Tag Archive for: care partner

The Benefits of Shared Decision-Making for Myeloma Care

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The Benefits of Shared Decision-Making for Myeloma Care from Patient Empowerment Network on Vimeo.

Why is working WITH your myeloma care team to determine a treatment plan so important? Dr. Sikander Ailawadhi reviews the benefits of the concept of shared decision-making and explains how myeloma treatment goals affect a patient’s care plan.

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

Related Resources:

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview

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

 Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

So, when it comes to choosing therapy for myeloma, it’s important to work with your healthcare team to identify what might be best for you. How would you define shared decision-making and why is this so critical to properly managing life with myeloma?  

Dr. Ailawadhi:

Excellent question, Katherine. Shared decision-making or a process in which the physician, the health care team, and the patient, their caregivers, everybody comes together, shared, to make a decision that we feel is in the best interest for that patient at that time. That is the whole concept.  

Whenever we think about treatment decisions, in our mind, the three main components that have to be considered every single time. Not just newly diagnosed or relapsed or third line or whatever, every single time a treatment decision has been taken, we must consider patient-related factors. What is their preference? What are their goals? Do they have caregiver support? How far do they live? Do they want IV? Pills? Any side effects that are there?  

Comorbidities? Other issues? Financial conditions? Everything comes into play, patient-related factors. Then, there are disease-related factors. How fast is the disease growing? Is this new? Is this old disease, high-risk, low-risk, or standard risk? Or what has been given before, et cetera. So, patient and disease-related. And the number three is the treatment-related factors. What is being considered for the patient? What are the ins and outs, pros, and cons?   

All of this has to be laid out in front of the patient and preferably also their caregiver if the patient has someone who they can share their decision with.  

And when we put all of that in the mix, we come up with a decision which is hopefully in the patient’s best interest. They are more likely to go through with it. They are informed. They are involved in their care. And then, hopefully, if the patient starts on a treatment that they are interested in, knowledgeable about, and committed to, we’ll be able to keep the patient on that longer term and get the best benefit out of it.  

So, in my mind, the main reason for shared decision-making is to make sure my patient is committed to that treatment. They understand that treatment. And we make this kind of bond between us as clinicians and our teams and the patient and their home team, their family team, their caregiver team so that everybody is working together with a singular goal. Right treatment for the right patient at the right time because it must be patient-centric, not research or clinician, or drug-centric. 

Katherine:

What are myeloma treatment goals, and how are they determined?   

Dr. Ailawadhi:

So, I think the myeloma treatment goals can be very different depending on what vantage points you’re looking from. My treatment goal is to provide the best treatment for my patient that has least side effects, gets a deep control, and my patient’s able to live long with a good quality of life. Okay. But that’s my goal.  I need to figure out what my patient’s goals are, and sometimes our patient’s goals are very different.  A patient’s goal might be that they want to really avoid side effects. Well, they want to live, lead their quality of life, and keep traveling. And this happens on a day-to-day basis.  

Just the other day, one of the patients said, “Well, I really want to keep driving around in my RV with my wife, because that is what we had wanted to do at this point of our life. What can you do to help me control my disease, but keep me driving my RV?” And we literally had to figure out where all they were traveling. We identified clinics close to them and connected with physicians so that they could continue their treatment wherever they were. So, the patient’s goals are very important, and in fact, I would say they are paramount. So, understanding what the patient wants. They may be wanting to control pain. They may be wanting to just live longer.  

They may be wanting to delay treatment so that they could watch their daughter’s soccer game. I’m just saying that the goals can be very different. It is important to lay them out. Every time you’re making a treatment decision, the goals should be laid out into short-, mid-, and long-term goals. I should bring my goals to the discussion. The patient should bring their goals to the discussion, and we come up with whatever is the best answer for them that suits them.  

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

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Key Advice for Myeloma Patients | Questions to Ask About a Care Plan from Patient Empowerment Network on Vimeo.

How can newly diagnosed myeloma patients be proactive in their care? Dr. Krina Patel shares key advice for patients, including the importance of making notes before office visits and the role that a care partner can play in overall support. 

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

Related Resources:

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

 Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

 Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care?

Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care? 

Transcript:

Katherine:

For newly diagnosed patients, what key advice would you share with them? And are there specific questions they should be asking their doctor about their care plan? 

Dr. Krina Patel:

Yeah. So, I know it’s hardest for newly diagnosed patients. Most people have not even heard what multiple myeloma is. They’re learning how to spell it correctly and making sure it’s not melanoma. And this is a conversation I have with so many of my new patients that I think it’s really hard your visit, and maybe even your second visit, to ask all the right questions. So, really, coming home and every time you’re on a treatment or you’re talking about a treatment and you have a question, write it down because I know it’s really hard when we’re only there for 15, 30 minutes to talk to you.  

For us, we have MyChart, so my patients will send questions as they think of them through that. And I think that’s really important. Sometimes it’s hard to know what questions to ask when you have no idea what’s about to happen, and that’s okay. But I think as you’re going through therapy, really making sure that you ask about alternative therapies that might be available and why someone is picking one versus the other, making sure you know what supportive medications you really need.

And I will say that, with myeloma, a lot of our treatments are patient-friendly but they do cause side effects and infections, so, we have a lot of supportive medications we use; so, again, anti-shingles, potentially if you could get a blood clot, we have you on some type of blood thinner.  

We have people on against steroids because of all of our initial therapies have steroids. We wanna make sure you don’t get ulcers in your stomach, so we have patients on proton pump inhibitors. There’s a lot of things we do to again decrease that toxicity. So, that’s important.  

And then, I think the next part is when you’re on treatment, whatever symptoms you’re having keep a log of that. Some things are, okay, maybe it’s just a little bit here and there, that you’re feeling fatigued but then you’re better. But there are certain things that cause a lot of side effects that my patients sometimes don’t tell me about. So, the steroids can cause major insomnia for some of my patients where they don’t sleep for three days, and that’s not okay. We can decrease those.

So, there are ways to manipulate the treatments as we’re going through to make sure that not only are you having a great response but that you’re not having major side effects that are actually gonna hurt your health down the road. So, really important to discuss those things that you’re having as you’re going through.  

Katherine:

There’s also the importance of a care partner in your life –  

Dr. Krina Patel:

Yes. 

Katherine:

– right?  

Dr. Krina Patel:

I agree. So, I joke with my patients but it’s real; there’s actually a study that shows that men with three and a half women in their lives do much better in healthcare in general than those who don’t. So, I’m like “Go get more women in your life” – 

Katherine:

I love that.  

Dr. Krina Patel:

– or just caregivers in general.  

Men are great caregivers too, but really having someone there that can listen for you and write down those things because it is overwhelming. And when you’re on treatment there are a lot of times when you just can’t pay attention. You can’t focus. You can’t listen to everything. And so, the more people that are there, they’ll pick up other things.

So, a lot my patients will even have their loved ones on their phone with them, even if they can’t be there in person so that they can record. And a lot of my patients will record things and they’ll ask me; so, definitely as whoever you’re talking to if it’s okay to record. But most of us will say “Yes, it’s completely fine” so that you can listen to it again when you go home.   

What Do You Need to Know When Considering CAR T-Cell Therapy?

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What Do You Need to Know When Considering CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How does one access myeloma CAR T-cell therapy? This animated explainer video provides an overview of the steps involved in determining whether a patient qualifies to receive CAR T-cell therapy, what the process entails, common side effects, and why having a care partner is essential.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Understanding CAR T-Cell Therapy | How It Works and Who It’s Right For

Understanding CAR T-Cell Therapy | How It Works and Who It’s Right For 

 Understanding Possible Side Effects of CAR T-Cell Therapy

Understanding Possible Side Effects of CAR T-Cell Therapy 

 What You Need to Know About Accessing CAR T-Cell Therapy

What You Need to Know About Accessing CAR T-Cell Therapy 

Transcript:

The emergence of CAR T-cell therapy is revolutionizing treatment for some people with myeloma. But, who is it right for, and what is the process for people that qualify?  

  • The first step in accessing this treatment is to be referred by your physician to a center that specializes in CAR T-cell therapy. 
  • Then, a consultation will take place with the transplant team, and a health assessment is administered to ensure patients are healthy enough for CAR T-cell therapy. This includes testing to review the current status of your cancer and testing of your body’s major organ systems.
  • Next, the specialty center will evaluate the best type of CAR T-cell therapy for the patient, including clinical trial options.
  • After approval, financial coordinators will discuss insurance and therapy costs with the potential recipient. Logistics are also arranged at this time, which may include help with transportation and housing, if necessary.
  • Medical centers also require that patients have a care partner, such as a family member or friend, who can be with them at all times, particularly after leaving the hospital. 

So, what is the process once a patient is approved for CAR T-cell therapy? Once a patient is approved to move forward with the procedure, a date is set for collection of the patient’s T cells. T-cells are collected during a process called apheresis. During apheresis a specialized machine filters the patient’s blood to remove the T-cells for collection and the rest of the blood is returned to the patient.  

 After collection, the T cells are sent for manufacturing. During that time, the patient is given a “bridging therapy” to maintain the myeloma until the CAR T cells are infused.  

Once the CAR T cells are infused, the patient will be closely monitored by the CAR T center. This may or may not include hospitalization depending on the policies of the treatment center. Patients and their care partner should plan to stay close by the center for up to 30 days after the infusion.  

During this time, the patient is evaluated for their response to treatment and monitored for possible side effects so that they can be managed in a timely manner.  

The potential side effects of CAR T-cell therapy may include: 

  • Cytokine release syndrome, or CRS, which is an aggressive response to treatment by the immune system and may cause symptoms such as low blood pressure, high heart rate decreased oxygen saturation, fever, nausea, and body aches. 
  • Another possible side effect is neurotoxicity, which is an adverse event that may cause issues such as confusion, difficulty with communication, seizure, or tremors. 
  • And, another side effect may be low blood counts, which could impact the immune system and increase risk for infection. 

Every patient is different, so close monitoring is essential.  

So now that you know more about CAR T-cell therapy, you can work with your healthcare team to decide if this treatment option may be right for you. Be sure to speak up and ask questions. Remember, you have a voice in YOUR myeloma care. 

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

A CAR T-Cell Therapy Care Partner Shares Her Story

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A CAR T-Cell Therapy Care Partner Shares Her Story from Patient Empowerment Network on Vimeo.

What can patients and care partners expect when undergoing CAR T-cell therapy? Care partner Adrienne shares her husband’s experience with CAR T-cell therapy and explains her role as his care partner, while expert Sarah Meissner shares insights.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners

 How Does the CAR T-Cell Therapy Process Work?

How Does the CAR T-Cell Therapy Process Work?

 Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

Transcript:

Katherine:

Adrienne, I’d like to turn to now to you and find out more about your experience. How did all of this begin for you and your husband? 

Adrienne:

This all began with my husband and I, we both are very active, and we work out a lot. And he had some pain in his lower back and his groin area. 

And we started going to physical therapy and a chiropractor. And the chiropractor was doing besides just chiropractic, he also did physical therapy stuff, too. His pain wasn’t getting any better. And after a few months, he called to get an MRI and that’s when they found his myeloma was in the MRI. Because of his age, he was diagnosed in 2018 at I’m trying to think how old he was. He was around 37. So, it was a very early diagnosis maybe, but he definitely was on the young side of having this kind of cancer. So, that’s how we found out.  

And then after that, it was just kind of a whirlwind on how we would get care for him and what we needed to do to get him better. 

Katherine:

Yeah. It must have been hard. 

Adrienne:

Yeah. It was hard. 

Katherine:

What was the process like for you as his main care partner? 

Adrienne:

My role once he was diagnosed was just to do everything I could to find out. We didn’t really know about the disease before. So, to find out what the best care for him was. We did a lot of research. We ended up going to several doctors before deciding what treatment plan we were going to go with. 

And then, he had some ups and downs, some failed treatments. And that’s where we went into CAR T, because we had so many failed treatments before.  

Katherine:

Did you feel like you were doing a lot of research? Were you doing a lot of homework Googling stuff? 

Adrienne:

Well, kind of trying to but we were also told not to do that too much, because it’s always the worst-case scenario online. But we did that somewhat and we got as much information from each institute we went to. And we went to, like I said, we went through three, and then we ended up at CBCI at the end where we are now.  

So, we started to discover that the first few lines of treatment were pretty standard. When you’re put into a situation where you find out your spouse has cancer, all you want to do is you want to find the magic miracle that’s going to cure them. And we did have to just go through the steps of standard care first. And we’re hoping that this CAR T-cell works. It’s working really well right now.  

Katherine:

I was just going to ask you, how are you and your husband doing now? 

Adrienne:

We’re doing pretty good. He’s still very tired. He’s, actually, taking a nap right now. And he has ups and downs. He definitely feels a lot better overall. He is getting back to normal life. But there are times where he just doesn’t feel quite right and has some physical pain and some cognitive issues. 

And we don’t really know if that’s from CAR T alone or if it’s also just from the last five years of having chemo and bone marrow transplant and all of the care before the CAR T-cell. 

Katherine:

Sarah, can you answer that question about cognitive difficulties that Adrienne’s husband is having? 

Sarah Meissner:

Yeah. So, it is pretty common to have what we call chemo brain after any treatment really. And in the case of Adrienne’s husband, he’s had several rounds of chemotherapy going into the CAR T treatment. So, it can be kind of an accumulative effect of all of that. And it is something that people struggle with post-treatment. 

It’s kind of a brain fog, not remembering things. So, working with the team and neurologists can be helpful in some cases. So, that is something that we see. 

Who Are the Members of a CAR T-Cell Therapy Team?

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Who Are the Members of a CAR T-Cell Therapy Team? from Patient Empowerment Network on Vimeo.

Who are the members of a CAR T-cell therapy care team? Expert Sarah Meissner provides an overview of healthcare team members and how they support patients during the CAR T-cell therapy process.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

 A CAR T-Cell Therapy Care Partner Shares Her Story

A CAR T-Cell Therapy Care Partner Shares Her Story

 CAR T-Cell Therapy Care Partners What Do You Need to Know About the Process

CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process?

Transcript:

Katherine:

So, let’s begin by learning more about Sarah’s role. Sarah, can you explain what you do as a transplant coordinator at CBCI? 

Sarah Meissner:

Of course. So, I like to say that as a coordinator, I am kind of the travel agent of the CAR T process. So, I meet with the patients when they are determined to be a candidate for CAR T-cell therapy. 

And I act as kind of the intermediary between the patient and the care team. I help them get set up for all of their appointments as well as provide education for what’s going to be occurring. 

Katherine:

Okay. So, when someone is undergoing CAR T-cell therapy, who are the essential members on their healthcare team besides you? 

Sarah Meissner:

We have a pretty big care team. So, of course, we have the physician who is kind of at the helm for determining the care plan. We also have financial coordinators, social workers, dieticians, as well as the nursing team who will be providing the care to the patient. 

Katherine:

So, how many people could be on a team? 

Sarah Meissner:

It could be as many as 10. It just depends on the individual patient’s needs and how different people can help. 

Katherine:

How do you, specifically, work with CAR T-cell patients and care partners? 

Sarah Meissner:

So, I am their main contact during the process. So, any questions that come up that I can help with, I’m there via phone, email, in-person meetings. I also am big in education. So, sitting with the patient when they’re in clinic and helping them understand what this treatment is, why we’re doing it, what they can expect and just helping them through the process. 

CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process? Resource Guide

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Download Guide

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Tools for Accessing Quality Prostate Cancer Care

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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.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 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. 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

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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.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

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: 

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

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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.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

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

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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.

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

 Tools for Accessing Quality Prostate Cancer Care

 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 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

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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.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Living With Prostate Cancer

Prostate Cancer Care Partners: Getting the Support You Need

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. 

Roles Reversed: Taking Care of Your Care Partner

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Roles Reversed: Taking Care of Your Care Partner from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff are experiencing a bit of a change. Jeff is Summer’s care partner, however the roles have been reversed. Jeff recently had a knee replacement and is unable to do many tasks he was before. Summer has jumped in taking care of Jeff, but admits it’s harder than it looks. Watch and hear Summer’s comedic take on switching roles and stepping into the care partner role.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833) 213-6657. 

Transcript:

Jeff:

Summer! Bring me a snack.

Summer:

Yes, I’m bringing you a chocolate bonbon.

Jeff:

I don’t want a Ghirardelli, I want a Walker’s shortbread.

Summer:

Ugh, yes sir.

Being a caregiver is not a day in the park.

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer, hi.

Jeff:

We’re your MPN Network Managers for the Patient Empowerment Network. We’re here today to continue talking about caregiving. In the last video, we talked about me being Summer’s caregiver and or different roles and what I bring to that and so on. We had a chance in the last month to actually turn the tables.

In mid-December I had a knee replacement and since then, Summer has been acting as my caregiver. Tell us how it’s been, Summer.

Summer:

Ugh, it’s been exhausting. I’m driving, I’m doing dishes, I’m emptying the garbage, I’m cooking all the meals, I’m getting everything exactly the way you want. You’re lot more of a perfectionist than I am…

Jeff:

Yup, I should be able to drive in another week or so and Summer hates driving, so I really appreciated that. And pretty soon I’ll get back to my role of doing the driving anyway. She’s done a wonderful job, really been very helpful and I’ve been extremely appreciative of it. What’s been the hardest thing for you, Summer?

Summer:

Thinking about all the little things you take for granted that you couldn’t do, like mailing your letters and emptying your garbage. That’s everything, you really have to be on the ball and think of what the needs of the other person really are.

Jeff:

Very true. We stressed that in the last video. Needs of the patient. We have a real supportive relationship in our normal marriage in general, so for us it’s not difficult, but some people may have a difficult time adjusting to being a caregiver or even being a patient.

Summer:

Right.

Jeff:

One thing you have to remember, give the caregiver time for themselves. I think I did a pretty good job trying to give you time for yourself.

Summer:

Yeah, I did my aerobics, I visited friends, I rehearsed for the play, I did my stand-up comedy, yeah, I did.

Jeff:

So, it’s worked well for us. So, as you enter into this relationship of patient and caregiver, be aware of each person’s needs. And, you should have a good experience with it.

Summer:

Darling, I have an urge for a chocolate cookie. Could you bring me one? I gotta take a nap.

Jeff:

Certainly. I’ll get it after we say goodbye to the people. Goodbye, ’til next time.

Summer:

Bye, ’til next time.

Patient and Care Partner Address the Mental Aspects of an MPN

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Patient and Care Partner Address the Mental Aspects of an MPN from Patient Empowerment Network on Vimeo.

MPN patient Summer emphasizes how important it is to have goals. One of her personal goals is to walk 10,000 steps each day! As a care partner, Jeff shares his main goal is to do whatever he can to help Summer achieve her goals. Some of their shared goals are to live life to the fullest, always live in the moment and don’t let the disease you have control your life.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833)213-6657. 

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer. And hi, I’m Zelda.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. Here to talk to you today about emotional and metal aspects of dealing with a severe or very serious disease. Summer has some real strong thoughts about that, so I’m going to let her tell you about it.

Summer:

Well, I think it’s really important to always have goals. And one of my first goals, this is my Apple Watch right here to keep track of my steps so I can get 10,000 steps a day. That’s really important. Of course, I’m still teaching my classes. That’s very inspiring. We’re putting on a show pretty soon. And my goal right now too is I’m getting ready for my next comedy show. I’m going to talk about the cloud and about those little people that are in the traffic signs that tell you when to stop or go. And of course I’ve got Zelda and I don’t know what her goal is, just to be a good dog. So, that’s what my goals are. To stay positive.

Jeff:

And Summer has those goals, but one serious and important thing that we decided when she got this disease was we were going to live every life, every moment of our lives to the fullest, in the moment. And that took some adjusting because I’m a real planner. We pay attention to enjoying everything that we do, each day that we do it. And, we decided early on not to change our lifestyle, not to let the disease control us, and just to keep going. And, that alone plus Summer’s fantastic exercise regimen has really done a lot to keep her in good shape and to keep her strong.

As a caregiver, my goals are do whatever I can to help her achieve her goals. So, it’s really important to live life in the moment and keep a positive attitude. Don’t let the disease control you. That’s our advice.

‘Til next time, I’m Jeff.

Summer:

I’m Summer and I’m Zelda.

Breaching Cultural Barriers in Cancer Caregiving

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Humanity is diverse with no two persons being alike. We all face our own struggles, we all have our own ways of handling the hardships life throws at us. While we all may face similar obstacles, that doesn’t mean that each encounter is the same. Cancer comes in many forms with many faces and each person’s experience with it is incredibly unique.

Because the struggle with cancer is as diverse as the people who handle it, it’s imperative that healthcare providers and caregivers alike strive to understand the values and perspectives that shape the cancer patient’s approach to treatment. Among the most important aspects of this is in learning to breach the cultural barriers involved in cancer caregiving.

The Significance of Transcultural Nursing

Culture plays a powerful role in nearly every aspect of human life. It shapes what we do and it informs how we see others, how we see ourselves, and how we see our world. Culture also plays a pivotal role in defining how we understand and respond to illness.

For this reason, the effort to understand a patient’s culture is essential in providing high-quality care. This is where transcultural nursing comes in, particularly when it comes to caring for marginalized and traditionally underrepresented patient populations, such as low-income patients who live in remote areas.

At the heart of transcultural nursing is the effort to understand how a patient’s culture has influenced their health practices. Transcultural nurses leverage this understanding to devise personalized treatment plans that not only serve the patient’s health needs, but that also respect and align with their personal values and beliefs.

Such efforts are especially critical in cancer care, when recommended courses of treatment may sometimes clash with the patient’s wishes. All too often, indeed, healthcare providers may unwittingly dismiss, disparage, or disrespect a patient’s worldview and in the process undermine their right to bodily autonomy simply because the patient’s perspective does not line up with the practitioner’s view of “the science.”

A transcultural approach to patient care, though, can go far in making the exam room a “judgment-free” zone. If we want patients to be truly empowered, if we want them to enjoy and to exercise the self-determination that is their right, then they must first understand that clinicians will respect their beliefs without judgment, even if they do not share them.

Cultivating a “judgment-free” environment in the healthcare system is often the first, most difficult, and most important step in the process of shared decision-making, a process in which the patient’s self-defined goals, needs, and values carry as much, if not more, weight than the clinical data.

End of Life Care

Though hundreds of thousands of people around the world are winning their fight against cancer every day, the reality remains that, for some, victory over cancer will not mean survival. It will, rather, be defined not only by how the patient chooses to fight but also by how they choose to withdraw from it.

And this, too, is a decision that is often deeply imbricated in the patient’s cultural perspectives on illness, death, and dying.

If the patient is a person of faith, for instance, then they may be unwilling to undergo invasive surgeries or grueling treatments to prolong their lives. Healthcare providers and caregivers must endeavor to understand patients’ views of their own mortality and how these shape the patient’s choices regarding treatment.

Considering the Caregiver

As important as it is for care providers to understand the patient’s culture, it is equally important for caregivers to carefully reflect on their own values, perspectives, and beliefs, as these can and do strongly influence patient care practices, even at the subconscious level.

For instance, cultural values regarding quality-of-life issues may compel healthcare teams and informal caregivers alike to unconsciously scale back in their efforts with those patients whom they believe are enduring a “life not worth living.” These cultural perspectives also often obfuscate the fact that quality of life assessments are highly subjective and that these may easily conflict with the patient’s and family’s perspectives on what makes life worth living.

In the case of cancer care, for instance, patients and families may be willing to pursue a litany of experimental treatments, treatments that may seem both outrageous and futile to healthcare providers, who may feel that the patient has long since exceeded the subjective threshold for the “intolerable” quality of life.

In such cases, a caregiver who does not understand the personal and cultural factors informing quality of life perspectives is unlikely to be able to build the kind of trusting, respectful, and supportive relationships that patients need from their healthcare team.

The Takeaway

In many ways, culture defines who we are, what we do, and what we believe. It also strongly shapes our views about and responses to potentially life-threatening illnesses, such as cancer. For that reason, it is incumbent on caregivers to break through the cultural barriers separating them from their patients. Only then will patients enjoy the respectful, empathetic care they deserve.

How Can Care Partners Combat Burnout?

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How Can Care Partners Combat Burnout? from Patient Empowerment Network on Vimeo.

Care partners Diahanna, Sherea, and Patricia discuss how they have learned to overcome burnout. Often times when caring for a loved one, we don’t even realize the burnout until after the fact. As care partners, you have to know when to step away and take time for yourself, so you can effectively care for and support your loved one. 

Transcript

Diahanna:

Hello, we’re going to talk about care partner burnout. So the question I would like to pose is, how would you describe caregiver burnout? And how do you feel it coming on? And how can you counteract it? And Patricia or Sherea, either one of you can answer those questions, it would be great to hear from you.

Patricia:

Let me just start with, I have been a caregiver. Although I am right now experiencing multiple myeloma, my father had multiple myeloma and passed in 1990 and I was his caregiver. At that time, a very young person. So, he actually had to have part of his breast bone removed and they left the wound open, and it had to be pack everyday, twice a day with gauze and an iodine thing. And so, my mom could just not do it and my though was, well she can’t, I have to. So every morning before work, I would go and take care of him in that way. Every evening when I came home from work, before he went to bed, I would go over and do the same thing. And that went on for several months. Because I was young and because I really did not have any understanding of what as going on with my father. I mean multiple myeloma, what is that? Not like today. Today there is information. You know you go online, you can find the information. It worked out anyway that I was able to take care of him. I didn’t know that I even had a burnout cause I just continued to do what I was doing. I worked everyday, I had three kids, you jut do what you have to do and I think that’s what most caregivers get to a point of saying to themselves, “I’ll do what I have to do”. And whether they know they have burnout or not, they just do it.

Diahanna:

You know, I think that is very interesting, Patricia, because I think women have a tendency to do that more so than man because we are already maternal. We’re caregivers.

Patricia:

Yeah.

Diahanna:

And we, if someone else drops the ball, and you know we are used to being on call 24 hours a day, 7 days a week, vacation or not. And so, we do always step in and tack up the slack and put ourselves on the back burner. A lot of the time we don’t realize we’re burnout until after the fact.

Patricia:

Way after.

Diahanna:

And we have no more energy. We have nothing else to give ourselves. So Sherea, how would you describe it? How would you look at this?

Sherea:

I would describe…I was a caregiver for my father, now I’m doing some caregiving for my mother who is having some memory issues. And what I can tell you about the feeling is, the feeling of being overwhelmed, the feeling of pressure, and what I notice with is that I have a short fuse. When I’m feeling burnout, things that normally would just not be a problem become an issue. And so, what I try to do is recognize that I’m having a moment and that I’m going to need to step away for a little bit and get recentered. And I do understand that yes, as women, we just do what we have to do, but there does come a point where you have just had it. You’re at the end of the rope. And I’m starting to recognize that more. So it is a feeling of pressure and just being overwhelmed. And the moment I start feeling it, it used to be I kind of just keep pushing, but now the moment I start feeling it, ok let’s work on that now so it doesn’t become an issue later.

Diahanna:

Mhmm. I can appreciate that. When I was taking care of my husband, I probably put myself in a position where I was taking care of him at times when he didn’t need to be taken care of. It was that thing as I felt I could do better or more for him that he probably didn’t know about or I thought he didn’t know about. And I was mistaken on that. It got to the point where I wasn’t sleeping, there was a lot of anxiety, a lot of stress, I wasn’t eating well, and I was getting colds all the time, which I normally wouldn’t get. So my immune system, everything, was messed up as a result of what I was doing. And I remember coming home from work thinking I can’t do this anymore. If I’m going to be a partner to him, I have to step aside. And I called because I was going to every appointment, I was looking at everything, I was doing all the research because he thought he didn’t have to research as long as he felt good, everything was ok. He said, “I’m going to let you be the person that worries because I know you worry enough for the both of us.” And I did. I worried enough for everybody in the household and it was taking me down a path of being mentally, physically, emotionally stressed. And I had to step away and say, “Honey, I don’t need to go to all your appointments. I don’t need to continue to do this.” And that’s how I realized that I was doing way too much and that I was going to be doing a disservice to him – to everybody in my household.