Tag Archive for: myeloma treatment

CAR T-Cell Therapy Support | Questions to Ask About the Process

What questions should patients ask when considering CAR T-cell therapy? Nurse practitioner Donna Catamero shares key advice for patients and care partners, available resources, and emphasizes the importance of financial and logistical assistance when accessing treatment.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero

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:

Katherine Banwell:

When meeting with someone considering CAR T-cell therapy, what are some questions that they should be asking about the process? 

Donna Catamero:

So, I think first, “Am I a candidate for CAR T?” Certain comorbidities may put patients at higher risk for complications, or they might need to have additional testing – lung and heart functions – but “Am I a good candidate?” 

“Do I have caregiver support?” Again, support network of caregivers for patients, because patients do need to have someone with them during that CAR T process, and “What are the resources available to me receiving CAR T?” Patients live far from CAR T centers. What kind of support that we can provide patients – is it hotel stays, is it transportation – to really get patients to their CAR T therapies? 

Katherine Banwell:

Right. There’s the whole financial aspect of therapy that some – it can be a difficult situation for some patients. 

Donna Catamero:

We’re very fortunate that both products have patient support services that help patients. They will provide hotel, transportation, food. 

So, we are trying to get more patients to the CAR T therapy. So, geographical constraints shouldn’t be a barrier, so we are really helping bridge patients to get to the CAR T centers.   

 So, to access some of these resources, talk to your healthcare team, social work, but also, again, I empower patients. Go directly to the manufacturer – Johnson & Johnson, Bristol Myers Squibb – you can go directly to their websites and find out more information, but your healthcare team can kind of, again, be a bridge to get patients that support.  

Being Empowered | The Importance of Understanding Myeloma

How can patients and care partners feel empowered when facing a myeloma diagnosis? Nurse practitioner Donna Catamero highlights the importance of education, shared decision-making, and a strong emotional support network, along with using trusted sources for reliable information. 

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

As a provider, how do you empower care partners and patients who have been diagnosed with myeloma? 

Donna Catamero:

So, education, education, education. Knowledge is power. Learn everything you can, attend your support groups, attend educational seminars, and be part of your decision making. So, we called that shared decision making. You’re part of the healthcare team. You need to tell your providers what your goals of therapy are, and in order to do that, you really need to educate yourself on what kind of therapies, what are the supportive care options, and be part of that discussion. 

Katherine Banwell:

And how does one educate themselves? Are there websites that you would recommend they go to? 

Donna Catamero:

There are several foundations and organizations that I find very useful for patients. Our instinct is to go to the Google machine and type in our thoughts, but we do have great foundations. The Multiple Myeloma Research Foundation, the International Myeloma Foundation, HealthTree – all great resources for patients. They provide education, educational seminars, support groups, mentors. There are hotlines where patients can call and get the information right at their fingertips, and this is really from reliable sources. 

Katherine Banwell:

How do you counsel patients on coping with the emotional side of myeloma? What advice and resources are available for them there? 

Donna Catamero:

So, it’s important to try to get yourself a good emotional support network, so your family, your friends, your fellow myeloma community can really provide support for patients, and really – when you get – I’m going to repeat that. When you get a devastating diagnosis, patients can tend to withdraw from family and friends, but family and friends – your support network – can really help patients get through very trying times, so, your caregivers, your family, your friends, and like I said, the myeloma community is here to help. 

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Planning to undergo CAR T-cell therapy? Nurse practitioner Donna Catamero explains the importance of maintaining overall health before CAR T-cell therapy, staying organized during treatment, and how healthcare teams are improving the management and anticipation of side effects.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

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

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

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Wow, that’s great. Why is it so important for those undergoing CAR T-cell therapy to manage their overall health? 

Donna Catamero:

So, the healthier you go into a treatment, the better you’re going to feel, and this includes your activity level, so, really maintaining activity, getting out there, walking, exercising, eating things in moderation, having a healthier diet, and I just think the better you feel going into therapy, the better you’re going to tolerate therapies. 

Katherine Banwell:

Okay. Managing life before and after CAR T-cell therapy can be a really big undertaking. What tips do you have for staying organized at home, especially related to medication and follow-up appointments?  

Donna Catamero:

So, CAR T therapy can be very intense up front. There’s a lot of appointments, a lot of things you need to do to prepare yourself to get ready to collect your T cells and to receive your T cells, and it’s a lot of appointments, a lot of scheduling, and treatments to gear up for that cell infusion. So, what we do for our patients is getting calendars for patients, diaries for patients, to really keep them organized. It is a lot up front, but then, after a patient receives their T cells, they are then more on a maintenance phase, and life will get easier. It’s just heavy up front.  

Katherine Banwell:

Would you say that healthcare teams are getting better at managing and anticipating CAR T side effects? 

Donna Catamero:

Absolutely. So, we have several years of experience now. We can anticipate the timing of certain side effects, we manage them very well, many institutions are now doing CAR T therapies as an outpatient, so we really have gotten a great handle on how to manage these side effects, when to anticipate these side effects. And then, even long-term monitoring and managing patients several months post the CAR T infusion, infection prevention, etc., we have done quite well and been successful with our patient outcomes.   

Current and Emerging CAR T-Cell Therapies for Myeloma

What are the current and emerging CAR T-cell therapies for myeloma? Nurse practitioner Donna Catamero discusses approved CAR T-cell therapies for multiple myeloma, who they’re appropriate for, ongoing research to expand their use, and treatment options if the disease returns after CAR T-cell therapy.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Being Empowered | The Importance of Understanding Myeloma

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Donna, welcome. Thank you so much for joining us. Would you please introduce yourself and tell us about your role at Mount Sinai? 

Donna Catamero:

Sure. I’m Donna Catamero, I’m a nurse practitioner, and I’m the associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. 

Katherine Banwell:

Would you tell us about the currently approved CAR T-cell therapies and which myeloma patients they may be right for?  

Donna Catamero:

So, currently, we have two products available for patients. The first is idecabtagene vicleucel (Abecma), and it’s approved for patients with relapsed/refractory disease who have received two prior lines of therapy, and this includes exposure to an immunomodulatory agent, so, your lenalidomide (Revlimid), your pomalidomide (Pomalyst), a proteasome inhibitor, and that includes Velcade/Kyprolis, and an anti-CD38 monoclonal antibody, so this is your daratumumab (Darzalex) or isatuximab-irfc (Sarclisa). 

The second product we have to offer patients is ciltacabtagene autoleucel (Carvykti), and this is approved for patients a little bit earlier on, so, also relapsed/refractory disease who have received at least one prior line of therapy, and it must have included proteasome inhibitor and an immunomodulatory agent, and they need to be refractory to Revlimid. So, what “refractory” means is they relapsed while taking the Revlimid.  

And both these therapies are important for patients, so if patients are inquiring about CAR T therapy, they should ask their providers what product is available for that. 

Katherine Banwell:

Let’s talk about research in CAR T-cell therapy. What new options are being studied, and how far along is the research? 

Donna Catamero:

So, we’re actually very excited. So, the two products, Abecma and Carvykti, we’re actually looking at them in newly diagnosed myeloma patients, and this is regardless of if patients are eligible for transplant or not, and we’re looking at comparing transplant versus CAR T therapies, so we’re hoping to move CAR T therapies for newly diagnosed – so, first-line therapy – so this is very exciting, and we’re also investigating new products with dual targets. 

So, right now, our two approved CAR Ts, they target BCMA, so now we’re looking at CAR Ts that are targeting BCMA and another target – so, GPRC5D or CD19 – so this means that the CAR T is grabbing onto more cells, so, in theory, it would have a higher cell kill.  

And then, we’re also investigating CAR Ts that we call off-the-shelf, so, autologous CAR Ts, so, donor CAR Ts, and this is actually exciting for patients who maybe can’t wait for manufacturing of their T cells, and now we can use donor T cells. So, these are earlier on studies, so we’re hoping within the next few years, more options will be available for patients.  

Katherine Banwell:

Yeah. What happens if the myeloma comes back after T-cell therapy? What are the treatment options available beyond CAR T? 

Donna Catamero:

Earlier on, we were hoping that CAR T would be our cure, but patients are getting very long, durable remissions from their CAR T therapy. We see patients who are five, seven, eight years out from their CAR T therapy, so patients do have a long time in remission, but the myeloma can come back. 

And what do we do with these patients? We actually have been very successful managing patients post a CAR T relapse, so we are looking at bispecific antibodies, which were recently approved over the past several years, and we see patients who have had relapses from their CAR T go back into a remission with these bispecific therapies, and again have long, durable remissions. So, we can absolutely manage patients if their myeloma comes back after CAR T therapy. 

Advice for Inquiring About Myeloma CAR T-Cell Therapy Clinical Trials

How can patients find CAR T-cell therapy clinical trials? Nurse practitioner Donna Catamero shares resources for identifying trials, such as ClinicalTrials.gov, and encourages patients to ask providers about available trials and eligibility.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

Related Resources:

Understanding Myeloma Therapy Targets BCMA and GPRC5D

Understanding Myeloma Therapy Targets BCMA and GPRC5D

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

Transcript:

Katherine Banwell:

How can patients find CAR T clinical trials that might be right for them? 

Donna Catamero:

So, ClinicalTrials.gov can point patients in the right direction. Again, the foundations – the Multiple Myeloma Research Foundation, the International Myeloma Foundation – can help direct patients toward clinical trials that might be right for them.  

Katherine Banwell:

How can patients start the conversation with their provider? What questions should they be asking about trials? 

Donna Catamero:

So, first, when you’re given options for treatment, you should always ask – always, always ask – “Am I eligible for a clinical trial?” 

All the therapies we have available today for patients initially came from clinical trials. In our early CAR T therapies, those patients had access to those drugs years before the general myeloma population, so clinical trials are key to really moving the therapies for tomorrow.  

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions from Patient Empowerment Network on Vimeo.

This animated video defines common myeloma treatment goals, provides an overview of available myeloma therapies, and includes advice for making care decisions and the importance of being your own advocate.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care

The Benefits of Shared Decision-Making for Myeloma Care


Transcript:

Bianca: 

Hi! I’m Bianca, a nurse specializing in myeloma. In this video, we’ll discuss myeloma therapy and explain how to work with your healthcare team so that you can choose a care plan best suited for YOUR myeloma. 

I’d also like to introduce you to Suzanne. Suzanne is a patient advocate living with myeloma.  

Suzanne: 

Thanks, Bianca. I’m happy to share my own experience and to talk about how I worked with my healthcare team to decide on a care plan. 

When my doctor and I were first considering my options, we started by setting treatment goals. Bianca, can you define treatment goals?  

Bianca: 

Sure! Each patient is unique, so it may vary by person. You should collaborate WITH your healthcare team to determine YOUR treatment goals. Common goals of myeloma treatment may include: 

  • Reducing and managing your symptoms. 
  • Slowing the progression of the disease. 
  • Inducing remission. 
  • And, helping you live longer while maintaining quality of life.

Suzanne: 

Thanks for explaining this. When I discussed treatment goals with my doctor, I pointed out that I still wanted to be able to play pickleball with my friends, and to care for my young grandchildren. We reviewed options that could allow me to stay as active as possible and manage my myeloma at the same time. 

Bianca: 

That’s a great point, Suzanne. It’s also important to remember that your treatment goals can change throughout the course of your myeloma. Discuss them regularly, not just with your care team but also your care partner – that can be a family member or even a close friend. 

Suzanne: 

That’s right. I discussed my care with my husband AND my adult children – it’s important to keep your support team in the loop.  

And it’s also essential to understand the treatment options available to you. Bianca, what are the types of therapy available to treat myeloma? 

Bianca: 

There are a number of different classes of therapy, which include: 

  • Proteasome inhibitors; 
  • Immunomodulatory therapies or IMiDs; 
  • Monoclonal antibodies; 
  • Stem cell transplants; 
  • There are also the new and recently approved therapies such as bispecific antibodies and CAR (Chimeric Antigen Receptor) T-cell therapy; 
  • And, of course, clinical trials.   

Clinical trials can be a good option for patients at any stage of disease, often giving patients early access to a viable and cutting-edge therapy. When considering treatment, you should ask your doctor if there is a clinical trial that may be right for you.  

Suzanne: 

Good point! When I was deciding on a therapy, my doctor and I, along with my husband, discussed the risks and benefits of each approach as well as the potential outcome of each option. My doctor also walked through the clinical trials that were available to me. 

Bianca, given all of the options, how do you decide which therapy is appropriate for a particular patient? 

Bianca: 

That’s a great question. As mentioned in our previous video, results of in-depth testing, which determine if a patient has low-risk or high-risk myeloma, can affect your choices. Other factors that impact treatment decisions may include: 

  • Your age, overall health, and any pre-existing conditions. 
  • Potential side effects of the treatment. 
  • Previous therapies that may have been used to treat your myeloma. 
  • The financial impact of a treatment plan. 
  • And the patient’s lifestyle and preference.  

Suzanne: 

That’s right. And, you shouldn’t hesitate to weigh in on what YOUR preference is. Do your own research so you understand each treatment approach, then work WITH your healthcare team to determine what might be best for you.  

Bianca: 

That’s excellent advice, Suzanne. So, when making treatment decisions, you should: 

  • Work with your healthcare team to understand your treatment goals. 
  • Talk with your doctor about all available treatment options. 
  • And, inquire about any clinical trials that may be right for you. 
  • Then, discuss the pros and cons of each option. 
  • Bring a care partner with you to appointments and take time post-visit to discuss the proposed plan and treatment options. 
  • And, always remember that you have a voice in your care. Speak up and ask questions. You are your own best advocate. 

Suzanne: 

Great advice, Bianca. Don’t forget to visit powerfulpatients.org/myeloma to learn more. Thank you for joining us!  

Miguel’s Journey: Embracing CAR T-cell Therapy as a Latinx Myeloma Survivor



Miguel’s Journey: Embracing CAR T-cell Therapy as a Latinx Myeloma Survivor from Patient Empowerment Network on Vimeo.

Myeloma survivor Miguel wasn’t experiencing any symptoms when he received his shocking diagnosis. Watch as he shares his experience as a Latinx myeloma patient dealing with testing, multiple lines of treatment, and CAR T-cell therapy – and how to stay [ACT]IVATED in your care.

See More from [ACT]IVATED CAR T

Related Resources:

What Is the Impact of CAR T Therapy Access Barriers on Patients?

What Is the Impact of CAR T-Cell Therapy Access Barriers on Patients?

What Are CAR T Therapy Requirements for Care Partners?

What Are CAR T-Cell Therapy Requirements for Care Partners?

CAR T-Cell Therapy Follow-Up Monitoring | What Patients Can Expect

CAR T-Cell Therapy Follow-Up Monitoring | What Patients Can Expect

Transcript:

Being ACTIVATED in CAR T-cell therapy care is critical for patients and families. My name is Miguel and I want to share my story as a myeloma survivor and Latinx man. Even though CAR T-cell therapy has improved survival rates for myeloma patients, some disparities to treatment access still persist. 

I was 52 when I was diagnosed with smoldering myeloma, and my diagnosis came as a complete shock. I wasn’t experiencing any symptoms, and my doctor only discovered my condition after noticing that something looked abnormal in my blood work. After ordering further testing, my diagnosis was confirmed with a bone marrow biopsy. That was just the start of my long journey. My hematologist informed me that several rounds of chemotherapy would be best for my first line of treatment.

After I finished my rounds of chemo, my hematologist continued to monitor my tests closely for signs of recurrence. When my tests reached concerning levels, my doctor then recommended that I move forward with an autologous stem cell transplant – taken from my own stem cells.

Those were just my first two lines of therapy. My third line of therapy was an immunotherapy as part of combination therapy that worked for nearly two years. An allogeneic stem cell transplant – with stem cells taken from a donor – was recommended next. That second stem cell transplant kept my myeloma at bay for about two years. It was a nice break, and I was able to qualify for a CAR T-cell therapy when it came time to act on my fifth line of treatment. I had learned from my myeloma support group that patients need to have a lot of support to qualify for CAR T. 

Patients need to have a care partner to support them, and I was fortunate enough to have my sister stay with me to help me with my appointments and recovery. CAR T-cell therapy has made the future brighter for so many myeloma patients.

There have been a lot of recent advancements in CAR T-cell therapy for myeloma. I hope that sharing my story will make a difference for other myeloma patients who may have some mistrust of doctors. Remember, become empowered and stay [ACT]IVATED with these tips. 

[ACT]IVATION tips for CAR T patients: 

  • Ask your care team questions to learn about the status of your myeloma, treatment options, and what to expect during and after treatment.
  • Inquire if a clinical trial may be a potential treatment option for your myeloma.
  • Join a patient support group to offer and receive emotional support.
  • Stay updated about myeloma treatment options and research advancements. 

Being proactive is an essential step in your myeloma journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.


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PODCAST | Evolving Myeloma Treatment Options: How You Can Access Cutting-Edge Care

 

 

With the quickly evolving landscape of myeloma treatment and care, it’s important to work with your healthcare team to determine a care plan. In this program, Dr. Omar Nadeem discusses the latest updates in research and clinical trials, the role of new and emerging therapies– including bispecific antibodies and CAR T-cell therapy–and shares advice for accessing quality myeloma care.

Dr. Omar Nadeem is the Clinical Director of the Myeloma Immune Effector Cell Therapy Program and Associate Director of the Multiple Myeloma Clinical Research Program at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem.

Download Resource Guide

See More from Evolve Myeloma

Transcript:

Katherine:

Hello, and welcome. I’m your host, Katherine Banwell. As patients collaborate on treatment decisions with their healthcare team, it’s important that they understand all of their options and how these options may be impacted by research developments. That’s why the Patient Empowerment Network created the Evolve series, to arm you with the latest information and help you feel empowered and confident during conversations about your myeloma care.  

In today’s program, we’re going to hear from an expert in the field about the evolving treatment landscape and discuss how you can play an active role in your care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what may be best for you. Well, let’s meet our guest today. Joining us is Dr. Omar Nadeem. Dr. Nadeem, welcome. Would you please introduce yourself.  

Dr. Nadeem:

Thank you. Hi, everyone. My name is Omar Nadeem from the Dana-Farber Cancer Institute. It’s my pleasure to be here.  

Katherine:

Thank you so much for joining us today. Before we get into our discussion, would you share with the audience how the field of myeloma care has changed over the course of your career?   

Dr. Nadeem:

Yeah, and things are changing so rapidly. My career started after my training in 2015 and at that time, daratumumab (Darzalex) just had its approval in relapsed/refractory multiple myeloma. That, along with several other monoclonal antibodies a few immunomodulatory drugs and proteasome inhibitors.  

At that time, it felt like myeloma was at the forefront of significant advances and change in practice, which it was. Little did we know that we were right around the corner with the next renaissance of myeloma therapy, which is these immunotherapies that have been approved over the last three to four years now. So, safe to say things are changing so, so fast and it’s leading to excellent outcomes for patients.  

Katherine:

Yeah, it’s great news. So positive. I’d like to start with the importance of a patient’s healthcare team. What are the benefits to seeking care with a myeloma specialist, even if it’s just for a second opinion or a consult? 

Dr. Nadeem:

Yeah, so, myeloma is a little less than 2 percent of all cancers, and it’s the second most common blood cancer, so certainly not rare. With that being said, if you go to a general community practice, they don’t typically see too, too many patients with this disease. So, alongside that, we have so many different treatment options and combinations and these, as I mentioned, immune therapies.  

And other therapies that are only actually carried out at academic centers for now, such as stem cell transplants, and CAR T-cell therapy. I think it’s important to kind of meet with an academic provider just to get a sense of what the patient may be facing, both in that immediate time, but also in the future, because a lot of myeloma therapy is lifelong. And in that case, you do have to come up with a plan for your whole treatment in a way early. So, it’s important to kind of one: hear it from another person, and then two: really sort of figure out what the outlook would look like for the individual patient.  

With that being said, many of our myeloma regimens that are approved can very easily be given at the local provider, and that’s usually our preference, for patients to be treated closer to home. So, ultimately, this is another way for patients to get input about their treatment program, but also talk about the future.   

Katherine:

That makes sense. Specialists at academic medical centers are typically more involved in research and clinical trials. 

And patient participation is essential to advancing medicine. So, how do clinical trials impact myeloma care? 

Dr. Nadeem:

Well, everything that we have available today for myeloma therapy was once in a clinical trial. So, all these promising therapies usually start in early phase studies and move on to Phase II and Phase III studies, and then those are the ones that the FDA uses to approve a particular combination.  

So, it all depends on kind of where someone is in their disease course. It also kind of depends on what their preferences may be in terms of taking on something that is beyond standard of care. So, as part of any clinical trial in whatever phase it may be, whether its newly diagnosed multiple myeloma, even smoldering myeloma, which is one step before that, relapsed/refractory myeloma.

At each step of the way, there are clinical trials that are there trying to improve upon what’s already out here, right? So, we are, despite all these amazing advances, unfortunately, the disease is still not curable for a vast majority of patients.  

In that case, how do we move to that cure, or how do we kind of advance the disease even beyond this? And a clinical trial is a way to do that.  

Katherine:

What type of patient is most appropriate for a clinical trial? 

Dr. Nadeem:

So, there are criteria that each clinical trial uses in terms of eligibility. Some of that has to do with the disease characteristic itself, kind of where somebody is in their disease course, but many times it’s also patients’ fitness, organ status in terms of kidney function, their blood count to some extent, heart function, etcetera. There are some sort of minimal prerequisite guidelines that we have to enroll patients in trials. So, it really, again, depends on where somebody is in their disease course and what they may be willing to take on beyond what may be offered to them as part of standard of care.  

Katherine:

What questions should patients be asking if they’re entrusted in participating in a clinical trial? 

Dr. Nadeem:

I think the important thing is to sort of first recognize what’s available to them as part of standard of care and then what the clinical trial is trying to answer.  

So, for example, if it’s newly diagnosed multiple myeloma, we now have quadruplet regimens that we give to patients at the time of their diagnosis, and then the next natural question for eligible patients that now comes up is whether they should do a stem cell transplant or not.  

And alongside that goes with all these advances in immune therapies, such as CAR T-cell therapies and bispecific antibodies. And there are now trials looking at those therapies and comparing them, for example, to stem cell transplant to try to answer the question “Can we get even beyond something like a stem cell transplant?” 

So, that’s one example of a trial where a patient may be interested in saying “Okay, well, a transplant may be my standard path, but what if I try to enroll in this study and get randomized, for example, to the CAR-T arm? Then, perhaps, I’m getting access to some of these therapies early and maybe that’s going to improve my outcomes.” 

Katherine:

Well, I’d like to talk about some new and emerging therapies in myeloma, starting with CAR T-cell therapy. Can you talk about who this treatment option might be appropriate for? 

Dr. Nadeem:

So, yeah, just to kind of give folks background, CAR T-cell therapy is a form of immunotherapy, where we take out an individual’s T-cells and then re-program them, essentially, to recognize myeloma cells. Right now there’s two approved CAR-T products for multiple myeloma, both in the relapse refractory setting. It’s really for patients that have had four or more lines of therapy.  

So, that’s a lot of different combinations that we currently have available. Those therapies stop working before patients are actually eligible for CAR-T cells at the moment. Both of these CAR T-cell products have been gamechangers in terms of improving prognosis for patients.  

The good thing about CAR-T cells is that it is a one-and-done treatment. So, patients, when they go through that initial phase of therapy, they are then off therapy, although we are now starting to study certain therapies that we may administer after CAR-T cells to get them to last even longer than they currently do, but that’s still in, for example, that’s one of the clinical trials or many of the clinical trials that are currently ongoing now, to try to answer that question.   

So, a lot of patients can be eligible for CAR-T cells. They have to have the prerequisite amount of therapies. Again, there are some sort of baseline fitness characteristics that we look at for patient’s ability to tolerate it. But as a whole, I consider CAR T-cell therapy more broadly applicable to myeloma patients than compared to, let’s say, a stem cell transplant.   

Katherine:

How has this therapy revolutionized myeloma care? 

Dr. Nadeem:

Yeah, before the first approval, now a few years ago, in this space we didn’t really have anything like this to offer patients. So, many of the combinations and other compounds that were in clinical trials would have a response rate somewhere around, let’s say, 30 percent. So, 30 percent of patients may respond to that therapy in that space, and that may only last a few months, and that was considered successful not that long ago. Now, with CAR T-cell therapy and bispecific antibodies, these therapies are highly efficacious.  

You see response rates of 70 to 100 percent in some of these immunotherapies, and what that’s translating into is patient’s disease staying away for a year or two years, even three years in some of these clinical trials. And again, this is completely unprecedented compared to what we had before.   

Katherine:

I understand that there are a number of clinical trials for different types of CAR T, or even using it earlier in the disease. Can you share updates in CAR T-cell therapy research? 

Dr. Nadeem:

Yeah, so, exactly as you pointed out, there have been trials already, actually, that have been completed, Phase III studies looking at CAR T-cell therapies in earlier relapses.  So, patients that have had either one of two lines of therapy. 

Both our CAR-T therapies have been compared to standard of care in that space and have shown superiority, and this is something that we all have been kind of waiting for to see if you deploy it earlier, perhaps you’re going to see even greater benefit, and that seems to be the case in some of these trials, and now we’re awaiting, hopefully, approval of some of these CAR T-cell therapies to be administered earlier because in fifth line, it’s very different than treating patients in second or third line, which I think will really vastly improve our ability to deliver this therapy to many patients, as it can be quite challenging for patients that are in fifth line, to allow them to go through the process of CAR-T cells and then having them be administered.  

I was looking at it head-to-head with stem cell transplant, as I mentioned before, and this is in the context of quadruplet and induction therapy followed by either CAR-T cells or stem cell transplant, and then followed by maintenance therapy. So, really trying to see if I can overcome what we typically have achieved with stem cell transplantation. 

We also are doing some studies even before that. So, patients, again, in high-risk smoldering myeloma, which we know have an increased risk of developing newly diagnosed disease in the next few years, perhaps that could be the time where we can give some of these immunotherapies, and that’s some work that we have going on at our center. 

Katherine:

Well, another therapy that has emerged in myeloma is bispecific antibodies. What patient type is this therapy right for? 

Dr. Nadeem:

So, bispecific antibodies are great because they’re off the shelf. What that means is that CAR-T cells, we first have to collect the T cells and we then have to send them off to be manufactured, and that manufacturing process can take up to a month, sometimes even longer, for some of the current available CAR-T products. And then, after the cells are returned to the facility, we then give usually three days of chemotherapy to try to suppress some of the immune systems of the patients. So, that way, when the cells are administered, they can expand robustly and do essentially what they need to do. 

So, that whole logistical process can take a couple of months by the time you identify somebody for CAR-T cells and then, from that moment until they can actually be treated. With bispecific antibodies, if we think somebody’s ready to go, you can basically get it as soon as we can have somebody ready to go either in our clinic or on the in-patient facility. So, they’re much easier. They also utilize T cells to attack myeloma cells. We now have three approved bispecific antibodies. Two of them are targeting BCMA, the same exact target that we have in CAR-T cells, and one of them is now targeting a new target called GPRC5D, which is also highly expressed on myeloma cells.  

So, having all these bispecific antibodies available is excellent because patients can have access to them a lot faster and now we’re trying to answer the question of sequencing. Can you give bispecific antibodies after CAR-T cells for example? Can you give one bispecific antibody after another, especially if there’s a different target that we now have available? 

As a whole, though, bispecific antibodies tend to have lower response rates than CAR-T cells, particularly Cilta-cel (Carvykti), which is cilta-cel that has a very high response rate of close to 100 percent.  

Most bispecific antibodies have response rates somewhere around 70 or so percent, so about two-thirds of patients respond to these therapies, again, in that fifth line or four or more lines of therapy. So, in that space, that’s the response rate. And across the board, generally speaking, patients benefit from these bispecific antibodies approximately a year on average. Some of the studies have shown longer benefit, and it also depends somewhat on response to therapy.  

Patients that have a really deep response can go even way longer than that. So, it is quite mixed in terms of how somebody may do on these bispecific antibodies, but those are the numbers.  

Katherine:

Well, it sounds like bispecific antibodies have really transformed myeloma treatment options.  

Dr. Nadeem:

Absolutely, and what goes hand in hand in this.  

I mentioned the logistics of CAR T, but then there’s also the supply and availability of CAR-T cells. Since the approval, the demand for CAR-T cells has been very high because of all these excellent results, but the supply really hasn’t been there. So, even at a center as busy as ours, we can only treat a handful of patients with CAR T-cell therapies compared to bispecific antibodies, where that is essentially an injection similar to many other approved myeloma agents that you can just readily treat patients with. So, CAR-T cells, while I think, again, have higher efficacy, with that comes slightly higher toxicity as well. It’s a very different kind of treatment program.  

And then, patients get a treatment-free interval, which you don’t see yet with bispecific antibodies. On the other hand, bispecific antibodies are readily available, slightly lower response rates, slightly lower toxicity when it comes to at least the traditional T-cell directing toxicities. And then you have, again, the readily available nature of it, which I think is hugely beneficial for patients.  

Katherine:

You talked about some specifics regarding bispecific antibodies, but are there updates in bispecific antibody research that you’d like to share? 

Dr. Nadeem:

Yeah, so, again, kind of following the theme of what we just said about CAR-T cells, can you bring these antibody therapies earlier? And there’s ongoing trials now looking at it in newly diagnosed multiple myeloma and early relapses, and then we presented our data at ASH this previous year looking at it in high-risk smoldering myeloma. We treated patients with teclistimab (Tecvayli), which is a BCMA bispecific antibody that is approved for relapse refractory patients. And what we demonstrated in that study is that people that got Teclistimab had a 100 percent response rate with an MRD-negative rate. So, kind of as deep of a response as we can measure, also at 100 percent.  

So, this is something that we had not seen before. When their immune systems are a lot healthier, they may benefit more. So, hopefully we’ll see confirmation of these results in other trials.  

Particularly in the newly diagnosed space because we do think that these antibody therapies have such huge potential to treat patients, and then hopefully we’ll have durable responses. So, I do think that some of this paradigm may shift over the next few years, and then there’s also combinations that are currently being studied: combinations with traditional myeloma therapies, such as monoclonal antibodies, other immunomodulatory agents, or proteasome inhibitors. All these combination trials are now ongoing to see can you improve upon some of those numbers that I highlighted before with single-agent bispecific antibody therapy. 

Katherine:

Oh, I was just going to ask you the next question, which is are there other emerging myeloma therapies that are showing promise? 

Dr. Nadeem:

Yes. So, I think over the last few years, most of the buzz has been with these immunotherapies. And, again, more work to be done there to see whether combinations, different schedules, different targets, different types, will show more and more benefit in each of these myeloma disease settings.  

But we also have simultaneous development of other agents that are not in this sort of immunotherapy T-cell redirecting therapy realm. We have newer versions of our classic immunomodulatory drugs, such as lenalidomide (Revlimid) or pomalidomide (Pomalyst).  

We now have their next generation agents, called CELMoD drugs and there’s two of them in development. One of them is called iberdomide; one is called mezigdomide.  

These are, again, kind of building up on the success of some of these previous therapies that are kind of cornerstone therapies for myeloma patients and because these are essentially better agents, they’re more targeted, and they also have greater response rates as single agents and as combinations.  

We’re hoping that these would be approved in the not-so-distant future and then perhaps will replace some of these immunomodulatory drugs that we have currently utilized in newly diagnosed and relapsed myeloma. Essentially what this means is things are just getting better and better and better as we get newer versions of some of these therapies. So, those are, I would say, kind of next in line in terms of hopeful approvals.  

And then we’ll add to some of the options that we have for myeloma patients.  

Katherine:

How can patients and care partners stay informed about the latest myeloma research? 

Dr. Nadeem:

Yeah, it’s a lot of moving parts all the time. From one six-month interval to the next, you tend to have nowadays perhaps some drug approvals, which is amazing, but if not updates of all these sort of combination trials, etcetera, of where these things are going. I think kind of talking to your physician, obviously, about some of these updates is really critical. As I mentioned before, having a roadmap in your mind about what the myeloma therapy for you might look like going forward, wherever you are in your disease state, is always important because it gives you time to sort of think about it, learn about it, prepare for it.  

Some of these therapies really require an effort from the patient and their caregivers because, for example, for CAR-T cells. If you’re not near a center, you may have to relocate for a month.  

And it’s very difficult, and we fully understand that and try to help as much as we can, but that’s the kind of commitment that it takes. So, talking to your physician, obviously content like this, reviewing this as much as you can. Online patient support groups are great because you learn from the other patients’ experiences. So, the good news now is we have so many channels of communication, but you have to in a way, in the end, discuss with your physician and verify things you may find on your own.   

Katherine:

Exactly, yeah. You want to make sure you’re getting facts rather than fiction.  

Dr. Nadeem:

Yeah. That’s right.  

Katherine:

Well, Dr. Nadeem, we’ve been hearing the term personalized medicine more frequently in recent years. How would you define personalized medicine for myeloma, and how can patients access this type of care? 

Dr. Nadeem:

Yeah, personalized medicine or precision medicine is a term that we’ve really sort of used for many oncologic conditions over the last decade or so. I would say, for multiple myeloma, in terms of identifying a target within the myeloma cell that’s unique to the patient.  

And then deploying a certain therapy to that patient because of that target is still lacking. We do have one example where patients have, for example, an 11;14 translocation, which we see in about 15 percent of myeloma patients.  

There’s an agent called venetoclax (Venclexta) that is very active against that particular cohort of patients, although that is still not approved to be used, but that’s one example where that agent specifically benefits that type of myeloma. Other than that, most of the therapies that we have benefit essentially everybody with myeloma, which is great, but it’s not so personalized.  

Where I would say there’s the most personalization happening now, at least in my practice, is looking at which types of therapies an individual patient may receive. What I mean by that is if somebody’s in an excellent response, with quadruplet-based induction therapy, I have a very real discussion with them about the pros and cons of stem cell transplant. We make those decisions in real time depending on how the patient doing, depending on how their response is.  

And then kind of deciding a whole kind of what are the kind of risks and benefits and what makes sense for that individual patient. Similarly, when you go on to maintenance therapy, maintenance therapy means that after you’ve gone through the initial phase of your myeloma therapy and the disease is under control, what type of therapy can we keep you on to keep it under control for as long as possible? Historically, that has been lenalidomide or Revlimid. Now we’re adding drugs such as daratumamab and other agents to Revlimid to see if that can further prolong the response to that initial therapy.  

So, all those decisions are so individualized that you have to discuss with your provider what makes sense for you and what are the pros and cons of doing one approach versus the other.  

Katherine:

Well, if we’re talking about in-depth testing, how do the results of that testing affect treatment options? 

Dr. Nadeem:

So, right now we use conventional blood tests to get a sense of response in the vast majority of patients. That includes the serum protein electrophoresis and the serum free light chain assay.  

Most patients have detectable levels of these proteins, abnormal proteins in the blood at diagnosis and then you can follow them using a blood test. There’s a subset of patients that have disease only that shows up on scans. So, we then kind of incorporate some of those scans and then, also, utilize the bone marrow results both in the beginning and in subsequent analyses to kind of give a big-picture composite response assessment for that particular patient. Nowadays, there are also other tools that we’re using, such as MRD, or minimal residual disease.  

That is a test that is done on a bone marrow biopsy to determine, if you don’t have detectable protein in the blood, do you have myeloma cells present at the deepest level possible? And if you do versus if you don’t, trials have shown that there is a difference in terms of prognosis. Now, while that hasn’t fully been utilized yet to make treatment decisions in patients that are not on clinical trials, we do get prognostic information out of it, and nowadays, more and more of those trials are using these MRD tests to determine what to do with treatment.   

And I think that’s how it’s going to be in the future. So, having those extra tests available but, again, important to discuss with your provider what is the utility of this test. How are we going to use this information for your individual case to make some decisions? 

Katherine:

What questions should patients be asking their provider about a proposed treatment plan?  

Dr. Nadeem:

Yeah. I think because myeloma therapy’s so nuanced and much of this is still in clinical trials or under investigation about what to do with some of these results, I would say, as a whole, it’s important to know which tests the physician looks at to determine how you’re doing, and kind of what their assessment of that result is. So, for example, if somebody’s had a 50 percent reduction in the amount of abnormal protein in the blood, is that sufficient, or should we be aiming for a number that’s much higher than that? 

Some of that depends on kind of where they are in their treatment course, but that’s a very sort of reasonable question to ask your physician is that where do you see my response now, let’s say six months into therapy, and is this adequate, and what is now, after we have all this information, what is my roadmap going forward to try to keep this disease in check? 

Katherine:

Yeah. Well, that’s great advice, Dr. Nadeem. Thank you. PEN has also created a downloadable office visit planner to help you organize your thoughts and communicate effectively with your healthcare team. You can find these at Powerfulpatients.org/myeloma.  

I’d like to turn to self-advocacy, Dr. Nadeem. Why is it so important that patients engage in their care treatment decisions? 

Dr. Nadeem:

Yeah. As I mentioned, myeloma therapy is so individualized now and we can sit here, look at the trial data, get very into the weeds and technical about this therapy with this approach as X or Y higher response rate.   

Or MRD-negative rate, but in reality, we’re dealing with people and we’re dealing with people that have lives. They have all their priorities, and until you share that with us, it’s very difficult for us to know exactly what’s important to you. So, what I may consider to be kind of the “best therapy” for you may not make sense for you because of all the priorities that you may have, and I think it’s so important to advocate for yourself and not be afraid to bring that up to your physician because I think many patients kind of hold that stuff in for a long time because they don’t want it to impact their care. But I would argue the other way around.  

Tell us. Tell us exactly what you prioritize. Tell us if you can’t be out of commission for work for X amount of time because of a stem cell transplant. We now have options. We now have options for patients because of all these amazing new therapies for myeloma and we can come up with a very individualized treatment plan for you based on your priorities.  

Katherine:

If a patient is feeling like they’re not getting the best care or they’re uncomfortable with the care they’re receiving, what steps should they take to change that?  

Dr. Nadeem:

Yeah, I think that’s very difficult because this is a complex system. Medical systems are getting even more and more complex. They’re busy. Everybody’s busy: busy offices, labs, radiology. We’re all feeling that. It doesn’t matter where you are. So, I think it’s important to raise those concerns, number one, to your practice that you’re being seen at because they would like to see that feedback, right? So, kind of see what is something that they can perhaps improve upon. I think it’s always important, like we just said, to advocate for yourself and raise some of these issues and not be afraid of that.  

We’re all in this together, right, so I think ultimately, we’re all trying to take the best care of you and we would need to know which part of that may or may not be working so well.  

Katherine:

Let’s get to a few audience questions that we received prior to the program. This one is from Rita. “Is there an age limit on CAR T-cell therapy?” 

Dr. Nadeem:

So, no, there isn’t. A lot of age-related cutoffs that we’ve historically used for transplants or even the CAR T originally don’t really apply because we all know there’s patients that are in their late 70s that may be more fit and robust than somebody in their 50s. We see this all the time. So, frailty is something that we assess quite a bit in patients in determining whether they can handle some of the toxicities that may come from these therapies. So, there’s no age cutoff.  

Again, we look at certain other medical problems you may have, how fit you are, your organ function and things like that, but ultimately the goal is can you tolerate the chemotherapy you get before CAR-T cells and then can you tolerate some of the acute toxicities of CAR-T cells, such as the cytokine release syndrome, some risk of neurological toxicity, things like that. All of those are usually short-term, and if you feel confident that we can get you through that, then you’re eligible.  

Katherine:

Yeah. Laura sent in this question: “I’m considering bispecific antibody therapy. I know some of the side effects are similar to CAR T-cell therapy. Can you share the pros and cons of bispecifics and how it compares to CAR T?” 

Dr. Nadeem:

Yeah. I think we mentioned earlier that as a whole, they’re very similar. They’re both T-cell re-directing therapies, in many circumstances, with the same exact target of the myeloma cell, but because this isn’t a cell infusion – this is a cell injection – that you receive that redirects your T cells to the myeloma cells, you tend to see a little bit of a lower toxicity signal when it comes to the cytokine release syndrome incidents and severity. You see lower neurological toxicity, usually, than you do with CAR  T-cell products as a whole.  

With that comes slightly lower efficacy than you see with at least some of our CAR-T products, but if you respond to therapy, then the durability of response can be as good as you can achieve with CAR-T cells. One thing to note about the bispecifics, though, is that it is continuous therapy, so you are getting it on some regular schedule. Right now the approval is for it to be given weekly and then go to every two weeks after six months of therapy if you’re basically in a good response.  

A lot of that is to try to mitigate the risk of infection. So, that is one of the biggest things that we have seen with bispecifics more so than CAR-T cells. Because it is continuous administration of these therapies, that really suppresses your immune system significantly, and infection rates are quite high. So, we typically give other ways to try to mitigate that using immunoglobulin infusions to try to boost up your immune system. Typically, we do that once a month for patients, making sure you’re on the right prophylactic medications and then really adjusting the therapy and the schedule to you depending on your tolerability.  

So, as we said before, it’s an excellent option. I think bispecific antibodies are going to be the mainstay of myeloma therapy going forward because CAR-T cells, again, we can’t really treat everybody with CAR-T cells just simply because of the dynamics of how the process is. So, having the bispecific antibodies available for patients is excellent.  

Katherine:

Thank you for this information, Dr. Nadeem. And please continue to send in your questions to questions@powerfulpatients.org and we’ll work to get them answered on future programs.  

We’ve definitely learned today that the field of myeloma care is advancing quickly. As we close out the program, what would you like to leave the audience with? Why are you hopeful? 

Dr. Nadeem:

Yeah. I think you all can see the tremendous progress that’s been made and, again, I still think it’s sort of the tip of the iceberg. These immunotherapies that are really showing this kind of activity, we’re just learning about them, and we’re going to improve them, not just the way we administer them. We’re going to make them even better and better and better and our hope is that a cure is not so far in the future. And perhaps even now we can cure a subset of patients if we deploy some of these therapies in the right person at the right time. So, I think that is really what I am hopeful for, that we have all these options available.  

Now it’s up to us to figure out which one fits in where and then, as we do that, hopefully we’ll see even better and better outcomes. And my hope is, over time, that this is a disease that we can cure at least in a subset of patients, which means that they get fixed duration therapy with whatever that we have.  

And then they’re done, and then hopefully never have to have therapy for this disease because it’ll be gone, and then, in patients that develop a disease relapse, we then treat them with some of these other agents. So, this is starting to hopefully mirror what we see in other blood cancers, such as lymphoma, for example, where you give the initial therapy and cure a subset of patients. Hopefully we can get there with myeloma in the not-so-distant future.  

Katherine:

It’s a very promising outlook to leave our audience with. Dr. Nadeem, thank you so much for joining us today. 

Dr. Nadeem:

Thank you so much for having me.   

Katherine:

And thank you to all of our collaborators. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.  

Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care from Patient Empowerment Network on Vimeo.

This animated video reviews the types of myeloma, essential testing following a myeloma diagnosis, and advice for working with your healthcare team for the best overall care.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

The Benefits of Shared Decision-Making for Myeloma Care


Transcript:

Bianca: 

Welcome back! I’m Bianca, and I’m a nurse. I specialize in caring for people with myeloma. And this is Suzanne, a myeloma patient advocate.  

In this video, we are going to learn more about diagnosis and testing, and how test results may impact myeloma care. 

Suzanne: 

That’s right, Bianca. Most patients want to–and should– understand their diagnosis. Let’s start with the basics. Can you explain the different types of myeloma? 

Bianca: 

You bet. Let’s start with MGUS, which stands for monoclonal gammopathy of undetermined significance. MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine. This type of myeloma doesn’t require treatment but should be monitored regularly. 

Smoldering myeloma is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly. 

And then there’s multiple myeloma, which is a buildup of plasma cells in the bone marrow that crowds out healthy cells, and causes symptoms and other problems in the body. Multiple myeloma requires treatment, and there are a number of approaches available. 

Suzanne: 

Thanks for explaining the difference. When I was initially diagnosed, I underwent a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.  

Bianca: 

Those are the standard tests when diagnosing myeloma. Your healthcare team should also order a more in-depth FISH test, which comes from the bone marrow biopsy sample, and FISH  testing can provide a better understanding of your disease. This is important because the results may impact your treatment options. 

Suzanne: 

Right—and it’s important ensure that you have had all necessary testing including this more in-depth test. You should also review the lab results with your healthcare team. You can ask questions like:  

  • Am I high-risk or low-risk?  
  • What do the results mean? 
  • How will the results impact my options for therapy? 
  • And, how often should testing be repeated? 

Bianca: 

That’s good advice, Suzanne. All of the information gathered during your diagnosis, or following a relapse, should be considered as well as your overall health when deciding on a care plan.   

And, as you’ve modeled, working with your healthcare team to make therapy choices is essential. This is a process called shared decision-making, which basically means that patients and their providers collaborate on healthcare decisions. Participating in this process encourages patients to engage in their care, helping them to feel more confident about the approaches they choose. 

Suzanne: 

That’s right! Working WITH my healthcare team makes me feel included and brings peace of mind when considering my options.  

Bianca: 

That’s the way it should be—you should always be at the center of your care. So, when considering a plan with your healthcare team, here are a few key steps: 

  • Start by understanding your diagnosis. 
  • Develop a good relationship with your healthcare team so that you can participate in your care. 
  • Ensure you have had all essential testing, including in-depth testing. 
  • Discuss the tests results with your doctor and ask questions about what they mean. 
  • And, as always, do research on your own and confirm what you’ve learned with your healthcare team. 

Suzanne: 

And don’t forget to visit powerfulpatients.org/myeloma to view more videos with Bianca and me. Thank you for joining us!  

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

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

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

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

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

Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

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

Bispecific Antibody Therapy Support | Care Team Members and Resources

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

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

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

Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

Katherine:

What about online resources? Do you have any recommendations?  

Alexandra:

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

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

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

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Has Bispecific Antibody Therapy Impacted Myeloma Care?

How Has Bispecific Antibody Therapy Impacted Myeloma Care?

Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

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

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

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

How Can Bispecific Antibody Therapy Care Partners Be Proactive?

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

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

Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

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

Alexandra:

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

Katherine:

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

Alexandra:

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

Katherine:

What is considered an ideal response?  

Alexandra:

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

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

Bispecific Antibody Therapy | Managing Side Effects

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

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

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

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

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

Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

Katherine:

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

Alexandra:

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

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

Katherine:

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

What other things should care partners be looking for?  

Alexandra:

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

How Is Bispecific Antibody Therapy Administered?

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

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

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

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

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

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

Bispecific Antibody Therapy | Managing Side Effects

Bispecific Antibody Therapy | Managing Side Effects

Transcript:

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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

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

Katherine:

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

Alexandra:

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