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Expert Perspective | How Bispecific Antibody Therapy is Transforming Myeloma Care

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

 What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Care Partners | Tools for Self-Care and Managing Emotions

Care Partners | Tools for Self-Care and Managing Emotions

Transcript:

Katherine Banwell:

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

Tiffany Richards:

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

Katherine Banwell:

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

Tiffany Richards:

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

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

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

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

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

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

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 What happens during CAR T-Cell therapy process? Dr. Adriana Rossi, a myeloma specialist, walks through each part of the process and the role that care partners play in each step, emphasizing the importance of communication with the healthcare team.

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:

Advice for Myeloma Care Partners | Monitoring for CAR T-Cell Therapy Side Effects

Advice for Myeloma Care Partners | Monitoring for CAR T-Cell Therapy Side Effects

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

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

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

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

Transcript:

Jamie Forward:  

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:  

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 (Abecma) and two weeks for cilta-cel (Carvykti) 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. 

Advances in CAR T-Cell Therapy Side Effect Management

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Are there new ways to manage the potential side effects of CAR T-cell therapy? Dr. Rahul Banerjee, a myeloma specialist and researcher, reviews common side effects of this treatment option and discusses new ways that providers are approaching the management of both short-term and long-term issues. 

Dr. Rahul Banerjee is a physician and researcher specializing in multiple myeloma and an assistant professor in the Clinical Research Division at the University of Washington Fred Hutchinson Cancer Center in Seattle, WA. Learn more about Dr. Banerjee.

Download Resource Guide

Related Resources:

CAR T-Cell Therapy for Myeloma | Challenges and Unmet Needs

CAR T-Cell Therapy for Myeloma | Challenges and Unmet Needs

 Myeloma Research | Updates in CAR T-Cell Therapy

Myeloma Research | Updates in CAR T-Cell Therapy

 How Long Is CAR T-Cell Therapy Effective in Myeloma? An Expert Explains

How Long Is CAR T-Cell Therapy Effective in Myeloma? An Expert Explains

Transcript:

Katherine Banwell:

Well, let’s talk about side effects of CAR T-cell therapy. What advances are being made in managing them?  

Dr. Rahul Banerjee:

Excellent question. So, I break the toxicities into short-term and long-term toxicity of CAR T therapy.  

And this is actually fairly similar for both, regardless of the underlying disease, whereas lymphoma, leukemia, or myeloma, very similar. Just so everyone, just to reorient the audience, short-term toxicities, people often talk about the big two. I’m going to say the big three, actually. The first one is cytokine release syndrome, or CRS, which is inflammation, typically causing fever, sometimes low blood pressure. 

The second is neurotoxicity, or ICANS. For reasons that aren’t entirely understood, sometimes all those chemicals from inflammation can cause people to feel a bit off mentally or cognitively. Sometimes people might not be able to talk, or might not talk correctly, or sometimes have issues along those lines. 

And the third, I would say, is low blood counts or infections. Both the lymphoma, leukemia CAR Ts and the myeloma CAR Ts very rapidly deplete the good plasma cells or the good lymphocytes, the good cells in the bone marrow, and so immediately you see patients at risk of infections. 

And for a complicated number of reasons, one of which being cytokine release syndrome, CRS inflammation within the bone marrow, where all these cancer cells are hiding, the stem cells in the bone marrow hide away, right? They kind of go into a bunker to stay away from all of this. And so patients often have low blood counts for significant amounts of time after CAR T therapy, something called hematotoxicity. 

Those are short-term toxicities. Long-term, very briefly, that risk of infection and low blood counts is still there, I would say, for up to a year after CAR T therapy, sometimes longer for some patients. There is a risk, obviously, of the original cancer coming back, in this case the myeloma, particularly myeloma. 

And three, there are rare delayed toxicities to be on the lookout for. So, one of them, for example, with cilta-cel or Carvykti, the numbers are hard to see what the rate is prospectively because it’s been going down with time.  

But rarely, I would truly in my heart say 1 percent of the time, if not less, patients can get Parkinsonism, where they’re not able to move as rapidly, they’re not able to, they’re kind of shuffling gait, having tremors, et cetera. Not the same as normal Parkinson’s disease, because the normal meds don’t work, just time is often the only thing that really makes a big difference. 

Technically, there’s a box warning on all CAR T therapies now about a risk of second cancers. That risk is not new to anyone who’s ever received any treatment for myeloma because from the very beginning, we tell people that these drugs have been linked to a potential risk of second cancers in the future.  

In terms of strides that are being made to improve that, I think we’re making a lot of improvement. So, I think the biggest thing that we’ve learned, and I remember when I was a trainee, for example, when I was in my medical training, the early days of CAR T therapy – actually out in Philadelphia, I trained at Penn – and there, we were scared about trying to tone down the inflammation.  

When these side effects happen in the short term, the goal is if the patient’s obviously having side effects, and the question is, “Can we not kill the T cells? Can we just dial that down?” Say, “Look, I’m happy the T cells are angry. I’m happy they’re killing the cancer, the myeloma in this case. But can you just dial it down a little bit with a medication called tocilizumab (Actemra), or corticosteroids like dex?” 

We used to be very nervous about doing that because we said, look, the patient’s put all this blood, soil, sweat, and tears right into this CAR T therapy, and we don’t want to do anything that can hinder the T cells from working.  

Now we know that that level of inflammation is not doing anyone any favors at all, and so we’re able to really start these medications to just dial down the immune system faster. As soon as someone has a fever, for example, at many centers, we do consider, within an hour or two, giving one of those medications. Don’t wait till they’re in the ICU, give it then.  So, I think just tweaking our algorithms has made probably the biggest difference, in my mind, to make CAR T safer.  

Other things that have helped, I think, are better understanding of why patients have these other toxicities and strategies to prevent it. And so, for example, the neurotoxicity risk, some of it is part of disease burden. We think that patients who have a lot of disease going into CAR T therapy may have more toxicities. So, giving better treatments as, quote-unquote, “bridging treatment” before CAR T therapy that we have better, newer treatments now, have sometimes helped to really debulk the disease before going to CAR T.  

That’s helped a lot with side effect management. In terms of long-term risk, the third thing that I really encourage all my patients and all my oncologist partners in the community to really push for is the infection risk and how do we prevent it? So, I think probably the biggest thing that we’ve recognized is intravenous immunoglobulin, which is IVIg, which is basically an antibody transfusion.  

When people donate blood, they also donate plasma, often, and the plasma contains antibodies against whatever they themselves have fought off circulating in the area – viruses, colds, et cetera. 

You can take all those antibodies, put them all together into a sterile bag, and give it to the patient who’s gotten CAR T therapy. Because the patient’s gotten CAR T therapy, assuming it’s working, which it normally does for several months, right, to knock out all cells, good and bad immune cells, that patient is not making any antibodies at all. They’re a sitting duck for infections. And so I would say IVIg, using that routinely now is not just the exception once they’re having infections, but even in the absence of infections, just giving it.  

Insurance companies are not happy with me when I suggest that because it’s expensive, but that’s the right thing to do for patients, and I think that has helped a lot, in my experience, for all of these immunotherapies, both CAR T and bispecific antibodies, to lower the risk of infections. 

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

 Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Transcript:

Katherine Banwell:

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

Dr. Craig Cole:

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

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

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

Katherine Banwell:

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

Dr. Craig Cole:

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

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

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

 Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

 Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Transcript:

Katherine Banwell:

Do side effects vary from patient to patient? 

Dr. Craig Cole:

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

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

Katherine Banwell:

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

Dr. Craig Cole:

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

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

Katherine Banwell:

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

Dr. Craig Cole:

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

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

Katherine Banwell:

Yeah.  

Dr. Craig Cole:

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

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

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

Katherine Banwell:

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

Dr. Craig Cole:

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

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

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

 Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

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

Dr. Craig Cole:

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

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

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

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

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

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

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

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

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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.  

Follicular Lymphoma Expert Q&A: Coping with Relapse and Managing Treatment Side Effects

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Follicular lymphoma expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center empowers patients and families with practical guidance on key aspects of managing follicular lymphoma. Dr. Maddocks covers effective strategies for managing treatment side effects, navigating the challenges of relapsed or refractory disease, and defining what survivorship means for both patients and their care partners.

Download Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

 Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

 What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects?

Transcript:

Lisa Hatfield:

Welcome to this START HERE Patient Empowerment Network program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their healthcare team. I’m Lisa Hatfield, a cancer survivor and also an Empowerment Lead at Patient Empowerment Network. Joining me today is hematologist-oncologist

Dr. Kami Maddocks, Professor of Clinical Internal Medicine in the Division of Hematology at The Ohio State University Wexner Medical Center. Dr. Maddocks specializes in treating patients with B-cell malignancies, including non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, and chronic lymphocytic leukemia. Dr. Maddocks researches new therapies for these hematologic malignancies, largely through evaluating new targeted therapies in clinical trials. Thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Thank you, Lisa. It’s a real pleasure to be here with everyone today and talking about follicular lymphoma, and I just really appreciate you having me.

Lisa Hatfield:

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. Joining us are patients and care partners facing a follicular lymphoma diagnosis, some of which are newly diagnosed, in active treatment, watch and wait, and also living for years with their disease.

START HERE is designed to provide easy-to-understand, reliable, and digestible information to help you make informed decisions. I’m thrilled you’ve joined us. Please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. Okay, Dr. Maddocks, let’s start here. What is the latest in follicular lymphoma, and what are the most important highlights for patients and families?

Dr. Kami Maddocks:

When we look at some of the stuff that’s changed in follicular lymphoma, there has actually been some really exciting developments just in the last year in follicular lymphoma. So when you look at patients who have relapsed or refractory follicular lymphoma, we’ve actually seen the approval of three different new therapies just in the last year for relapsed/refractory follicular lymphoma. So one of those therapies, we saw a brand new approval, and that’s a therapy which combines an oral targeted therapy with a monoclonal antibody.

So the combination of the CD20 antibody, obinutuzumab (Gazyva), in combination with the BTK inhibitor zanubrutinib (Brukinsa) was approved in March of 2024 for patients with relapsed/refractory follicular lymphoma. And this was based on a study that compared that to the single agent anti-CD20 antibody. So while we have had CD20 antibodies approved in both original treatment for follicular lymphoma and relapsed disease, it was the first time that we’ve had a BTK inhibitor approved for the treatment of relapsed/refractory follicular lymphoma.

In May of 2024, we saw the approval of actually the third chimeric antigen receptor T cell or CAR T-cell therapy for relapsed/refractory follicular lymphoma. So previously, we’ve had two different CAR Ts that target the same antigen or protein CD19 on the cell. And the third therapy with the same target was approved in May of this year for relapsed/refractory follicular lymphoma. And then in June of 2024, we actually saw the approval of the second bispecific antibody for the treatment of relapsed and refractory follicular lymphoma.

So previously, we had one approved almost two years ago in December, and a second one, epcoritamab-bysp (Epkinly) was approved in June of this year for patients with relapsed/refractory follicular lymphoma. So three different treatments approved in this setting in the last year, which increases the options for patients. It also provides us with thinking about sequencing these agents. And there’s a lot of studies ongoing to decide or to think about what is the best way to sequence therapy, because there’s no right or wrong answer currently in which therapy did you choose and when in patients with relapsed/refractory follicular lymphoma.

And then thinking about managing when we’re choosing these therapies, what are the side effects of these therapies and managing these side effects? Right? Because chemotherapy is often used for patients with initial diagnosis, and there is very specific side effects to chemotherapy and ways to manage those side effects. But when we look at some of these newer therapies, we have to think about the different toxicity profiles that they have and how we manage those toxicities.

So when we’re thinking about the newer therapies, like bispecific antibodies and CAR T-cell therapies, there’s very specific toxicity with those therapies, including cytokine release or CRS. And then something called ICANS, which is immune effector cell-associated neurologic toxicities, which are neuro side effects of these therapies. And so how do we identify and manage those therapies and now even looking at ways to potentially prevent patients from having those specific toxicities.

Lisa Hatfield:

Okay, thank you. So regarding those toxicities, like the ICANS and the CRS, is there a difference in how you treat patients? For example, if a patient might experience those side effects, are they hospitalized for that type of treatment initially, or are all of these new treatments done on an outpatient basis?

Dr. Kami Maddocks:

Yeah, that’s a great question. So the answer can be variable depending on the specific product or the center where the patient’s receiving them, and then even the disease that they’re used in. So let’s just talk about bispecific antibodies to start. So the first bispecific antibody that was approved in follicular lymphoma was mosunetuzumab-axgb (Lunsumio). There’s no required hospitalization to administer that, but there is a recommendation that if patients have signs or symptoms of cytokine release.

So the primary symptom is fever. That’s the number one most common symptom that patients will get and how we define cytokine release. But patients can also have hypoxia or a drop in the oxygen or hypotension and a drop in their blood pressure. So if they have these, it’s generally recommended that they’re admitted for a period of observation to ensure that those toxicities don’t worsen or escalate and that they’re treated if they do.

Which treatment can include ruling out other causes. Some patients may need antibiotics if they have low blood counts and a fever. Some people will need fluids and oxygen. Then sometimes we use steroids like dexamethasone (Decadron) or even cytokine blockers to help manage those side effects, particularly if they’re what we call higher grade or more significant. The second bispecific antibody epcoritamab-bysp. That was previously approved in diffuse large B-cell lymphoma and there was a recommended hospitalization with a step-up dosing for that.

However, in follicular lymphoma, when they studied that, they gave an extra dose. So part of trying to prevent the cytokine release is giving a lower dose and then increasing the dose each week until you reach the maximum dose. So they added an extra kind of intermediate dosing in the follicular dosing and showed that that made a lower risk of…a lower number of patients had cytokine release. And that the majority of them had the lowest grade cytokine release.

So in follicular lymphoma, it’s actually with that increased one dose in there to get to the maximum dose. It’s actually not recommended, or it’s not required that patients are hospitalized for any of the doses. But, of course, if they would, same thing, if they would have side effects, then you would consider that. And then the same thing could be said for the CAR T-cell therapies. Some of them are given inpatient and then patients are monitored for a period of time, and then some are administered as an outpatient. And patients are seen daily for that to check on how they’re doing, monitor for side effects, have labs. And sometimes it just depends on the center administering the therapy, how they have a setup for patients to be monitored.

Lisa Hatfield:

So I have two follow-up questions to that overview. Are these newer approved therapies, are they available at some of the smaller cancer centers, or are they only available right now at the larger cancer centers or academic centers? Then my second question is, are they limited duration therapies or like bispecific antibodies, does that just continue until disease progression?

Dr. Kami Maddocks:

Yeah, those are great questions. So in general, if you look at the combination of the obinutuzumab and zanubrutinib that should be able to be administered anywhere, the therapy for the oral therapy is continued until progression. If you look at the bispecific antibodies, there’s both. There’s a time-limited therapy, and then there’s one continued until progression. I think in general, we’ve seen that initially these have been used at larger treatment centers, but now that they’ve been approved for a while, we have seen a lot of these being used at smaller cancer centers and in the community centers. Sometimes patients may receive their initial dosing at a larger center and then transition to a local center. But I think, like I said, now, especially the one that’s been approved for a while, we’re seeing that it can be started at many places.

Lisa Hatfield:

Thank you so much for that important overview, Dr. Maddocks. All right, it’s that time where we answer questions we’ve received from you. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care. Always consult with your own medical team. So before we dive into this Q&A, since this program centers on coping with relapse and managing treatment side effects, how do you approach these first-time conversations with patients and their care partners who are facing relapse and potentially dealing with a new set of side effects due to the changes in their treatment regimen?

Dr. Kami Maddocks:

I think that’s a great question, and I think there are a lot of things to consider. So I think the first thing that we want to think about when we’re talking about patients having relapsed or refractory follicular lymphoma is that just because patients have relapsed or refractory follicular lymphoma doesn’t always mean that they need treatment. So many patients, when they’re initially diagnosed with follicular lymphoma, are going to go through a period of observation or watch and wait where we know that they have follicular lymphoma, but they don’t have symptoms of their disease.

They don’t have a large number of lymph nodes involved, or their lymph nodes are not very large by the scans, and they don’t necessarily need to be treated until they become symptomatic or have certain concerns from their lymphoma that’s causing problems. So the same thing can happen probably more with relapse than necessarily refractory disease, but patients may…you may detect on scans that they have lymph nodes that are growing or that their disease has recurred, but they don’t always necessarily need to receive treatment.

Once you’ve identified that, yes, a patient requires treatment for their relapsed or refractory follicular lymphoma, the next thing to think about is that patient and their disease. So what age is the patient? What were they treated with initially? Because not all patients receive the same initial therapy. So the decision about what they’re going to receive when they relapse is going to be somewhat dependent on what they received for their initial therapy, what side effects they had from that therapy, and how they responded to that therapy.

The next thing is going to be that there is not just one option at relapse so really discussing the different options for those specific patients, and what are the options, what are the side effects of those options, what is the treatment schedule of those options? Because some treatments may have more toxicity, but they’re time-limited, whereas other therapies may be continued to help progression, they may have less toxicity, but over time that’s a toxicity that patients continue to experience on a daily basis.

So really talking to the patient about the options, what does the schedule of that treatment look like? Do they have to come in weekly? Do they have to come in once a month? And then again, the side effects and how that fits into side effects that they had with their initial therapy, how they tolerate that, are any of those side effects still there?  For example, if a patient has neuropathy from their therapy, that might be something that lasts and then considering all those things and making an informed decision with the patient.

Lisa Hatfield:

Okay, thank you. And these questions are in the perfect order, because we have a question from Lauren asking you, what is the difference between relapsed and refractory? 

Dr. Kami Maddocks:

Okay, this is another great question. I’m sure all these questions are great. When we think of relapsed disease, we think of a patient who’s had therapy, got in a response to that therapy, that response has lasted some time, and then their disease recurs. When we think of refractory, we think of that more as patients that have received a therapy, and they haven’t responded. Now, there is no standard definition of refractory. So we all agree that if a patient gets a treatment and their disease does not respond to that treatment, they’re refractory to that treatment.

But there’s no defined time for which if a patient has a treatment and responds to that treatment but has a short relapse, what’s really considered refractory. In general, a lot of studies that look at a therapy say that if you’ve had it, like if you’ve had rituximab (Rituxan) and you’ve relapsed within a six-month time frame, that that’s refractory. But some studies use three months instead of six months.

Lisa Hatfield:

Okay, thank you. Another patient, Jeff, is asking, Dr. Maddocks, I’m currently in an observation stage of non-Hodgkin lymphoma. I get blood work twice a year and scans once a year. I’m hoping it stays slow-growing. How long on average can a person live in observation mode before treatment must occur?

Dr. Kami Maddocks:

So this is another great question. And I’m going to provide kind of an overview that we’ll kind of set up, because there may be more questions like this. But in general follicular lymphoma is not one disease, which I’m sure since this is a program focused on relapsed/refractory follicular lymphoma, a lot of patients have heard this and know this. But it’s what we call it’s very heterogeneous, or it can behave very differently in patients, meaning that some patients will have very indolent disease, and then there’s a small portion of patients whose disease will be more aggressive.

We know that when we diagnose patients with follicular lymphoma there are some patients that are diagnosed and require treatment pretty quickly, whereas there are other patients that go many years, many, many years without requiring treatment. Some of that is because of the disease, and some of that is because of how we find a patient’s follicular lymphoma. Some patients, we don’t find it until they present with symptoms. Some patients find their own lymph nodes, and some patients are diagnosed because they have a baseline scan that for a totally different reason, maybe get into a car accident, have scans to make sure nothing’s broken, you find an enlarged lymph node, you biopsy it, and you find this diagnosis.

All that said, there are some studies that have looked at patients who are on observation or watch and wait and looked at treating patients who have what we call low tumor burden, or not a lot of lymph nodes, or not very large lymph nodes, but have what’s called advanced stage disease. So lymph nodes on both sides of the diaphragm, not large enough to necessarily require more aggressive treatment, they don’t have symptoms. But we’ve treated, we’ve looked at studies treating those patients with observation or watch and wait or single agent rituximab (Rituxan) therapy. And when you look at the patients in those trials, the median time to needing treatment for patients from observation was three years.

However, there were 30 percent of patients, so one out of three patients who were still being observed at 10 years without requiring any therapy. So there are patients, that’s almost a third of patients at 10 years who’ve been observed, not required therapy in that population of patients. And certainly I have been practicing for a while where I’ve seen patients, I do have some patients who’ve gone longer than that without needing therapy.

Lisa Hatfield:

Okay, thank you. And there you go, Jeff, we hope that you’re in that third. 

Okay, thank you for explaining that. Next question, I’m not sure if it’s Jeff Run or Jeffrey is asking about the most common side effects that are associated with bispecific antibodies, and what precautions can be taken to reduce the risk of infection?

Dr. Kami Maddocks:

Yeah, another great question. There are two different bispecific antibodies that are now approved for relapsed/refractory follicular lymphoma. And I will take this time to also say that some of the exciting ongoing work is looking at those agents in clinical trials, in the frontline setting, in combination with other therapies particularly non chemotherapies.In general, I would say similar side effect profile. The most common side effect between them is the cytokine release or the CRS. So that is the most common side effect. Again, this can be defined in different ways. The most common side effects that you see from that define CRS are fever, hypotension or low blood pressure, hypoxia or low oxygen, shortness of breath, chills, tachycardia or higher heart rate. 

We have talked a lot about CRS and what it entails and how it is defined and presents. But management, it depends on what we call grading. So for patients who just, who have a fever, oftentimes, number one, you want to make sure that it is CRS and that there’s not an underlying cause. So ruling out infection or coexisting infection, if a patient is neutropenic or has a low neutrophil count and is at high risk for infection, you may treat them with antibiotics with a fever while you rule out infection.

But oftentimes, if they have a fever, you can manage symptomatically anti-fever medications like acetaminophen (Tylenol). If a patient has worsening CRS and has other symptoms associated with it, such as the hypoxia, low oxygen, or hypotension, low blood pressure, then that’s when we escalate therapy. So one you direct treatment towards that. So if they need fluid, if they need oxygen, but then that’s when you’re thinking about starting medications such as the steroid medication. So we give intravenous dexamethasone, or there are certain cytokine blockers such as tocilizumab (Actemra) that can be given to help treat the side effects of the cytokine release.

Other common side effects or that we’re seeing in more patients in the clinical trials, fatigue, rash, and then infections including upper respiratory infections, and then COVID-19 infection as well. So part of treatment of these side effects is early recognition of the side effects. So patients are monitored closely and that you’re dealing with the side effects to help them from worsening. I think infection prevention is very important with these. So it’s recommended to consider prophylaxis for certain infections. So antiviral medication to prevent viral, such as shingles reactivation, medication to prevent a specific type of pneumonia, PJP pneumonia, and then consideration I think of just making sure that patients are up to date on vaccination. And if patients do have infection while they’re getting treated, potentially delaying treatment or taking a break in order for them to recover from treatment.

Lisa Hatfield:

Okay, thank you. And this person did not give their name but is asking, Dr. Maddocks, I wanted to know how to travel as safely as possible. Is it advisable to get certain vaccines for travel like yellow fever? I plan to travel to Europe via plane and cruise. They say that there’s stage III non-Hodgkin’s follicular lymphoma getting treatment every eight weeks.

Dr. Kami Maddocks:

So this is a great question, and I’m probably going to answer this a little bit more generically, because I think that it can depend a little bit as far as what specific vaccines. But when thinking about travel, I think that it’s a good idea to look at where you’re traveling because both, where you’re traveling time of year you’re traveling and what you’re going to do when you’re somewhere can depend on what vaccines are recommended. I usually advise patients to consider looking at the CDC guidelines for recommendations for what should be received in that area, travel that time of year, what they’re going to be doing.

And then sometimes there are places that will actually have a travel clinic. Once I know what vaccines are recommended, the patient knows what vaccines are recommended, then I usually work with them and pharmacy to decide what vaccines, if they can receive all those vaccines or if there were certain ones that we may not recommend. In general, it can depend on a patient, what treatments they’ve received or if they’re actively receiving treatments. But in general, we like to avoid live virus vaccines in our patients. So I take into all those factors and then would recommend discussing the specifics with your physician.

Lisa Hatfield:

Luca is asking what are the long-term side effects of bispecific antibody treatment, and how will I be monitored for them after treatment ends?

Dr. Kami Maddocks:

So another great question. I think, when we think about the side effects in general, the bispecific antibodies in the CAR T both have those unique toxicity, cytokine release being the most common. And then you also have worry about the neurological toxicity. The difference is that, depending on the specific, bispecific or CAR T that you use, but we usually, typically see these occur in lower grade or not as severe with a bispecific antibody than you can see with a CAR T-cell therapy.

You can still have cytopenias and infection risk with these therapies. Whereas in chemotherapy, we think of that as more generalized toxicities, with the cytopenias, with the risk of infection with the GI toxicities. When we think about long-term side effects, so I think one of the important things to recognize is that bispecific antibodies have not been around that long in the scheme of things, though we can’t say, the risk of 20 years, what do we see or even 10 years.

But when we think about what we have seen, we’ve seen things like the cytokine release, the infections, the cytopenias, but what we haven’t seen is things like the secondary malignancies that we worry about when we think about chemotherapy or even maybe immunomodulatory therapy or secondary cancers that patients can develop. I think for long-term monitoring, right now, at least the biggest thing you want to think about is that these therapies do deplete the lymphocytes, for a prolonged time. And so the risk of viral infections or reactivation of infections, and making sure that’s being considered.

Lisa Hatfield:

Okay, thank you. That’s an important question. So another may possibly be a care partner, Marilyn. How can I best support my loved one during relapse and what should I do if I notice my husband with new or worsening symptoms?

Dr. Kami Maddocks:

So another great question. I think it’s first of all important to ask the physician about what symptoms to watch for. So you know, are there certain worsening new symptoms or worsening symptoms that seem more likely to be related to follicular lymphoma versus something else. I think it’s always important to encourage your loved one if they are experiencing new symptoms to reach out to the physician so that they can be evaluated. Because follicular lymphoma is a disease that many people live with and many people live with it for many years. We know that patients can experience other things.

Not everything is going to be just because of the follicular lymphoma. So it’s important to be evaluated, and recognize what is going on and what is attributed to the follicular lymphoma. I think being supportive, thinking of questions to ask and making sure that those questions are answered. I think thinking about, are there resources available? I think educating yourself is one of the most important things that people can do. So knowledge is power. So just participating in things like this I think can be very helpful, because learning about what’s out there, knowing that there are many options, I think being supportive and having a positive attitude, are all helpful things.

Lisa Hatfield:

Okay, thank you. So we have another big and important question from Aubrey. How can I live a full life with follicular lymphoma while managing the emotional toll of knowing the disease may relapse? And what lifestyle changes or habits should I focus on to maintain my health during remission?

Dr. Kami Maddocks:

Yeah, so this is another great question, and I think there’s probably lots of different ways to answer this or lots of different things to consider. So I think in general, as we’ve talked about follicular lymphoma is something that people live with for a long time. So thinking about just your general health and general disposition. So, we want to think about incorporating exercise, incorporating a healthy lifestyle, thinking about exercise, and being physically active.

Thinking about particularly diet and not saying that there’s any food that you need to avoid or any specific thing, but I think eating healthy is important. I think sleep hygiene is, can be very critical for patients. I think finding, and then just general health, it’s good to have a PCP so that you’re getting good routine health maintenance. We have to think about making sure that we’re managing other medical things like blood pressure, glucose, looking, doing other routine cancer screenings, depending, if somebody’s male or female, but the screening that’s recommended for that.

Now when we’re thinking about managing this does take an emotional toll because a lot of times, when somebody’s initially diagnosed, if they don’t need treatment, the question is always like, well, how long am I, is it going to be before I’m going to need treatment? How am I going to tolerate that treatment? How long is that treatment going to last? And then that resets once a patient’s had treatment. Well, how long will I stay in remission for this treatment? What’s going to be next?

I think things that can help with that are, sometimes I think involving like psychosocial oncology, I think support groups, I think that it’s very beneficial for many patients to talk to people, whether it be through a u look at the median age at diagnosis is in the 60s, and median overall survival is greater than 20 years. So many patients are going to live with this more like a chronic disease. And so learning to kind of knowing basic facts on what it is, what are the treatments that are available, what do those treatments look like, what are the reasons that you need those treatments? And that you are able many times in those periods of not needing treatment to live a very normal lifestyle and do things. I think making sure that, I think it’s important.

One thing that I think can be helpful is you’ll continuously follow up with your physician. So thinking about questions and concerns that you have throughout the period of time, writing them down that gets them out of your mind on paper. And then when you go to see your doctor next, you have that list of questions. Because I think, sometimes we think about things, and then we worry, worry, worry. But putting them down on paper or even sending them through like a secure MyChart email message and then talking them out, because a lot of times if you don’t do that, then when you go to see your physician you think, oh, I don’t really have any questions.

And then you leave and you’re like, oh, I should have asked these 10 different things. So again, I think asking for resources. So there are many different patient friendly resources out there. I think reading material that’s been written or vetted by medical professionals as opposed to just any random material can be very helpful for patients. And then again sometimes seeking out kind of peer support.

Lisa Hatfield:

Okay, great, thank you. Sean is saying that he was diagnosed with follicular lymphoma in 2022 and in an active treatment. What advice do you have for someone transitioning from patient to survivor? I am eager and fearful.

Dr. Kami Maddocks:

Awww. Well, another good question. And I think one thing I want to recognize is that somebody with cancer is defined as a survivor from the time they’re diagnosed moving forward. So you’re already a survivor. But when you, I do think, and I tell patients this, even when we’re talking about starting treatment, I do think that being aware of kind of where patients are at mentally is important.

Because when you go through, when a patient goes through treatment, they’re very focused on next steps and next steps when you’re going through treatment are, when’s my next treatment going to happen? When’s my next scan going to happen? When you get to that point, when you’re done with treatment, you no longer have those small milestones that you’re reaching the next treatment, the next scan. You now are like, oh my gosh, I had this treatment and now, how long is it going to last?

What’s going to happen to me? What else can happen to me? And there can be a lot of fear and anxiety. I would first tell you that’s totally normal. That is a normal feeling to have at this point. So I think one, recognizing that you have them is important. I think considering things like we’ve talked about, is there a survivorship clinic, is there psychosocial oncology? Is there something that might help in talking those things out? I think setting up milestones, what is the next thing? I’m going to have a three-month appointment, I’m going to have labs.

These are the things I need to be thinking about, but if I’m not noticing these also, what things can I do to return to the things I like to do. I think also I would go back to saying, I think this is where just thinking about getting good sleep, getting exercise, eating a healthy, balanced diet, and then socializing and making sure that you’re involving friends and family.

Lisa Hatfield:

Okay. Thank you. And, Sean, you’re already a survivor, Dr. Maddocks said so. So good luck, Sean. All right, Dr. Maddocks, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. On behalf of patients like myself and those watching, thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Well, Lisa, thank you so much for having me. It’s been a real pleasure, and I hope everybody has a great day.

Lisa Hatfield:  

Thank you. I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.

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

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How can you best prepare to undergo CAR T-cell therapy to aid in optimal recovery? This animated explainer video provides key advice for learning about CAR T-cell therapy, consulting with your care team members, and tips for recuperating after the process. 

See More From Thrive CAR T-Cell Therapy

Related Resources:

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

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

 Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

 CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

CAR T-cell therapy offers a groundbreaking approach for people living with myeloma, and taking steps to optimize your health can play a crucial role in your treatment journey. From preparing your body and mind before therapy to focusing on recovery afterward, there are actionable ways to support your overall well-being and, potentially, enhance outcomes. 

Here are some key steps to boosting your overall health when preparing to undergo CAR T-cell therapy: 

Start by learning about CAR T-cell therapy.

Take the time to understand how the treatment works and what to expect. Your care team can guide you through the process, from the collection of T cells to potential side effects and what to expect following therapy. Educational resources like those found on the Patient Empowerment Network website can also empower you with knowledge and confidence.  

Next, consider cost.

Confirm insurance coverage and make sure you understand the financial impact of CAR T-cell therapy. You can also meet with a financial counselor or a navigator at your medical center to see if there are any resources to assist with paying for therapy. 

Then, consult with your CAR T-cell therapy team.

When undergoing pre-treatment evaluation, be sure to get all of your questions answered and to understand what support will be available to you during the CAR T-cell therapy process.  

You should also build a support system.

Having a family member or friend who can accompany you to appointments and assist with your recovery is vital, and often required by the CAR T-cell therapy center. A care partner can be an advocate for you and help to ensure you feel supported throughout the process. 

It’s also important to plan ahead.

Coordinate with your employer for the time you’ll need to take off from work. And, if necessary, arrange for child or pet care so that you won’t have to worry about these logistics following treatment.  

And, last but not least, meet with other care team members:  

Consider a consultation with a nutritionist for advice on a diet that supports your body through the CAR T process, as well as safe handling tips for meals following treatment.  

A social worker can help you manage the emotional, logistical, and financial aspects of CAR T-cell therapy.   

And, meeting with a pharmacist may also be useful, as they can provide specific information about medications you will take before, during, and after treatment.  

After CAR T-cell therapy, maintaining your health is essential to boost recovery and to reduce potential side effects or complications. Here are some useful tips to aid in recovery: 

Focus on Nutrition.

Your body will need extra support as it heals. A balanced diet rich in vitamins and minerals can help boost your immune system.  

Stay Active.

Light exercise, such as walking or yoga, can help improve your strength and mental well-being. Consult with your doctor before starting any exercise routine.  

Monitor Your Mental Health.

Emotional health is just as important as physical health during recovery. Reach out for support if you’re feeling overwhelmed or anxious.  

Stay on Top of Follow-Up Appointments.

After therapy, your healthcare team will monitor your progress. Attend all follow-up appointments and keep track of your symptoms. If you notice anything unusual, contact your doctor immediately.  

CAR T-cell therapy is a powerful treatment and taking steps to prepare and care for yourself can make a significant difference in your recovery.

For more information and additional resources, visit powerfulpatients.org.

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. 

What Are Predictors of Follicular Lymphoma Relapse or Transformation?

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What Are Predictors of Follicular Lymphoma Relapse or Transformation? from Patient Empowerment Network on Vimeo.

Does follicular lymphoma relapse or transformation have notable predictors? Expert Dr. Kami Maddocks from The Ohio State University shares common symptoms that may signal relapse or transformation and shares her perspective when consulting a follicular lymphoma specialist can be especially helpful. 

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

…for follicular lymphoma, what are the predictors of transformation and relapse, and what symptoms should patients be looking out for and tell their doctor about?

Dr. Kami Maddocks:

Yeah, so I think this is a great question. As far as just in everybody predicting when they’re going to progress, when they’re going to relapse, we don’t actually have great ways to do that right now. One of the things that has been shown to potentially predict things is for patients who do receive treatment if they have an early relapse, that suggests that their disease is going to behave more aggressively. As far as looking for relapse, things that people want to look for, not all patients will have symptoms but certainly if patients feel any lumps or bumps if they start…I like to tell my patients if you…patients usually know if something’s wrong.

So everybody’s going to have aches and pains, everybody’s going to have the normal infections, but if you’re not feeling well, significant fatigue, night sweats, fevers are always something that we look for but that’s not something that everybody has. New pains, not feeling well, just kind of the inability to feel like you can keep up with what you’re doing daily, those are always things that you should at least call in to see if you should be evaluated. It’s important to know that follicular lymphoma patients are followed. As I said, you are followed forever. We do also watch your blood counts to make sure that we’re not seeing changes in blood counts, changes in lactate dehydrogenase which is a non-specific marker but something that we follow in lymphoma.

Lisa Hatfield:

And one follow-up to that question also. So are there follicular lymphoma specialists? If a patient is maybe in an area that doesn’t have a large academic center or a large cancer institution, do you recommend they see somebody who specializes in follicular lymphoma or can they see even for a consult or do you think that their local hematologist oncologist is very familiar with that themselves? Do you have recommendations?

Dr. Kami Maddocks:

Yeah, so that’s a great question. Local, I think follicular lymphoma is common enough that a lot of our general oncologists who see everything see follicular lymphoma. I think it never hurts, of course, to ask about clinical trials. So if that’s something that might be available. If it’s available, it might be worth going to a specialist for.

If there’s concerns, I think it’s always a good idea to get a second opinion to make sure that a patient is comfortable. I think if a patient seems to have a more aggressive behaving follicular or if they’ve had a lot of different treatments, that’s also if you’re seeing a general oncologist at a time, that it’s good to see if there are clinical trials or if a specialist has anything new or different.

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What Do You Need to Know When Considering CAR T-Cell Therapy?

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What Do You Need to Know When Considering CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How does one access myeloma CAR T-cell therapy? This animated explainer video provides an overview of the steps involved in determining whether a patient qualifies to receive CAR T-cell therapy, what the process entails, common side effects, and why having a care partner is essential.

See More From Thrive CAR T-Cell Therapy

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Understanding CAR T-Cell Therapy | How It Works and Who It’s Right For 

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Understanding Possible Side Effects of CAR T-Cell Therapy 

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What You Need to Know About Accessing CAR T-Cell Therapy 

Transcript:

The emergence of CAR T-cell therapy is revolutionizing treatment for some people with myeloma. But, who is it right for, and what is the process for people that qualify?  

  • The first step in accessing this treatment is to be referred by your physician to a center that specializes in CAR T-cell therapy. 
  • Then, a consultation will take place with the transplant team, and a health assessment is administered to ensure patients are healthy enough for CAR T-cell therapy. This includes testing to review the current status of your cancer and testing of your body’s major organ systems.
  • Next, the specialty center will evaluate the best type of CAR T-cell therapy for the patient, including clinical trial options.
  • After approval, financial coordinators will discuss insurance and therapy costs with the potential recipient. Logistics are also arranged at this time, which may include help with transportation and housing, if necessary.
  • Medical centers also require that patients have a care partner, such as a family member or friend, who can be with them at all times, particularly after leaving the hospital. 

So, what is the process once a patient is approved for CAR T-cell therapy? Once a patient is approved to move forward with the procedure, a date is set for collection of the patient’s T cells. T-cells are collected during a process called apheresis. During apheresis a specialized machine filters the patient’s blood to remove the T-cells for collection and the rest of the blood is returned to the patient.  

 After collection, the T cells are sent for manufacturing. During that time, the patient is given a “bridging therapy” to maintain the myeloma until the CAR T cells are infused.  

Once the CAR T cells are infused, the patient will be closely monitored by the CAR T center. This may or may not include hospitalization depending on the policies of the treatment center. Patients and their care partner should plan to stay close by the center for up to 30 days after the infusion.  

During this time, the patient is evaluated for their response to treatment and monitored for possible side effects so that they can be managed in a timely manner.  

The potential side effects of CAR T-cell therapy may include: 

  • Cytokine release syndrome, or CRS, which is an aggressive response to treatment by the immune system and may cause symptoms such as low blood pressure, high heart rate decreased oxygen saturation, fever, nausea, and body aches. 
  • Another possible side effect is neurotoxicity, which is an adverse event that may cause issues such as confusion, difficulty with communication, seizure, or tremors. 
  • And, another side effect may be low blood counts, which could impact the immune system and increase risk for infection. 

Every patient is different, so close monitoring is essential.  

So now that you know more about CAR T-cell therapy, you can work with your healthcare team to decide if this treatment option may be right for you. Be sure to speak up and ask questions. Remember, you have a voice in YOUR myeloma care. 

To learn more about myeloma and to access tools for self-advocacy, visit powerfulpatients.org/myeloma.  

Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects

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Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects from Patient Empowerment Network on Vimeo.

How are MPN symptoms and treatment side effect managed? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss the importance of clear communication with your healthcare team, the process for assessing common issues, and advice for advocating for yourself.

 

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Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! I’ve been living with a condition called myelofibrosis for many years. While there have certainly been ups and downs, I’ve been able to navigate care for my condition and to live a full life.  

So how have I been able to do that? First and foremost, I have a great relationship with my care team, whom I communicate with regularly. Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist and a specialist in myeloproliferative neoplasms or MPNs. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF.  This group of blood cancers is characterized by the bone marrow overproducing a certain type of cell.  

Maintaining a good relationship with your healthcare team, coupled with finding a treatment approach that works for you, can help you live a full life and to thrive with an MPN. 

Brian: 

Exactly, Dr. Liu. Over the years, I’ve experienced periodic issues with my condition. I’ve had symptoms and treatment side effects that have been bothersome and interfered with my life. But, communication with my team has been essential to feeling well.  

Dr. Liu: 

That’s right, Brian. When symptoms or treatment side effects are bothering you, it’s important to let your healthcare provide know how you are feeling. 

Brian: 

For example, recently I felt tired beyond general sleepiness. And when I shared this with Dr. Liu, we discussed potential causes of the fatigue, and we talked in-depth about my options to manage it, including changing therapy and some simple changes to my diet and lifestyle.1 Over time, my energy levels improved, but having the open dialogue with Dr. Liu was essential to tackling this symptom head-on. 

Dr. Liu: 

That’s a great example. When I first hear from a patient that they are having an issue, we go through several steps to find a solution.2  

We start by ensuring that the disease is well-controlled, so we check blood counts. Next, we try to determine if it is a symptom of the MPN or a side effect of the treatment. Once we’ve done those steps, we come up with potential solutions which may include, but are not limited to: 

  • A dose reduction or a treatment holiday. 
  • Changing therapy to find something that is more well-tolerated. 

Other considerations are dependent upon the specific symptoms and side effects but may include: 

  • Supportive care options, including diet and exercise. 
  • A visit to your primary care doctor to see if there is something else going on physically. 

Brian: 

That’s good to know, Dr. Liu. Something you brought up with me, which I feel is important to mention, is mental health. Often, emotional symptoms can take a toll on the body, causing fatigue or other issues. 

Dr. Liu: 

Great point, Brian. Seeking care for your mental health is crucial, particularly if you are in active treatment. 

Brian: 

Of course, we know that the symptoms and treatment side effects for MPNs can vary widely, so what advice do you have for patients who may be afraid to speak up? 

Dr. Liu: 

The most important thing to remember is that we have options to help you, no matter what you are going through. It’s your body and if you don’t let your provider know what you’re going through, they can’t help you. 

Brian: 

So true. It’s also a good idea to bring a care partner along to appointments, sometimes a spouse or friend can you help you communicate what’s going on. 

Dr. Liu: 

That’s great advice, Brian. Bringing someone along to take notes is a great idea. Also, be sure to write down any questions or concerns you have in advance to make the most of your appointment. 

Brian: 

OK, Dr. Liu, let’s recap your advice for MPN symptom management: 

Dr. Liu: 

Good idea! First, remember that everyone’s MPN is different, so managing symptoms and side effects can be tricky. Communicating with your healthcare team is critical to your overall care – report any and all concerns to your team immediately. 

And, do your part. Make sure you see your primary care physician regularly and do your best to maintain a healthy lifestyle. 

Brian 

And, most importantly, remember you are at the center of your care. Never hesitate to share your opinion and to advocate for yourself. 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

Questions to Ask Your Doctor About CAR T-Cell Therapy

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Questions to Ask Your Doctor About CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

What should you know when considering CAR T-cell therapy for myeloma? This animated explainer video provides an overview of key questions to ask your healthcare team and advice for patients and care partners when considering CAR T-cell therapy.

See More from Evolve Myeloma

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Accessing Myeloma CAR T-Cell Therapy Clinical Trials

Transcript:

While receiving a myeloma diagnosis and choosing a therapy can be overwhelming, advancements in research are providing more options and more hope for patients than ever.  

And these advancements include CAR T-cell therapy – a treatment in which a patient’s T cells, a type of immune system cell, are laboratory-altered to attack cancer cells in the body.  

If you are curious about this option, consider asking your healthcare team these key questions: 

  • Am I a candidate? 

CAR T-cell therapy patients must meet specific criteria. 

  • What are the risks? Common side effects of this type of therapy are cytokine release syndrome (CRS), neurotoxicity, suppressed immune system, and low blood counts. 
  • Is the timing right for me? The current approval is for patients who are later in their myeloma journey. 
  • Are there alternatives? Ask about other treatment options that may be appropriate for your myeloma. 
  • Is there a clinical trial that may be right for me? There are many myeloma treatments available in clinical trials, there may even be CAR T-cell therapy options. 
  • What is the cost? Every person’s insurance situation is different so it’s important to understand what the financial impact will be. 
  • What is the center’s experience with CAR T-cell therapy? Your healthcare team should be well-versed in this type of treatment. 

Beyond asking these questions, it’s also critical to research the therapy on your own –– ask your doctor where to find reliable information about the options you are considering.   

You should also discuss the pros and cons of each treatment option with your healthcare team, inquiring about potential side effects, and understand how the treatment is administered and the frequency of appointments. 

And it’s always a good idea to review your treatment choices with a care partner, such as a friend or loved one – someone you trust. 

Finally, always speak up and ask questions. Remember, you have a voice in YOUR myeloma care. 

To learn more about myeloma and to access tools for self-advocacy, visit powerfulpatients.org/myeloma.  

Why Are CAR T-Cell Therapy Care Partners So Important to a Patient’s Recovery?

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Why Are CAR T-Cell Therapy Care Partners So Critical for a Patient’s Recovery? from Patient Empowerment Network on Vimeo.

What role do CAR T-cell therapy care partners play in patient recovery? Expert Sarah Meissner shares her perspective on the role of a care and discusses potential side effects to look out for after the therapy. Care partner Adrienne talks about the side effects her husband experienced, and how they were managed.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

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

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Transcript:

Katherine:

What is the care partner’s role in helping the patient through this process? And why are care partners so critical for a patient’s recovery?  

Sarah Meissner:

So, the care partner is a huge part of this process. After the cells are infused, there is a 30-day close monitoring period. And it’s a requirement for our center that the patient have a 24/7 caregiver during that time. There are a lot of side effects that can happen, and the patient is not going to be able to drive for two months. 

So, they need somebody with them at all times to be monitoring for these symptoms as well as bringing them to their appointments, helping them with their medications, day-to-day stuff at home as well. 

Katherine:

Adrienne, if you don’t mind, what sort of side effects did your husband have? 

Adrienne:

No, I don’t mind. He had from the immunosuppressing chemotherapy, he had really low numbers for a while and that just made him feel pretty bad. And he didn’t have any really bad side effects where we had to go to the hospital. Well, I guess we did a few times. He had just a little bit of fever, which you have to report and make sure that it’s okay.  

So, we did have to go twice. But it really didn’t end up being anything too bad. He did have a fall down the stairs at our house. So, if we did it different, I think because we had to be there every day for two weeks and the monitoring, I think that we would probably have rented a hotel that didn’t have these stairs just because he’s used to going up and down the stairs, but I don’t know if he just lost his footing. But it was extremely scary with everything else that he was going through. And that might have been part of the cognitive thing. I feel like most of his side effects, actually, started hitting months after the cognitive things. 

But the stress was more on just caring for him and making sure that he was okay and just being ready just in case something happened. 

Katherine:

Yeah. It’s like being on high alert 24/7. 

Adrienne:

Correct.  

Katherine:

Sarah, could you describe some of the common side effects? 

Sarah Meissner:

Yeah. So, there are two main sets of side effects that we’re looking for with CAR T therapy. The first is something called cytokine release syndrome. So, this happens when the CAR T cells latch onto those cancer cells and kill them and stuff gets put out into the patient’s blood stream. That can cause what’s called a cytokine response. And it’s, basically, proteins that cause inflammation. So, common side effects that we see with that are fever, low blood pressure, high heart rate. 

Some people need some oxygen. It looks very similar to what we would see in sepsis or a severe infection. The good news about that is there is a medication that’s very effective in treating cytokine release syndrome. And so, that’s why it’s important for the caregiver to notice these things and bring them into the hospital so they can get that treatment right away. The other set of side effects is something called neurotoxicity. So, if you think of the brain as a group of wires that is sending signals throughout the body, with neurotoxicity, those wires can kind of get jumbled. They’re not necessarily cut. This isn’t an irreversible thing. 

They get jumbled and can kind of mix up those signals. So, we can see patients that are confused. Patients can have seizures. We start everybody on anti-seizure medication as a prevention method. They can get a tremor and we can see changes in their handwriting. 

So, we assess for this twice a day during those first 14 days by asking them a simple set of five questions. To name certain objects, to count back from 100 by 10, ask them what day it is, that kind of stuff and then, to write out a sentence. And we can see subtle changes in that functioning in the handwriting. So, this like the cytokine release syndrome, if we start to see it, there are medications that we can use to treat it. We usually put people in the hospital for a little closer monitoring. But these are things that the caregiver usually will catch onto before the care team because they know them best.  

And they can catch onto those subtle changes maybe in their personality or little confusion or stuff like that.  

Katherine:

Well, that leads me to the next question, which is what sorts of questions should care partners be asking their team?  

Sarah Meissner:

Yeah, definitely.  

So, they should be asking what they should be looking for, what side effects would constitute something that they need to report. They should be asking, “Who are we reporting to, what phone number or who are we reporting these things to?” Those are the main things to be looking for. We use a home monitoring system at our center. So, maybe some specific questions about monitoring dependent on your center and how they’re having the caregiver look for these side effects.  

Adrienne:

But back to the cytokine syndrome, my husband did have this effect where he had the high fever, and that’s why we went in. And we did get the Toci dose [tocilizumab], which is a special medicine that kind of calms the inflammation down. So, I think that some of the questions that I would have pretty much are what to expect but I was given that. And I think maybe it would be good to meet other people that had gone through this before you’re actually going through it.  

I didn’t have that luxury, because my husband was only the second person in our hospital to do it. But to know what’s going on from another caregiver’s perspective would be nice.