new journey, right? So, each person is different. Each person’s preference is different, right? In that case, when I have the details of whether it’s lymphoma or treatment, they also have input. They might have read somewhere. They might have a family member who had gone through the chemotherapy, and they have preferences, let’s say.

So, when we sit down and discuss that time, they also have an input on that. Write appropriate questions, you know. What is my diagnosis? What stage it is, right, whether it’s high risk or low risk? What are the potential for cure, right? What kind of chemotherapy you’re looking at, whether I have more options in that like clinical trial, right?

Yes, you said you were going to treat me with standard of care. Do I have an option of clinical trial? Like in DLBCL setting, R-CHOP, or R-EPOCH, which is the foundation of DLBCL treatment for so long. What is happening in the clinical trial is we are building on that foundation. We are building on the standard of care. So, there could be a potential that you are an eligible patient for X, Y, Z clinical trial, where you’re getting an added novel immunotherapy drug or a bispecific antibody.

Why you’re doing that to see whether we can improve upon whatever we have. So, in that, if patient is informed, they can also be a part of the conversation, right? It is just like when we go for, say, buying a car. It is not that a dealer is showing us a car, and we say, “Okay, I’ll go with it.” No, we say, “What color it is? I want this color. I want this seat. I want this model.”

I mean, that is a shared decision-making, right? And then we come to a conclusion. “Okay, this is the car that I prefer, I’m comfortable with, and I’m going to buy that.” It’s similar in cancer care.

Tools for Choosing Myeloma Therapy

December 15, 2022/in IMT Animated, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

What Is Myeloma CAR T-Cell Therapy?

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Tools for Choosing Myeloma Therapy from Patient Empowerment Network on Vimeo.

When faced with choosing a myeloma treatment, what should be considered? This animated video reviews factors that impact treatment decisions, provides a list of questions to ask your healthcare team about therapy and advice for engaging in your myeloma care.

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Transcript:

Whether a patient is newly diagnosed with myeloma or is facing a relapse, choosing a treatment approach can feel overwhelming.

Shared decision-making is a process where patients and healthcare providers communicate and collaborate to make care decisions. This approach encourages patients to take a more active role in their care and treatment and can help them feel more confident when choosing a therapy.

So, what can impact myeloma treatment decisions?

There are patient-related factors, such as a patient’s age, fitness level, and pre-existing conditions.
And, disease-related factors, including the aggressiveness of the patient’s disease and its location in the body.
And, treatment-related factors, such as past treatments a patient has received or if they are refractory to medicines.

How can you play a role in making treatment decisions?

You can start by making a list of questions in advance of your appointment. This can help you to organize your thoughts before you meet with your healthcare team.

And, when working with your doctor to choose a treatment, consider asking the following questions:

What type of myeloma do I have?
Are there test results that may impact my treatment choices?
What are the risks and benefits of each treatment option?
What approach do you recommend and why?
How is the treatment administered, and what side effects might I expect?
What are my options if this treatment stops working?
Are there newer treatment options available to me, including immunotherapy?
And, is there a clinical trial that might be right for me?

It’s also a good idea to bring a friend or loved one to your appointment for support to take notes and help you recall information. Afterwards, discuss the appointment together – you can use this time to talk about your care plan and do your own research to learn more about your options.

The patient portal is another useful tool in your care. You can use it to view lab and test results. And you can use the messaging feature to communicate with your healthcare team when you have more urgent questions to address before your next visit.

Now that you know more about how to make myeloma treatment decisions, how can you take action?

First, consider a second opinion or a consult with a specialist.
Then, ensure you have had all relevant myeloma testing.
Next, understand and participate in treatment decisions. This includes learning about your options, so you can weigh the pros and cons of each approach. And be sure to speak up and share your personal preferences and goals with your care team.
Communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.
And finally, bring a friend or loved one to appointments and always write down any questions or concerns in advance.

Visit powerfulpatients.org/myeloma to learn more about myeloma and access tools for self-advocacy.

What Experts Are Learning About the Hereditary Risk of Myeloma

December 12, 2022/in INSIST! Myeloma, MM Insist Testing, MM Newly Diagnosed, MM Programs, MM Testing, MM Videos ND, MM Videos T, Multiple Myeloma /by Kara Rayburn

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What Experts Are Learning About the Hereditary Risk of Myeloma from Patient Empowerment Network on Vimeo.

Myeloma experts Dr. Irene Ghobrial and Dr. Betsy O’Donnell share research updates on predicting the risk of developing myeloma, both from inherited genetics as well as environmental factors.

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.

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

Understanding MGUS & Smoldering Myeloma: What’s the Difference?

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Transcript:

Katherine Banwell:

Is there any research on predicting hereditary risk of myeloma?

Dr. Irene Ghobrial:

Yes, so part of the PROMISE study is trying to understand what is the risk of developing myeloma? So, we’re recruiting people who are either African American, because they have a three times higher chance of developing myeloma compared to the white population, as well as people who have a first degree family member with a plasma cell disorder.

Or even any blood cancer because now we see that CLL and lymphoma and myeloma can actually come together. And we’re now doing something called whole genome sequencing of all of the DNA that you inherit from Mom or Dad called the germ line. Basically, we try to see did you inherit the gene from Mom or Dad that increases your risk to myeloma?

Now, it’s not as high as something like BRCA1 mutation or 2 mutation, where if you have that, you’re high, high chance of developing breast cancer or ovarian cancer and so on. We probably have several factors that need to be put together. You inherit something and then the environment adds something, and then as we get older, we get the hit.

Or you inherit something that changes your immune system, and that allows the plasma cells to start proliferating faster because they are reacting as an immune cell, and that allows the hit of myeloma to happen. And we’re working on that, and we would really encourage everyone who has a relative with myeloma, sign up on PROMISE study.

Because that’s how we can get the answer. That’s how we can say it’s not because you are an African American or you’re white. It’s not because you have a first-degree family member or not. It’s because of this gene. So, taking away race, taking away all of those factors, taking away age and trying to go back to the biology. Is it a certain gene, is it the certain immune cell that makes us go to that risk?

And then Dr. O’Donnell is really taking it to the next level. Now what is in the macro environment? So, we talked about what we inherit, but it’s like nurture and nature, right? So, nature is the genetics and then nurture, what do we eat? What do we change? Obesity, health, all of those things change our inflammation level and change our ability to basically prevent those myeloma cells from starting or from continuing to progress. And she can potentially talk about her work on microbiome, on the tiny bacteria that are in our body from what we eat. So, maybe, Betsy?

Katherine Banwell:

Okay.

Dr. Betsy O’Donnell:

Absolutely. Yes, so one of the things that particularly interests me is the effect of lifestyle on our risk of getting cancer.

And specifically within plasma cell disorders, and I think there have been other cancers, breast cancer and colon cancer, where they’re a couple steps ahead of us just in understanding the influence of things like obesity and the gut microbiome. So, the specific bacteria that are within your intestinal tract. It makes a lot of sense in colon cancer, but we think that that’s not limited to diseases like that. We actually think that these microbiomes, which are influenced by the foods that you eat, may have a relationship with your immune system. And remember, myeloma is a cancer of the immune system.

So, we’re all working together on our team here on a very scientific level to understand lifestyle influences and how they may cause or potentiate multiple myeloma. And so we’re excited to kind of bring this piece together. When you think about the spectrum of plasma cell disorders, not everybody goes on to myeloma, but a lot of people sit in these early precursor diseases, MGUS and early smoldering.

And so are there things that people can do for themselves that might influence their gut microbiome, or if it’s the amount of body fat that we have that’s very involved in cell signaling? Can we modify those things, exercise more potentially, that will decrease our body inflammation levels or alter those pathways that have been set in process that, by altering them, may decrease the risk of going on to more advanced plasma cell disorders?

Katherine Banwell:

That’s such great information.

Expert Perspective: COVID Vaccines and Treatment for Myeloma Patients

December 12, 2022/in INSIST! Myeloma, MM Insist Treatment, MM Newly Diagnosed, MM Programs, MM Testing, MM Videos ND, MM Videos T, Multiple Myeloma /by Kara Rayburn

Expert Perspective: COVID Vaccines and Treatment for Myeloma Patients from Patient Empowerment Network on Vimeo.

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Myeloma expert Dr. Irene Ghobrial shares an update on COVID vaccines, treatment, and advice for myeloma patients on how to help protect themselves from the virus.

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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Transcript:

Katherine Banwell:

Many prominent doctors claim the COVID vaccines suppress the immune system. How can boosters be justified in an already immune deficient myeloma patient?

Dr. Irene Ghobrial:

Yes, so we think that protecting yourself and preventing COVID infections is so essential and so important.

Especially in a patient with myeloma and especially when you’re receiving therapy: daratumumab (Darzalex), bispecifics, CAR-T. We want to make sure everyone is protected from COVID infections, and they are real. They are serious, and they cause death in our patients. So, every step, not only getting the vaccine but also sometimes we give tixagevimab co-packaged with cilgavimab (Evusheld) to protect our patients and protect further problems and reinfection.

Katherine Banwell:

Remind us, what that is, the Evusheld?

Dr. Irene Ghobrial:

Oh. It’s an antibody to help us prevent the COVID infection, so as a prevention method rather than as a treatment method.

The other thing that we think of is the immune system is already altered in myeloma. It’s even altered or changed even as early as MGUS and smoldering myeloma. So, when we’re walking around and thinking, “Oh, I have only a benign design of MGUS,” that’s not true. The immune system has already started to change as early as MGUS, and in many of us as we get older.

So, we have to be more protective and we have to be more careful with our patients. But as we get to even myeloma, before we even treat it, before we use the drugs that kill plasma cells, good and bad plasma cells, which secrete antibodies that fight infections, we are already at risk for COVID infections.

And then our drugs, unfortunately, don’t only kill the malignant or the bad plasma cells, they also have a small side effect of killing also your normal plasma cells, and these are the ones that make antibodies to fight infections. So, you are at risk, and you have to be very protective and careful with yourself.

Understanding Personalized Medicine for Myeloma

December 12, 2022/in INSIST! Myeloma, MM Insist Treatment, MM Newly Diagnosed, MM Programs, MM Testing, MM Videos ND, MM Videos T, Multiple Myeloma /by Kara Rayburn

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Understanding Personalized Medicine for Myeloma from Patient Empowerment Network on Vimeo.

Myeloma experts Dr. Omar Nadeem and Dr. Betsy O’Donnell discuss the personalized approach to treating myeloma and the factors that are considered when making care decisions.

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. Nadeem, as we begin our treatment discussion, would you define personalized medicine as it relates to myeloma care?

Dr. Omar Nadeem:

Yes. I think we’re getting better and better at really having a personalized treatment plan for each individual patient with multiple myeloma. I think Dr. O’Donnell defined before, we are identifying some of the markers where we have targeted therapy for, and we hope with time we’ll discover more and more targets that can truly lead to personalized medicine for individual patients.

Right now, though, we have a lot of approved therapies for multiple myeloma, and that list is getting longer and longer basically every month, it seems, nowadays. So, when we have so many tools in our toolkit, we then have to figure out, well, which strategy works for which patient? And the fact that we have effective therapies, we’re able to tailor how much of one particular therapy a patient may benefit from. So, some of the decisions that come into play is which medication should I combine for this patient which will lead to obviously disease eradication?

And then also, how much do I need to intensify that treatment? Do we need to think about doing a stem cell transplant or not? Yes or no?

There are lot of pros and cons, right? So, it’s a very personalized decision that we have, looking at the disease factors, but also a lot of personal factors because transplant interrupts life, and then we have to make sure that that fits with that particular patient’s lifestyle.

And then we talk about maintenance therapy. You know, that’s the therapy that is designed to kind of keep the disease away usually for many, many years for the majority of patients.

But what does that look like, right? Does that include just pills? Is it going to be shots plus pills? Is it going to be a combination, etcetera? So, we have all the discussions at each phase of myeloma, and we discuss with them about what the pros and cons are and how that may fit into their particular lifestyle.

Katherine Banwell:

Dr. O’Donnell, what factors do you consider when choosing a treatment approach?

Dr. Betsy O’Donnell:

So, I think you’ve heard from all of us that we really try to have an individualized approach. When we’re talking about multiple myeloma, one of the main factors that I think about is really kind of the overall wellness of the patient. Historically, we had different categories of transplant eligible, transplant ineligible.

And so that can influence some of the decisions. Really it comes down to what is it the person’s performance does? How well are they doing in their day-to-day life? And that really can dictate the intensity of the therapy. We know that age is just a number, it really is, so there are factors beyond that. What other medical problems do people have? What are the specifics of how well their kidneys are working?

And so the biggest thing that we can work with is the dose. In fact, we’ve had work that shows that using lower doses from the get-go in older patients allows almost identical outcomes, but really gives patients a tailored dose to where they are at that juncture in their life.

And so remember, myeloma is much more like a marathon, and so you have to set out at a pace that can be sustained. We treat people continuously. There’s an induction phase where we use a multiple drug combination, but beyond that, as Dr. Nadeem just said, they go on to maintenance, and that maintenance is indefinite. And so you have to set out at a pace or at a dose that you can sustain.

Different medications have different toxicity profiles, so if someone had, let’s say, cardiac or heart issues, we might steer away from some medications that may exacerbate those. So, every decision is individualized. It’s based on who the patient is, where they are in their life, what other medical problems they have, and what we think they will do best with over time, not just in a short timeframe.

Understanding MGUS & Smoldering Myeloma: What’s the Difference?

December 12, 2022/in INSIST! Myeloma, MM Insist Testing, MM Newly Diagnosed, MM Programs, MM Testing, MM Videos ND, MM Videos T, Multiple Myeloma /by Kara Rayburn

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Understanding MGUS & Smoldering Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Irene Ghobrial explains the difference between the precursor conditions, MGUS (monocloncal gammopathy of undetermined significance) and smoldering myeloma, including how these conditions are detected.

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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Transcript:

Katherine Banwell:

Dr. Ghobrial, what is MGUS?

Dr. Irene Ghobrial:

So MGUS, or monoclonal gammopathy of undetermined significance, is a precursor or the stage before myeloma happens, and it’s actually a very common disease or entity in many, many of us as we get older. In fact, maybe 5 percent of the population over the age of 50 would have this early MGUS.

It doesn’t mean that it’s cancer. It’s a precursor to cancer, and we can talk more about it as we go on.

Katherine Banwell:

All right. Is it the same as smoldering myeloma, or is that something different?

Dr. Irene Ghobrial:

It’s not. It’s an earlier stage than smoldering myeloma, and it’s hard to actually make the right definitions. But currently what we say is if you have more than 10 percent cancer cells or plasma cells in your bone marrow, then it’s smoldering myeloma. And by the name, smoldering, it’s almost myeloma. It’s ready to go on fire, but it’s not there yet.

MGUS is before that, and the difference is that the chance of progression from MGUS to myeloma is only 1 percent per year, so many, many people will never progress to myeloma. While smoldering myeloma, just because there are more cancer cells in the bone marrow, has a higher chance of progressing, which is 10 percent per year. And in some people, a very high chance of progression of 50 percent in two years.

And we want to make sure that we catch those cases early and not wait for myeloma to happen.

Katherine Banwell:

How would you define myeloma?

Dr. Irene Ghobrial:

So, myeloma is currently defined as the same thing. The number of plasma cells in the bone marrow could be above 10 percent or more, or you have a protein in the blood. But the problem is that you’ve already had problems. You’ve had symptoms of end organ damage, so we have either high calcium, bone lesions, or bone fractures, anemia, kidney failure.

And then now or more recently, we added a few more things to tell us these people are going to really develop myeloma soon. So, it used to be part of smoldering myeloma, now it’s part of the definition of myeloma, so that we can treat patients earlier, which is if your light chain level is very high, above 100 for a ratio, or if you have multiple lesions by something called an MRI or a PET CT scan instead of the traditional X-rays, or if your bone marrow has a lot of the plasma cells, more than 60 percent.

And these were new definitions to make sure we don’t wait too much until people have an organ damage or symptoms and then we treat them. And you’ll hear from us that we think we should be treating people even earlier than that.

How Does CLL Affect the Immune System?

November 22, 2022/in Chronic Lymphocytic Leukemia, CLL Newly Diagnosed, CLL Programs, CLL Thrive, CLL Thrive Living, CLL Treatments and Clinical Trials, CLL Videos ND, CLL Videos TC, CLL Videos WPS, CLL Whole Patient Support /by Kara Rayburn

Educational Resources for CLL Patients

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How Does CLL Affect the Immune System? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how a patient’s immunity is affected by the disease and strategies for management.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this?

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional.

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, NK cells. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system.

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection.

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals every 4 to six weeks, which reduce the chance of these infections.

Where Can CLL Patients Access Financial Support?

November 22, 2022/in Chronic Lymphocytic Leukemia, CLL Newly Diagnosed, CLL Programs, CLL Thrive, CLL Thrive Living, CLL Treatments and Clinical Trials, CLL Videos ND, CLL Videos TC, CLL Videos WPS, CLL Whole Patient Support /by Kara Rayburn

Understanding CLL Treatment Classes

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Where Can CLL Patients Access Financial Support? from Patient Empowerment Network on Vimeo.

Is there patient financial assistance for chronic lymphocytic leukemia (CLL) treatments? CLL expert Dr. Seema Bhat shares resources and advice for accessing support.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Financial concerns can be another source of stress for people with CLL. Obviously, everyone’s situation is different, of course, but what resources are available for patients who need financial support?

Dr. Bhat:

So, financial barriers can be a real concern for our patients. Targeted therapies are very expensive, and although insurances do cover them, the approved FDA drugs, copays can be very high, and this adds on because our patients with – our treatments with CLL, some of them tend to be indefinite. That means patients have to take those medications on an ongoing basis, and when they face such situations, high copays, we look into financial assistance. We look for funding for copay assistance, and funding can be provided by pharmaceutical companies. We can also apply for grants through The Leukemia & Lymphoma Society and other resources to help out our patients with these financial concerns.

Katherine:

So, does the patient work with the healthcare team to find financial support?

Dr. Bhat:

Absolutely. We at our institution have what is called, “MAP,” or Medication Assistance Program.

And when we see that – we run the medications through the insurance, then we see the copay is high, we refer our patients to the MAP program, and then they take over. They find them grants, they find them assistance through be it pharmaceuticals, copay assistance programs. So, invariably, almost all patients who come and see us are helped through that program.

Katherine:

What about a nurse navigator or patient navigator? What do they do? How can they help?

Dr. Bhat:

Well, so yes. Nurse navigators and patient navigators are also very important for caring for our patients. So, patients can have, besides our care for our patients which includes caring for their disease, caring for their symptoms, caring for their reduced hemoglobin and reduced platelets, our symptom management, they have psychological needs, they have functional needs, they have needs like family support.

So, these are all the things that patient navigators can help patients set that up based on their – we have patients who travel from out of state, are from two or three hours away. So, these patient navigators look into what resources they should have available locally. Sometimes, patient navigators help us – some patients cannot do frequent travels back and forth, so we get them connected to local oncologists, also. So, patient navigators look into those appointments, look into those offices, so they provide a lot of help to us manage our patients. So, they provide more of a holistic management, rather than just treatment of CLL.

Addressing Anxiety About CLL and COVID

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