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

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

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

Related Resources:

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

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

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

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

 Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners 

Transcript:

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

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

Start with these questions: 

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

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

So, what can you do? 

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

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

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

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

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

Myeloma Care Partners | How Can You Support Your Loved One During CAR T-Cell Therapy? Resource Guide

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

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

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

Dr. Craig Cole:

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

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

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

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

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

Katherine Banwell:

Okay.  

Dr. Craig Cole:

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

Katherine Banwell:

How is this therapy administered and what is the frequency? 

Dr. Craig Cole:

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

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

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

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

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

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

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

Related Resources:

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

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

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

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

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

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

Transcript:

 Katherine Banwell:

How can caregivers find out more about financial support? 

Daniel Verina:

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

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

Katherine Banwell:

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

Daniel Verina:

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

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

Katherine Banwell:

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

Daniel Verina:

Oh, thank you so much. 

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

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

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

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

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

Related Resources:

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

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

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

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

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

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

Transcript:

Katherine Banwell:

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

Daniel Verina:

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

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

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

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

Katherine Banwell:

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

Daniel Verina:

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

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

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

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

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

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

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

Related Resources:

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

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

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

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

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

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

Transcript:

Katherine Banwell:

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

Daniel Verina:

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

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

Katherine Banwell:

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

Daniel Verina:

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

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

Katherine Banwell:

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

Daniel Verina:

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

Katherine Banwell:

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

Daniel Verina:

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

Katherine Banwell:

Pardon me?  

Daniel Verina:

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

Katherine Banwell:

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

Daniel Verina:

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

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

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

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

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

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

Related Resources:

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

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

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

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

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

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

Transcript:

Katherine Banwell:

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

Daniel Verina:

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

Katherine Banwell:

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

Daniel Verina:

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

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

Katherine Banwell:

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

Daniel Verina:

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

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

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How Can Bispecific Antibody Therapy Care Partners Be Proactive? from Patient Empowerment Network on Vimeo.

What are some ways for myeloma bispecific antibody therapy care partners to be proactive? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute shares lifestyle modifications, reasons to speak up and ask questions, and advice for care partners to take proactive steps for both the patient care and self-care during bispecific antibody therapy. 

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

 What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

What about self-care for the care partner? Why is that so important?  

Alexandra:

I feel like this is such a hard thing for people because it always gets put on the back bur ner. And I know a lot of the times it’s like when you’re on an airplane and they say, “Put your oxygen mask on yourself before you put it on anyone around you,” because you can’t help others if you’re running on empty. You really need to take care of yourself.  

Make sure you’re not just functioning, that you’re eating and sleeping and hydrating and taking care of all your own personal needs, but also that you’re taking time for you to kind of reflect and have some time to decompress from everything you are trying to do to help your family member or loved one.  

Katherine:

Why should care partners speak up and ask questions about how they’re taking care of the patient, what they can do to help the patient and themselves?  

Alexandra:

Yeah, I think that these bispecific antibodies are new, and one great thing about them is that overall they are really well-tolerated in general. So, hopefully, it means the patient is feeling pretty good and having a really nice response to their therapy. But if they’re not feeling good, we want you to speak up at home. Again, sometimes patients are the last person that want to tell you there’s a problem because they’re worried about missing their therapy.  

And I always tell patients it’s sometimes not safe, if you do have a cough, if you have had a fever, we want to be safe and maybe hold a dose of therapy to address maybe something else that’s going on and avoid further complications another week. So, if you’re noticing something, I always encourage people to speak up and let us know of any concerns they’re seeing at home. 

Katherine:

Alexandra, during treatment, are there any lifestyle changes that need to be made? Like diet, for instance?  

Alexandra:

No. I mean, a lot of patients definitely want to maximize anything they can do to make themselves feel better and help their myeloma respond. But what we’ve seen is that there’s not one particular diet or cutting out one particular food that’s going to make a long-term or significant impact on any cancer therapy. The best thing that you can do in terms of diet or lifestyle is to try and just maintain a healthy lifestyle to balance all your other medical needs. You want to make sure your blood pressure is in good control.   

You want to make sure if you have diabetes, that your blood glucose is in a good range. Because having those things be in good control is going to make your therapy and potential complications more manageable. 

Bispecific Antibody Therapy Support | Care Team Members and Resources

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Bispecific Antibody Therapy Support | Care Team Members and Resources from Patient Empowerment Network on Vimeo.

What should myeloma patients know about bispecific antibody therapy support? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses care team members and support resources for bispecific antibody therapy patients and care partners. 

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

 What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

Besides yourself, what other staff members can care partners turn to for support?  

Alexandra:

So, at our office, we have an amazing group of triage nurses who are available Monday to Friday all during office hours. We have after-hours. If your patient or family member spikes a fever and you’re worried they just don’t look good, there’s always a doctor on 24/7 that you can page to kinda ask for advice and see what to do from there. And again, we have infusion nurses who are giving these injections every day.  

And they are wonderful resources on what you might feel later in the day, what that site might look like, side effects that might pop up. So, really, anyone wants to be there to answer questions to make it easier for the patient or the family.  

Katherine:

Are there social workers or psychologists on the team as well?  

Alexandra:

Yes. We have an amazing group of social workers at Dana-Farber. And one thing that I really like about the way our program is run is that we have a social worker who is dedicated specifically to myeloma. So, they’re very familiar with these medications and the hospitalization requirements, which can be extremely tough. And so having resources and just someone to talk to, both through social work and our psychosocial oncology department, is also a wonderful resource to have.  

Katherine:

What about online resources? Do you have any recommendations?  

Alexandra:

So, I think that the IMF, the International Myeloma Foundation, and the NCI, have amazing resources for patients.  

Actually, the IMF has an entire caregiver support page with kind of caregiver self-help, and ways that you can care for the patient. Care for the caregiver, and care for the patient. I think the MMRF has wonderful resources, and they also have a lot of online forum videos about bispecific antibodies and the different treatments for myeloma that are available if you want to learn more. And then same thing with The Leukemia & Lymphoma Society. Excellent resources online. 

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

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What Is the Role of a Care Partner in Bispecific Antibody Therapy? from Patient Empowerment Network on Vimeo.

How can a myeloma care partner support a bispecific antibody therapy patient? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute explains ways that care partners can offer logistical and emotional support and shares tips for staying well-informed and organized during the treatment journey.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

 How Has Bispecific Antibody Therapy Impacted Myeloma Care?

How Has Bispecific Antibody Therapy Impacted Myeloma Care?

 Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

As I mentioned, Alexandra, this program is aimed at helping care partners understand the process and how they can support their loved ones. What do you feel is the care partner’s role?  

Alexandra:

I feel like the best way for care partners to support patients is to kind of take the time to learn about the myeloma and the therapy and try to do the best they can to just be there for not just moral and emotional support, but the other little things that they may need. Coordinating rides, if it’s a family member, asking friends for help.  

And then other things like insurance phone calls can be incredibly time-consuming and taxing. Or waiting at the pharmacy to pick up medications. Any, even little things like that, I think take a huge load off the patients who are doing this day in and day out.  

Katherine:

Yeah. Are there key questions that care partners should ask as they begin the process?  

Alexandra:

I think the best thing that patients and caregivers can do is if they have questions prior to the visit is to make a list. ‘Cause, I’m guilty of this myself, as soon as I show up at my doctor’s office, I completely forget what I wanted to say. So, making a list prior to the appointment, I think, is hugely beneficial. And then I don’t think that it’s ever a bad thing to ask for the doctor or nurse practitioner or pharmacist, whoever you’re meeting with, to see if they can repeat themselves. We’re putting a lot of information into a very short period of time.  

And to try and keep track of, again, schedule, supportive care medication, when you’re going to need to be in the hospital, how long, what your follow-up will be, taking notes during the visit or asking to hear it again is always helpful. Not even just for the caregiver, but sometimes for the patient who’s still trying to wrap their head around some of the change in therapy.  

Katherine:

Right. Yeah. That’s really good advice. As we’ve covered, it’s not always easy being a care partner. What would be your best advice for those who are caring for someone undergoing bispecific antibody treatment?  

Alexandra:

I would say it’s hard to put out how important care members are to the entire care team. Again, not just for the logistical, getting the patients to appointments, getting their medication, but really having someone the patient feels comfortable to be able to lean on. And again, they may say, “I’m so overwhelmed in these visits, and I really need some help.  

Could you ask these things?” Helping them keep track of all these medication changes and appointments and visits and any sort of even small things like grabbing them a water so that they’re staying hydrated. Those little things make such a difference to people. And I think doing those things, no matter how small they feel, really helps support the patients through these changes in therapy. 

Bispecific Antibody Therapy | What Is the Treatment Duration and Response?

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Bispecific Antibody Therapy | What Is the Treatment Duration and Response? from Patient Empowerment Network on Vimeo.

What can myeloma bispecific antibody therapy patients expect for treatment duration and response? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses treatment factors that may impact response, common monitoring tests during treatment, and what might be considered an ideal therapy response.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

 What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

 Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

How long will a patient be on a therapy like this?  

Alexandra:

So, we still don’t know exactly the long-term duration of response. I think the most recent update we have was a median of 18 to 22 months was the last report. Which is a great response for what we have in myeloma.  

Katherine:

So, does the length of time a patient is on a therapy depend on the patient themselves, their comorbidities, et cetera?  

Alexandra:

Sometimes their comorbidities, but it is usually more just how their myeloma responds. So, every month when you’re coming in for therapy, even if your therapy is weekly or biweekly, every month, we’re monitoring your myeloma markers, and every month we’ll go over those markers to make sure we’re still seeing a good response. Usually, we’ll do a PET scan or a skeletal survey to also monitor everyone’s bones and any other lesions, they may have.  

Katherine:

What is considered an ideal response?  

Alexandra:

An ideal response. A lot of times we’re seeing everyone’s light chains go to even an undetectable level. So, even if we see some partial responses where the light chains were, let’s say they were 100 and they’re going down into the normal range, that’s still wonderful.  

If it stayed like that for months, we wouldn’t make any changes. But best-case scenario, we see them go to a level that we can’t detect them in the blood work. 

Bispecific Antibody Therapy | Managing Side Effects

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Bispecific Antibody Therapy | Managing Side Effects from Patient Empowerment Network on Vimeo.

What should myeloma bispecific antibody therapy patients know about managing side effects? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses common short-term and long-term side effects, members of the healthcare team, medications for managing side effects, and how care partners can support bispecific antibody patients.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

 What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

 Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

What are the short-term side effects associated with bispecific therapy?  

Alexandra:

Yeah. So, the short-term side effects that we’re watching for are these reactions in the hospital called CRS, cytokine release syndrome, and neurotoxicity.   

So, the CRS is an inflammatory response where cytokines are released and usually cause a fever. We monitor and make sure that the fever isn’t being caused by some sort of infectious process or there’s no other cause for the fever. And if not, then there are medications we can give to help reverse these side effects while you’re in the hospital. 

Katherine:

Who else is on the healthcare team when someone receives these therapies?  

Alexandra:

Yep. So, you’ll always meet with your oncologist or an oncologist at the academic medical center where you’re going to be getting the medication to go over potential side effects, what the treatment entails, and consent. We have nurses here that are specific to bispecific antibodies, that help coordinate with your local team if you’re going back to your local practice. We have the infusion nursing team who are the ones who are actually giving the bispecific antibody therapies. They explain kind of what to watch for at the site where the injection goes. And then we have pharmacists who are also available to meet with you and go over any questions you may have about the treatment.  

Katherine:

What do we know about long-term side effects? Are there any?  

Alexandra:

So, long term, what we’re really seeing is risk for infections. So, all of these medications lower your blood cell counts, and we have to watch for these opportunistic infections, fungal, bacterial, viral.  

Which is why it’s important that we have everyone on supportive medications to try and prevent that from happening. But long term, that is certainly something that we’re seeing. With the talquetamab, there can also be some skin and taste changes, and those are not necessarily right at the inpatient dosing, but we can see that. But those are things we’re also managing in the months after the initial therapy.   

Katherine:

Okay. Why is it so important that care partners let the healthcare team know of any changes that they see in their loved ones?  

Alexandra:

I say this to my patients and their families all the time. They know their family member best, and they may be one to notice that they’ve been more tired, or their energy just isn’t the same, or they do have a little cough that maybe the patient hasn’t even really noticed. And those are all things that we want your observation, we want you to speak up about, because the sooner we address some of these problems, the less complications the patients may have.  

Katherine:

What are the supportive medications for somebody who might be having side effects?  

Alexandra:

Yeah, so with the talquetamab (Talvey), which we’re primarily seeing a lot of skin side effects and mouth discomfort, a lot of the time we have special mouthwashes to prevent discomfort and irritation. Things like biotin to just keep the mouth moisturized. Steroid creams and nail ointments to help with sometimes some peeling of the skin.

And then for all bispecifics, we have everyone on viral prophylaxis. Something like acyclovir (Sitavig or Zovarax) or valacyclovir (Valtrex). PJP prophylaxis. So, something like sulfamethoxazole and trimethoprim (Bactrim) or dapsone (Aczone). And almost all of our patients are on an IVIG infusion once a month to help support their immune system and prevent against infections.  

Katherine:

Alexandra, you mentioned care partner looking for a cough, for instance, in a patient.  

What other things should care partners be looking for?  

Alexandra:

Any kind of change in the patient’s baseline is always helpful to know. So, if people are feeling much more tired, even if you’re not due for your therapy, sometimes calling to say that they just don’t seem themselves, we can check their blood counts. And again, sometimes they might need a blood transfusion, or their white count might be quite low, and they might need some Neupogen or filgrastim to help kind of support their blood counts. So, really kind of notifying us, even if it doesn’t seem like a big thing, it’s always better to call. 

How Is Bispecific Antibody Therapy Administered?

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How Is Bispecific Antibody Therapy Administered? from Patient Empowerment Network on Vimeo.

How is myeloma bispecific antibody therapy given to patients? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute explains how the treatment is administered in the body, hospital types to access the treatment, and what patients should expect for the procedure and monitoring.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

 What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

So, let’s dive into the process. How is this treatment administered, and what’s the frequency?  

Alexandra:

So, currently, all of the bispecifics are given as subcutaneous injections.  

And all of them do require a current hospitalization visit, somewhere between four and 10 days, depending on which medication you’re getting and what schedule you’ll be on. So, everyone is required to be in the hospital. Again, we’re trying to move that outpatient to minimize patients’ times in the hospital if we have to. And you get a lower dose with that first exposure to each of the medications, and then we build up the dose for the doses in the hospital into what will eventually be your outpatient weekly, or biweekly dosing.  

Katherine:

Okay. Are there only certain medical centers that have this therapy? How widely available is it?  

Alexandra:

So, right now, the step-up dosing, the inpatient hospitalization part of bispecifics is primarily only at academic medical centers. So, it is a little bit more restricted in that initial therapy. But what we are seeing is that a lot of the community practices are able to enroll and give these medications in the community.  

So, some patients will come see us for a consult and the initial step up, but then they’re able to go back to their primary team after the first cycle so that they’re not commuting back and forth to Boston all the time.  

Katherine:

That’s good to know. So, once the therapy has been given to a patient, what happens next?  

Alexandra:

When you’re admitted for these initial step-up dosings, we closely monitor you for reactions in the hospital. That’s why we kind of are doing this in in-patient settings to monitor very closely for CRS and neurotoxicity, which we’ll talk about a little bit later. While you’re in the hospital, they’re checking your labs every day, they’re monitoring your vital signs, they’re doing silly questions like, “Do you know your name and the year,” to kind of monitor how you’re functioning. Once you have passed kind of the step-up dosing, either you’ll come back to me and your primary team at Dana-Farber, or we’ll communicate with your local team to set up your schedule for moving forward. 

Bispecific Antibodies for Myeloma | Patient Eligibility Requirements

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Bispecific Antibodies for Myeloma | Patient Eligibility Requirements from Patient Empowerment Network on Vimeo.

What are the myeloma patient eligibility requirements for bispecific antibodies? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses patient types that work well with bispecific antibody therapy, patient eligibility requirements, and updates about research developments with bispecifics.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

Bispecific Antibody Therapy | What is the Treatment Duration and Response?

 How Is Bispecific Antibody Therapy Administered?

How Is Bispecific Antibody Therapy Administered?

 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

Well, who is this treatment approach approved for, and what are the eligibility requirements?  

Alexandra:

So, one thing that’s great about bispecific antibodies is that there is not a lot of restriction on who we can use these therapies for. So, these are great for patients who are a little bit more frail or maybe aren’t up for something like a CAR T, or whose disease is a little further along, and they don’t have time to wait for something like CAR T, which requires collecting of cells and manufacturing. What’s great about these medications is that they’re off the shelf. They’re ready to go kind of when you need them. There are restrictions in terms of how many lines of therapy that you need to have had before you can currently get bispecifics.  

So, right now, you need to have four prior lines of therapy, and that needs to include an immunomodulatory agent. So, something like a lenalidomide (Revlimid) or a pomalidomide (Pomalyst), a proteasome inhibitor like bortezomib (Velcade), and a monoclonal antibody like daratumumab (Darzalex) before you’re eligible for these.  

Katherine:

Have there been any recent bispecific antibody research developments that patients should know about?   

Alexandra:

So, there are at least three bispecific antibodies that are hopefully coming into approval in the next several months to year, cevostamab being one of them. It’s a very exciting time for myeloma with all of these medications being approved. Teclistamab (Tecvayli), elranatamab (Elrexfio), and talquetamab (Talvey) in the last year. There’s still a lot of research on bispecific antibodies, especially trying to bring them all outpatient instead of just having inpatient treatment, and in addition, looking at them with other medications, such as teclistamab with daratumumab. 

How Has Bispecific Antibody Therapy Impacted Myeloma Care?

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How Has Bispecific Antibody Therapy Impacted Myeloma Care? from Patient Empowerment Network on Vimeo.

What has been the impact of bispecific antibody therapy for myeloma care? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute discusses how bispecific antibody therapy fights cancer and patient situations that are served especially well by the therapy.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Bispecific Antibodies for Myeloma | Patient Eligibility Requirements

Bispecific Antibodies for Myeloma | Patient Eligibility Requirements

 How Is Bispecific Antibody Therapy Administered?

How Is Bispecific Antibody Therapy Administered?

 Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

We’re going to be focusing on bispecific antibody therapy. It’s a relatively new approach. What is it exactly?  

Alexandra:

Yeah. So, bispecific antibodies are a really exciting new therapy in myeloma that we’ve had for within the last year.  

So, we have three bispecific antibodies that are currently approved right now. And the way that they work is, the medication binds to the tumor site on your plasma cell, where the myeloma cell is, and it binds to a T cell, which is your immune system cell. And it kind of works to redirect the T cell, your immune system, to kill off the cancer cells in your body.  

Katherine:

Okay. How has this treatment impacted the state of myeloma treatment and care?  

Alexandra:

This has been a great option for patients who are now triple-class refractory and further into their myeloma journey. The development of these new drugs represents really kind of a new era in myeloma. We’re having a lot of patients who are now exposed to more therapies with using three or four drug therapies in the first-line setting. So, having an extra line of therapy now further down the road has been a great option for a lot of patients.