Tag Archive for: mental health

Care Partners | Tools for Self-Care and Managing Emotions

 Why is it essential for care partners to have self-compassion when caring for a loved one? Tiffany Richards, a myeloma nurse practitioner, helps care partners in understanding why they should practice self-care, recognizing the signs of burnout, and learning about support resources available to them.

Tiffany Richards, PhD, APRN-BC, AOCNP is a Nurse Practitioner in the department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Transcript:

Katherine Banwell:

Being a care partner can be taxing mentally and physically, how do you encourage care partners to ensure that they’re taking care of themselves during a process?  

Tiffany Richards:

I think it’s really important for our care partners to take time for themselves because if you’re investing all of your energy into the patient, that’s going to deplete you.  

And when you’re depleted, you’re just being set up for you to get sick or for you to have a problem. And so, it’s important to take time, whether that’s meeting your friends for lunch or dinner or something, making arrangements for somebody else to come and stay with the patient. If you don’t feel comfortable leaving them alone, then engage the people around you. I think it’s important to create care teams, not just focusing just on one person that’s dedicated to providing care because if you do that, then you don’t have anybody else brought in that can provide respite. And we all need respite. We can’t always be caregiving 24 hours a day. If I had to caregive 24 hours a day, I’d be exhausted. And so, it’s important to have a care team.  

Look at the people around you, whether that’s friends or whether it’s some sort of religious activity, other family members, and creating a team so it doesn’t fall just on one person. I think you can have one person be like the main reference point to get to information, but then bringing everybody in so that you can get the care that you need for yourself. It’s really, really important. 

Katherine Banwell:

What are some signs of burnout and how are they managed? 

Tiffany Richards:

I would say it’s exhaustion, difficulty concentrating, just feeling depleted; where you feel like all of the energy that you have is being drained out of you.  

Those would be signs that I would be concerned about and say, “You need an intervention.” So, be on the lookout for that. I remember my mom was caring for my dad, and she was getting burnt out by it all. And so, she lost weight because she wasn’t able to eat because she was so stressed. And so, making sure that you’re taking care of yourself is so, so important. I just can’t even stress that enough. 

Katherine Banwell:

You mentioned some things that the care partner can do to take care of themselves, but what about handling emotions and anxiety? Do you have tips for them? 

Tiffany Richards:

So, I think in the world that we live in, and I tell a lot of my patients this, I think all of us could probably use some amount of therapy just to deal with life stressors. The world is a very stressful place to live in.  

And I think finding somebody that you can talk to is so important. Having a therapist allows you the opportunity to talk to somebody who has no judgement, who’s not going to give you their opinions of what you should do. I think that’s important because it offers somebody outside of the situation for you just to be able to download on. And that is so therapeutic; I can’t recommend that more. I really recommend counseling for people just because we all need that person that’s not in the middle of the situation that you can just download on and say, “This is what I’m feeling.” They’re not going to be judging you and saying like “That’s right,” or “That’s the wrong way to feel,” or giving their advice on things.  

And people are well-meaning by giving advice and giving their perceptions of things, but it might not always be helpful to you as a caregiver. And so, having that other person there can be really beneficial. 

Katherine Banwell:

Are there support resources available for care partners? 

Tiffany Richards:

So, there are. I know International Myeloma Foundation has some caregiving resources. I think maybe the Leukemia Lymphoma Society has some.  

There’s probably not enough as there needs to be, but there is some more information coming out. I think concerns about the caregiver and care partners is becoming more frontline as patients with myeloma in particular are living longer, and all patients with cancer are living longer. But they’re living longer on therapy. It can be hard for care partners because it’s not just this six-month period of time. 

It’s like this indefinite period. And so, there’s more things coming out, but I would definitely say probably the best resource is finding somebody that you can talk to.  

Katherine Banwell:

Is there anything you’d like to add about caring for someone who is being treated with bispecific antibody therapy? 

Tiffany Richards:

Yeah. I think knowing as much as you can about how the drugs work is really important, and then also what you can do to help manage and mitigate some of the side effects is important. And then, making sure that you understand the schedule, and as well as the schedule for the supportive medications is also really important. When we transition patients from an academic center to community, we usually have a touchpoint with that community provider. We provide instructions. 

So, I think it would good to ask the academic center for a copy of the letter for the communication that’s being given, so that everybody is on that same page, can be really, really helpful. 

Understanding Your Role as a CAR T-Cell Therapy Care Partner

 Why is a care partner essential during the CAR T-cell therapy process? This animated video explains the role of care partner when supporting someone undergoing CAR T-cell therapy and provides advice and tips for their own self-care.

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

Related Resources:

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners 

Transcript:

As a care partner, you play an essential role in supporting your loved one through the CAR T-cell therapy process. Your responsibilities will go beyond emotional support into active caregiving, medical monitoring, and close communication with the healthcare team.  

It’s important to gather as much information as possible early on in the process.  

Start with these questions: 

  • Who are the essential members of my loved one’s healthcare team?
    • CAR-T therapy involves a multi-disciplinary team and you should know the members, who may include hematologists, oncologists, nurse practitioners, pharmacists, and social workers.  
  • What are my responsibilities as a care partner?
    • Your role is an essential part of your loved one’s recovery and may include administering medication, monitoring for side effects, and keeping track of medical appointments. 
  • What can I expect during the CAR-T therapy process?
    • Understanding how the process works and what your loved one will experience will help you prepare for CAR-T therapy and the recovery period.  
  • What can I expect when my loved one leaves the hospital?
    • When your loved one comes home, you need to understand how to assist them, what side effects to watch for, and when to call for help.  
  • Who do I contact in case of an emergency?
    • Know the 24/7 contact information for members of your healthcare team. Some side effects can escalate quickly, and fast action may be needed. 

And while you’re busy supporting your loved one, it’s crucial to recognize your own needs. Care partner burnout is real, and to provide the best care, you must stay mentally and physically healthy.  

So, what can you do? 

First, recognize when you’re stressed. Signs of burnout can include fatigue, irritability, or feeling overwhelmed. Don’t try to handle everything on your own. Ask family members for help and talk with friends – sharing your challenges can reduce stress.  

Remember to practice self-compassion – it can help you cope during stressful times and to manage unrealistic expectations that you may place on yourself. 

  • Next, arrange for help. If caring for your loved one becomes overwhelming, consider hiring professional in-home caregivers, even temporarily, to give yourself a break. 
  • Make self-care a priority. When time allows, take advantage of opportunities to recharge. Self-care is not selfish – it’s essential for your health AND for success in supporting your loved one. 
  • Finally, you don’t have to go through this alone. Ask about support. Many cancer centers offer resources and support groups specifically for care partners – you can start by talking to a social worker or a mental health professional about your needs. 

And, advocacy organizations like The Leukemia & Lymphoma Society (LLS), American Cancer Society, and Caregiver Action Network provide assistance for care partners, including helplines, counseling, and community connections. 

For more care partner tools and resources, visit powerfulpatients.org. 

Overall Health and CAR T-Cell Therapy | Tips for Preparation and Recovery

 

How can you best prepare to undergo CAR T-cell therapy to aid in optimal recovery? This animated explainer video provides key advice for learning about CAR T-cell therapy, consulting with your care team members, and tips for recuperating after the process. 

See More From Thrive CAR T-Cell Therapy

Related Resources:

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

CAR T-cell therapy offers a groundbreaking approach for people living with myeloma, and taking steps to optimize your health can play a crucial role in your treatment journey. From preparing your body and mind before therapy to focusing on recovery afterward, there are actionable ways to support your overall well-being and, potentially, enhance outcomes. 

Here are some key steps to boosting your overall health when preparing to undergo CAR T-cell therapy: 

Start by learning about CAR T-cell therapy.

Take the time to understand how the treatment works and what to expect. Your care team can guide you through the process, from the collection of T cells to potential side effects and what to expect following therapy. Educational resources like those found on the Patient Empowerment Network website can also empower you with knowledge and confidence.  

Next, consider cost.

Confirm insurance coverage and make sure you understand the financial impact of CAR T-cell therapy. You can also meet with a financial counselor or a navigator at your medical center to see if there are any resources to assist with paying for therapy. 

Then, consult with your CAR T-cell therapy team.

When undergoing pre-treatment evaluation, be sure to get all of your questions answered and to understand what support will be available to you during the CAR T-cell therapy process.  

You should also build a support system.

Having a family member or friend who can accompany you to appointments and assist with your recovery is vital, and often required by the CAR T-cell therapy center. A care partner can be an advocate for you and help to ensure you feel supported throughout the process. 

It’s also important to plan ahead.

Coordinate with your employer for the time you’ll need to take off from work. And, if necessary, arrange for child or pet care so that you won’t have to worry about these logistics following treatment.  

And, last but not least, meet with other care team members:  

Consider a consultation with a nutritionist for advice on a diet that supports your body through the CAR T process, as well as safe handling tips for meals following treatment.  

A social worker can help you manage the emotional, logistical, and financial aspects of CAR T-cell therapy.   

And, meeting with a pharmacist may also be useful, as they can provide specific information about medications you will take before, during, and after treatment.  

After CAR T-cell therapy, maintaining your health is essential to boost recovery and to reduce potential side effects or complications. Here are some useful tips to aid in recovery: 

Focus on Nutrition.

Your body will need extra support as it heals. A balanced diet rich in vitamins and minerals can help boost your immune system.  

Stay Active.

Light exercise, such as walking or yoga, can help improve your strength and mental well-being. Consult with your doctor before starting any exercise routine.  

Monitor Your Mental Health.

Emotional health is just as important as physical health during recovery. Reach out for support if you’re feeling overwhelmed or anxious.  

Stay on Top of Follow-Up Appointments.

After therapy, your healthcare team will monitor your progress. Attend all follow-up appointments and keep track of your symptoms. If you notice anything unusual, contact your doctor immediately.  

CAR T-cell therapy is a powerful treatment and taking steps to prepare and care for yourself can make a significant difference in your recovery.

For more information and additional resources, visit powerfulpatients.org.

Emotional Health | Why It’s Vital for Myelofibrosis Patients to Share Concerns

Why is it crucial for myelofibrosis patients to discuss their emotional concerns with their care team? Dr. Naveen Pemmaraju explains how managing anxiety and fear is essential to maintaining overall well-being. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program and Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju.

Download Resource Guide

See More from Elevate Myelofibrosis

Related Resources:

Myelofibrosis Care | Impact of Diet & Lifestyle Modifications

Myelofibrosis Care | Impact of Diet & Lifestyle Modifications

Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Myelofibrosis Symptoms and Side Effects | Why Speaking Up Is Vital

Myelofibrosis Symptoms and Side Effects | Why Speaking Up Is Vital

Transcript:

Katherine Banwell:

Managing the worry associated with a diagnosis or concerns about the future, and we did touch upon that earlier, it can lead to anxiety and fear. Why is it important for patients to share any worries they may be having with their care team?  

Dr. Naveen Pemmaraju:

Well, I love this question. It really wraps up everything we’re talking about here. I believe that part of the journey for the patient does include mental and psychological safety. So, it’s very difficult to make major life decisions when one is not feeling mentally, or psychologically safe. So, that’s what you’re hitting on here. Anxiety, fear, and worry, of course, are a natural and important part of the patient journey with any cancer, much less a rare cancer and blood cancer on top of that. However, sometimes in some patients, it can become so paralyzing, so overtaking, and overwhelming that it may prevent the ability of the patient to receive information, process it, and then make a decision back. Yes, we want people to have caregivers, and power of attorney, all those things are essential, but we also want people to have their own agency in aegis.  

So, I would approach this from three aspects. I really love this question because I don’t think we were addressing it head-on 10 or 15 years ago. One aspect is the disease itself. These MPNs, systemic mastocytosis, eosinophilia, myelofibrosis, PV, ET, all of these MPNs can secrete these cytokines and granules that can mess up the patient’s mindset, even just profound fatigue leading to a slowing down of the neurological process. So, I think underlying control of the disease is something that can affect this. Number two is the side effects from some of these medicines. Interferon is a great example, a wonderful class of drugs that’s been around for decades, treated for solid and liquid tumors, but it has a known side effect of causing brain fog. Some of these issues can even cause depression and anxiety in some people. So, education, mitigation, following these things with dose reduction, that’s an important part.  

A third aspect, Katherine, is actually looking with a counselor and a therapist on the spectrum of this. So, normal, adjustment disorder, depression, for example. What we’ve had as a breakthrough at our center has been the supportive palliative care team. They’ve been phenomenal. So, this is a group of doctors who’s kind of one-third internist, one-third oncologist, and one-third psychiatry support.  

So, rather than the usual consults that we used to do either to psychiatry or to social work case managers, there is this burgeoning field of supportive care medicine which has revolutionized the care, I think, particularly for solid tumor patients and now hopefully for our blood cancer patients. So, I’m able to refer patients for a variety of reasons. There’s a fatigue clinic for overwhelming fatigue. There is obviously depression, and anxiety support, either with medications, talk therapy, or both. Smoking secession for folks who are still smoking and maybe either withdrawing or quitting is causing stress.  

So, it’s a really cool science and if your center has that, that’s something to inquire about. Then lastly, as we mentioned, a nice running theme today, Katherine, is looking for other medical stuff outside of the MPN. I mentioned thyroid earlier. Remember, you have a thyroid abnormality that can cause fatigue, depression, and anxiety, right? So, what’s your TSH thyroid function, and vitamin deficiencies?  

Screening for your other well-person screening exams, looking for solid tumors, looking for other conditions that may be mimicking the MPN, or mimicking one of your other aspects. So, again, it comes down to partnership with the primary care team and looking at that. So, I think those are some of the aspects that I want to mention, but it’s such an important part of the journey. I really have to mention that as well. 

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses the importance of seeking third-party support for managing mental health issues and provides guidance on addressing sexual health concerns during myeloma treatment. 

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

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

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

Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine Banwell:

If a patient or a caregiver is having trouble managing the emotional side of myeloma, whether that be anxiety, depression, or other mental health issues, how do you encourage them to cope with those feelings?  

Daniel Verina:

I think it’s always good – multiple times I say they always should talk to a third party. So, either reach out to our social worker team who are phenomenal at helping support patients, but even reaching out to psychiatrists or psychologists and getting another perspective. It is good to have a friend. It’s good to have family to discuss and talk to, but sometimes, I think, sometimes having somebody so close may not have the best perspective.  

But so, getting a third opinion or a clear lens in discussion to help guide them is a great way to do it. I also advise caregivers because of the burden of the calendars and the different tasks they have to do, I tell – even with my patients, I tell them to journal. Journal their day. Be able to get out there their voice from their mind into a piece of paper to help clear the mind and give clarity to move on for their next steps. It is a challenge.  

Katherine Banwell:

And you’re saying that that psychological support for the caregiver is just as important.  

Daniel Verina:

Absolutely. It’s the patient who also has cancer so does the caregiver have cancer too. So, you’re treating two people, not just the person who you’re giving the therapy to.  

Katherine Banwell:

We were talking about supporting the care partner and the patient in terms of mental and physical well-being. There’s a sexual aspect to that as well, right? 

Daniel Verina:

Absolutely. I think sexuality or sexual health is extremely important. I think the fear, what I have seen in my personal experiences, and it depends on each. And each person, part of this chess game, has a different view. So, the patient is sometimes nervous because they don’t want to hurt their caregiver because they’re on chemotherapy. And then, the caregiver might feel that they’re not prepared because they don’t want to cause any injuries because they’re on chemotherapy, right? What are their counts? May I hurt them? Will I give them an infection? Things like those kinds of things.  

And sometimes in both directions that the patient may lose the libido, the desire, and it has nothing to do with the caregiver and their attraction, right? It’s a physical change that the therapies that we give may diminish some of this physicality. So, explaining that to the patient and their caregiver, but also giving them that support. Having them be able to talk to a social worker, having them being able to talk to a therapist and say, “This is what I’m experiencing. How do I cope with this?”   

Mental Health

There’s a stunning statistic that one in four cancer patients experience depression (https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq). Depression isn’t just feeling sad, as is natural with a cancer diagnosis. Depression is a real medical diagnosis with symptoms, which can range from lack of interest, weight gain and insomnia to suicidal ideation. Most importantly, depression is a condition with a wider than ever range of treatments. 

I love the lyric from Taylor Swift’s new song: “I’m so depressed I act like it’s my birthday every day.” That’s MY flavor of depression: I have always seemed to be the happiest, least mental health-impacted person you’ve ever met, but that’s not the case. My outside did not match my inside. In 2006, I sought help and began taking antidepressants. I’m so fortunate that i was already taking care of my emotional and mental health when I got my cancer diagnosis in 2010. We adjusted, rather than starting from scratch. 

After getting the right balance of medication and therapy, I felt so much better that I pledged I’d wear a sign saying “I’m on psych meds” if it would help someone else. So that’s this message. It’s okay to NOT be okay. It’s NOT okay to not try to get help. 

If you have tooth pain, you’re going to the dentist, right? Even better, you go for regular cleanings and exams to prevent more serious issues. And, you do your own part to keep problems at bay by brushing and flossing. There are mental health equivalents to all those parts of dental health, and this list will help you find resources. 

Crisis Resources:

Therapy Resources:

  • SonderMind– matches you to a licensed therapist and offer in-person and online therapy. Many insurance/health plans accepted. Talk to a SonderMind Wellness Coordinator: (844) THERAPY.
  • TalkSpace: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • GrowTherapy: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Headway: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Therapy for Black Girls: Therapy for Black Girls is an online space dedicated to encouraging the mental wellness of Black women and girls. Therapist listing for both in-person and virtual therapy. Many therapists are covered by health plans/insurance.
  • National Queer and Trans Therapists of Color Network: The directory is an interactive digital resource that helps QTPoC locate QTPoC mental health practitioners across the country.
  • Latinx Therapy: On-line directory and digital resource that helps locate culturally attuned and inclusive therapy for Latinx community. Some therapists accept insurance/health care plans.
  • Psychology Today – Therapist Finder – A tool to find therapists near you with filters for specific issues like cancer-related psychological distress.
  • Valera– Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • 7 Cups – Provides online therapy and free support from volunteers trained in emotional support.
  • Mental Health America– General mental health resources that can be very useful for those dealing with cancer-related stress.
  • GoodTherapy Another therapy directory that helps individuals find therapists with specific experience supporting cancer patients and their families.

Cancer Support Resources:

Coping With AML | Financial and Mental Health Resources

Coping With AML | Financial and Mental Health Resources from Patient Empowerment Network on Vimeo.

What emotional and financial support is available for patients with acute myeloid leukemia (AML)? Dr. Alice Mims shares advice about how to access mental health support and financial assistance for AML care.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

See More from Thrive AML

Related Resources:

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions

Acute Myeloid Leukemia Care | Who Are the Essential Team Members


Transcript:

Katherine Banwell:

Let’s talk a little bit about mental health resources. Managing the worry associated with a diagnosis or concerns about relapse, or even various side effects can lead to emotional symptoms like anxiety and fear.  

Why is it important for people with AML to share how they’re feeling with their healthcare team? 

Dr. Alice Mims:

So, I think it’s very important because, one, all of those feelings are normal feelings. I think they’re sometimes that from going through such a rapid diagnosis and then having to start treatment pretty quickly and going through all the ups and downs with these types of diagnosis can really lead to for some patients PTSD-type symptoms. And then there are also things that can evolve over time where their anxiety or even survivorship guilt as you go if you move forward and are doing well, where you may have some friends or people you met along the way who may not have had as good outcomes. And so, there are resources available based off of where you are.  

But for survivorship, oncology-specific counseling to deal with some of these feelings that are understandable and normal for what patients have been through. 

Katherine Banwell:

Can a social worker help? And are there other people on the healthcare team who can support a patient’s emotional needs? 

Dr. Alice Mims:

Oh, absolutely. So, I think it’s really place-dependent on where you are but yes, absolutely. Social workers are a great resource for patients. There may be other collaborative teams based off of where you’re receiving your treatment that may be available that are maybe patient support groups where you can go and be with other patients or Facebook, social media support groups. And I think all those can be very helpful. And I know at least at our center, we also have patient mentors who have been through and gotten through to the other side of transplant or whatnot who are great resources, because they’ve lived and experienced it. 

And I think that’s just as a physician, I can talk about things that I don’t have that personal experience having lived through it. And I think that’s very important… 

Katherine Banwell:

Yeah. It’s a… 

Dr. Alice Mims:

…to be able to have somebody to talk to. Yeah. 

Katherine Banwell:

Yeah. What about the financial aspect of treatments? There are many people who would find it difficult to find and maybe they don’t have insurance, or their insurance doesn’t cover a lot. How do you help patients who are dealing with financial restrictions?  

Dr. Alice Mims:

Sure. So, I think that we’re fortunate here because we have a lot of support staff to help patients with our financial counseling team. We also have people within the medication assistance programs who can help find foundation grants to help with medication support, travel support. 

I think for patients who may not have those things available at their individual center, The Leukemia & Lymphoma Society is a great place to reach out for. And there are other foundations as well who at least may have navigators to help patients figure out other resources or funding available.  

Expert Advice | Strategies for Managing MPN-Related Fatigue

Expert Advice | Strategies for Managing MPN-Related Fatigue from Patient Empowerment Network on Vimeo.

Fatigue related to myeloproliferative neoplasms (MPNs) can be overwhelming and may have an impact on other parts of your life. So, what can be done about it? MPN specialist Dr. Naveen Pemmaraju shares advice for understanding and managing this common symptom, including lifestyle choices that may be beneficial. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju

 

Related Programs:

Understanding MPN Treatment Options _ What’s Available for MF, PV, and ET

Understanding MPN Treatment Options | What’s Available for MF, PV, and ET?

MPN Essential Testing | How Results Impact Care & Treatment Options

MPN Essential Testing | How Results Impact Care & Treatment Options

Understanding and Managing Common MPN Symptoms and Side Effects

Understanding and Managing Common MPN Symptoms and Side Effects


Transcript:

Katherine Banwell:

Well, it’s obvious that there’s some symptom overlap along with this.  And so I’m wondering what the strategies are for managing these. Let’s start with fatigue first.  

Dr. Pemmaraju:

Let’s do that.  

Katherine Banwell:

How do you manage that?  

Dr. Pemmaraju:

This is one of the tougher parts of what we do. I’m glad you’re pinning me down to say it, because really this is the majority of what we need to be talking about in the clinic. I’m going to just be honest, you know, with all the scientific breakthroughs and everything, some of these are limited. The fatigue, this is some of the strategies I use and some of the experts in the field. I think one is managing the underlying disease. So, as you mentioned, if you have high-risk, intermediate to high-risk myelofibrosis, one of the great findings of our field is the JAK inhibitor class generally helps to improve symptom burden.  

So, that is the splenomegaly, the fatigue, the pruritus. Maybe not so much the itching, but some of these other things. So, I think treating the underlying disease, that’s okay. Number two is many clinics, onc centers around the country are starting to open up a supportive care or fatigue center clinic. So, I am referring several of my patients there, we’re talking about diet, nutrition, exercise. We used to never talk about these things. Ruben Mesa has found that doing yoga and meditation can genuinely actually help the pathobiology to reduce the cytokine storm and improve the fatigue and quality of life. 

Dr. Angela Fleischman, our colleague at UC Irvine, has done work suggesting that possibly an antioxidant diet such as the Mediterranean diet can help the overall general fatigue, well-being, wellness. And then of course I mentioned earlier, but I’ll mention here too, sometimes fatigue is outside of the MPN. Have you had your TSH or thyroid checked? What about your vitamin D levels? How are you doing on these PCP general checks? Things that may be contributing to the life and the happiness.

And finally, let me make a plug for mental health. I don’t know how much we were emphasizing before the COVID pandemic, but after, the last three or four years have been tough. Healthcare providers, caregivers, patients themselves, mental health checkup, that can also be contributing to fatigue, not getting out of bed, in addition to the organic medical problems. So, let me advocate a multifactorial approach, scientifically summed up as treating what you can with the underlying MPN, fine, treating the side effects and symptoms of the MPN, as you said. 

And then, other, which can be a huge bucket, particularly as we get older, to not forget about that. Again, checking the thyroid level. And then when you’re on these different treatments, you can personalize it. Interferon, obviously, has its own separate set of side effects and then of course the other agents. So, I think that may be the best way to approach it. Maybe a three-bucket approach. The MPN itself, and then the treatment itself, and then the other, something like that.  

Katherine Banwell:

And as you’ve mentioned, it’s all going to be personalized and individualized.  

Dr. Pemmaraju:

Hugely.   

Katherine Banwell:

Right, because what’s going to work for one person is not necessarily going to work for another.  

Dr. Pemmaraju:

Hear, hear, well said to that. You know, you think you make a great diagnosis in the clinic, someone’s having fatigue, they’re on therapy for your MPN. You check the TSH, it’s wildly abnormal. Okay, you refer them to endocrine. Six months later, the thyroid level is completely normal now on thyroid medicine. And yet, the fatigue, brain fog, everything is still not clear.  

The MPN is under good control. What gives? That’s the difficult part of these diseases. So, I really love what you said about the personalization and to keep looking and keep trying. 

Tools for Accessing Quality Prostate Cancer Care

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

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

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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

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

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

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 placebowhich is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 

Niki:  

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

Anthony: 

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

Niki:  

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

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

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

Anthony: 

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

Niki: 

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

Anthony: 

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

Niki:  

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

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

Anthony:  

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

Niki: 

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

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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

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

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

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. 

Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

Related Resources:

How Can Palliative Care Help People With Prostate Cancer?

Strategies for Treating Advanced Prostate Cancer Symptoms

What Is Personalized Prostate Cancer Medicine?


Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important.