Tag Archive for: myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

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Why is a care partner essential for someone undergoing bispecific antibody therapy for myeloma? Dr. Craig Cole, a myeloma specialist, discusses the essential role of care partners following treatment, emphasizing the importance of monitoring for potential side effects. 

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole. 

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

 Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

What is the role of a care partner for someone undergoing bispecific antibody therapy? 

Dr. Craig Cole:

Yeah, the care partner is, I think, a critical component of someone receiving bispecific therapy. And their reason is really to do with the side effects and monitoring the side effects of the therapy. What’s the big side effect of the bispecific antibodies is again when those T cells engage the cancer cells and they find the cancer, they release chemicals to destroy the cancer immediately.  

And those chemicals are from the T cells, can cause people to feel very ill, or can cause them to feel very ill very quickly, or they can have fevers, and they can have difficulty breathing. And that’s called cytokine release syndrome. Cytokines are the chemicals that the T cells are using to kill the cancer cells.  

Release, meaning that T cells are releasing that, and syndrome mean that different things can happen to different people. And the highest risk for the cytokine release syndrome is usually within the first two to three treatments, usually in the first two or three days of the therapy. And a lot of times when people get the bispecific antibodies, sometimes it’s given in a brief hospitalization like an overnight hospitalization, but then they go home.

And then the trick is monitoring for that cytokine release syndrome, the fevers that can be associated with that, shortness of breath, low blood pressure. And in having a couple people observing, watching for those signs and symptoms are really important. Because if cytokine release syndrome isn’t addressed immediately, it can progress to worse outcomes, meaning that the blood pressure gets lower, the difficulty in breathing gets worse.  

If let completely go, people can end up in the intensive care unit which is very, very, very rare. But that’s why we address this as early as possible. The other side effect, and probably kind of the most subtle thing, are some of the neurologic things that can happen with the bispecific antibodies. So, it’s the neurologic toxicity, or some people call it ICANS. And that’s when some of those cytokines that we talked about that are from the T cells can cross the blood brain barrier and cause patients to be confused.  

They can have word finding difficulties. They can feel – almost have stroke-like symptoms. They’re temporary, but they definitely need to be addressed. And sometimes patients may not be aware that they can’t find the right word, or they want to speak, and the words don’t come out, or when they speak it’s the wrong words are coming out.  

And that’s a real, real big sign that you need to call your doctor immediately, or your provider immediately if you have those neurologic symptoms. So, watching for those side effects, so low blood pressure, the high fevers, and stroke like symptoms. It’s not a stroke, but it’s just those chemicals in the brain that can cause people to have some neurologic problems. And again, if you address those immediately, they are definitely reversible.  

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

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 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. 

Evolve | What You Should Know About Advances in CAR T-Cell Therapy for Myeloma Resource Guide

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See More from Evolve CAR T-Cell Therapy

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

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What is bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, explains how bispecific antibody therapy works to kill myeloma cells, how the treatment is administered, and which patient type the therapy is most appropriate for.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole. 

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

Dr. Cole, let’s start with some basics. What is bispecific antibody therapy? And who is it right for? 

Dr. Craig Cole:

Yeah, in cancer medicine kind of to describe bispecific antibodies we need to really start with what T cell is.  

Because in cancer medicine the – really all of the bispecific antibodies engage T cells.   

So, T cells are a cell that’s in our bodies which help destroy cancer cells naturally. And so, the T cells, when we have any mutations in any of the cells in our body and it starts to become cancerous, the T cells come in and wipe it out before it even gets started. And so, part of the reason that people get cancer is that those cancer cells find a way to evade the T cells. And usually what they do is they hide. They’re able to masquerade as normal cells, and the T cells that should destroy them just slide right over them or check their ID and say, “Well, you’re okay,” and let them go.  

Then the cancer cells can grow. And so, what the bispecific antibodies do is that a regular antibody is shaped like a Y, and usually both ends are really sticky to stick to anything, usually bacteria, viruses. And that’s the antibody – is the way our immune system fights infection. And antibodies are sticky. They got two sticky ends. What they’re able to do in the laboratory is make one of the sticky ends to an antibody not produced by people but produced a laboratory. One sticky end is specific to the T cell. One sticky end is specific to the cancer cell. And when you give this drug, it brings the T cells that have been ignoring the cancer right up against the cancer cells. And so, all of a sudden, the T cells that destroy cancer that have been ignoring the cancer cells are suddenly made aware of the cancer cells.  

And as soon as they see those cancer cells, they begin to kill the cancer cells. And so, it brings the cancer hunting T cells together with the cancer cell so the T cells can destroy the cancer.  

Katherine Banwell:

Okay.  

Dr. Craig Cole:

And who is it right for? Most, if not all, of the bispecific antibodies that are approved now are for people that that have cancer that’s advanced, that has failed several therapies. And that’s the usual place where new drugs go is for the people who are most in need, the people who have exhausted a lot of other options. And so really it’s right for anyone who has advanced cancer, who needs new therapeutic options. 

Katherine Banwell:

How is this therapy administered and what is the frequency? 

Dr. Craig Cole:

Yeah, so usually for most by bispecific antibodies, they’re administered subcutaneously under the skin, and some are administered IV.  

Some are administered over long periods of time where people go home with infusion packs, and they get it over several days. And some of them are given once a week or every two weeks. And so, it really depends on what type of tumor is being – what the bispecific it is being used for and which tumor is directed towards. 

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

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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.

CAR T-Cell Therapy Support | Questions to Ask About the Process

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What questions should patients ask when considering CAR T-cell therapy? Nurse practitioner Donna Catamero shares key advice for patients and care partners, available resources, and emphasizes the importance of financial and logistical assistance when accessing treatment.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero. 

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:

Katherine Banwell:

When meeting with someone considering CAR T-cell therapy, what are some questions that they should be asking about the process? 

Donna Catamero:

So, I think first, “Am I a candidate for CAR T?” Certain comorbidities may put patients at higher risk for complications, or they might need to have additional testing – lung and heart functions – but “Am I a good candidate?” 

“Do I have caregiver support?” Again, support network of caregivers for patients, because patients do need to have someone with them during that CAR T process, and “What are the resources available to me receiving CAR T?” Patients live far from CAR T centers. What kind of support that we can provide patients – is it hotel stays, is it transportation – to really get patients to their CAR T therapies? 

Katherine Banwell:

Right. There’s the whole financial aspect of therapy that some – it can be a difficult situation for some patients. 

Donna Catamero:

We’re very fortunate that both products have patient support services that help patients. They will provide hotel, transportation, food. 

So, we are trying to get more patients to the CAR T therapy. So, geographical constraints shouldn’t be a barrier, so we are really helping bridge patients to get to the CAR T centers.   

 So, to access some of these resources, talk to your healthcare team, social work, but also, again, I empower patients. Go directly to the manufacturer – Johnson & Johnson, Bristol Myers Squibb – you can go directly to their websites and find out more information, but your healthcare team can kind of, again, be a bridge to get patients that support.  

Being Empowered | The Importance of Understanding Myeloma

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How can patients and care partners feel empowered when facing a myeloma diagnosis? Nurse practitioner Donna Catamero highlights the importance of education, shared decision-making, and a strong emotional support network, along with using trusted sources for reliable information. 

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

 Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

 CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

As a provider, how do you empower care partners and patients who have been diagnosed with myeloma? 

Donna Catamero:

So, education, education, education. Knowledge is power. Learn everything you can, attend your support groups, attend educational seminars, and be part of your decision making. So, we called that shared decision making. You’re part of the healthcare team. You need to tell your providers what your goals of therapy are, and in order to do that, you really need to educate yourself on what kind of therapies, what are the supportive care options, and be part of that discussion. 

Katherine Banwell:

And how does one educate themselves? Are there websites that you would recommend they go to? 

Donna Catamero:

There are several foundations and organizations that I find very useful for patients. Our instinct is to go to the Google machine and type in our thoughts, but we do have great foundations. The Multiple Myeloma Research Foundation, the International Myeloma Foundation, HealthTree – all great resources for patients. They provide education, educational seminars, support groups, mentors. There are hotlines where patients can call and get the information right at their fingertips, and this is really from reliable sources. 

Katherine Banwell:

How do you counsel patients on coping with the emotional side of myeloma? What advice and resources are available for them there? 

Donna Catamero:

So, it’s important to try to get yourself a good emotional support network, so your family, your friends, your fellow myeloma community can really provide support for patients, and really – when you get – I’m going to repeat that. When you get a devastating diagnosis, patients can tend to withdraw from family and friends, but family and friends – your support network – can really help patients get through very trying times, so, your caregivers, your family, your friends, and like I said, the myeloma community is here to help. 

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

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Planning to undergo CAR T-cell therapy? Nurse practitioner Donna Catamero explains the importance of maintaining overall health before CAR T-cell therapy, staying organized during treatment, and how healthcare teams are improving the management and anticipation of side effects.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

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

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

 CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Wow, that’s great. Why is it so important for those undergoing CAR T-cell therapy to manage their overall health? 

Donna Catamero:

So, the healthier you go into a treatment, the better you’re going to feel, and this includes your activity level, so, really maintaining activity, getting out there, walking, exercising, eating things in moderation, having a healthier diet, and I just think the better you feel going into therapy, the better you’re going to tolerate therapies. 

Katherine Banwell:

Okay. Managing life before and after CAR T-cell therapy can be a really big undertaking. What tips do you have for staying organized at home, especially related to medication and follow-up appointments?  

Donna Catamero:

So, CAR T therapy can be very intense up front. There’s a lot of appointments, a lot of things you need to do to prepare yourself to get ready to collect your T cells and to receive your T cells, and it’s a lot of appointments, a lot of scheduling, and treatments to gear up for that cell infusion. So, what we do for our patients is getting calendars for patients, diaries for patients, to really keep them organized. It is a lot up front, but then, after a patient receives their T cells, they are then more on a maintenance phase, and life will get easier. It’s just heavy up front.  

Katherine Banwell:

Would you say that healthcare teams are getting better at managing and anticipating CAR T side effects? 

Donna Catamero:

Absolutely. So, we have several years of experience now. We can anticipate the timing of certain side effects, we manage them very well, many institutions are now doing CAR T therapies as an outpatient, so we really have gotten a great handle on how to manage these side effects, when to anticipate these side effects. And then, even long-term monitoring and managing patients several months post the CAR T infusion, infection prevention, etc., we have done quite well and been successful with our patient outcomes.   

Advice for Inquiring About Myeloma CAR T-Cell Therapy Clinical Trials

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How can patients find CAR T-cell therapy clinical trials? Nurse practitioner Donna Catamero shares resources for identifying trials, such as ClinicalTrials.gov, and encourages patients to ask providers about available trials and eligibility.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

Related Resources:

Understanding Myeloma Therapy Targets BCMA and GPRC5D

Understanding Myeloma Therapy Targets BCMA and GPRC5D

 How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

 How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

Transcript:

Katherine Banwell:

How can patients find CAR T clinical trials that might be right for them? 

Donna Catamero:

So, ClinicalTrials.gov can point patients in the right direction. Again, the foundations – the Multiple Myeloma Research Foundation, the International Myeloma Foundation – can help direct patients toward clinical trials that might be right for them.  

Katherine Banwell:

How can patients start the conversation with their provider? What questions should they be asking about trials? 

Donna Catamero:

So, first, when you’re given options for treatment, you should always ask – always, always ask – “Am I eligible for a clinical trial?” 

All the therapies we have available today for patients initially came from clinical trials. In our early CAR T therapies, those patients had access to those drugs years before the general myeloma population, so clinical trials are key to really moving the therapies for tomorrow.  

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

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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?”   

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

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Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses strategies to empower care partners and myeloma patients, emphasizing the long-term nature of the journey and providing guidelines for returning to activity post-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:

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

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

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

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

 The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Katherine Banwell:

As a provider, Daniel, how do you empower care partners and their patients who have been diagnosed with myeloma?  

Daniel Verina:

I think with the cancer card or even myeloma, and I always say this, it’s truly a fact, I said it’s a journey. It’s a journey.  We are together. It’s the tortoise that wins the race, not the hare when it comes to myeloma. It’s very different because many patients may have an experience that a friend had a different type of cancer and their treatment ended in a year or two. So, and myeloma currently, it is a continuous type of treatment for many years.  

So, it’s getting them on board and understanding that there’s going to be wax and wanes in time. And we’re here for the long run together. I’ll ask questions continuously because every question is new to them. I might’ve heard the question 6 million times, but it’s their first time experiencing it and hearing it.  

Katherine Banwell:

Yeah. Well, and following treatment, how do you counsel patients who are returning to activity and exercise? Are there any guidelines they should follow?  

Daniel Verina:

Absolutely. I think it depends on how they feel, their physicality, depending on their age because myeloma really has now become a broad spectrum in age. Yes, it’s a more mature adult or older adult disease, but we’re seeing it happen in our patients in their 40s and their 50s. So, they want to return to activities. They say whatever they can tolerate. Making sure that they’re not doing heavy lifting because myeloma can affect the bone strength or cause fractures.

So, no power lifting or bungee jumping, I try to advise them not to do. But go back to what they enjoy the most. Bringing them back to close to what their normal living is, I think is one of the best ways that patients can tolerate it.  

Where Can Myeloma Care Partners Find Out More About Financial Support?

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Where Can Myeloma Care Partners Find Out More About Financial Support? from Patient Empowerment Network on Vimeo.

Where can myeloma care partners find out more about available financial support? Nurse practitioner Daniel Verina discusses avenues for navigating the financial burden of care through social workers and organizations like the International Myeloma Foundation (IMF), and the importance of asking your healthcare team for resources.

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

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

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

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

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

 After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

Transcript:

 Katherine Banwell:

How can caregivers find out more about financial support? 

Daniel Verina:

I think the great thing is talk to your social worker and your institution to see what available funds, what grants that are available for them to help support them through that. Also, inquire at their employment what is available for them through there. What does their insurance actually cover, right?  

Going to the International Myeloma Foundation website or the Multiple Myeloma Research Foundation website and seeing the support that they can get through those institutions and organizations and the key tools that they have there for them.   

Katherine Banwell:

I mean, there could be something as simple as not being able to pay for parking.   

Daniel Verina:

Absolutely. And I always ask. I tell my patients, “Ask.” I’ll be honest, at my institution, I never know whether they can punch the card and get free parking or not, but I say to them, “Please ask at the front desk. Ask our social workers if there are ways.” And if they’re getting bills that we don’t understand, one thing patients need to do, and their caregivers is to bring us the bills that they have.  

Because many times, in my experience, the patient has brought me a stack of bills after four months and said, “Look what I’m getting.” I said, “Well, why didn’t you tell me a month into this, not waiting four months?” So, it’s allowing them to know bring it to us and let’s see what we can do can. We can never always guarantee that we can eradicate their bills. But what I’m saying to them is we can try.  

Katherine Banwell:

Absolutely. That’s great advice, Daniel. Thank you so much for joining us.  

Daniel Verina:

Oh, thank you so much. 

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

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CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner from Patient Empowerment Network on Vimeo.

How can care partners monitor side effects from CAR T-cell therapy? Nurse practitioner Daniel Verina discusses the unique aspects of CAR T-cell therapy, guiding care partners on recognizing side effects like cytokine release syndrome and neurological changes, emphasizing communication with healthcare providers.

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

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

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

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

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

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Is there anything you’d like to add about care partners and what they should know about the CAR T-cell process?   

Daniel Verina:

Absolutely. That some of the CAR T experience is that when patients reach the CAR T, they may already have a stem cell transplant earlier in their life, an autologous stem cell transplant. So, I will guide them and say there were some similar characteristics, meaning that there’s collection, there’s chemotherapy, and there’s a stay in the hospital.  

But some of the differences that their blood counts may not return as quickly as they did with an auto stem cell transplant.  So, they may see lower counts.  After a month or two, they may start to drop. So, to expect that some of these changes are normal or part of our pathway.  

But also, things that we need to look for and a caregiver should understand, that there are delayed effects, like cytokine release syndrome, or neurotoxicity’s that we see with CAR T can happen a couple of months down the line.  So, one of the important tools that a caregiver should have to watch and monitor patients longer on is being able to look for these toxicities. And there are many tools out there that are available through the IMF or the MMRF that the caregiver can say they’re not remembering as well, or I feel like they’re word searching.  

Even though the patient may come to us and sound and answer the questions appropriately, the caregiver says, you know what, I just feel like there’s something different.  And that’s a cue for us. I always call them the truth serum. The caregiver to me is the truth serum in the room.  So, I think one of those things is really teaching them to look for delayed side effects or adverse events that may occur even four, five, six months later.   

Katherine Banwell:

Can you give us an idea of what sort of side effects the care partner should be looking for? 

Daniel Verina:

So, in the hospital, patients can experience what we call cytokine release syndrome or fevers, fast heart rate, low blood pressures. And that could occur upfront, but it could happen later on in life.  Certain things also are neurotoxicity. So, having persistent headaches, memory loss, word searching, sometimes change in their gait, and sometimes even a little bit of a handshaking or tremor.  

So, neurological changes. Shuffling they may see. Weaknesses in their legs, things like that. So, they used to get up out of the chair very quickly, and now it takes them longer to do that. And those are signs that they should be calling their primary CAR T physicians and saying, “I’m seeing a change,” because the further out they go and if they’re doing successfully, we see them about every month or so compared to when they come out of the hospital. So, you want to alert the caregiver to call us as quickly and not wait until the next appointment. You never know.  

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

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After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized from Patient Empowerment Network on Vimeo.

What should care partners expect after CAR T-cell therapy? Nurse practitioner Daniel Verina offers tips for staying prepared, including advice on returning home, preparing the home post-therapy, and staying organized.

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

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

Related Resources:

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

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

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

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

We know that patients should be near a medical center for the first few weeks after the therapy. Do you have any organizational tips for how a care partner can best prepare for the return home?   

Daniel Verina:

Absolutely. So, yes, it is required. So, the patient generally stays in the hospital for two weeks and then it’s required for them to be very close to the hospital two weeks after that because it requires many visits. I think preparing for home is also knowing that they have adequate and support for transportation because sometimes the patient may have to come in two to three times a week for support usually in the bigger institutions.  

Also, reconnecting back with their local oncologist just to make sure that if something does happen and they can’t get to the cancer center quick enough, they have another support. And to also to be able to monitor that, make sure they have thermometers and blood pressure machines and things that are going to be there for them when they get home.  

Katherine Banwell:

Do you have any tips for making the physical space at home more comfortable?   

Daniel Verina:

You know, I always say that’s individualized and everybody’s home is different. So, it’s hard to say that. I always – I’m very minimalistic. So, I always say don’t have a lot of clutter because post-CAR T you may feel a little weak or tired. So, make sure that they’re not navigating around a lot of furniture. There’s not loose rugs, equipment like that.

They may need some support even in the showers. That they may need a shower chair depending on the patient’s physicality. But that’s a very good discussion to have before they leave the hospital. Maybe our social worker teams can set up DNS [Home Health Care] and be able to put some support into the home.    

Katherine Banwell:

Are there any supplies that care partners will need as they care for a patient at home?   

Daniel Verina:

Supplies are very simple; I’ll be honest with you. It’s generally thermometers and maybe an automated blood pressure machine, I think, and then a pad of paper and pens that work itself. And also, like I say, it’s having the transportation or having a backup of something if the patient doesn’t feel well to get there. But in supplies, no, the patient should eat what they normally eat. I would say not as spicy because they may not be able to tolerate it, but things like that.  

Katherine Banwell:

And a calendar, I would think would be pretty important.  

Daniel Verina:

I love calendars. I’m a calendar writer, so I like it usually on paper, but people like it on their phone. So, I always tell patients also to keep a diary of how they feel because they come to us and I think it’s very common where you go, I have a million questions to ask you, and then they forget. So, it’s always good to say, “Oh, he had a little – he might have had some loose stools or diarrhea on this day,” but then they forgot to tell you. So, I think it’s good to document those things. And even weight –    

Katherine Banwell:

Pardon me?  

Daniel Verina:

And even their weight. So, all their vital signs and weight should always be documented. 

Katherine Banwell:

Okay, thank you. Who is the best point of contact at a medical center if they need support?   

Daniel Verina:

It’s actually the medical team. The best support is the medical team, depending on it. So, and each institution, I’ll say, may have different ways of accessing it. We have a 24-hour hotline. So, when the patient doesn’t feel well, they can call directly in. If it’s simple questions, they can always use the EMR messaging services that we have at our institution. So, each institution may have a way of doing it, but I would say always reach out to the primary team.   

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

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An Essential CAR T-Cell Therapy Team Member | The Care Partner from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina highlights the crucial role that care partners play during the CAR T-cell therapy process, offering advice on what they should expect throughout the journey, and emphasizing the importance of a support system and resources for patients and their care partners.

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

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

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

 CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Daniel, the care partner is a vital team member in the CAR T process. Can you explain the role of a care partner?  

Daniel Verina:

Absolutely. I think one of the key ingredients, I think, in cancer care across the board is the caregiver. I think many times it’s forgotten because we’re very focused on the patient’s needs. But entirely, it’s not just the patient who has the cancer, it’s the caregiver who actually has the cancer or bears some of the burden. So, I think it’s important to always have them involved in all of the roles and each step that the patient goes through, and also try to provide them support that they may need that’s extra, not that the patient gets.   

Katherine Banwell:

Yeah. As a nurse practitioner, Daniel, you educate care partners about the CAR T-cell process. What are three key pieces of advice you share with care partners for patients who are considering CAR T-cell therapy?   

Daniel Verina:

There’s a few. So big three key points to this is that it’s a journey. One of the things, it’s not just a quick we’re going to do this in a month and then we’ll be moving on. It’s going to be for a couple of months or a few years that we may be together during this CAR T experience, one.

There’s going to be also many trips to your facility, your institution, your cancer center that are required to even getting part of the CAR T, working up for the CAR T before even having the cells manufactured and given back to them. And I think also having an extra support for them, so the caregiver also has to have support outside of them. So, if they’re not able to make a meeting or come to an appointment, they should have a backup or somebody even just to talk to outside of just the cancer center.   

Katherine Banwell:

For care partners, what support and resources do you recommend for their mental and physical well-being when caring for a loved one who’s undergoing CAR T?   

Daniel Verina:

Absolutely. I think you could even broad span that to all of cancer care itself, but especially with CAR T. There’s many resources out there that are available. So, the International Myeloma