Tag Archive for: caregiver

Expert Perspective | How Bispecific Antibody Therapy is Transforming Myeloma Care

 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

 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

 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. 

Why Myelofibrosis Patients Should Be Engaged in Their Care Decisions

Dr. Idoroenyi Amanam, a myeloproliferative disorder specialist and researcher from City of Hope, shares expert perspective on the importance of patient participation in care and treatment decisions. Dr. Amanam emphasizes the necessity of having a care partner and utilizing all members of the healthcare team. 

Dr. Idoroenyi Amanam is a specialist in myeloproliferative disorders and is an Assistant Professor in the Division of Leukemia at City of Hope. Learn more about Dr. Amanam.

Download Resource Guide

See More from Evolve Myelofibrosis

Related Resources:

Promising Advances in Myelofibrosis Research | Optimism for Patients

Promising Advances in Myelofibrosis Research | Optimism for Patients

Expert Outlook | New Myelofibrosis Therapies Showing Promise

Expert Outlook | New Myelofibrosis Therapies Showing Promise 

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Expert Perspective | A Concerted Effort to Advance Myelofibrosis Care

Transcript:

Katherine Banwell:

Well, how do you encourage patients and care partners to be involved in decision making? Do you have any advice for them?  

Dr. Idoroenyi Amanam:

That’s a very important question, and it’s a tough one. And I will tell you, personally, I have family members who have medical  disorders that I think do require a lot of support from other family or friends. And  based off my experience, I encourage patients to involve their families in these discussions, because I don’t think  we’re at a space where things are very binary.  

I think the decisions that we make when we’re treating patients with myeloproliferative disorders and myelofibrosis, there are some nuances there, and I think family can really help the providers, in addition to the patients, in coming to the right decision about how we’re going to move forward.  

So, I think my advice is, involve your family, involve your friends.  I think having a community of support is very important when you have a type of disease such as this. 

Katherine Banwell:

And it’s important to have somebody there with you, a care partner or a friend, as you say, who may be able to ask questions that you, as the patient, haven’t thought of. Somebody there to take notes, just in case you need to refer to something after. 

Dr. Idoroenyi Amanam:

Absolutely. Absolutely, I agree. I think it’s a team from both sides  to, kind of, extend what you’ve said. To the medical side, the pharmacist may give me some input about  some things I may have missed with the patient,  the nurse practitioner in clinic, the RN in clinic,  the other staff.  

And  I think it’s one of those situations where the more people involved can help us, kind of, draw that picture better. I think we’re trying to get a sense of how we can move forward in the best way, and having all of those parties being active and offering  the best that they can is really helpful for everyone. 

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

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

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

 
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

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 | How Can You Support Your Loved One During CAR T-Cell Therapy?

How can care partners be informed and prepared when a loved one is undergoing CAR T-cell therapy? Myeloma expert Dr. Adriana Rossi explains the role of the care partner in each step of the CAR T process, how to understand and monitor for side effects, and shares key advice for self-compassion and self-care when serving as a care partner for a loved one. 

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

Download Resource Guide

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

Related Resources:

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:

Jamie Forward:

Hello and welcome. I’m Jamie Forward. Today’s program is part of the Patient Empowerment Network’s Care Partner Toolkit Series focusing on the role of the care partner when a loved one is undergoing CAR T-cell therapy.   

Today, we’re joined by a myeloma specialist who works with patients and their care partners. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team about what might be best for you. Let’s meet our guest today. 

Joining us is Dr. Adriana Rossi. Dr. Rossi, welcome. Can you please introduce yourself?   

Dr. Adriana Rossi:

Yes. Nice to be with you today. I am the director of the CAR T and Stem Cell Clinical Program at Mt. Sinai in New York.  

Jamie Forward:

Thank you so much. We’re glad to have you with us. Dr. Rossi, before we get into the role of care partners and the CAR T process, let’s talk about what CAR T-cell therapy is. Can you please give an overview of CAR T and how it works to treat myeloma?  

Dr. Adriana Rossi:

Absolutely. CAR T are genetically engineered cells. So, we generally use the patient’s own T cells, modify them to make them special killers just for that patient’s myeloma. And then, infuse them back into the patient over a process that I’m happy to go into in much more detail.  

Jamie Forward:

Sure. And, we’ll cover the process a bit later in the program. So, we can walk through that in just a bit. So, where does CAR T-cell fit into a myeloma treatment plan? 

Dr. Adriana Rossi:

Well, we originally had approvals in patients whose myeloma three or four times. But, in 2024, now the two commercially available CAR T products, one ide-cel (Abecma) and the other cilta-cel (Carvykti), are now both approved in earlier lines. So, we actually could potentially be eligible for CAR T after your first relapse. As long as you’ve had a number of therapies up front.  

Jamie Forward:

Okay. And so, when you say lines of treatment, that’s basically the number of therapies you’ve had so far? 

Dr. Adriana Rossi:

Right. The number of times the myeloma has come back. So, regardless of whether it’s one drug or three drugs together – we now often use four drugs together.  

But, we start off with a certain amount of myeloma and we treat it until it’s in remission as deep as we can. And then, we try to make that remission last as long as possible. Unfortunately, myeloma tends to eventually make its way back. That’s called the relapse. And then, you would start a new line of therapy. So, once the myeloma has come back after treatment, CAR T would be an option.  

Jamie Forward:

Okay. So, obviously a care partner is a part of this process, as is today’s focus of the program. So, can you walk us through the role of a care partner of a patient who’s receiving CAR T-cell therapy? 

Dr. Adriana Rossi:

Absolutely. And, many patients and their families will have experience with stem cells. I think the first thing to keep in mind is this is nothing like a stem cell transplant. Yes, there are cells that are collected. There’s chemotherapy and the cells are infused in a hospital setting. 

But, other than that, they are really very different experiences. And, given that’s what we would consider a long journey of CAR T through apheresis, which is the collection, then a bridging therapy while the cells are in manufacturing. Then, the hospital stay, and then the monitoring after. I think all of that is not a solo undertaking, and it really is essential to have one or more caregivers in that setting.

It’s really important to have a second set of ears at the consultation so that that amount of new information, all the big words, how things go together, meeting people is a little less overwhelming. The whole getting ready for the CAR T. There are a lot of different doctors’ appointments. We like to check that hearts and lungs are healthy. A dentist needs to check you out and make sure there’s no infection. So, just an overwhelming process. 

And, every step of the way, that’s going to be made easier if you have someone by your side.  

Jamie Forward:

Sure. It sounds like there’s a lot of coordination that takes place, as well. So, an extra set of hands is always useful there.  

Dr. Adriana Rossi:

Yeah. 

Jamie Forward:

Great. So, the care partner is a key member of the healthcare team as we established. So, who are the other members of the CAR T-cell therapy healthcare team?  

Dr. Adriana Rossi:

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

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

Jamie Forward:

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

Dr. Adriana Rossi:

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

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

Jamie Forward:

That’s great advice. So, as I mentioned, now we’re going to sort of walk through the steps of the CAR T process and what happens in each step, and how the care partner can support the patient during this time. So first, is there a consultation once a patient has been approved for this therapy?  

Dr. Adriana Rossi:

Absolutely. There are several consultations. The first one, once the patient’s identified by a referring physician, they will come and meet with myself and again, the coordinators and several members of that team to make sure that it seems like a good fit. That this is the right time, and identify any steps that we can take to really set that patient up for success.  

Jamie Forward:

Okay. And, how can the care partner participate in this meeting? Are there key questions they should be asking? 

Dr. Adriana Rossi:

Absolutely. Again, this is the beginning of the journey, and they should absolutely be there. Mostly because a lot of the information, this may be the first time they’re hearing again, the words. The concepts. The timeline. So, do ask about when things are going to be happening. As the CAR T physician, I do this all day. So, it’s very clear in my mind, but until it’s clear for them, again, ask more questions. Ask for clarification. 

Be clear on what resources are available. If there’s something that there is a question like transportation, or sequential appointments, or children in the family. All kinds of things. Really be as curious and as vocal as you’re up for. 

Jamie Forward:

Right. Arranging for childcare and pet care is probably really important during this time. 

Dr. Adriana Rossi:

Exactly. 

Jamie Forward:

What about financial planning? Is that a good time to ask about insurance and who to coordinate with there? 

Dr. Adriana Rossi:

Absolutely. Again, you will meet with social work. But, if there are specific issues that we’ve already identified, specific resources, specific paperwork, we can get that started right away.  

Jamie Forward:

Okay. Great. So then, after that, once all of that has been squared away and you’re ready to go into the CAR T-cell therapy process, there’s the T-cell collection, correct? 

Dr. Adriana Rossi:

So again, to distinguish it from stem cells, I think it’s important to know it is a one-day collection for CAR T. 

There are no injections or other preparations ahead of time. There’s no minimum number of cells that we’re aiming to get. It really is a one-day commitment to collect the cells that we collect, because they’ll be then engineered and modified before they’re ready. And so, it’s not the ordeal that sometimes you have to go through for stem cells.  

Jamie Forward:

Okay. So, the care partner should just be there during that time to be a supportive loved one. 

Dr. Adriana Rossi:

Exactly. And, it can be a long day. You’re tethered to the machine for a few hours. And, when all goes well, it is an exceedingly boring experience. So, be entertaining and be nearby. Always helpful.   

Jamie Forward:

That’s great advice. So, once the cells have been collected, can you walk through the next steps? I believe there are bridging treatments involved. Are those administered inpatient or outpatient? 

Dr. Adriana Rossi:

Absolutely. Bridging therapy is the therapy the patient receives while the cells are out being manufactured. And really, the goal there is not to get rid of myeloma. It’s just to prevent it from growing. Because myeloma that is not cared for tends to grow quite quickly. There are options to do it inpatient. To do it outpatient. There are certain therapies that would require the patients come to our center. Others that are easily given with their local oncologist. So, we really try to find something that the myeloma will be sensitive to, and that will hopefully not be too toxic, so there’s not a big recovery or a big downtime as we are preparing for the hospital stay for CAR T. 

Jamie Forward:

Okay. And, how can care partners support the patient at home during this time? I would imagine it’s sort of an anxious time. 

Dr. Adriana Rossi:

Absolutely. Many times, the bridging is something that may be familiar. Like, we’re recycling drugs they’ve seen before.  

But, these could be brand new drugs. And, I think every time you’re experiencing a new cocktail, there is some learning of how will you react, and the anxiety that can come with that, as well. There are a few times when there are delays in the cells getting ready. So, it’s not a very exact day, and that waiting period, wondering will they really come on the day they’re expected absolutely could be an anxious time. I think keeping each other company and just actively working to be your healthiest self for whenever the CAR T is ready, and knowing that working with your physicians, we are all working behind the scenes to work to the greater success hopefully is helpful.  

Jamie Forward:

Okay. That’s great. And then, finally in the process, the cells are infused back into the patient. Since this is a critical time for patients, how can care partners best be prepared to help their loved one 

Dr. Adriana Rossi:

One of the most common side effects is something called CRS. 

Which patients experience as a fever. And, I think many times in blood cancers, we really worry about fevers, because those could be infections. I think it’s important to be prepared and expect the fever so that again, it’s not oh no, what is this? We were waiting for it. It tends to come at a very scheduled time dependent on the product. So, just reassuring. Remembering yes, there are toxicities, but they are expected. Plan for them.

The medical team will have an antidote. We’ll have steps that we take depending on what comes up. And, the reason for being in the hospital is exactly to allow the medical team to respond very quickly. Most of the time, very little happens, and that is wonderful. So, if anyone is feeling bored, that is great. Celebrate it with them. No news is good news during the couple weeks in the hospital.  

Jamie Forward:

Okay. And, how long is the patient monitored for side effects in the hospital following new infusion? 

Dr. Adriana Rossi:

So, depends on the product. Ide-cel tends to have very early reactions. And so, our policy is one week for ide-cel and two weeks for cilta-cel because there, most of the side effects are around seven days in. So, we wait for the inflammation to peak and resolve. And, once it’s safe, we aim to get patients home. But, once they leave the hospital, they should for at least a few weeks be very close to the CAR T center, and usually require two to three visits a week for that close monitoring. 

Jamie Forward:

What are the short-term side effects associated with CAR T-cell therapy?  

Dr. Adriana Rossi:

Absolutely. So, the T cells are part of the immune system. Their job is to grow and expand once they’re in the patient, and pick a fight with the myeloma, which will cause a certain level of inflammation. So, some inflammation is good. But sometimes, they overdo it, and it manifests itself as a fever. We call that cytokine release syndrome. Cytokines are the molecules T cells use to communicate with other members of the immune system. So, this is part of the process we are causing, but we want to keep it in check.  

And, in the early days, we were very hesitant to do anything that could harm these precious T cells. But, we’ve learned in time that all of the antidotes, including tocilizumab-bavi (Tofidence) and steroids, don’t harm the effectiveness of the CAR T. And so, we’re very quick to intervene early and intervene with as many tools as we need. And so, that’s really become mostly just the fever. If left untreated, it can lead to low blood pressure and maybe an oxygen requirement. 

Again, usually quite easily reversible. When the inflammation happens around the brain or the nerves, we call that neurotoxicity. Specifically ICANS, which is the confusion and neurological deficits that occur with CRS. Neurotoxicity also includes other things like a peripheral neuropathy, cranial nerve palsies like Bell’s palsy has been reported quite frequently. And then, very rarely, delayed neuromuscular toxicities, which again, by patient selection are becoming more and more rare.  

And, the last is low blood counts, which we’ve touched on as part of the reason patients need such close follow-up once they leave the hospital. They’re very much at risk for infections, because they’re not making antibodies. Their neutrophils, which is the infantry type white blood cells, are low. And, their T cells are going to be low from the process. 

Jamie Forward:

Okay. And so, for a care partner, what should they be looking for? And, when should they contact a member of the healthcare team? 

Dr. Adriana Rossi:

I would say contact us anytime there is a question. It’s not too specific. Certainly, any fever. Any sign or concern for infection. And, any neurologic deficit. If someone is not acting themselves, the caregiver’s usually in the best position to recognize that. 

Jamie Forward:

Okay. And, what are the long-term side effects?  

Dr. Adriana Rossi:

Yeah. We’re still learning. Beyond a year, really there shouldn’t be many. We continue to support the patient until recovery of those antibodies, and T cells, and neutrophils. So, there’s a lot of preventive things. Monitoring and time. And, there are these rare neurological toxicities that have been reported, but they’re much less than one in 1,000. And so, it’s hard to learn or to make any generalizations at this time. 

Jamie Forward:

Okay. And, as far as monitoring at home once someone gets back home, in the weeks that follow their time in the hospital, are there certain supplies they should have? It sounds like maybe blood pressure? Perhaps a scale? 

Dr. Adriana Rossi:

Yeah. So, blood pressure and temperature probably are the two more important ones. We actually do discharge patients with a log, and for those first few weeks, we really would like at least twice a day for these numbers to be monitored. And, it’s patient-specific. So, the less you need, the more we graduate out to fewer measurements and less monitoring.  

Jamie Forward:

When it comes to diet and nutrition, are there ways that care partners can help prepare or benefit to a highly nutritious diet? Is there anything related to diet and lifestyle that might be important to know? 

Dr. Adriana Rossi:

No. I think there’s no restriction. The important thing is when your appetite is low, your body needs calories. We’re asking your body to get a lot of work done, and it can’t do that without calories. So, don’t be too picky on only eating fruits and vegetables. If it’s ice cream three times a day, go for it. Make sure you’re meeting a caloric intake. Certainly, nutrition is better. The only dietary restrictions we have are really kind of similar to after a transplant where we’re trying to avoid germs. So, foods that can be cooked, peeled, or washed are really the focus. Things like berries and salads can easily have germs sneak in. So, we do try to avoid those. And again, it’s usually just for that first month or two. Recovery tends to be quick. 

Jamie Forward:

Okay. Great. So, have a lot of ice cream on hand. So, how do you know if the treatment’s working? 

Dr. Adriana Rossi:

Well, most patients will have an M spike or light chain change. So, we can follow that by blood tests. And, as with any other therapy, it’s usually a monthly check of those numbers. 

And then, we follow the paradigm we see in stem cell transplants at around day 100 doing a bone marrow biopsy and a PET scan. 

Again, up to 90 plus percent of patients, will have a complete remission on their blood tests within a month. But, we wait until day 100 to really let that protein have time. There’s a certain time to clear from the system. Check the cells in the bone marrow and really give you full credit for all your efforts.  

Jamie Forward:

Okay. Great. So, we’ve sort of touched on this before, but I think it bears reiterating. So, why is it so important that care partners let the care team know about any changes they see in their loved one? 

Dr. Adriana Rossi:

I think early intervention really leads to success. Most of the toxicities will respond very well to an early intervention. If left untreated, be it an infection, a neurologic finding, a cell count issue, the longer it happens, the bigger of a problem it is, and the harder it would be to turn around. 

So, something that could hopefully be a quick visit to the office could then become an admission to the hospital, and we’d really like to prevent that.  

Jamie Forward:

Okay. Great. So, let’s talk a bit about self-care for care partners. I think this can obviously be a really taxing time. Why is self-compassion essential during this time when you’re caring for someone else? 

Dr. Adriana Rossi:

Because many times, again, the focus is on the patient. But really, we need to recognize it’s stressful for all of us. And, the whole medical team is taking care of the patient. Very few people are paying attention to the caregiver. So, they really need to be able to ask for help. Hopefully, again, it’s not a one-man job. It’s rally the village around the person. We do ask for those first few weeks that it’s 24 hours a day the patient be with someone. But, it doesn’t have to be one person. So, have someone else come in, so you can go exercise, or go get a cup of coffee, or just spend time dedicated to self-care. So that then you can be as strong and as present as you can for the patient. 

Jamie Forward:

And, what are signs of burnout? How can care partners recognize that? 

Dr. Adriana Rossi:

Very hard to recognize, and usually it’s someone else who needs to point it out. But, emotional exhaustion I think is the most common, because it is such an emotionally taxing time. So, having a difficult time concentrating. Being irritable or pessimistic when sometimes the medical’s team’s like, “Everything’s going great.” And still, you’re like, “No. But, it’s not going to last.” Putting a negative twist is usually part of that. You just don’t have the reserves to look forward. And then, changes in sleeping, or eating, or regular habits can also be a flag. 

Jamie Forward:

And, what advice do you have for care partners to make time for self-care? When can they find those spaces for themselves? 

Dr. Adriana Rossi:

I think the biggest thing is to not think that it’s being selfish or that you’re taking away from the partner. 

Think of it as something you are doing for the patient. You are not useful if you’re burnt out and if you’re spent. So, self-care really is a giving activity of strengthening yourself so that you can then be of most use to the patient.  

Jamie Forward:

I think that makes good sense. So, there are obviously social workers at the centers, and obviously these larger CAR T-cell therapy centers have a number of resources. So, what is available to help care partners during this time?  

Dr. Adriana Rossi:

So, social work will meet with the patient and the caregiver to tailor resources, and plans, and support in any way that is specifically useful to them. 

Again, if there is specific paperwork that needs attention. If there are resources, for example, lodging, transportation. All of these things are really tailored to the needs of each individual.  

Jamie Forward:

Okay. And obviously, this isn’t for everybody, but support groups are always a good idea, even if online. 

Dr. Adriana Rossi:

Absolutely. And, we have a number of those. We’re lucky to have a group of social workers, and they each lead different groups. So, if one doesn’t seem to be a good fit, I also think keep looking. There are very specific ones like younger patients or patients of any particular group. But, there are also general patients. There are transplant-specific. And, more and more, there are CAR T-specific groups where patients share their experience. 

Jamie Forward:

Yeah. It’s always nice to know that you’re not alone in these situations.  

Jamie Forward:

So, are there in-home services that can be useful for CAR T-cell therapy care partners during this time?  

Dr. Adriana Rossi:

I’d have to say that’s probably very specific to geographic areas. I happen to work in New York where there are a lot of home services, and it’s very population-dense, and a lot of the services are driven to that. I imagine in parts of the country where there’s quite a bit of distance between the facilities, there are probably programs that are more structured to provide those services. So, that’s probably fairly program-specific. But generally, yes. I just don’t know what they are for each part of the country. 

Jamie Forward:

Before we move on to audience questions, I’d like to add that the Patient Empowerment Network has a wealth of resources available for care partners. You can find those at powerfulpatients.org or by scanning the QR code on your screen.  

Dr. Rossi, here’s a few questions we received in advance of the program from our members. We can start with William’s question. How can a care partner manage the emotional aspects when a loved one is going through CAR T? 

Dr. Adriana Rossi:

I think be patient. Recognize that it’s a really difficult time, even when everything goes according to plan and the medical is very pleased that there’s nothing untoward. It’s just a really stressful time for both of you. So, it’s where we go back to the self-compassion, as well. Take time for yourself and recognize your needs as a caregiver in addition. So, tapping in, again, other friends. A small circle rather than a one-person job. And, being really open with social work on what resources can be helpful. Asking for help, again, is a brave act.  It’s not a sign of weakness at all. 

Jamie Forward:

Sure. And, I think it’s often that people will offer help, and you tend to decline because you think you can handle it early on. And, it is just so much easier to say yes. Say, “Yes. Bring over dinner.” Or, “Yes. I’d love you to come over for two hours while I go out and have a pedicure.” So, yeah. Always say yes when people ask you if they can help, because people want to help. 

Dr. Adriana Rossi:

Exactly. And then, it is that group activity, and it’s a shared experience. 

Jamie Forward:

Yeah. Okay. So, Marianne asks this question. She says how do the aftereffects of CAR T-cell therapy compare to those of stem cell transplant? 

Dr. Adriana Rossi:

Yes. Very different experiences. I think that’s one of my first and loudest messages. Stem cell transplants are really tough. Melphalan (Alkeran) is a very tough drug. The hair loss, the nausea, the weight loss we really do not see with CAR T.  

So, we mentioned you have to have your cells collected. You do get some chemo before getting the cells back. But, that’s as far as they are similar. The chemotherapy that you get before CAR T is called lymphodepletion. It only quiets down the T cells. It’s not a rebooting of all of the marrow the way we do with melphalan. And, the side effects are again, mostly driven by inflammation. So, fevers and neurologic deficits. Remembering that the fevers and CRS are expected in about 80 percent of patients. The neurologic side effects are in under 5 percent. So, much more rare. And, it’s usually with transplant, by day 100, if people were working before their transplant, they start to think of going back. With CAR T, I have patients who are 30 days out asking to go back to work, because they’re bored at home. You really just feel better much sooner.  

Jamie Forward:

Okay. That sounds like a pretty dramatic difference. And, here’s the last question we have from Debbie. She wants to know does the caregiver need to stay at the hospital room with the patient,  or are they only allowed during visiting hours?

Dr. Adriana Rossi:

I think that one is very specific to the center. At Mt. Sinai, we do have specific visiting hours. And, a few exceptions have been made for overnight depending on the specific circumstance. But, most of the time, that is a time the caregiver can go home, and sleep, and be ready at the time of discharge when we really do need them 24 hours.  

Jamie Forward:

Okay. That’s good to know. So, it’s center-specific. Great. So, before we end the program, I’d like to get your closing thoughts on the role of the care partner in the CAR T-cell therapy process. What message do you want to leave our care partner audience with? 

Dr. Adriana Rossi:

I think mostly to please reach out to us. 

We are there not only to take care of the patient, but the global patient experience. So, we are there to support the caregivers, as well. So, please ask questions. Many times, I’ll have had a conversation with a patient many times, and then the caregiver joins later and is hearing everything for the first time. So, please ask questions until everything is clear. And, remember to look after yourself. 

Jamie Forward:

That’s great advice. Thank you so much, Dr. Rossi. We appreciate you being here today. 

Dr. Adriana Rossi:

Thank you.  

Jamie Forward:

And, thank you to all of our collaborators. To access tools to help you become a proactive care partner, visit powerfulpatients.org. Thanks for joining us.  

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

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. 

Expert Perspective | The Value of Empowering AML Patients and Care Partners

 

How can patients with AML and their care partners feel empowered? Dr. Eric Winer, an AML expert, discusses the crucial role of the healthcare team and emphasizes the importance of open communication, asking questions, and understanding the care plan. 

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

As a provider, Dr. Winer, how do you empower care partners and patients who have been diagnosed with AML? 

Dr. Eric Winer:

From a provider standpoint, one of the most important things we need to do is listen and try to understand, first of all, what the patient is going through, and what the patient needs. Like I said, that’s where this is a team approach. It’s a team approach from not just a standpoint of patient and caregiver, patient and physician, patient and nurse practitioner or physician’s assistant, patient and social worker. 

This is a traumatic experience, and there are things that we can try to do to make it less traumatic, but one of the best ways to make it less traumatic is making sure patients are informed, that patients understand plans, that patients understand what’s going to be happening. One of the biggest concerns with any of these diseases is the unknown. There is a certain amount of unknown that I can’t predict.  

I can’t say to somebody you will or will not respond, but what I can say is, listen, here is what we’re going to be doing over these next few weeks, and here is our short-term plan, and here is our long-term plan, and making sure that we’re all on the same roadmap.  

I think that’s really important in terms of empowering the patients. The other thing that is important is that the patients should feel comfortable asking questions, because we’re not expecting our patients to be experts in leukemia. We’re expecting our patients to be the patients. I think of us, in terms of the clinicians, as being sherpas. We’re guiding people through this process, but the reality is they’re doing all the work. We’re just the guides, and so it’s important as guides that we make sure all these questions are answered, all of the information is given to the patient, and that the patient asks for that information.  

The other thing that is important, that is a little overlooked, is taking care of the caregivers as well. It’s very difficult to be a patient, but it’s also difficult to take care of a loved one or a friend during this time. So, it’s important that the caregivers have an adequate understanding as well about what’s going on, and what we expect to be coming forward in the next days and weeks so that they can plan for these processes as well.  

Expert Advice | How to Elevate Your AML Care and Treatment

 
 
How can patients elevate their AML care and treatment? Dr. Eric Winer from Dana-Farber Cancer Institute emphasizes the importance of actively participating in the care journey, staying informed about treatment plans, and seeking a second opinion.
 
Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask Your Doctor

AML Care Essentials | Health Literacy and Recommended Resources

AML Care Essentials | Health Literacy and Recommended Resources 

Transcript: 

Katherine Banwell:

This interview is part of PEN’s Elevate series, which encourages patients to take an active role in their care to improve outcomes. What advice do you have for AML patients who are seeking to elevate their care?  

Dr. Eric Winer:

I think it’s important for people to be an active participant in this care. While we recognize that not everyone has medical expertise when they are going through this, it’s important that they are informed that they would like to be informed. It’s important that they have a full understanding of what’s going on in terms of the treatment, the plan, the short-term plan, and the long-term plan. 

So, there is a lot of information that needed to be digested. What’s important to note is that it doesn’t all have to be digested at that very moment at the time of diagnosis. These are processes. What I tell people is that this is not going to be your only opportunity to talk and ask questions. This is something that we’re going to be going through and doing this journey together. So, I think it’s important that they become an active participant in that journey, not just with themselves but also with whoever their caregiver is, and whoever is important to them that’s going to be going through this journey as well. 

Katherine Banwell:

I understand that some AML cases require treatment shortly after diagnosis. Is there room for a second opinion, and if so, what are the benefits? 

Dr. Eric Winer:

So, there often is room for a second opinion. There are times, quite honestly, like you said, where patients have a really acute problem when they come in, along with the diagnosis, or that the diagnosis has gotten to a point where we need to initiate therapy as an inpatient, urgently. That is becoming less common. It used to be, when I started doing this, that if you had a diagnosis of AML you were admitted to the hospital, and you stayed there until you completed your first round of therapy. That is not the case now.  

Generally, what we’ve learned is that there are studies that show you can actually delay therapy for a period of time in order to make sure that other things are established. Getting a second opinion is very important, particularly as a tertiary care center where physicians specialize in these types of diseases. And so, I think it’s very important to get expert opinions, not just in terms of how to treat the disease but also diagnostically, and to make sure the correct tests are run, the correct molecular studies are run, in order to figure out exactly what would be the best treatment for your individual version of AML. 

The Benefits of Shared Decision-Making for Myeloma Care

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

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

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

Related Resources:

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview

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

Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

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

Dr. Ailawadhi:

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

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

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

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

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

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

Katherine:

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

Dr. Ailawadhi:

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

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

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

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma from Patient Empowerment Network on Vimeo.

How can CAR T-cell therapy barriers for relapsed/refractory myeloma be reduced? Expert Dr. Sikander Ailawadhi from Mayo Clinic shares his perspective about barriers to CAR T and advice for patients to reduce access issues.

[ACT]IVATION TIP

“…the number one way of mitigating any healthcare access issues or the fears and scares about CAR T is, speak with a CAR T designated expert at a center that gives CAR T-cell therapy, and then only make a decision whether you want CAR T therapy for yourself or your care, your loved one or not.”

Download Guide | Descargar Guía

See More from [ACT]IVATED CAR T

Related Resources:

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

Roadblocks for Black and Latinx Patients From CAR T Trial Access

Roadblocks for Black and Latinx Patients From CAR T Trial Access

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

Transcript:

Lisa Hatfield:

Dr. Ailawadhi, what are the most significant challenges or barriers that patients with relapsed/refractory myeloma face when considering CAR T-cell therapy as a treatment option? And how can these challenges be addressed to improve patient outcomes and access to care?

Dr. Sikander Ailawadhi:

Lisa, it’s very important for us to remember that while we talk about CAR T or advancements in myeloma, your question of what are the most significant challenges and barriers for patients with relapsed/refractory myeloma, and especially when they’re considering CAR T, and how do we try to overcome these challenges? This is a very important question. CAR T-cell therapy is very resource and a time-intensive treatment. Patients may not have a CAR T center close to them. They may have to go closer to a center, live there for about a month or so, or sometimes even more.

During this time, the treatment has to be controlled. There are approvals from insurance, there are tests required, in between treatment to control the disease, and then sometimes staying in the hospital, sometimes…and, of course, need for a caregiver, that is such an important requirement. Of course, the promise of treatment is that at the end of it, the patients may come out and maybe, with significant disease control.

But to get to that promised land, we have to walk through this…as I said, a time intensive and a resource intensive situation. Now, all of this is very daunting, is very anxiety provoking, is very scary, in fact. To me, the biggest way of overcoming these challenges, improving access to care, et cetera, is, let that patient see a qualified CAR T-cell center.

And importantly, a physician who gives CAR T-cell therapy, that one consult or one visit can take care of so many fears, anxiety, scares, et cetera, because frankly, all of our centers, all of us who focus on CAR T-cell therapy, we have a whole slew of resources at our disposal which we can bring together for the patients and their caregivers, whether it’s navigators, revenue or finance analysts, social workers, clinical psychologists, these are all a part and parcel of our CAR T-cell journey for a patient.

But frankly, I cannot bring those resources to a patient when they’re not even established with us, or they don’t even set foot through our doors. My activation tip for this question is the number one way of mitigating any healthcare access issues or the fears and scares about CAR T is, speak with a CAR T designated expert at a center that gives CAR T-cell therapy, and then only make a decision whether you want CAR T therapy for yourself or your care, your loved one or not.

Lisa Hatfield:

One quick question. Are you still seeing the bottlenecks for CAR-T therapy since it’s been FDA-approved? You have patients who want it but cannot access it because there’s a bottleneck with a process. Is that a barrier?

Dr. Sikander Ailawadhi:

It’s a good question. So in recent months, we have noticed that the initial bottleneck with availability of slots and numbers for CAR T, those bottlenecks are easing up quite a bit. With both the CAR T manufacturers in the U,S., there is hardly any wait list issue. And if patients are going to centers that are saying that, there’s too long of a wait list, we can’t get you to it, they should go to another center.


Share Your Feedback

Create your own user feedback survey

Dr. Sameh Gaballa: Why Is It Important for You to Empower Patients?

Dr. Sameh Gaballa: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can cancer experts help empower patients? Expert Dr. Sameh Gaballa from Moffitt Cancer Center shares his perspective about the role of physicians and why patient empowerment is essential in shared decision-making for treatment.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Nizar Tannir: Why Is It Important for You to Empower Patients?

Dr. Gabriela Hobbs Why Is It Important for You to Empower MPN Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Sameh Gaballa:

So our role as physicians is really we have to put in front of the patient and also the referring physicians all the information and all the options. And at the end of the day, it’s really the patient’s choice. But our role is to try to walk them through it so that they have the…all the information and all the tools they need to make the right decision for themselves. Because not every patient is going to be the same. There’s always going to be other factors that we have to consider that the patient would really be the one that knows about them so social issues or someone who travels a lot or a caregiver situation.

So all these things, because we’re dealing with human beings at the end. So when we’re trying…we have to assess the whole patient’s situation, not just medically, but also from all other aspects to arrive at the correct decision. And again, at the end of the day, it’s really the patient’s decision to make the call. And we, again, we try to educate them on all the treatment options and all the data, so they really know why, what our recommendation is stemming out from.