Tag Archive for: caregiving

Expert Perspective | How Bispecific Antibody Therapy is Transforming Myeloma Care

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 How has bispecific antibody therapy changed myeloma care? Tiffany Richards, a myeloma nurse practitioner, explains how bispecific antibody therapy works, who this therapy may be right for, and the important role of the care partner when caring for a loved one. 

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Care Partners | Tools for Self-Care and Managing Emotions

Care Partners | Tools for Self-Care and Managing Emotions

Transcript:

Katherine Banwell:

I’d like to start by learning a bit about you. Can you tell us about your role in the Myeloma Care Team? 

Tiffany Richards:

Yes. So, I’m a nurse practitioner and I’ve been here at MD Anderson for 20 years working with patients with plasma cell dyscrasia. And so, I work in collaboration with our nurse as well as our myeloma physician to not only evaluate patients, what their responses are to treatment but also to make sure that they’re tolerating treatment well, and then adjusting medication or providing supportive medications so that patients are better able to tolerate their therapies.  

Katherine Banwell:

Bispecific antibody therapy is a newer therapy. How has this option changed myeloma care?  

Tiffany Richards:

Between that and CAR T, it’s really offered our patients the opportunity to utilize the body’s own immune system to help fight the myeloma cells. I think the one nice thing that the bispecific antibodies have allowed is that you’ve had a group of patients that maybe weren’t candidates at that time for CAR T either due to other medical conditions or maybe because their disease isn’t at a place where we would be able to get them to CAR T.   

Either maybe their lymphocyte count was low, white blood cells, and so maybe the ability to collect those T cells would be impaired or the disease itself was rapidly progressing and so the patient would not be able to be off therapy in order to have those T cells collected.  

And so, the bispecific antibody allows us to utilize those T cells to go after the myeloma cells without having to go through the process of having to collect those T cells. And so, that has really changed for that group of patients. But also, we have a bispecific antibody therapy that doesn’t target the same receptor that the CAR T-cell therapies do. So, our CAR T-cell therapies target something called BCMA, which stands for B Cell Maturation Antigen.

That’s expressed on the surface of the myeloma cells, and there’s a bispecific that targets a different receptor called GPRC5D. It’s a lot of letters. But it’s a different target, and so even for patients who have had CAR T-cell therapy we can use that bispecific antibody now for those patients who have maybe progressed on CAR T.  And so, it’s allowed another treatment option for patients that they didn’t otherwise have.  

Katherine Banwell:

So, how many bispecific antibody therapies are available for people and how do they differ? 

Tiffany Richards:

So, we have three. So, we have two that target the BCMA; so, that would be teclistamab (Tecvayli) and elranatamab (Elrexfio). And then, we have a third one that targets the GPRC5D which is called talquetamab (Talvey). And so, we utilize the talquetamab if we wanna use a bispecific therapy that does not target the BCMA. And then, for patients who maybe wouldn’t be able to get to CAR T, we might use one of the BCMA therapies.  

And as far as differences between to the two BCMA, really, they’re pretty similar as far as response rates. They haven’t been compared head-to-head. And so, different centers might utilize one versus the other depending on what they have on formulary. So, I would just say, whatever one your center is utilizing that would be the one to go with. 

Katherine Banwell:

Why is a care partner required for patients who are undergoing bispecific antibody therapy?  

Tiffany Richards:

That’s a great question. So, it’s because of some of the side effects that we can see in patients who are undergoing bispecifics. So, similar to CAR T cell therapy, we can see what’s called cytokine release syndrome. We abbreviate that by CRS. And then, we also can see neurotoxicity. We don’t see it to the same degree that we see it with CAR T but patients can still experience it.  

So, cytokine release syndrome, you can get fevers. You can have a drop in the blood pressure, chills, increase in the heart rate. And so, because of that you have to be monitored closely because, if you would start to have cytokine release syndrome, we need to make sure that we’re properly intervening and we can utilize a different medication called tocilizumab (Actemra) to help quiet the immune system a little bit, quiet down those T cells. And so, you need to have somebody that’s with you at all times that knows you, and also, same with the neurotoxicity. Again, we don’t see it to this same degree that we see it with CAR T, but that doesn’t mean that it can’t happen.  

And so, you really need to have that care partner alongside of you. Plus, I think just with these immune therapies, it’s a lot of information that we’re giving patients.   

And so, it’s important to have that other person there to kind of hear what maybe you’re not able to catch. There’s a lot of information that’s being given to you and can be very overwhelming at times. And so, it’s important to have that second person there to kind of be another set of ears as you’re going through this journey. 

Care Partners | Tools for Self-Care and Managing Emotions

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

 What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Transcript:

Katherine Banwell:

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

Tiffany Richards:

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

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

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

Katherine Banwell:

Are there support resources available for care partners? 

Tiffany Richards:

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

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

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 When a loved one is undergoing bispecific antibody therapy, how can a care partner prepare? Tiffany Richards, a myeloma nurse practitioner, provides key advice for care partners, including important questions that they should ask the healthcare team.

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Care Partners | Tools for Self-Care and Managing Emotions

Care Partners | Tools for Self-Care and Managing Emotions

Transcript:

Katherine Banwell:

When meeting with a patient and their care partner for the first time, what three key pieces of advice would you share with them? 

Tiffany Richards:

So, one is I would make sure that you understand the regimen; so, what days you’re going to be dosed, what day you’re going to go in the hospital, approximately what day you might be discharged, knowing that that discharge date can vary depending on how you’re doing with tolerating the therapy. I would also make sure that you understand what prophylactic medications you need to be on.  

So, oftentimes we’re putting you on an antiviral. We’re putting you on something to prevent a certain kind of pneumonia called PJP. And then, we also may put you on something to help you boost up your antibodies. So, oftentimes patients with myeloma, they’re low on their normal IgG antibodies just because we’re depleting all of these plasma cells in the bone marrow and so you’re not producing enough of these other antibodies. And so, we may have to put you on IVIG once a month.  

And so, making sure that you understand what it is that you all need to be taking, and then also making sure that you’re asking the questions as far as “How often do I have to come back?” 

“Do I have to get it all at an academic center or is it the opportunity to get it done locally?” I think that’s really important question because some local community providers, they’re willing to do the subsequent cycles of the bispecific. They may just not want to do that first cycle. And so, asking the question, “Can I get my subsequent cycles locally?” because to travel long distances, particularly depending on where you live geographically, it may be difficult to go back and forth to an academic center. 

Katherine Banwell:

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

Tiffany Richards:

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

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

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

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Dr. Craig Cole, a myeloma specialist, shares advice for care partners to feel empowered when engaging with the healthcare team, emphasizes the importance of communication, and provides suggested questions for the care partner to ask. 

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:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 Myeloma Care Partners | Understanding Bispecific Antibody TherapyMyeloma Care Partners | Understanding Bispecific Antibody Therapy Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

How can care partners feel comfortable speaking up and voicing concerns about care? 

Dr. Craig Cole:

Yeah, I think the big thing is – that’s such a good question because I’m very passionate about patient empowerment, a lot of Ps in that statement. 

But it really is having good communication with your provider. And I think one important thing is slowing down your provider. Providers, doctors, nurse practitioners, and PA’s, these days there’s a lot happening in the clinic. There’s a lot going on. And to the provider this may be a very routine bispecific antibody initiation, but for you it’s the first time.  

Katherine Banwell:

Right.  

Dr. Craig Cole:

And so, making sure you slow them down, to slow them down. I think my patients know if I’m running late, it’s because I had to slow down and go through the process, and make sure it’s well understood and that you should feel comfortable. And these days to ask your doctor question, and question your doctor, to ask about these therapies, the side effects, and the efficacy of them.  

If your doctor doesn’t like it, or if your doctor gets angry, then it really is time to find a new doctor because the doctor is there to serve you and to help you and make – you have to make sure that everything, your questions are answered, and that you feel comfortable going home. If you feel uncomfortable going home, then turn around and ask them again. 

Katherine Banwell:

Yeah, yeah. And if not, the doctor – I suppose some of these questions could be answered by someone on the care team. 

Dr. Craig Cole:

Yeah, and a lot of places have bispecific teams. I mean, these are such common drugs these days that there are teams of people that are behind the scenes working. And some of the phone numbers are to the other people that are on the team so absolutely. 

Katherine Banwell:

Yeah. You mentioned empowerment. How do you empower care partners to engage in their loved one’s care?  

Dr. Craig Cole:

I think that the first thing that I do, this is what I personally do, is I write down everything. I write down the plan. I write down the mechanism of action. I’m a very visual person. And so, I write everything down for patients. And I think when they see me writing it down, and I hand the papers to them as I write things down that it shows them that it isn’t a one way street. It isn’t me talking to myself in medicalese about a patient. It really is a partnership. And I do this with the trainees that you never, ever walk out of a room without asking, “Are there any other questions?” And I think one very important question for care providers and patients to ask their providers is to ask, “Is there anything that I should have asked? 

Is there anything that you think that people normally ask that we may have missed or not gone over?” Because again if it’s your first time using these medications, you may not have thought of everything and thought of all the questions to ask. So, asking your provider, but really having that two-way conversation, and I really do. I really try to make sure that before my – before we give any of these medications, that my patients are engaged, that they understand what we’re doing and why we’re doing it. And if they don’t, then we start all over again, and there is no fault in that at all.  

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

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How can you best care for a loved one who is undergoing bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, provides key advice for care partners emphasizing the necessity of taking notes and for having a solid plan if issues arise, and he shares key questions to ask the doctor about bispecific antibody therapy.

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

 Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

 Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Transcript:

Katherine Banwell:

Dr. Cole, what sort of questions should care partners be asking the care team when a loved one is undergoing bispecific antibody therapy? 

Dr. Craig Cole:

I think one of the big questions and – oh first I would say write everything down. Write everything down and have your care provider write things down or record them. Because I think it’s important to have that – have something written on hand. In our house we put everything on the – instructions on refrigerator with a magnet to make sure everyone sees it. But the one – one big question to ask is, “What are the – with this specific antibody that the patient’s receiving, what is the risk of the of the cytokine release syndrome?  

What’s the risk of the neurotoxicity that we talked about in the timeline?” Because those can be very different. “When should I worry? And how long should I be watching for these side effects?” The other thing is to have a solid plan of what to do if there are – if there’s any side effects. And so frequently that doctors or providers will write a prescription for steroids or Tylenol to take if any of those symptoms happen, but also to have a phone number to call a provider or to call the clinic if something were to change. Because again, these aren’t symptoms that you want to sit on where you say, “Oh, I have a fever, no big deal.” I mean it’s definitely good to call, and so, having a plan set. And I would make sure that you have that written down and then talk back, repeat back to the doctor or the provider that the plan is set.  

It’s not a forever plan. It’s just doing those first few doses of the bispecific. And also knowing sort of – I think a really good question is knowing the long-term efficacy of these. I mean these therapies are – work really, really well, but also knowing what are the chances of this working, of it not working? And I always like to have a plan B. “If this doesn’t work well, what are we going to do next?” And I think that’s a very fair question to providers. 

Katherine Banwell:

Dr. Cole, is there anything else you’d like to add about caring for someone who’s being treated with bispecifics? 

Dr. Craig Cole:

I think that the biggest thing is how incredibly exciting these medications are. I mean, there are – I went through and talked about a lot of the bispecifics for cancer, but there have been revolutionary biospecifics for macular edema, for hemophilia, the bleeding disorder. And these are revolutionary drugs in cancer. And really, it’s incredible that – how well these drugs fight cancer. And the fact that they use your own immune system, not someone else’s immune system, not some chemotherapy, but using your own immune system is incredible. And so, I always tell people to be really encouraged that the technology is this – if you’d have asked me this 10 years ago about a bispecific antibody I would say that’s impossible.  

And now we’re at the cusp of that. And the other thing is to be involved in clinical trials, that all these, a lot of – there are a lot of clinical trials and bispecifics because it is the big, exciting thing. And so, if you have the opportunity to participate in a bispecific clinical trial, I would definitely encourage that because it really is the cutting edge of medicine these days.  

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

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Dr. Craig Cole reviews the side effects of bispecific antibody therapy, the symptom care partners should be monitoring for, and the importance and impact of early intervention if any issues arise.

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:

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

 Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

 Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Transcript:

Katherine Banwell:

Do side effects vary from patient to patient? 

Dr. Craig Cole:

Yes, so they actually vary greatly from patient to patient and from drug to drug. There’s some bispecifics for some cancers that have low risks of cytokine release so low that they don’t even need to come to the hospital. And some of them have such a high risk of those cytokine release syndromes that people are in the hospital for a few days.  

The other thing is usually the more tumor someone has, the more disease and cancer they have, the higher those risks of cytokine release. And so, it does vary from patient to patient to and from medication to medication. 

Katherine Banwell:

What should care partners understand about caring for someone during therapy? 

Dr. Craig Cole:

One of the big things that care partners should look for or to be aware of are – is the timeline for a lot of those symptoms. The highest risk for the side effects, the things to look out for, the neurologic toxicity, the fevers, and shortness of breath, and things are in the first few days of each dose of receiving therapy.  

Some of those therapies actually because of the neurotoxicity, they don’t let anyone drive, any patients drive for the first few weeks after receiving a bispecific. So, knowing the timeline, that in those first few days, that you really have to check the temperature, have a plan, know who to call, watch for those symptoms. But as the weeks move on, like after the second dose, there’s much less toxicity, third dose, even less risk. Fourth dose and on is very rare to have any of those toxicities, and so then you can relax. And usually people are able to drive. So being aware of the timeline’s important. 

Katherine Banwell:

Yeah. Are there advances being made in the management of side effects for bispecifics? 

Dr. Craig Cole:

Oh yes, and so that’s the – that’s one of the really exciting things is the – is what I was just talking to one of our trainees about this, about the evolution of the bispecific antibodies have been to make them more effective, make them more sticky, make them engage those T cells more while decreasing the toxicities. 

And so the ones that we’re seeing that are in clinical trials now that hopefully will be approved soon have less of those side effects, less hospitalization, and actually have a longer frequency of being given. The other thing is that we’re really beginning to learn a lot about treating cytokine release syndrome, especially as severe cytokine release syndrome. So, there was a drug that was used to treat severe COVID called tocilizumab (Actemra).  

Katherine Banwell:

Yeah.  

Dr. Craig Cole:

And that was used when people came in with COVID symptoms which can be a lot like cytokine release. The would receive this medication to help control that. Now we’re using that to treat cytokine release syndrome.  

And there’s quite a bit of data, especially in multiple myeloma in using it prophylactically to prevent cytokine release syndrome. And there are studies that show that the usual rate in multiple myeloma, kind of the specialty that I have, the usual rate of cytokine release – some cytokine release is about 70 percent with using prophylactic tocilizumab, which is just an antibody against one of those cytokines, IL-6. It goes down to – up to about 25 percent, so 75 to 25.  

And really it has no adverse side effects and doesn’t do anything with the outcome or the effectiveness of the bispecific antibodies.  

Katherine Banwell:

Well, that’s an incredible difference, isn’t it? 

Dr. Craig Cole:

Yes, yes, that was really – the trick is trying to get insurance companies to approve it and to get hospital systems to approve it.  

But I am very confident that very soon as we get more data about using it prophylactically that they’ll be incorporating it into the guidelines. 

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.  

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. 

Prostate Cancer Care Partners: Getting the Support You Need

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Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Living With Prostate Cancer

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me. 

How Can Care Partners Combat Burnout?

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

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

Transcript

Diahanna:

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

Patricia:

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

Diahanna:

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

Patricia:

Yeah.

Diahanna:

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

Patricia:

Way after.

Diahanna:

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

Sherea:

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

Diahanna:

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

What Role Can Care Partners Play in Advocacy?

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What Role Can Care Partners Play in Advocacy? from Patient Empowerment Network on Vimeo.

Care partners can play many roles in advocacy. Diahanna, Sherea, and Patricia discuss that as a care partner you have to stay knowledgeable and up to date about various treatments and discussions happening in your loved one’s disease area. Diahanna shares a time where she had to advocate for her late husband by speaking up to the nurse and nearly saving her husband’s life. She also expresses that as care partners, you cannot be afraid to ask questions on behalf of your loved one.

Care Partner Tips for Communicating with Healthcare Teams

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Care Partner Tips for Communicating with Healthcare Teams from Patient Empowerment Network on Vimeo.

Ensure that you are in a position to ask the right questions of your healthcare team. Diahanna suggests familiarizing yourself with various online resources so you are aware of the potential needs of your loved ones. Watch as care partners, Diahanna, Sherea and Patricia share more crucial tips to help others communicate with one’s healthcare team.

Resources for New Care Partners

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Resources for New Care Partners from Patient Empowerment Network on Vimeo.

Sherea explains that you cannot move forward, unless you are able to acknowledge all the feelings that may come with the initial diagnosis of your loved one. Watch as care partners Diahanna, Sherea, and Patricia also share their tips and go-to online resources for new care partners.

Is There a Difference Between Care Partner vs Caregiver?

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Is There a Difference Between Care Partner vs Caregiver? from Patient Empowerment Network on Vimeo.

The term caregiver is generally more recognized around the world. Care partners Diahanna, Sherea, and Patricia share that being a care partner is generally more intimate than being a caregiver. Care partners are those who are taking care of family members and loved ones whom they’ve known before any initial diagnosis.

How to Seek Help as a Care Partner

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How to Seek Help as a Care Partner from Patient Empowerment Network on Vimeo.

When in need of help care partners Diahanna, Sherea, and Patricia share that you should not be shy. There is a tendency for care partners to deny help, but if you are burned out while caring for a loved one you are no good for them or yourself. Diahanna explains caregiving to be a very humbling and rewarding experience.