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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

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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. 

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.  

What Are the Symptoms of Ovarian Cancer?

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What should women know about ovarian cancer symptoms? Gynecological cancer expert Dr. Nita Karnik Lee reviews potential symptoms of ovarian cancer and emphasizes the importance of regular communication with the healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

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How Is Ovarian Cancer Detected?

How Is Ovarian Cancer Detected?

 How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

 Patient Empowerment | Advice From an Ovarian Cancer Expert

Patient Empowerment | Advice From an Ovarian Cancer Expert

Transcript:

Katherine Banwell: 

What symptoms should people look for? 

Dr. Nita Karnik Lee:  

So, this is a very important point. I think the symptoms that people should look for are symptoms that are in the bowel and bladder function area that are different or new to them. This can be changes in urinary frequency, or urgency, or sense of pressure, or not having as much bladder capacity, like having to run to the bathroom more frequently.   

Sometimes it can be changes in bowel movements, such as constipation, or not feeling like they’re emptying, or it can be changes in appetite, where people feel full really quickly, where they eat a small amount, and all of the sudden, they just feel like they can’t eat anymore. Obviously, worsening symptoms such as nausea or even throwing up, that’s a little more extreme, but that can happen.  

Again, if you’ve had these symptoms for years every time you eat a certain food or something like that, those are probably not new, and that probably is not going to be something cancerous. But if there’s something that’s new or different, the symptom seems to stick out to you that this isn’t your usual routine, and it seems persistent over two or three weeks, and it’s happening almost daily, or at least more frequently than you would expect, then I think that warrants telling your doctor about it, and really advocating, and knowing that not everyone is going to have ovarian cancer, which is good, but knowing that they should do the workup for this just to rule it out.  

Katherine Banwell:  

How reliable are PAP smears in detecting ovarian cancer? 

Dr. Nita Karnik Lee:  

PAP smears do not detect ovarian cancer at all. So, people with ovarian cancer have normal PAP smears. It would be very unusual to have an abnormal PAP smear due to ovarian cancer. A lot of the misconception is that patients have said, “Well, I had my annual exam last year. I got my PAP smear every three to five years. That seems negative. So, why did I get this cancer?” But the two are completely unrelated. 

What Supportive Care Treatments Are Available to Patients?

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What options do cancer patients have for supportive care treatments? Expert Dr. Jennifer Ligibel from Harvard Medical School discusses side effect management, exercise, nutrition, and integrative therapy for patient care. 

Download Resource Guide

See More from RESTORE

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Lifestyle Interventions and Cancer Care Outcomes Research

Lifestyle Interventions and Cancer Care Outcomes Research

 How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

 What Is Supportive Care Therapy in Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

Transcript:

Lisa Hatfield:

Managing the side effects of cancer treatment can be just as crucial as the treatment itself. But how does supportive care fit into the equation? I’m getting some clear answers from a respected expert in this Patient Empowerment Network RESTORE program. 

Dr. Ligibel, could you speak to some available supportive care options, and how can patients work with their healthcare team to effectively incorporate supportive care into their treatment plans to manage side effects?

Dr. Jennifer Ligibel:

Absolutely. And this is such an important topic. I think sometimes people want to downplay the symptoms that they’re experiencing. And so, they don’t tell their healthcare team when they’re experiencing nausea or fatigue, or they’re just feeling really down because of the effects of their cancer treatment. And these are all areas that supportive care treatment modalities can really help people feel better during their cancer treatment if they talk to their oncology teams about the symptoms they’re experiencing, because there are so many supportive care options that are available now.

These options really run the gamut. So there are supportive care medications. We know that there are really effective medicines for nausea, for example, and sometimes people need different nausea medicines than what was initially prescribed. So really important if you’re experiencing nausea despite the medicines that you’re taking to talk to your care team about that.

here are medications additionally for pain when people develop nerve damage from treatment. Those are other things that there are supportive care medicines that can be really important and really help people feel better. Then there are other types of modalities that people may seek out themselves, things like exercise or changes in nutrition. I always recommend that people talk to their healthcare teams before incorporating any kind of supportive care into their treatment protocol, especially if they’re currently receiving treatment for cancer.

But there are many different ways that people can help themselves feel better by being more active and by making sure that they’re consuming enough calories, making sure that they have enough protein in their diets to really support themselves through treatment. Then there are supportive care modalities that are directed toward particular symptoms. And there are what are often called integrative therapies.

And integrative therapy is a type of treatment modality that really takes the best of both Western medicine and Eastern medicine to try to help support people during their cancer treatment. Integrative modalities often include things like yoga and acupuncture and massage, and there’s a growing literature showing that these types of interventions can also really help support patients during cancer treatment.

There’s also meditation and mindfulness, because we know that cancer and cancer treatment has such an effect, not just physically on people, but also emotionally, and really managing the emotional effects of cancer treatment is incredibly important to feeling better. And so, this is an area where there’s a lot of active research, so many more ways that we know now can help people feel better during treatment than even five years ago. And so, it’s important to talk to your care team about the side effects that you’re experiencing and really to be open to different types of supportive care options to help you feel better.

Lisa Hatfield:

Okay. Thank you. Dr. Ligibel, what factors should patients consider when discussing supportive care options with their providers? And how can these therapies help enhance their overall treatment experience?

Dr. Jennifer Ligibel: 

Absolutely. And I think one of the things that we’ve come to recognize is that it’s often easier to prevent side effects than it is to treat them once they’ve already occurred. And so, I think it’s really important for people to be proactive and talk to their oncology care providers from the very beginning about what kinds of side effects they may experience as a result of treatment. And thinking about preventative strategies as early as possible.

We were reviewing all of the evidence, looking at exercise, nutrition, and weight management programs for people currently receiving chemotherapy as part of a project through the American Society of Clinical Oncology and saw really consistent evidence that for people who started exercising even before their cancer treatment started, they were much less likely to experience things like fatigue. They were much less likely to lose strength or mobility. They were less likely to suffer from anxiety or depression, and they had a better quality of life.

So really starting that type of program as early as possible is definitely something that we recommend, but it doesn’t mean that those types of changes couldn’t have value no matter where you are in your cancer trajectory. And there have also been studies that have shown that exercise can help treat fatigue once it’s developed, can help people regain strength. So it’s never too late. But I think that for many supportive care options, the earlier that you start them, the more benefit you may derive.

Lisa Hatfield:

Okay. Thank you. You heard it here directly from Dr. Jennifer Ligibel. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

What Is Supportive Care Therapy in Cancer Care?

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In cancer care, what is supportive care therapy exactly? Expert Dr. Jennifer Ligibel from Harvard Medical School discusses the concept of supportive care and a variety of supportive care methods of nutrition, exercise, behavioral therapy, and side effect management.

Download Resource Guide

See More from RESTORE

Related Resources:

Lifestyle Interventions and Cancer Care Outcomes Research

Lifestyle Interventions and Cancer Care Outcomes Research

 How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

 What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

Transcript:

Lisa Hatfield:

The term supportive care may be an unfamiliar term to many patients. So what is it and what are the key components of supportive care? I’m diving deep into this topic, with the Harvard expert on this Patient Empowerment Network RESTORE program. 

Dr. Ligibel, there are so many variations of this term, and it may mean different things for different patients. Can you give us a baseline by explaining what supportive care in today’s cancer care landscape is?

Dr. Jennifer Ligibel:

Absolutely. So when we think about supportive care, we think about all of the things that we do to help our patients feel better after a cancer diagnosis through their cancer treatment, and beyond that can be things that help support people’s quality of life, decrease their side effects, support their mood. There are many, many different aspects of supportive care, but it’s all about trying to help people feel as good as they can throughout the cancer journey.

Lisa Hatfield:

Okay, thank you. Dr. Ligibel, how can patients maximize the benefits of supportive care, such as nutritional counseling and psycho-oncology to manage side effects and maintain their overall well-being during treatment?

Dr. Jennifer Ligibel:

This is a great question and this really does vary by the patient, by the stage of their disease, by the type of treatment that they’re getting. So there are a lot of different elements of supportive care, and some of them may be more useful at some points during the cancer trajectory than others. I think that speaking with their oncology team is a good first step, really being clear about the side effects they’re experiencing as a result of their treatment or after their treatment has been completed. Because there’s a lot of research that’s going on now, trying to figure out what type of supportive care can be the most beneficial for a particular side effect.

For example, there are studies that have gone on looking at treatment of things like nausea, and we know that there are a lot of anti-nausea medications that are in a really important part of the supportive care for patients receiving therapy that help mitigate nausea. But there are other strategies that may also be beneficial, things like acupuncture or altering diet. And so, I think the first step really is talking to the oncology care team about the side effects that are present to start thinking about what types of supportive care modalities can be most beneficial.

Lisa Hatfield:

Okay, thank you. And two of the things that seem to come up a lot with cancer patients, myself included, during treatment and ongoing treatment, are fatigue and then just the mental gymnastics of dealing with cancer. Do you have any suggestions on types of supportive care for those two symptoms or side effects in particular?

Dr. Jennifer Ligibel:

Absolutely. And honestly, we could talk for hours about the best ways of managing those types of issues, because they’re so common for people, and the causes of fatigue in particular can really be multifactorial. Some patients may have a low red blood cell count or be anemic. Other patients, it may be a direct effect of the treatment itself, or the treatment may be causing them to not have an appetite, and so their nutrition is not sufficient during treatment.

So I think the first step in really helping to minimize a side effect like fatigue is trying to look at, well, what are the causes? Is there something else going on that may be contributing to fatigue? Most of the time, honestly, it’s the effect of the cancer or the cancer treatment itself. And in that case, there’s been a lot of work that’s been done to look at, well, what types of supportive care modalities are beneficial, actually, and this often is counterintuitive to many people, the best medicine for fatigue is exercise.

I know it seems crazy in some ways that when you’re already feeling tired, the thought of getting out there and exercising may seem insurmountable. But there have been hundreds of studies that have looked at exercise programs as a way of mitigating fatigue. Most of the time, these programs start really slowly. They involve things like walking, doing kind of low intensity strength training, but the evidence is really consistent that exercise is incredibly beneficial to both prevent fatigue and to treat it once it develops. Another really effective strategy for both preventing and treating fatigue is cognitive behavioral therapy.

And so, this involves really thinking about your energy levels and when your energy levels are higher and matching your activity to the times of day when you have the most energy. There are many other strategies for fatigue that have been explored. Things like mindfulness and meditation. The thing that hasn’t been shown to be that beneficial in most settings for fatigue is medications, unfortunately. And I think that’s something that many of us reach when we’re experiencing any kind of a side effect is for a medication, and in this time period, unfortunately, medications haven’t been shown to be as effective.

Lisa Hatfield:

You heard it here directly from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

How Is Hydration Managed During Cancer Treatment?

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Registered dietitian and oncology nutritionist Julie Lanford discusses general hydration needs, how needs may vary during cancer treatment, and tips for maintaining hydration levels. 

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Transcript:

Lisa Hatfield:

Hydration is a crucial aspect of supporting your body during cancer treatment. But what should patients know? Can side effects like vomiting and diarrhea make you lose too much fluid? I’ve connected with a leading voice on this topic, and we will get some answers right now on this Patient Empowerment Network RESTORE program.

Julie, it may seem like a silly question, but how much water should patients be drinking each day while undergoing cancer treatment? And can too much or too little trigger side effects? 

Julie Lanford:

Yeah, so we talk in general about water intake. And we often, the guideline is eight to 10 cups per day, which is somewhere between 64 and 80 ounces, if you do your math. And that’s the general good guide.

Now, if you have a treatment regimen, where the doctors are like, Make sure you hydrate really well for the next two days, somesome chemos are pretty toxic to the kidneys. And so they want you to take in lots and lots of extra water to kind of flush that out, then you would want to be doing 10 cups and maybe a little bit more. You know, technically people can consume too much water, it would take a lot, and it would take you consuming a lot at one time in order for you to cause a lot of problems.

The other sort of risk in terms of taking in too much water is if you’re not eating very well, and you’re not getting your electrolytes, and you’re just drinking plain water, sometimes that can cause a balance issue with the electrolytes in your blood. So if you are somebody who’s nauseated, having lots of diarrhea, and you’re just drinking water, I would suggest you have some type of oral rehydration beverage, you can make some yourself. But the easiest thing is something like Gatorade or Pedialyte, or even just diluting juice and adding a little bit of salt to it, something that helps get your body those electrolytes in addition to the water, because that’ll just help everything function better.

But let’s assume that you can eat okay, then generally eight to 10 cups of a beverage a day should meet your needs. You definitely can get too little water, that is always a challenge. And usually a sign of not enough water is when you get lightheaded standing up, or you have lost weight really quick, like, I don’t know, two pounds over a day, or five pounds over a day. That to me is a sign of fluid loss without being replaced, which can happen if you are having a lot of vomiting and diarrhea, which just pulls a lot of water out of your body.

And so those oral rehydration solutions, which have the electrolytes mixed in with the water really can help you from sort of getting overly dehydrated, because the last thing you want to have to do is go over to that hospital. But if you have lost fluids really, really fast, and you are nauseated, you can’t keep anything down, or you cannot stop the diarrhea, you will feel better if you go over there and get hydrated.

That’s what I always tell people, especially if it’s a Friday. Nobody wants to have to deal with the hospital, but you can feel pretty awful if you’re dehydrated, it’s very risky. So it can be challenging. But unlikely to get overhydrated, probably more likely to get dehydrated.

Lisa Hatfield:

Okay, thank you. Julie, are there specific hydration strategies or recommendations to follow? And how can patients address common hydration challenges and ensure they’re meeting their fluid needs effectively? 

Julie Lanford:

Yeah, so I think the challenge often is that you don’t realize how much time has gone by since you’ve had something to drink. So a couple things, monitoring your weight, if this is a significant risk for you, you want to pay attention to if your weight is staying stable. And then the other thing is to go ahead and fill up a big jug.

 So if it’s 64 ounces, or you want to do two jugs a day, and drinking from that, so you know how much you’re having, it is also perfectly fine to get your water from juice, from different beverages, even coffee and tea. I know some people like to say, well, if it has caffeine, it’s dehydrating you. It’s not really that much anyway.

And if that’s all that tastes good to you, it’s better off to get that. So I think spreading your beverages throughout the day. So setting a timer, have four ounces or eight ounces every hour or two, and allow yourself the freedom to choose whatever beverage you think will taste good to you.

If you’re tired of the sweet stuff, let’s say you’ve kind of existed on like Ensure and Gatorade for days, and you’re so sick of the sweet taste. Broths are something that can help hydrate you. Milk is a great option to give you nutrition and hydration. You can get lactose-free if you don’t tolerate lactose, but those also give you  that water along with the nutrition. So those are kind of my basic guidelines for doing that. And then just making sure that you’re letting yourself have things that taste good to you so that you’re more motivated to get it down.

Lisa Hatfield:

Okay, thank you. You heard it here directly from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

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. 

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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 I Maintain a Healthy Diet During Ongoing Cancer Treatment?

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How can cancer patients maintain a healthy diet during and after cancer treatment? Expert Dr. Amy Comander from Massachusetts General Hospital discusses common side effects of cancer treatment and advice for boosting nutrition during and after cancer treatment.

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Transcript:

Lisa Hatfield:

As a patient living with cancer where there’s no cure and treatment is ongoing, I’m constantly navigating the challenges of maintaining my health during treatment and avoiding unwanted side effects. Nutrition is a big part of that, but it’s not the whole picture. I’m getting to the bottom of it with a respected oncologist in this Patient Empowerment Network RESTORE program.

Dr. Comander, how can patients manage treatment side effects that affect their appetite or ability to eat? And what role does hydration play in supporting cancer treatment and recovery?

Dr. Amy Comander:

We know that many individuals going through cancer treatment really have a poor appetite, often don’t feel like eating, and this can be due to a multitude of factors. Maybe it’s due to nausea from the medication, or other side effects from the chemotherapy agents or other medications that a patient’s taking. So this can really be a challenge. And I encourage a patient to really talk to his or her doctor about these concerns if really poor appetite is a major problem because, yeah, actually sometimes there’s strategies we can think about, sometimes there’s medications that can be helpful to boost the appetite, or sometimes it’s really thinking about introducing certain foods that may perhaps be appealing, such as making a smoothie.

Sometimes maybe you weren’t a smoothie person before going through cancer treatment, but now that might be a great way to get in some calories. Obviously you can put a lot of healthy things into a smoothie. So this is one strategy that some of my patients employ. But I certainly encourage someone listening to this to kind of talk to their doctor about this, if it’s a real problem like not being able to eat.

In terms of hydration, we know that is so important. Many of our treatments get metabolized by the liver or cleared by the kidneys. So it’s really important to stay well hydrated, especially in the summer months, if it’s really hot outside. So I always encourage my patients to have a trusty water bottle by their side at all times.

There’s so many fun water bottles out there, so I’m like, “Get one that you like. If it has to be pink, that’s great, whatever it is,” but have a water bottle with you at all times. Certainly think about water, other drinks with electrolytes, some people like Gatorade, whatever that might be, but it’s really important to be drinking throughout the day to stay hydrated, to keep yourself healthy as you’re going through cancer treatment.

Lisa Hatfield:

Okay, thank you. Dr. Comander, what strategies do you recommend for cancer patients to maintain adequate nutrition when experiencing treatment side effects such as nausea or taste changes? And additionally, are there specific foods or supplements that can help alleviate these side effects?

Dr. Amy Comander:

Right, so many patients when they’re going through chemotherapy, or receiving other treatments for their cancer, really note nausea, changes in taste, and have a really tough time finding what they want to eat during this time. And I will say, obviously, sometimes it’s playing around with the diet to find what things work and what things don’t work. And often that’s the first thing we might try. But if nausea is the primary issue, I will say we now have such an amazing array of anti-nausea medications that we can use for our patients going through chemotherapy.

And these are really game changers in the field of oncology. I can just see it even over my career how some of the newer medications we have, such as olanzapine(Zyprexa), to use for nausea, are really beneficial. So I think if you’re going through chemo and having a real hard time with nausea and that’s preventing you from eating, talk to your doctor. “What other anti-nausea medication can I consider taking so I can get nutrition into my body?”

Taste changes, it really is something that can evolve often during active chemotherapy treatment. Patients may experience that. It tends to get much better when you’re done with some of these drugs, such as cisplatin, for example, that can cause a lot of changes in taste. So that’s usually something that’s hopefully more of a short-term thing and will get better with time. In terms of specific foods or supplements, I really very much advocate that my patients get nutrition from whole foods with a focus on fruits and vegetables and whole grains. I’m not a big supplement person.

In fact, organizations such as the American Institute of Cancer Research really counsel patients not to focus on supplements as a major way to get nutrition into their body. Of course, there are some instances where supplements are needed. For example, a patient with anemia could have deficiency in iron or vitamin B12. Those are supplements that may be necessary to help boost those red blood cells. Or one of my patients, for example, a diagnosis of breast cancer, an aromatase inhibitor, where she may be experiencing a decline in bone density, she may need a vitamin D supplement because she lives in New England and doesn’t get enough sun exposure, which is how we get vitamin D.

So vitamin D, iron, B12, things like that sometimes are necessary, but there are a lot of supplements out there that people are encouraged to buy and spend a lot of money on, and I really would encourage you to shy away from that. That would be my recommendation.

Lisa Hatfield:

Okay, thank you. And a quick question for those patients who are on the flip side of the decrease in appetite. Sometimes patients going through cancer treatment are on high dose steroids, and they have the increase in appetite and they have certain cravings. Do you have any suggestions or recommendations for those patients?

Dr. Amy Comander:

Yes, we know that we use steroids a lot in oncology to help our patients manage nausea or other side effects related to their treatment. And you’re absolutely right, being on steroids can sometimes really rev up the appetite, make it hard to sleep at night, cause a whole wide array of other side effects. So certainly with my patients who have this problem, sometimes I try to cut down the steroids a little bit, see if we can get away with that to kind of minimize those adverse side effects from the steroids themselves.

But if someone really is having cravings, usually the steroids are used around chemo for just a few days. So I usually encourage them like, again, if you’re craving carbs, try to focus on some healthy carbs, again, focus on whole grains, try to avoid some of the potato chips and other stuff, which we know are not so good for us, but usually it’s a short-term thing, but maybe cutting down the steroids a little bit might be the first step if possible in collaboration with your oncology team.

 

Lisa Hatfield: Okay, thank you. You heard it here from Dr. Amy Comander. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

What Follicular Lymphoma Treatment Side Effects Should Patients Expect?

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What Follicular Lymphoma Treatment Side Effects Should Patients Expect? from Patient Empowerment Network on Vimeo.

Follicular lymphoma patients might experience different side effects, so what should patients expect? Expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center discusses various treatments and common side effects that patients experience.

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Transcript:

Lisa Hatfield:

 So when you do have patients going through therapy, what are the typical side effects? And how do you help them manage those side effects of treatment?

Dr. Kami Maddocks:

Yeah, that’s a great question, and it’s very dependent, because we have so many different treatments now. It’s very dependent on the treatments that the patient’s getting. So things like single-agent antibody therapy with single-agent rituximab (Rituxan), most of the time, the biggest risk of that is the first time a patient can get it, they can have an infusion reaction. That’s managed as it’s happening. And then they tolerate that, in general, fairly well. That does wipe out the lymphocytes, as most of the treatments do, and puts patients at increased risk of infections, particularly viral infections for a period of time.

Chemotherapy, the most common chemo that we give for follicular lymphoma, I would say nausea, fatigue, and an increased risk of infection are kind of the bigger things. Bendamustine (Treanda) is a commonly used chemotherapy for follicular lymphoma, and that’s some of the big side effects from that.

Lenalidomide (Revlimid), the oral pill, so cytopenias infection, GI toxicity and rash are potentially the more common side effects of that. Less common, but we’re always concerned about blood clots, so most patients will take either an aspirin or a blood thinner, depending on their clot history when they’re on lenalidomide. The bispecific antibodies have a particular risk called cytokine release syndrome, so that immune systems activated, but it can almost get overactivated.

The most common symptom of that is fever, and so patients are counseled very closely on that. But activation of the immune system with that fever can also include changes in blood pressure or the need for some oxygen. Some of the CAR T-cell therapy has the same risk of the cytokine release, also has potential neuro side effects. And then longer term is just how long the patients’ immune systems take to recover. There can be risk for infections.

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Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management

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Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management from Patient Empowerment Network on Vimeo.

How can extensive stage small cell lung cancer patients be empowered for symptom management? Expert Beth Sandy from Abramson Cancer Center discusses how she empowers patients and care partners, common treatment side effects, and advice for patients preparing for treatment.

[ACT]IVATION TIP

“…make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions.”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Transcript:

Lisa Hatfield:

Beth, extensive stage small cell lung cancer and its associated treatments often come with challenging symptoms. How do you prioritize the patient education to empower both your patients and their care partners in recognizing and managing these symptoms at home?

Beth Sandy:

Yeah. So the treatments that we have are predominantly chemotherapy. We also can use immunotherapy, and these have a whole host of different side effects. Some patients may be dealing with just symptoms of the disease like shortness of breath or cough, but then when you add in the chemotherapy, it’s going to add a whole host of other side effects. I think there are a few important things to note here. Number one, know the names of the drugs that you’re getting, and at my institution, we will print them out for you with an  education sheet. So we like to give printed materials, because it’s hard to remember everything we say and not everybody’s going to sit there and take notes and write it down, so we give printed materials. I think that’s important. And then understanding the schedule.

So typically the first-line treatment that we use for this is three days in a row. It’s given once every three weeks. So you’re not just coming in one day. You actually have to come in three days in a row, and most cancer centers aren’t open on the weekend, so you would often have to be preparing to start this regimen either on Monday, Tuesday, or Wednesday.

So just think about that. We rarely start these regimens on a Thursday or Friday, because we want that consecutive three days in a row. There are scheduling issues that come into play here. And then the side effects, so we can predict really well what the side effects actually are going to be. I often can’t predict a lot of things with cancer, but side effects of chemotherapy are fairly predictable, and truthfully, most patients are going to lose their hair with this treatment. It grows back. So don’t worry. It grows back, but in the beginning, hair loss is something that may happen, so we need to tell patients that. No one wants to be at home, and all of a sudden all your hair falls out and you didn’t know that.

And then there’s chemotherapy side effects, things like lowering of blood counts, nausea. What I do want to say as I’ve been doing this for 20 years, our supportive care medications for preventing and treating nausea are so much better now. So it’s nothing like it was 20 years ago, and 30 years ago. When I started as a nurse, we didn’t have good medications then. We’ve really good medications now. So nausea tends to not be as big of an issue as what you may have experienced with a family member in the past, so that usually we can prevent pretty well.

But talking about the lowering of blood count is a big issue that it can put you at risk for infection, you may need blood transfusions. These are things that you have to talk about. So just make sure you have a pretty good understanding of that. The other thing we can predict is fatigue. So most patients are going to get fatigue, and usually it will be in the first week of treatment, but it won’t last the entire three weeks between the treatments.

So my activation tip here for this would be to make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions and bringing them in and I like when patients do that because then I can answer them, because otherwise I feel sometimes like did I answer everything? Do I forget anything that’s important to you? What may be important to you may not be as important to another patient? So write down your questions and make sure you have all of them answered before you leave especially when it comes to chemotherapy side effects.

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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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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.  

CAR T-Cell Therapy | What Are Potential Complications?

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CAR T-Cell Therapy | What Are Potential Complications? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy may cause complications and side effects that their care partners should be aware of ahead of time. Expert Dr. Shambavi Richard reviews possible side effects, including cytokine release syndrome, and how patients are monitored during their hospital stay post-procedure.

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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Transcript:

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy? 

Dr. Richard:

So, there are several possible side effects with CAR T therapy.  

It’s a little different from an autologous transplant. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue.

So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.  

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.  

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.  

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy.

Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.   

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.  

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital?  

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.  

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy.

Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.  

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects. 

Expert Advice | Managing AML Symptoms and Treatment Side Effects

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Expert Advice | Managing AML Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

The symptoms of acute myeloid leukemia (AML), or side effects of treatment, can have an impact on daily life. Dr. Alice Mims, an AML specialist, discusses how common issues are treated and talks about why it’s important to share what you’re going through with your healthcare team. 

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims. 

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Transcript:

Katherine Banwell:

When it comes to living and thriving with AML, Dr. Mims, managing disease symptoms and treatment side effects is a big part of that. 

Would you talk about how symptoms and side effects can impact life with AML? 

Dr. Alice Mims:

Sure. So, I think from my perspective, what we are always trying to do when we’re moving forward with a treatment plan is of course, get patients into remission, but the purpose of getting into remission is not just to achieve that, but for patients to have quality of life. And so, there needs to be continued dialogue between the patient and the treatment team about how you’re feeling during treatment. Because they’re definitely based off of therapy, different side effects, things that could be not necessarily due to active leukemia anymore. And so there may need to be dose adjustments and other things that we do to the regimens in order to make you feel as good as possible while continuing on treatment. 

Katherine Banwell:

Why is it so important for patients to speak up about any issues they may be having? 

Dr. Alice Mims:

I think it’s important because you’re your own best advocate. Being the patient, being the person who’s living with having this diagnosis and going through the treatment, myself, or other colleagues as physicians, we can have a sense of what may be going on based off of numbers. But we’re not truly going to know how you’re feeling unless you speak up and let us know. And there may be things we could do with supportive medications, dosing adjustments as mentioned, that could help in making you hopefully feel better and less side effects and toxicities from treatment. 

Katherine Banwell:

What are some common symptoms and side effects that you hear about?  

Dr. Alice Mims:

Okay. Sure. So, different side effects that I would say that people can have, people can feel fatigued just from treatment in general. Some of our therapies can cause neuropathy, skin rashes, nausea, vomiting, diarrhea. And so, all of those are important along as mentioned with symptoms you may have from decreased blood counts that we do have interventions that we could implement to help the – make the therapy more tolerable. 

Katherine Banwell:

So, for the side effects like fatigue, for example, what do you do about that? 

Dr. Alice Mims:

So, I think it depends on the level of fatigue. Of course, we don’t have – I wish we had a pill that could just make fatigue improve. But if it’s really that the treatment is deriving it, and it’s impacting your quality of life, there are dose reductions or things we can do that may help with the level of fatigue you’re experiencing.  

Katherine Banwell:

And what about some of the other side effects. You mentioned diarrhea. 

Dr. Alice Mims:

Sure. 

Katherine Banwell:

How is that handled? 

Dr. Alice Mims:

Yeah. So, for issues from GI complications such as nausea, vomiting, diarrhea, we have really lots of choices for anti-nausea medicines and different combinations we can use or newer antiemetics that can help with that. And from a diarrhea perspective it depends on the treatment. But, of course, we want to make sure first and foremost there’s no infection. And if not, then there are good antidiarrheals we could add on to the regimen to help with that as well.