Tag Archive for: social worker

Myeloma Care Partners | Advice for Approaching the CAR T-Cell Therapy Process

How can care partners best prepare for supporting their loved one during the CAR T-cell therapy process? Dr. Adriana Rossi, a myeloma specialist, reviews who is typically on a CAR T-cell therapy healthcare team and walks through proactive steps care partners can take to advocate for their loved one. 

Dr. Adriana Rossi is Director of the CAR T and stem cell transplant program at the Center for Excellence for Multiple Myeloma at Mount Sinai Health System in New York City. Learn more about Dr. Rossi.

Download Resource Guide

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

Related Resources:

The CAR T-Cell Therapy Process | How Care Partners Play a Role in Each Step

The CAR T-Cell Therapy Process | How Care Partners Play a Role in Each Step

Which Myeloma CAR T Support Resources Care Partners Lean On?

Which Myeloma CAR T Support Resources Care Partners Lean On?

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

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

Transcript:

Jamie Forward:  

So, who are the other members of the CAR T-cell therapy healthcare team? 

Dr. Adriana Rossi:  

Yeah. It’s really important to recognize just how big that team is. We always have the CAR T physician. That one’s easy. A physician is usually supported by nurse practitioners or physician assistants and nurses that are part of again, getting all of the appointments organized. In all of this, we tend to have CAR T coordinators. Both to make sure the paperwork and the insurance side of things are done. The clinical appointments. But, it’s also important to recognize, as we were talking about, coordination. Transportation. Sometimes, patients need to stay close to a center that’s far from home. 

So, social work and all of those folks become very important. And then, there are a number of different steps with different drugs. So, our pharmacists are very important. And then, beyond that, any of the other doctors that keep our patients optimized. So, if there’s a cardiologist, a pulmonologist, an endocrinologist. All of those physicians working together.  

Jamie Forward:  

As you’re preparing for the CAR T process and you’re meeting with patients and their care partners, what sort of advice do you give them about the process as you’re setting the stage? 

Dr. Adriana Rossi:  
Yeah. I think it’s very important to ask questions and never think there’s a bad question, or a stupid question, or whatever. There are no limits. I know this is a completely new language, and I think it’s important even if you’ve asked it before, keep asking until it’s clear. 

And, don’t ever think you’re bothering us or anything. I’ve heard that, and it just doesn’t compute on our end. We are here to teach and support. Secondly, to take time. I think it’s really important to not think, “Oh, I’ll do this, and then I’ll run off and do something else, and then I’ll come back.” Or, have other commitments. Really allow both the patient and the caregiver protected time to be together and to just go through everything that this journey requires. And, for the caregivers to look after themselves. I think it’s really important when you’re trying to take care of someone who has the label of patient, you need to take care of yourself, as well so that you can then be of use to the process.  

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. 

How Do Psychological Factors Impact Diet During Cancer Treatment?

 

How can diet be impacted by psychological factors during cancer treatment? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss common psychosocial factors, various impacts to diet and nutrition, and strategies to help mitigate negative impacts to patient health. 

Download Resource Guide

See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?


What Role Does Exercise Play in Cancer Treatment?

Transcript:

Lisa Hatfield:

Have you ever wondered how psychological factors could influence your dietary intake during cancer treatment? Understanding this connection is more crucial than you might think. In this segment, we’ll dive into the complex interplay between mental health and nutrition on this Patient Empowerment Network RESTORE program. 

So, Joelys, what psychological factors most commonly affect a cancer patient’s ability to maintain proper nutrition during treatment? 

Joelys Gonzalez:

There are many psychological factors here in hand, but some most important ones will be like anxiety, depression, and stress are the most common ones in cancer patients and can significantly affect their ability to maintain the proper nutrition during and after treatment. For example, anxiety can lead to reduce their appetite or cause a patient to skip a meal altogether, because they’re super anxious about their treatment and sometimes they can actually forget to get their meal of day. Depression might also make it difficult for patients to find motivation into prepping a meal themselves, or even buying a meal.

Sometimes they could, specifically if they live alone, sometimes it’s hard to just think yourself, what can I eat? What should I eat? And that can cause stress. That’s where the stress comes, whether from the diagnosis itself, or it could be financial concern or worries about a family member. That can lead to a patient to have erratic eating patterns. And sometimes they can also, they might overeat as a coping mechanism, while there are others that might lose their appetite completely and not even recognize that they have lost their appetite or if they had a meal of the day. Additionally, this can also cause cognitive changes like chemo brain. We have all heard about chemo brain, we forget, or foggy brain.

This can also affect the meal planning or prepping. This can make it very challenging as many patients can lead to unhealthy eating habits. It’s also worth noting that taste can also change during treatment, which can also be a really huge side effect that many patients go through. As we can know, previously maybe a person, a patient enjoyed certain foods. Now they might not be able to taste that food, and they might find it unappealing. And making the patient’s ability to eat well, super complicated.

And I feel like to help address these issues, I have been working with patients closely to identify these psychological barriers and creating some coping skills or some coping strategies that can make it easier for them to eat or to make some easy to prep meals more enjoyable such as small meal prepping, like, just involving your family or friends overall to make something that you used to, that you used to like, or that you used to enjoy. That can help also a patient kind of overcome that barrier by having also the emotional support that many can gain from counseling or support groups or their family members or their neighbors. It could be anyone. Also, like for example, a puppy. You could have a puppy providing you emotional support.

I am a huge fan of puppies, and just recognizing and addressing these psychological factors is very crucial in helping a patient maintain their nutrition and overall health during and after treatment. And not just patients but also the care partners. Care partners also go through those challenges, especially wanting to make sure that the patient is eating well or that the patient is getting the correct nutrition.

Lisa Hatfield:

Okay. Thank you so much. 

Lisa Hatfield:

So for both you, Nicole and Joelys. We’ll start with Nicole. first. What strategies can be employed to help cancer patients overcome psychological barriers to healthy eating, such as anxiety, depression, or changes in taste and appetite? 

Nicole Normandin Rueda, LMSW:

So piggybacking off of what Joelys just offered, I think that really utilizing your health care team and all the resources available is going to be critical. So we want to make sure there’s nutritional counseling available.

So a lot of times, for example, a lot of times getting enough protein is difficult because, I mean, if you’re not eating a whole bunch of chicken all day, I mean, it’s hard to get enough protein in all three meals. So, things like Ensure or Boost or whatever, whatever it is that your health care team recommends, not only can they recommend it, but usually there are social workers that can help you get, either coupons or discount codes or whatever, because the cost can also add up. So that’s a huge strategy, right? Utilizing your network, your health care team, to really make sure that you’re helping alleviate any of those issues that you may be having is first and foremost.

Next, I would say, if you needed it, there are cognitive behavioral therapy techniques, as well as like behavior change techniques that you can use, and you can go through with a counselor to figure out how you can change your thought process and help set goals, monitor, food journals, all these little things that for some people super helpful, other people, maybe not so much. Other people might just be like, hey, I just need to remember to eat something today. I need to be able to keep my food down in order to take my medicine. So that’s where we’re going to prioritize our efforts, right?

And then also, as far as the taste and texture thing. There are texture things that some people either can no longer handle or have never been able to handle really. And so we want to make sure that we are encouraging or offering suggestions that are helpful. But also, there are things that happen with side effects when it comes to your mouth, your salivary glands, your taste buds, all of that, your throat.

There are side effects that so many different patients with cancer experience that are not really talked about. And so we have to make sure that we are just on top of it. So we’re making sure that if you’re not eating something, if you’re not, if you don’t go near a certain food, what’s the reason there? And then we can offer suggestions if we need to. Another thing that is difficult to do is mindful eating. And what does that mean, right? Promoting like slow eating. So there are chemicals in your brain that whenever you are eating too fast, your body doesn’t understand, like it takes a while to catch up and say, oh wait, I’m full or oh you know what, this is not what I needed right now.

So we want patients to just slow down. Make sure you are listening to your hunger, like, if you don’t really think about it, sometimes you’re like, oh my goodness, it’s gone eight hours, and I haven’t had anything but an apple. That’s not going to be helpful long term.  So we want to make sure we’re having patients understand the consumption process, what it looks like, how often should I be eating, and what are the meals, what should they look like? Are berries enough, or do we need to add like a protein, some walnuts in there to eat the berries with the walnuts?

What is it that I need to do in order to make sure that I am meeting these nutritional recommendations? 

Lisa Hatfield:

Okay, thank you, Nicole 

Lisa Hatfield:

And, Joelys, do you have anything to add to that? Different strategies that can be employed by cancer patients to help overcome those barriers to eating healthy? 

Joelys Gonzalez:

Honestly, I want to piggyback on what Nicole said. She mentioned most of the strategies that I can possibly think of at the moment, but making sure you work closely with your healthcare team. It’s very important. That could be either the dietitian or your mental health professional making sure that you are having a unique personal plan for you. That’s very important, not just for the nutritional needs of a patient but also for the psychological needs.

For example, like I mentioned before, anxiety and depression, if you’re feeling anxiety and depression, psychological support might be like counseling or therapy can be super beneficial, because they can help you manage those emotions and find motivation and for eating again. Also, for example, you mentioned the changes of taste, you can also continue to try small spices or different spices or different texture until you’re able to get to that comfortable space that you’re looking for. And not just trying to give up at the first hand, I know it can be tough.

t is tough to be focusing on whether your mental health or your nutrition, but also being able to focus on having to celebrate that little small step. It’s very important to continue motivating yourself. And also, I encourage having small meals. Don’t think about it as a full meal perspective when you’re looking at your nutrition, because starting small is better than starting big and being disappointed and having that disappointment or overwhelming feeling.

Lisa Hatfield:

You heard it here directly from our experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

What Role Does Exercise Play in Cancer Treatment?

 

How can exercise benefit cancer patients? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss the benefits of exercise to cancer health and recovery, recommended exercise types, and tips for patient support and maintaining some level of activity. 

Download Resource Guide

See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

How Do Psychological Factors Impact Diet During Cancer Treatment?

How Do Psychological Factors Impact Diet During Cancer Treatment?

Transcript:

Lisa Hatfield:

How can staying active during cancer treatment benefit your overall health and recovery? In this Patient Empowerment Network RESTORE program, we’ll explore the vital role of exercise in cancer care and uncover how incorporating physical activity into your treatment plan may enhance your well-being and support a better outcome. 

Joelys, how can physical activity be safely incorporated into a cancer treatment plan? And what types of exercises are most beneficial for patients? 

Joelys Gonzalez:

Well, incorporating physical activity into a cancer treatment plan requires more of a personalized approach, considering the type of cancer or the treatment being received or the overall health. I often start this discussion with patients by letting them know the importance of exercising during and after treatment, explaining how it can help manage side effects such as fatigue, stress, and depression. I usually recommend starting with low impact activities such as swimming, walking, or gentle yoga, as long as, of course, the patient is able to move around, whatever you’re capable of, which can be just adjusted based on the patient’s energy levels and how they’re feeling on day by day. Of course, if they’re feeling low, they can start doing small activities, light activities, such as moving your fingers or moving your head around. 

I also stress the importance of listening to your body, making sure you know how your body works, and making sure that you’re not overstressing your body. It’s very important. Resting as much as needed. It’s very important to be able to stay active. To ensure safety, I encourage them to check in regularly with their healthcare team just to make sure that they are having a tailored, a personalized plan, a personalized exercise plan with them. That could be involving physical therapists or their dietician to make sure that they have a unique plan. And by making physical activity as flexible as possible and adaptable to their part of their daily routine, patients can enjoy its benefits without feeling overwhelmed and alone.

Lisa Hatfield:

Thank you for that. And I really appreciate your comments. And I know Nicole and I have talked before, even small movements like moving your fingers and your toes or any movement is better than no movement, because sometimes we are just flat out too exhausted or in too much pain to do much more. So I appreciate you saying that for patients that you can do any little movement and that’s beneficial. So thank you. And, Joelys, what are the potential benefits of maintaining an active lifestyle during cancer treatment, particularly regarding treatment outcomes and overall well-being? 

Joelys Gonzalez:

Maintaining an active lifestyle during cancer treatment can have some profound effects on both treatment outcomes and the patient’s overall well-being. And when I mentioned that physically, physically staying active helps fight the treatment-related side effects, such as fatigue or muscle loss or weight changes. It could also support the cardiovascular health, which is very important since most cancer treatments can affect your heart. For instance, if you do such light exercise like walking or cycling, that can help you improve your blood circulation, helping you reduce the risk of blood clots or other complications from the treatment.

And this can also help you mentally. Maintaining that regular physical activity can significantly reduce your stress and improve your mood, especially when it comes to anxiety and depression, which are the most common among patients living with cancer. I’ve seen patients who incorporate daily movements into their routine, which has made them stronger than they have been before in the sense of control over their overall health, which boosts their confidence and their resilience during their cancer treatment.

Additionally, exercise has been shown to improve sleep, which is often disturbed during their treatment. And from a social work perspective, engaging in group activities or even walking with a friend or a family member can reduce your feelings of isolation, the feelings of being alone, and it can actually help you in building that support network that you need through your cancer journey, which is very very important. I really reiterate that having someone next to you not just to talk and just to make small exercise that can help you a lot during your cancer treatment, and the overall maintaining an active lifestyle helps patients manage their treatment better and contribute to a higher quality of life during and after cancer treatment.

Lisa Hatfield:

Nicole, how can healthcare providers effectively support and motivate cancer patients to stay active despite the challenges posed by their treatment? 

Nicole Normandin Rueda, LMSW:

Great question. So healthcare providers are often the first line of defense, right? And so they have this unique opportunity to really invest in getting to know their patients, which will then in turn…it will be the strategy that they use whenever it comes to tailoring the actual like exercise plan, for each patient. What that means really is that we get to know the patient’s needs, their abilities, knowing a little bit more about their diagnosis or their treatment, the side effects, or potential barriers. The more, the better you can tailor the actual personalized plan for each patient.

That also means not just the oncology team, but all the ancillary services. So your physical therapist, your exercise specialists, there are movement specialists. I mean, there’s a whole, a plethora of resources that can be brought in to help make sure that a patient…their treatment stage, their overall health, any secondary or other diagnoses that they may be managing as well as their just physical capabilities are all things that we want to make sure are very…we’re thinking about those at all times. We want to make sure whatever it is that we’re asking them to do is safe and achievable and aligned with their needs.

The encouragement from your oncology team and hearing that you know what you’re doing great, your small steps are baby steps, but they are steps and we are proud of that. Kind of that affirmation is huge. The next thing I would say would be setting the realistic goals and being on top of the potential barriers. So we all know how great it feels to check something off a box or cross something off a list, right? So we want to give patients that sense of pride and the sense that they are able to do whatever it is that we’re asking them to do, even if it’s very small and manageable.

Our goal is to help alleviate any potential future issues or current issues, secondary to their diagnosis. So if that means it’s fatigue, if it’s pain, if it’s the circulation, all of these things that we want to alleviate or inhibit from happening or getting worse, that’s important that patients know why we’re asking them to do something and setting the goals that are small enough and achievable that they can feel that sense of accomplishment is a big deal. Again, I mean, I can’t say this enough, I want every patient to know they are not alone. There are fantastic resources online to get, even if it’s stretching exercises.

I mean, there are things that are tailored to people with cancer that are absolutely incredible and free, that patients should be able to have the support that they need. Not just emotionally, but also physically, if that’s in-person or virtual, there are resources available that can help get whatever it is that patients need under their belt and so that they have the tools they need to go and accomplish whatever it is that they are being asked to accomplish. And that gives them that sense of pride that also makes it usually a success story, right? At least for that small piece of their treatment, they can say, I was able to do what it is that you asked me to do. That’s great.

And healthcare providers, like I said, are the first line of defense. They’re the ones that are checking in and asking the questions and so making sure that we’re always asking, but also listening to what it is that patients are saying. So if they’re saying, no, I didn’t really get around much today. Maybe we need to tailor what it is that your homework is going to be for the next week or whatever, to make sure that you are getting what it is that you need from us. 

Lisa Hatfield:

Okay. Thank you. And I appreciate that you talked about even celebrating the smaller, what seems to be smaller accomplishments. Like, sometimes if you can walk even five feet a day, you’re trying to walk again, even that, Yay, that’s exciting. Instead of thinking, well, before I used to be able to walk a half a mile or whatever. I think celebrating those small, those smaller steps are just as important. So thank you for bringing that up. It does give patients a sense of pride. You’re right.

Nicole Normandin Rueda, LMSW:

Absolutely.

Lisa Hatfield:

Well, you heard it here directly from the experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? PEN Program Manager Joelys Gonzalez discusses her methods for empowering patients, holistic approach to care, and the impact of patient empowerment on health outcomes. 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?


Transcript:

Joelys Gonzalez:

Empowering patients is central to my work as a social worker. For me, this means providing patients with the knowledge, the tools, the confidence they need to actively participate in their own care and actually advocate for the best healthcare that they can possibly obtain. And this could be by educating them about their diagnosis, treatment options, or what to expect during and after treatment. This can help reduce the fear and anxiety, allowing them to make informed decisions.

I also focus on promoting self-advocacy, encouraging the patients to communicate their needs and their preference, not to stay quiet, and just make sure that their words are being heard, to make sure that they are having the best access to the resources as well that can support them during their overall health. And I believe that this holistic approach in addressing not just the physical, but also the emotional, social, and psychological aspect of care ensures that patients are not just surviving cancer, but they are thriving. Empowering patients is super important to me, because it just restores that sense of control of what can be a super overwhelming situation.

Being able to have that control from day one, it’s super important, because it makes you part of your own treatment, of your own cancer journey. And from day one, cancer can take away a lot of it. But by empowering patients, we can help them regain their autonomy and their dignity. Empowered patients are often more engaged in their care, which leads to better outcomes and to lead to better communication with their healthcare team. And ultimately, the goal about this is to help patients feel supported, informed, and confident as they are navigating their journey, knowing that they are actively participating in their own care and making sure that they are engaged in the shared decision-making with their healthcare team is super important.

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Cynthia Thomson from the University of Arizona discusses her approach to patient empowerment, how patient goals can vary, and her perspective on supporting patient lifestyle changes. 

 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?Dr. Akriti Jain: Why Is It Important for You to Empower Patients? Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Cynthia Thomson:

Cancer patients are amazing individuals. They really are committed to their health and well-being, and they’re also committed to the health and well-being of so many around them. So I empower patients by really helping them to think internally about what it is they want to accomplish in terms of lifestyle, what it is that really is important to them. Is it getting down on the floor and playing with their grandchild? Is it being able to have regular bowel movements every day? Is it to handle all these symptoms, maybe long-term fatigue or whatever, and really try to meet them where they are so that they really can achieve the goals that are important to them, not what’s important to me.

And I think that as I’ve worked with patients over decades, what I realize is that when you start where they are and support the patient along the way, they will make positive change. A lot of people will say, oh, no one will change their diet.

People aren’t ever going to eat healthy. Why do you worry about that? And I say, well you know, if that were the case, I think I would have quit doing this a long time ago. I would have realized that. But the opposite is true. People are looking for support, for information, for that opportunity to empower themselves to be healthier. They want to be healthier. It’s just that sometimes they need some help along the way to figure out what it is they need to achieve that goal.

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.

A Look at Promising Strategies to Improve CAR T-Cell Therapy Access

A Look at Promising Strategies to Improve CAR T-Cell Therapy Access from Patient Empowerment Network on Vimeo.

How can CAR T-cell therapy access be improved? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center explains strategies that have increased CAR T access, monitoring of CAR T patients, and advice for patients to access support.

[ACT]IVATION TIP

“…talk to your teams, if it’s not the doctor, at least the nurse practitioner or the nurses about resources, because through the pharmaceutical companies as well as things like LLS and other places, they actually have funds for people going through trials or CAR T therapies, etcetera, that we can help. My nurse knows all these things that she knows how to start working in our social worker and our case managers, they all know all these things so that they can get you the resources you need…”

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See More from [ACT]IVATED CAR T

Related Resources:

How Can Variable Patient Groups Be Addressed in CAR T?

How Can Variable Patient Groups Be Addressed in CAR T?

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Are CAR-T Clinical Trials Studying Use As a Frontline Therapy?

Are There Myeloma Trials Investigating CAR T for Frontline Therapy?

Transcript:

Lisa Hatfield:

Dr. Patel, given the exacerbation of existing barriers during the COVID-19 pandemic, what strategies do you believe are most promising for enhancing patient access to CAR T therapy, particularly in terms of innovative clinical trial designs and stakeholder collaboration? And one of the questions that comes up a lot is during COVID I was able to participate in a clinical trial, but I could do some things closer to home where we don’t have a big center. Are those strategies still in play? So patients might be able to travel, maybe once a month or once every two months for a CAR T trial and then go home for a little while. Can you talk about that a little bit?

Dr. Krina Patel:

Yeah, I think COVID did help us learn how to use telehealth much more, where when it was allowed, I think the good news when we had it, we could do it for all 50 states. It was amazing. All my patients I could talk to through virtual visits, etcetera, use their local labs. Clinical trials are a little harder because you have to have labs that are certified and making sure that they’re able to do those intricate labs that you need.

For instance, certain things are central labs for where they have to look at your T cells and how they’re expanding over time while you’re getting CAR Ts. So we call those central labs because those are labs we draw and send to the company, to whatever lab they’re using to help with that stuff. Things like CBC, your blood counts, your kidneys, liver. Yes, those things are easy to get anywhere. There are multiple labs like Quest and Labcorp, etcetera, that can do those.

So I think those are things that we can help with. It’s the first 30 days of any CAR T study that for safety reasons right now, we still say you have to be at the center where you’re getting the CAR T on trial or even off a standard of care. And that’s more for if you get one of these toxicities like the delayed neurotox or an infection, that we can get you back into the hospital if needed or at least get you diagnosed really quickly and treated quickly.

But yes, after those 30 days, at least most of our CAR T studies really try to limit how often you have to come in. So once a month is pretty typical and then once every three months after the first couple of years, and then once a year if that. I hope that with the FDA and with our sponsors, our pharmaceutical companies that run these trials, that they can really help get these things, the logistics figured out, because that’s what it ends up being. Once you’re done with your first at least three months of CAR T, we know patients are going to do well. And it’s really about whatever labs and visits we need to do, how can we do them virtually? And again, if my sponsors and the FDA would allow that, we’d be really happy to.

And I know the FDA is all for it. They are trying to help increase access as well. And so some of the bigger centers like us, and I think Sloan Kettering and City of Hope and Mayo, we also have other centers that are outside of the main campus. So MD Anderson doesn’t have other hospitals the way Mayo does. So Mayo has Arizona, has Rochester, and Florida. MD Anderson has a sister network.

And so we’re hoping to tap into that one day, because there are places everywhere. And if we can do that, that would actually help get access to a lot of these novel therapies a lot faster to our patients. And within Houston, just being such a big city, we have four other centers out in the outskirts and we are trying to actually increase our abilities to do therapies there as well, including CAR T and bispecific therapies.

Lisa Hatfield:

Thank you for that, Dr. Patel. So one question, I have a follow-up question. If a patient has to travel, maybe they live in an area where there is no academic center, they’d have to travel for a clinical trial. And you mentioned the first 30 days. Are patients usually, one of the big challenges is financial, is a financial challenge. Are patients sometimes feeling well enough during that 30 days if they can work remotely? Can they work remotely while they’re at your institution for 30 days? Is that pretty typical or is that something you don’t see very often?

Dr. Krina Patel:

Yeah, no, that’s a great question. So we are trying to make the whole thing outpatient soon, and a lot of our trials are allowing for CAR T outpatient, and only if you get a fever, then we admit, most people do get admitted because most people get fevers from the CAR T, but for the most part patients still feel well, it’s not that they’re having this horrible nausea, vomiting, diarrhea, things that we think about with auto transplant, where people really can’t work because they’re just exhausted. The majority of our patients are bored in the hospital, it really is that we’re just there just in case the fever turns into something worse. So a lot of my patients who are still working actually do work remotely, I can think of a few just this past week that talked about the fact that they were able to do this.

And I think the other piece we have so many resources. And again, the big activation tip here is talk to your teams, if it’s not the doctor, at least the nurse practitioner or the nurses about resources, because through the pharmaceutical companies as well as things like LLS and other places, they actually have funds for people going through trials or CAR T therapies, etcetera, that we can help.

My nurse knows all these things that she knows how to start working and our social worker and our case managers, they all know all these things so that they can get you the resources you need and some of the centers, our academic centers have resources as well. We have housing for free, you have to sign up for it in advance, but you might be able to get housing for free for that whole 30 days, and so there’s a lot of different resources that you just have to ask about, and then again, through our social worker, case manager, nurses, and sponsors. We can actually get some of that for you too.


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How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups? from Patient Empowerment Network on Vimeo.

How do AML genetic and molecular subtypes vary by population groups, and what are the  impacts? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses AML characteristics that impact some population groups and patient advice for overcoming barriers to AML care.

[ACT]IVATION Tip

“…communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too…”

Download Resource Guide | Descargar guía de recursos

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Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the genetic and molecular subtypes of AML among different population groups, and how do these differences influence disease progression, response to treatment, and survival outcomes?

Dr. Sara Taveras Alam:

That is a great question. We know that in acute myeloid leukemia in general, the molecular characteristics and genetic characteristics are of prognostic and therapeutic value. We do know that Black patients have a higher risk of poor risk cytogenetics and a higher risk of not responding to treatment as well as a higher risk of complications from treatment. Some of my work actually also evaluated that Hispanic patients with comorbidities fared much worse than other populations with comorbidities.

So we always have to think about the patient as a whole and provide care that target the leukemia, but also take into consideration all of the characteristics of our patients that we’re serving. Some of our patients may have a higher difficulty accessing care or continuing care, obtaining their medication, and that too may impact their treatment outcomes.

My activation tip for this question would be to communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too, so there are a lot of barriers to care that come from the patient socioeconomic circumstances, which is not necessarily specific to race or ethnicity, but may be associated since we know that some of our minorities will live in places where they’re below the poverty index, and if we don’t help them with these things, they might not have the best outcome. 

Lisa Hatfield:

If you have a patient who does have some kind of barrier to access, whether it’s to their medications or to getting to treatment transportation, can they talk with you or the nurse, or is there a social worker at most facilities? Who would they mention that too, if they had an issue with access?

Dr. Sara Taveras Alam:

I think that the best thing is to mention it to everyone that you encounter in the healthcare system, definitely in terms the sense the social worker may take charge, connecting the patient with resources that are available. In my institution, we have a navigator that also helps connect patients to resources, but also as a provider, I’ve been in the position of sharing names and contacts of certain institutions that may be able to help the patient, I’m not sure if it’s appropriate to tell the name here, but there definitely may be things available for the patient that different members of the team may be knowledgeable about, so my recommendation would be to mention whatever barrier you have to each person that is connecting with you from your healthcare team, social worker, medical assistant, nurse, doctor. The more people you mention it to, the higher the likelihood, that it will be taken care of.

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Accessing Financial Resources for Lung Cancer Care

Accessing Financial Resources for Lung Cancer Care from Patient Empowerment Network on Vimeo.

Is there financial support for patients that need assistance with the cost of lung cancer care? Dr. Erin Schenk shares advice and resources available to help alleviate the financial burden that some patients and care partners may experience.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk.

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Transcript:

Katherine Banwell:

You know, one thing patients are often concerned about is the financial aspect, the financial burden that is involved in their treatment care. How do they deal with that? Are there resources available for them? 

Dr. Erin Schenk:

There can be and this definitely can vary based on what treatment you’re being given and where you are, at what institution and what state you’re being treated at since resources are different. But for example, the targeted therapies or the TKIs I made reference to earlier, those can have some significant out-of-pocket costs and most of the,  if not all of the manufacturers of those various TKIs have patient assistance programs that help to reduce the out-of-pocket costs for those specific medicines.  

When I prescribe a TKI for a patient often what’s part of that is a prior authorization to try to understand what’s the out-of-pocket cost for the patient and then kind of get on top of whether or not we need to apply for patient assistance to help pay for the cost of that medication. So, that’s one way that we can help. 

I think, in again, this is specific to my institution and our clinical practice, but we often have – we work very closely with other cancer doctors in the community. So, if traveling to our site is a major burden we can usually have them visit with a oncologist who’s close to them so there’s less travel, there’s less costs in you know gas and staying somewhere. But they still can be connected with us. So, while they can get most of their care under a doctor that’s closer to them, every so often they come back and see me and just talk about how things are going and what you know might be worthwhile to consider down the road.  

And I would also recommend that if there are other costs or concerns you know, kind of above and beyond these things that we’ve touched on, connecting with a social worker through the cancer center can be helpful in dealing with paperwork for disability or retirement or sometimes connecting to resources if there’s a childcare need. 

Or you’re caring for a spouse and you need additional help at home. You know all of the different burdens that are present in life that just get magnified with a cancer diagnosis and you know, we can – there’s usually a really big attempt to try to find a way to help figure out navigating those so that you can get the care you need.

Key Resources for Small Cell Lung Cancer Patients and Families

Key Resources for Small Cell Lung Cancer Patients and Families from Patient Empowerment Network on Vimeo.

What’s important for small cell lung cancer patients from underrepresented communities to know? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for patient resources, his perspective about lung cancer stigma, and ways to mitigate issues with stigma.

[ACT]IVATION TIP

“…make sure that you ask your doctor, ‘Well, what about palliative care? What about social worker?’ or ‘I’m having trouble with this or that. Who can help me with this?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Transcript:

Lisa Hatfield:

What key resources and support services do you typically recommend or provide to SCLC patients, particularly from underrepresented communities following their diagnosis?

Rafael Santana-Davila:

That is a good question that I don’t know the right answer to. So part of the resources that we share with the patient is a visit with a social worker, a visit with a nutritionist, a visit with our colleagues in palliative care, that they’re all part of treatment of the patient with cancer that is available both for patients of underrepresented communities or other patients.

So that is the activation tip for that is make sure that you ask your doctor, “Well, what about palliative care? What about social worker?” or “I’m having trouble with this or that. Who can help me with this?” And like we said before is a patient empowerment is…a patient that is empowered is a patient that asks all those questions and receives more help. There’s a lot of help that is out there and the key is to connect those individuals.

Lisa Hatfield:

What is your advice for a patient living with small cell lung cancer in rural areas who might not have access to state-of-the-art cancer care?

Rafael Santana-Davila:

Yes. So first of all, although people living in rural areas do not have access to major cancer centers…or let me rephrase that. They do not live in major cancer centers. Thanks to technology, they do have access. How? With telehealth. A lot of things that I do, which is medications, they don’t really have to see me for treatment. I can give advice on the treatment that can be instituted anywhere. So patients that live, again, in Eastern Washington, which is a rural part of the state, can see me through telehealth, and I can help them and their physicians who are not sub-specialists to direct their care.

And again, it’s important to know that it’s not that we’re smarter than the general community oncologists. We’re not. We just have more experience in this disease. We’ve seen a lot of things that happen, so we are able to recognize things when they happen and just have access to more clinical trials. So the activation tip for that question is make sure that…we said that before, that you seek a second opinion.

And that may not involve travel for many hours. That may be as simple as a telehealth appointment with a major cancer center of such state to know what is available. And also know that many clinical trials can now actually pay for lodging and pay for transportation to those centers. So although it’s going to be trickier for them to receive them, living in a rural area does not mean that you’re not eligible for that.

Lisa Hatfield:

Have you encountered any misconceptions or stigmas related to small cell lung cancer within underrepresented communities? And how do you address or mitigate these issues with your patients?

Rafael Santana-Davila: 

There is a lot of stigma in this disease. We know that in the great majority of patients with small cell lung cancer and lung cancer in general, there is a smoking component to it. So patients feel that this is something that they brought upon themselves sometimes and there’s a lot of stigma associated with it. And that is not true. Yes, this is a smoking-related condition, but smoking is an addiction. Patients do not smoke because they want to. They smoke because they get addicted to it.

Everybody that I’ve met who’s a smoker at some point has wanted to quit and they cannot quit, not because they don’t have the willpower, or not because they’re weak, it’s because they can’t. This is an addiction. And it’s actually cancer, both small cell and lung cancer happens in the minority of smokers. So it’s important to know that this is…yes, quitting smoking could have prevented this cancer, but quitting smoking is nothing that is easy. And even if they quit smoking, this could have come.

So it’s important to patients to know that this is not…they should not blame themselves. This is both for underrepresented minorities and the patients at large. Don’t blame yourself for this. This is nothing that you could have prevented. And this is not your fault that this happened to you.” The activation tip for this is there’s a lot of what patients need to talk about, a lot of things, and these are hard conversations that you need to have. They’re not comfortable many times, but you need to open up. You need to have these conversations with your family, and you need to really say what’s in your heart. So that would be my activation tip. 


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Acute Myeloid Leukemia Care | Who Are the Essential Team Members?

Acute Myeloid Leukemia Care | Who Are the Essential Team Members? from Patient Empowerment Network on Vimeo.

Acute myeloid leukemia (AML) care is not just monitored by an oncologist or hematologist – there’s an entire medical team. Dr. Jacqueline Garcia, an oncologist and AML researcher, shares an overview of the various members of the healthcare team and the role they play in overall care.

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

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Transcript:

Katherine Banwell:

Typically, there are a number of team members to care for a patient. Who is part of an AML healthcare team?  

Dr. Jacqueline Garcia:

Absolutely. We definitely cannot work on our own. Our team is very large, and it’s because these patients require a lot of support. At a bare minimum, a healthcare team will include at least one physician or an oncologist. The AML healthcare team might also include a second oncologist – that could be a bone marrow transplant doctor.  

Other members that are very critical include having a mid-leveler available that’s a physician assistant or a nurse practitioner. Often, an oncologist who runs a busy practice, who takes care of patients that could be very sick, like AML, they work in partnership with often very talented physician assistants and nurse practitioners. I know I do.  

In addition to that, I’m at an academic center so I’m super fortunate. I have really amazing and very smart hematology oncology fellows and residents that also follow to learn how to take care of patients. But we also, in the background, that patients don’t see – we have a pharmacist that helps us with making sure that drugs are prescribed correctly. They often call the patients with oral therapies to follow up. We have financial resource teams to help patients, to link them to LLS for support for bills that might come up, or transportation, or linking them up to other services that could help to defray or reduce costs.  

So, the healthcare team is quite extensive. But in terms of those that are patient-facing, it’s primarily the MDM that are mid-leveler. Some teams operate also with a nurse or a nurse care coordinator. That’s pretty common, too. And that person helps to not only schedule but also to answer pages or phone calls from patients if the medical team is not doing that.  

Katherine Banwell:

What about a social worker or psychologist? 

Dr. Jacqueline Garcia:

Oh. Yes. Yes. So, absolutely. So, every patient can be offered, if needed, access to an inpatient or outpatient social worker. Often, if my patients are admitted we have them see a social worker because that’s fairly seamless. Otherwise, for outpatient, if we identify any particular needs or there’s an interest, we’ll link them up with a social worker. This is the same that goes for physical therapy, or nutritionists, or those other ancillary services that can be really critical when patients are getting started.  

Treatment Options for Advanced Non-Melanoma Skin Cancer

Treatment Options for Advanced Non-Melanoma Skin Cancer from Patient Empowerment Network on Vimeo.

Treatment options for advanced non-melanoma skin cancers are ever-changing. Dr. Diwakar Davar reviews current treatment options and discusses which medical professionals are involved in treating advanced non-melanoma skin cancers.

Dr. Diwakar Davar is the Clinical Director of the Melanoma and Skin Cancer Program at UPMC Hillman Cancer Center. Learn more about Dr. Davar.

Download Guide

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Emerging Treatments for Advanced Non-Melanoma Skin Cancer: What’s Showing Promise?


Transcript:

Katherine:

What approaches are currently available to treat these more common forms of advanced non-melanoma skin cancer? 

Dr. Davar:

Right now, the most common mode of treatment is typically treating cancer that is localized.  

Again, even with the extremely increasing incidence of these cancers, the vast majority of cancers that we detect are still localized and are amenable to easy surgical eradication by a trained dermatologist or a trained mole surgeon. A trained dermatologist, a trained mole surgeon, a plastic surgeon, these are commonly the physicians that encounter these patients. Surgical removal is still the primary mode of eradications of these lesions. However, increasingly, there is a role for early systemic therapy and local regional therapy to improve patient outcomes for reasons that we can talk about. Still, the vast majority of patients are still treated surgically and then increasingly, there is the role for referral to medical oncologists and radiation oncologists to talk about alternative forms of treatment that may be needed after that. 

Katherine:

What sort of alternative therapies? Are you looking at targeted therapies? Immunotherapies? 

Dr. Davar:

The primary reason for which advances have happened in this disease is really the advent of effective systemic immunotherapy and the spillover of immunotherapy into the patient landscape in these diseases. The reason for that is as follows. Immunotherapy essentially is most effective in tumors that carry a high tumor mutation burden. For example, melanoma has a tumor mutation burden on average of about 15, and the tumor mutation burden in melanoma is driven by the fact that melanoma, cutaneous melanoma is an ultraviolet light-driven skin cancer.  

However, non-melanoma skin cancers have tumor mutation burdens that are many, many magnitudes higher than that of melanoma. For example, the median tumor mutation burden in cutaneous squamous cell carcinoma is 50. Melanoma is 15. The median tumor mutation burden in cutaneous squamous cell carcinoma is three times that of melanoma. Similarly, for Merkel cell carcinoma. A large majority of Merkel cell carcinoma is caused by an unusual virus known as a Merkel cell polyomavirus. Both the viral driven tumors and the non-viral driven tumors have high tumor mutation burdens, and the same is true of basal cell carcinoma because of ultraviolet light exposure.  

The primary reason why immunotherapy has gotten a foothold in these diseases is because the underlying etiologic agent that drives carcinogenesis, ultraviolet light for the majority of these, and the Merkel cell polyomavirus for the subcategory of non-melanoma skin cancer that is Merkel are both associated with a response to immunotherapy.   

As a result of that, immunotherapy, anti-PD-1 immunotherapy is now standard of care for patients with tumors that are either locally advanced undissectible or locally advanced and/or metastatic, that is, that they have spread. They are now available for use and FDA-approved for this indication in both Merkel, basal, as well as non-melanoma cutaneous squamous cell carcinoma. 

How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources from Patient Empowerment Network on Vimeo.

If you need help paying for myeloma care, where do you start? Yu Mee Song, an oncology social worker, reviews several resources, including copay assistance programs and advocacy groups.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Katherine Banwell:

Yu Mee, many of the newer myeloma therapies can be quite costly. If a patient is seeking financial support, where would you suggest they start? 

Yu Mee Song:

Many of the pharmaceutical companies provide financial assistance  if you meet their eligibility criteria.   

So, you can start there with – with the help of your oncology social worker. There are other great organizations that provide a significant  copay assistance and also  reimbursement with your insurance premiums and coinsurance. Some of the ones that we use often are, Leukemia & Lymphoma Society, HealthWell Foundation is another great organization, PAN F is another organization that provide copay assistance, and P-A-F Copay Relief Foundation.  

Katherine Banwell:

Okay. And, uh – uh, you as a social worker would have that information for a patient to – to direct them in the – the right path. 

Yu Mee Song:

Yes. Yeah. Because they would also need assistance from us and the physician, verifying certain – that they’re in treatment.  

 Katherine Banwell:

Right. Yeah. That makes sense. 

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.