Tag Archive for: multiple myeloma

Multiple Myeloma and The Researcher’s Restless Research for Resources

The shooting pain left me frozen in place, when I stepped back on my left heel. It shot from my left hip, inward toward my spine. I knew that to mitigate my embarrassment from yelping in front of a group of friends, I’d have to gingerly move my left foot forward and attempt to stay upright while the pain fought to bring me to my knees. This pain had been progressively worsening over nearly two years. A plasmacytoma (tumor) that had “eaten away” one of my vertebrae, was the culprit. This spine tumor wasn’t my only problem…it was dangerously close to my spinal cord and had multiple friends (lytic lesions) scattered throughout my skeleton, including my spine, ribs, skull, and other random places. Multiple myeloma. An incurable blood cancer. A cancer of the plasma cells in the bone marrow. I knew nothing about it.

As a researcher, and with the help of high-dose steroids that fueled my insomnia and decimated myeloma cells, I’ve spent these last 7 years since diagnosis pouring over websites, attending seminars, consulting with myeloma specialists, conducting interviews with myeloma physicians and scientists, participating in renowned conferences, such as American Society of Hematology (ASH) and others, meeting with patients, analyzing clinical trials, serving on Scientific and Medical Affairs committees, advocating in the biotech and pharma industry, and volunteering as a fierce patient advocate, to better understand my disease.

In an effort to help patients and their loved ones understand their disease and become empowered advocates, I have compiled a brief list of my most used resources (not a comprehensive list and in no particular order…I’ll keep my favorites to myself). These resources are reliable and updated regularly. I hope it helps you. Be well. And be empowered.

1. Patient Empowerment Network (powerfulpatients.org)

I volunteer with PEN as an Empowerment Lead and believe in their message of empowering patients to become their own best advocates. PEN is a pan-cancer organization that provides resources to patients for multiple types of cancer, including multiple myeloma.

Resources: Videos, Patient Panels with Q&A segments, Activity Guides

2. International Myeloma Foundation – IMF (myeloma.org) Resources

Infoline: 1-800-452-CURE(2873). The Infoline is staffed with personnel who frequently answer questions about myeloma, how to find a specialist, events for myeloma patients, etc. If they are unable to answer a question, they will direct you to an appropriate resource.

Myelo: The IMF’s AI Assistant, ready to answer your questions based on data collected from the IMF website, which may include information on treatments, clinical trials, support resources, and many other tidbits.

Blogs: Excellent, up-to-date blogs on the latest in myeloma research, clinical trials, current events related to cancer, and advocacy.

Support Groups: The IMF sponsors support groups throughout the country. Review the list to see if there is one near you. Talking with other myeloma patients can be educational, comforting, reassuring, and empowering. If there is not a support group near you, contact the Infoline, or send an email to any group, as most of them offer virtual attendance from anywhere in the country.

EVENTS: This tab directs you to upcoming events. Go to “myeloma.org” and click on “Events” tab to register. Workshops and seminars bring together patients and myeloma specialists for education and connection.

Summary of 2025 events for IMF (myeloma.org)

  • Saturday, June 21, 2025: DENVER In-Person Regional Community Workshop (one day)
  • Saturday, August 9, 2025: SEATTLE In-Person Regional Community Workshop (one day)
  • Friday-Saturday, August 15-16: LOS ANGELES Patient and Family Seminar (two days)
  • Saturday, September 27: Waltham, MA In-Person Regional Community Workshop (one day)
  • Friday-Saturday, October 3-4: CHICAGO Patient and Family Seminar (two days)
  • Saturday, November 15: RALEIGH, NC: In-Person Regional Community Workshop (one day)

Watch for upcoming Facebook Live events with myeloma specialists and additional workshops and seminars.

3. Healthtree (healthtree.org) Resources

Myeloma Coach program: This program allows you to request a “coach” to provide information, support, resources, and encouragement while living with myeloma. You can choose coaches who have experiences similar to your own and/or expertise in particular areas, such as Stem Cell Transplant (SCT), financial resources, and specific treatments. There is no limit to number of coaches requested.

Leif (AI Assistant): Leif can answer questions, using data collected from Healthtree website, including information about treatments, side effects, how to connect to support services, etc.

Healthtree University: An extensive curriculum of resources for patients, from myeloma basics to understanding clinical trials.

EVENTS:

Roundtables: Roundtables bring together patients and specialists to provide information and connection in the myeloma community.

Podcasts: Podcasts are often moderated by Jenny, the founder of Healthtree, in conjunction with myeloma specialists.

Webinars: Webinars are on a variety of topics such as nutrition, exercise, treatments, etc.

Summary of 2025 Healthtree Events (healthtree.org)

  • Wednesday, June 18: WEBINAR – Should High-Risk Smoldering Myeloma be Treated
  • Thursday, October 23: WEBINAR – Breaking the Silence: Confronting MM Disparities in Black Health
  • Check website for additional Patient roundtables and webinars.

4. Multiple Myeloma Research Foundation – MMRF (themmrf.org) Resources

Patient Navigator Center – This program allows you to connect with professionals to answer questions about myeloma and to provide support to patients and care partners.

EVENTS: 

Patient Summits: Patient summits are in-person, virtual, or both (hybrid) and bring together patients and myeloma specialists for educational and support purposes.

Webinars: Webinars that provide myeloma specific information to patients and the myeloma community.

5. Leukemia and Lymphoma Society (lls.org) Resources

The LLS has a number of resources for myeloma patients. I’d recommend checking out their website to understand their offerings. Briefly, they sponsor a “First Connection” program, where myeloma patients can request to connect with a volunteer who also has myeloma (or experience with myeloma, as a care partner of family member/close friend); they host many Blood Conferences throughout the year, to include information and education for several blood cancer types; they offer myeloma-specific podcasts, webinars, workshops, and Q&A sessions with experts; and very importantly, the LLS is known to provide financial assistance to myeloma patients who are eligible for this financial resource.

What You Should Understand About Myeloma Clinical Trials

 In this Collaborate Myeloma animated video, nurse Bianca and myeloma patient Suzanne explain the basics of clinical trials, including the phases of clinical trials, discuss common patient concerns, and review the potential benefits of joining a trial. They also share key questions to ask your health care team when considering a myeloma clinical trial, so you can feel informed and empowered when making care decisions.

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

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions


Transcript:

Bianca: 

Welcome back! I’m Bianca and I’m a nurse specializing in myeloma care. In this video, we’re going to talk about what clinical trials are, why they matter, and how they may fit into your myeloma treatment plan.  

And joining me again today is Suzanne! 

Suzanne:   

Hi everyone! I’m so glad to be back to share my experience. Clinical trials can sound overwhelming, but they’re actually an important part of how myeloma treatments improve.  

And, for people like you and me, they can be an opportunity to access the latest, most advanced therapy. 

Bianca, can you start by explaining what a clinical trial is exactly? 

Bianca:   

Of course. A clinical trial is a study that helps researchers understand how new treatments work, or understand new ways of using existing treatments. Clinical trials also demonstrate the safety and effectiveness of therapies for people with myeloma. 

Suzanne:   

When my doctor first suggested a clinical trial, I was hesitant. But after discussing trials with my team and learning about the process and safety measures in place, I realized that clinical trials are carefully organized, and I would be closely monitored by several team members.  

Bianca: 

That’s a great point, Suzanne. You should also know that participation is always voluntary, and patients can choose to leave a trial at any time.  

And, as you mentioned, trial participants are monitored more closely than individuals who are receiving standard care. This enhanced monitoring is an essential aspect of ensuring the safety and effectiveness of new treatments.  

Suzanne:  

Good point, Bianca. It’s also important to have a good understanding of the trial process. Can you explain the phases of clinical trials? 

Bianca: 

Sure! Clinical trials are organized by phases: 

  • Phase 1 tests the safety of the treatment, finding the appropriate dose that produces the fewest side effects. 
  • Phase 2 further assesses the safety of the therapy. The treatment is tested on more humans with a specific disease. 
  • Phase 3 compares the efficacy of a new therapy to the standard-of-care treatment. 

Suzanne 

Thanks for that explanation, Bianca. When my doctor mentioned a clinical trial, we talked about how it could help me and why it was a good choice for me at that point in my care. The trial I joined gave me early access to a therapy that wasn’t widely available yet. 

Bianca: 

That’s one of the key benefits—clinical trials may provide access to cutting-edge treatments. They should not be considered a last resort option – clinical trials can, and should, be considered at any stage of care. 

Suzanne 

That’s right. And, it’s important to ask questions before you begin any therapy.  

Here are some questions to ask your doctor when considering a trial:   

  • Why is this treatment a good option for me?
  • What is the phase of this trial?
  • How often will I need to come in for appointments?
  • How is the therapy administered?
  • What are the potential side effects?
  • Will participation require travel or extra tests?
  • And, what is the cost?   

Bianca: 

That’s great advice, Suzanne. Your care team can help walk you through the process. And some trials even provide support with transportation, lodging, or other logistics – never hesitate to ask. 

If you’re interested in potentially joining a clinical trial, you can start by:   

  • First, asking your healthcare team if there are trials available for your specific type of myeloma.   
  • Then, review the pros and cons with your doctor and care partner.   
  • Be sure to ask about logistics. This includes time commitment, any travel, and cost.  
  • And finally, ensure that you AND your care partner feel comfortable with the decision before moving forward. 

Suzanne: 

Thanks, Bianca – really good advice! Being part of a clinical trial made me feel like I was contributing to the myeloma community. But it’s a personal decision. The most important thing is to make a choice that’s right for you. 

To learn more about myeloma and clinical trial participation, visit powerfulpatients.org/myeloma. Thank you for joining us! 

Leveling the Playing Field for Multiple Myeloma Patients in Community Care Settings

A panel of experts explore ways to ensure multiple myeloma patients in community care settings receive equitable access to treatment and care.

The panel includes:

  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Pamela Price – Deputy Director, Balm in Gilead
  • Ola Banjo – Community Engagements & Partnerships Director, Multiple Myeloma Research Foundation
  • Christopher Peña – Educational Programs Director, Multiple Myeloma Research Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

CELMoDs Tomorrow

A panel of experts explore the potential of next-generation #myeloma treatments, focusing on Cereblon E3 ligase modulators (CELMoDs) and the critical need for equitable patient access.

The panel includes:

  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation
  • Pamela Price – Deputy Director, Balm in Gilead

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Immunomodulators (IMDs) Today

A panel of experts discuss the bedrock therapy in multiple myeloma immunomodulators (IMDs).

The panel includes:

  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Pamela Price – Deputy Director, Balm in Gilead
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Tailored Multiple Myeloma Care

A panel of experts discuss strategies for how to best support multiple myeloma patients and their families during treatment.

The panel includes:

  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Dana Dornsife – Founder, Lazarex Cancer Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Ola Banjo – Director, Community Engagements & Partnerships, Multiple Myeloma Research Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Pamela Price – Deputy Director, Balm in Gilead

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Breaking Barriers: Improving Multiple Myeloma Care Access

 

Aïcha Diallo, Vice President of Programs at the Patient Empowerment Network, explores the challenges multiple myeloma patients encounter when accessing care. She also shares effective strategies to help overcome these barriers.


Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Multiple Myeloma Community Barriers

A panel of experts discuss the barriers multiple myeloma patients face when receiving care in community-based settings.

The panel includes:

  • Jenny Ahlstrom – Founder and Chief Executive Officer, Healthtree Foundation
  • Diane Moran – Business Relationship Management, International Myeloma Foundation
  • Sally Werner, RN, BSN, MSHA – Chief Executive Officer, Cancer Support Community
  • Pamela Price – Deputy Director, Balm in Gilead
  • Ola Banjo – Director, Community Engagements & Partnerships, Multiple Myeloma Research Foundation
  • Aïcha Diallo, MPH, CHES – Vice President of Programs, Patient Empowerment Network
  • Christopher Peña – Director, Educational Programs, Multiple Myeloma Research Foundation
  • Dana Dornsife – Founder, Lazarex Cancer Foundation

Brought to you by the Multiple Myeloma Collective, Sponsored by Bristol Myers Squibb

Considering a Myeloma CAR T Cell Therapy Clinical Trial? Here’s What You Should Know

What should you know before joining a CAR T-cell therapy clinical trial? This animated video shares key advice to help guide discussions with your healthcare team and reviews factors to consider before enrolling in a trial.

Related Resources:

Myeloma CAR T-Cell Therapy | How Is Success Measured?

Myeloma CAR T-Cell Therapy | How Is Success Measured?

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

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

CAR T-Cell Therapy | Transforming Myeloma Patient Care

CAR T-Cell Therapy | Transforming Myeloma Patient Care 

Transcript:

CAR T-cell therapy has revolutionized care for people with myeloma in recent years. This treatment is an innovative form of immunotherapy that modifies the patient’s own T cells to target and destroy cancer cells. While there are FDA-approved CAR T-cell therapies for myeloma, ongoing clinical trials are helping to expand this therapy’s use.  

If you or a loved one is considering participating in a CAR T-cell therapy clinical trial, these questions may help guide your conversations with your doctor and support decision-making: 

  • Am I a candidate for any CAR T-cell therapy clinical trials? 
  • How do the potential benefits compare to my current treatment options? 
  • What side effects should I expect if I participate in the trial, and how will they be managed? 
  • What phase is the study, and how might it impact my care? 
  • What is the time commitment involved, and where will the trial take place? 

When deciding whether or not to participate in a CAR T-cell therapy clinical trial, it’s crucial to weigh the pros and cons with your healthcare team to determine if this approach aligns with your treatment goals. You should also discuss your options with a care partner, such as a friend or family member.  

Before enrolling in a trial, consider these factors: 

  • Ensure you have a reliable care partner to assist you during and after treatment. In most cases, a care partner is required for patients undergoing CAR T-cell therapy. 
  • Understand the costs involved. For some trials, the sponsor may cover a portion of the cost. Ask about financial resources that may help with participation, such as transportation or lodging assistance. 
  • Be sure to review the informed consent process carefully. This form will outline the trial’s purpose, potential risks, benefits, and your rights as a participant. 
  • And you should understand that participation in a clinical trial is voluntary. You have the right to leave the trial at any time, for any reason.  
  • It’s also a good idea to understand what to expect before, during, and after the clinical trial process. Taking steps to prepare for life outside of treatment can be highly beneficial, and can support positive mental and emotional heath. 

Taking part in a CAR T-cell therapy clinical trial offers a unique opportunity—it could provide access to advanced therapies and support critical cancer research. Reflect on how trial participation fits in with your personal treatment goals, and be sure to include your care partner and healthcare team as you make decisions.  

Remember, it’s important to stay proactive and informed. Whether you join a CAR T-cell therapy clinical trial or explore other treatment options, make choices that prioritize your well-being and support your journey forward. 

For more information about CAR T-cell therapy and clinical trial participation, visit the Patient Empowerment Network at PowerfulPatients.org. 

Expert Perspective | How Bispecific Antibody Therapy is Transforming Myeloma Care

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

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Care Partners | Tools for Self-Care and Managing Emotions

Care Partners | Tools for Self-Care and Managing Emotions

Transcript:

Katherine Banwell:

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

Tiffany Richards:

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

Katherine Banwell:

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

Tiffany Richards:

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

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

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

Katherine Banwell:

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

Tiffany Richards:

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

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

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

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

Care Partners | Tools for Self-Care and Managing Emotions

 Why is it essential for care partners to have self-compassion when caring for a loved one? Tiffany Richards, a myeloma nurse practitioner, helps care partners in understanding why they should practice self-care, recognizing the signs of burnout, and learning about support resources available to them.

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Transcript:

Katherine Banwell:

Being a care partner can be taxing mentally and physically, how do you encourage care partners to ensure that they’re taking care of themselves during a process?  

Tiffany Richards:

I think it’s really important for our care partners to take time for themselves because if you’re investing all of your energy into the patient, that’s going to deplete you.  

And when you’re depleted, you’re just being set up for you to get sick or for you to have a problem. And so, it’s important to take time, whether that’s meeting your friends for lunch or dinner or something, making arrangements for somebody else to come and stay with the patient. If you don’t feel comfortable leaving them alone, then engage the people around you. I think it’s important to create care teams, not just focusing just on one person that’s dedicated to providing care because if you do that, then you don’t have anybody else brought in that can provide respite. And we all need respite. We can’t always be caregiving 24 hours a day. If I had to caregive 24 hours a day, I’d be exhausted. And so, it’s important to have a care team.  

Look at the people around you, whether that’s friends or whether it’s some sort of religious activity, other family members, and creating a team so it doesn’t fall just on one person. I think you can have one person be like the main reference point to get to information, but then bringing everybody in so that you can get the care that you need for yourself. It’s really, really important. 

Katherine Banwell:

What are some signs of burnout and how are they managed? 

Tiffany Richards:

I would say it’s exhaustion, difficulty concentrating, just feeling depleted; where you feel like all of the energy that you have is being drained out of you.  

Those would be signs that I would be concerned about and say, “You need an intervention.” So, be on the lookout for that. I remember my mom was caring for my dad, and she was getting burnt out by it all. And so, she lost weight because she wasn’t able to eat because she was so stressed. And so, making sure that you’re taking care of yourself is so, so important. I just can’t even stress that enough. 

Katherine Banwell:

You mentioned some things that the care partner can do to take care of themselves, but what about handling emotions and anxiety? Do you have tips for them? 

Tiffany Richards:

So, I think in the world that we live in, and I tell a lot of my patients this, I think all of us could probably use some amount of therapy just to deal with life stressors. The world is a very stressful place to live in.  

And I think finding somebody that you can talk to is so important. Having a therapist allows you the opportunity to talk to somebody who has no judgement, who’s not going to give you their opinions of what you should do. I think that’s important because it offers somebody outside of the situation for you just to be able to download on. And that is so therapeutic; I can’t recommend that more. I really recommend counseling for people just because we all need that person that’s not in the middle of the situation that you can just download on and say, “This is what I’m feeling.” They’re not going to be judging you and saying like “That’s right,” or “That’s the wrong way to feel,” or giving their advice on things.  

And people are well-meaning by giving advice and giving their perceptions of things, but it might not always be helpful to you as a caregiver. And so, having that other person there can be really beneficial. 

Katherine Banwell:

Are there support resources available for care partners? 

Tiffany Richards:

So, there are. I know International Myeloma Foundation has some caregiving resources. I think maybe the Leukemia Lymphoma Society has some.  

There’s probably not enough as there needs to be, but there is some more information coming out. I think concerns about the caregiver and care partners is becoming more frontline as patients with myeloma in particular are living longer, and all patients with cancer are living longer. But they’re living longer on therapy. It can be hard for care partners because it’s not just this six-month period of time. 

It’s like this indefinite period. And so, there’s more things coming out, but I would definitely say probably the best resource is finding somebody that you can talk to.  

Katherine Banwell:

Is there anything you’d like to add about caring for someone who is being treated with bispecific antibody therapy? 

Tiffany Richards:

Yeah. I think knowing as much as you can about how the drugs work is really important, and then also what you can do to help manage and mitigate some of the side effects is important. And then, making sure that you understand the schedule, and as well as the schedule for the supportive medications is also really important. When we transition patients from an academic center to community, we usually have a touchpoint with that community provider. We provide instructions. 

So, I think it would good to ask the academic center for a copy of the letter for the communication that’s being given, so that everybody is on that same page, can be really, really helpful. 

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

 When a loved one is undergoing bispecific antibody therapy, how can a care partner prepare? Tiffany Richards, a myeloma nurse practitioner, provides key advice for care partners, including important questions that they should ask the healthcare team.

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

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Care Partners | Tools for Self-Care and Managing Emotions

Care Partners | Tools for Self-Care and Managing Emotions

Transcript:

Katherine Banwell:

When meeting with a patient and their care partner for the first time, what three key pieces of advice would you share with them? 

Tiffany Richards:

So, one is I would make sure that you understand the regimen; so, what days you’re going to be dosed, what day you’re going to go in the hospital, approximately what day you might be discharged, knowing that that discharge date can vary depending on how you’re doing with tolerating the therapy. I would also make sure that you understand what prophylactic medications you need to be on.  

So, oftentimes we’re putting you on an antiviral. We’re putting you on something to prevent a certain kind of pneumonia called PJP. And then, we also may put you on something to help you boost up your antibodies. So, oftentimes patients with myeloma, they’re low on their normal IgG antibodies just because we’re depleting all of these plasma cells in the bone marrow and so you’re not producing enough of these other antibodies. And so, we may have to put you on IVIG once a month.  

And so, making sure that you understand what it is that you all need to be taking, and then also making sure that you’re asking the questions as far as “How often do I have to come back?” 

“Do I have to get it all at an academic center or is it the opportunity to get it done locally?” I think that’s really important question because some local community providers, they’re willing to do the subsequent cycles of the bispecific. They may just not want to do that first cycle. And so, asking the question, “Can I get my subsequent cycles locally?” because to travel long distances, particularly depending on where you live geographically, it may be difficult to go back and forth to an academic center. 

Katherine Banwell:

Is there anything you’d like to add about caring for someone who is being treated with bispecific antibody therapy? 

Tiffany Richards:

Yeah. I think knowing as much as you can about how the drugs work is really important, and then also what you can do to help manage and mitigate some of the side effects is important. And then, making sure that you understand the schedule, and as well as the schedule for the supportive medications is also really important. When we transition patients from an academic center to community, we usually have a touchpoint with that community provider. We provide instructions.  

So, I think it would good to ask the academic center for a copy of the letter for the communication that’s being given, so that everybody is on that same page, can be really, really helpful. 

Bispecific Antibody Therapy Resource Guide

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

Is CAR T-cell therapy a cure for myeloma? Dr. Rahul Banerjee, a myeloma specialist and researcher, discusses the reasons that CAR T-cell therapy may lose effectiveness and the potential impact of undergoing another round CAR T-cell therapy.

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

Download Resource Guide

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Myeloma CAR T-Cell Therapy | How Is Success Measured?

Myeloma CAR T-Cell Therapy | How Is Success Measured?

Evolve | What You Should Know About Advances in CAR T-Cell Therapy for Myeloma

Evolve | What You Should Know About Advances in CAR T-Cell Therapy for Myeloma 

Understanding Myeloma Therapy Targets BCMA and GPRC5D

Understanding Myeloma Therapy Targets BCMA and GPRC5D 

Transcript:

Katherine Banwell:

This one is from Jennifer. Why do CAR T-cell transplants not last longer? Is it possible to do a second transplant if the first CAR T transplant stops working? 

Dr. Rahul Banerjee:

It’s a great question. So, it’s an excellent question. So, the only thing I would say semantically is, right, in my head, CAR T cells are not transplants per se, because I’m not changing the bone marrow. So, I would transplant a stem cell transplantation, separate from CAR T.  

Why do CAR T cells stop working? So, the short answer is we can speculate. We don’t know for sure for any individual patient. Three different buckets are involved. Three different things can happen. One, the T cells can stop working or disappear from circulation. So, that’s possible. CAR T cells don’t last forever. That’s actually okay, right? People often wonder like, “Man, I wish the CAR  
T cells could last forever.” I don’t know that I’d want that because as I alluded to, for as long as the CAR T cells are there, patients are immunocompromised, and so that can certainly interfere with the quality of life.  

So, it’s not necessarily true that the CAR T cells need to be there forever, but if they’re not there, or if they’re exhausted, which is actually a true scientific word for them not being able to activate and kill that cell when they recognized a protein, the BCMA, that’s one problem.  

The second problem is the myeloma cells can mutate. I alluded to this briefly earlier, where the cells can learn to shut off the protein, BCMA, or they can mutate the protein in just a way that the  
CAR T is no longer able to bind.  

And the third is something called the tumor microenvironment. And this is a little bit more complicated, kind of a grab bag of different things here. The idea is that myeloma cells have a lot of tricks, and they can use all of the cells around them to make it hard for the CAR T cells to get in, to get into the bone marrow and kill them all. And the T cells can be shut off before they even get there.  

So, it’s one of those three things in general. Which one is it for an individual patient? Hard to say. And so hopefully in the future, we’ll have better diagnostic tests to be able to identify who is a patient where another BCMA targeted therapy would work well versus, “Oh no, these myeloma cells are no longer expressing BCMA, let’s move on to a different target like GPRC5D.” We’re not there yet. We’ll get there hopefully in a couple of years, is my goal.  

Then, you know, Jennifer, that’s a good question. Well, can we do a second CAR T? And that’s very practical. What I would say is if the first CAR T therapy did what we expected it to do, if it lasted for as many years as I would expect for Abecma, that’s typically 12 to 18 months. For Carvykti, that’s typically over 24 months.  

If it worked and then it stopped working, and then probably the T cells are long gone, it’s reasonable to try CAR T therapy again. In general, I would recommend, I strongly recommend a different CAR T-cell therapy, even if it’s targeting the same class, like BCMA, it’s going from ide-cel (Abecma) to cilta-cel (Carvykti) or vice versa. 

The risk with giving the same CAR T-cell product again is that even though the T cells are a patient’s own T cells, the protein is slightly foreign. Abecma was derived from decades of mouse research. Carvykti was made from decades of llama research, believe it or not. Again, there’s no mouse or llama involved with the actual products nowadays, but in making the sequence years ago that came to them, they are foreign. There are foreign sequences on them, and so everyone’s host immune system eventually recognizes these cells as foreign.  

And so if you were to give the exact same product again, immediately the body would reject it the second time around, because it recognizes them and has learned to recognize it as foreign. But changing to a different CAR T cell is very reasonable. 

And again, for these newer GPRC5D targeted CAR T cells that, again, don’t target BCMA the way that Abecma, ide-cel or cilta-cel, Carvykti do, but target a different protein entirely, for those patients generally there’s no restriction on whether they’d received a prior CAR T cells. Ideally, it should be at least several months away, at least like a year or so, but if that’s happened and they stopped working, very reasonable. In fact, some of the trials actually require that patients going on to the study of a GPRC5D product have had a prior BCMA therapy of some sort before, and so they’re kind of built into the architecture of things. So, I think it’s very reasonable.  

Obviously, there are some unknown unknowns, right? What do you do if the T cells are being manipulated twice, so to speak. Patients ask me about that. I will say just to put that fear to rest, in general, by the time that someone’s had myeloma come back after the first CAR T cells, I alluded to this, the CAR T cells are long gone. So, there’s nothing left.  

But again, every case is different, and future research will help us kind of figure out how best to do this. 

Myeloma Research | Updates in CAR T-Cell Therapy

 What is the latest in myeloma CAR T-cell therapy research? Dr. Rahul Banerjee, a myeloma specialist and researcher, discusses advances in the field including progress in improving the CAR T manufacturing process and the role of clinical trial participation in developing new myeloma treatments.

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

Download Resource Guide

Related Resources:

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

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

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

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

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

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

Transcript:

Katherine Banwell:

Can you share any updates in CAR T-cell therapy research? 

Dr. Rahul Banerjee:

Sure. So, several. I would say the first was how do we make that vein-to-vein time shorter? So, the vein-to-vein is, again, from the moment that the T cells are collected to when they’re put back into the patient.  

And so a lot of research is how do we make that better? We have rapid manufacturing protocols that, again, where the T cells are taken out and manufactured within a couple of days and brought back into the patient. They’re still testing for safety and sterility and everything that needs to be done, so it’s not overnight, but still, one or two weeks’ worth of vein-to-vein time is way better than one to two months. 

The allogeneic CAR T cells that are coming from a healthy donor, those are fascinating, right? Because if the cells are pre-manufactured, there’s no risk of them not manufacturing or manufacturing in an odd manner, what we call auto-specification. They’re ready from a healthy donor, ready to go. 

And one of the studies that was presented last month at our International Myeloma Society meeting in Brazil, the time, the median time from when the patient went on the study to when they started that lympho-depleting pre-CAR T therapy was one day, and that means they got CAR T therapy within one week of going on the study. That’s phenomenal. And so I think that research is ongoing.  

There are some side effects about allogeneic, healthy donor CAR T cells in terms of making sure the T cells stick around and don’t cause other issues. Sorry, for another day. I think that’s one area of research.  

 I think the other big area of research is how do we make CAR T cells work for longer for more people? There are easy ways, and there are controversial ways to do that. So, I think the easy way is can we use MRD negativity or other tests to identify who is at very low risk of relapse and monitoring them appropriately.  

There are patients where, in the future, we may talk about doing some form of post-CAR T maintenance therapy.  

Again, the bar for that should be set pretty high, and it is set pretty high because as I mentioned earlier, many patients prefer CAR T therapy, not just because of the deeper remissions and longer remissions, but because it truly is time away from treatment. But they’re still coming in for the IVIg and the blood work and seeing a doctor, et cetera, but they’re not getting daily treatment with lenalidomide, which is Revlimid, or pomalidomide, or Pomalyst, or something like that. And that’s wonderful. 

However, there may be some patients where some form of strategy will use one of those medications or experimental medications. There’s a newer class of the lenalidomide, Revlimid, pomalidomide, Pomalyst called CELMoDs.  

They’re not approved yet, but drugs like iberdomide or mezigdomide that work better, and not just against the myeloma. They actually make T cells stronger, believe it or not. 

And so in the future, there may be scenarios where we recommend for certain patients that, hey, in your particular case, after CAR T therapy, to keep the myeloma away, I’d recommend using this form of maintenance, a pill or something like that, just low dose to, again, keep the myeloma at bay and keep the T cells, in this case, the CAR T cells strong. So, I think those are all areas of exciting research.  

And then the last thing I would say is, we have several novel CAR T therapies that are being studied that may work better and safer than the existing products. Some of them, which are in early phase studies, actually target two proteins at once. The idea, going back to one of the earlier topics I mentioned, is that if the CAR T cells see that protein BCMA, they immediately destroy the cell that’s holding that. But what if the cell learns to turn off BCMA? All of a sudden, it’s invisible to the CAR T cells, and you’re right back to starting square one again. 

And so the idea is that there are CAR T cells that are being developed that target two proteins at once, kind of what’s called origating, where if it sees this or this, it’s immediately able to attach and bind that cell.  

The idea being that it’s easy for a myeloma cell – not easy. It’s possible for a myeloma cell, just by dumb luck, bad luck for the patient, to mutate in a way that shuts off that one protein. For it to simultaneously be able to do that for two separate proteins at once, the odds are much lower.  

And so the idea with dual targeting is you may be able to knock out more cells more durably, or even knock out the myeloma precursor cells that aren’t quite myeloma cells, but are there, what we call stem cells under the hood that are still malignant? So, a lot of those areas, I think, are really fascinating. Obviously, we need a lot more research in those particular areas before they’re ready for prime time.  

Katherine Banwell:

Patient participation is essential in advancing myeloma research. How do clinical trials impact care? 

Dr. Rahul Banerjee:

Absolutely. So, phenomenally and importantly, I think it’s a short answer. It’s worth noting that clinical trials come in all shapes and sizes. People often assume that clinical trial means, by default, a Phase I study, first time in human being, a quote-unquote “guinea pig.” That’s true for a minority of studies, and that’s very important for us to understand how best to make the drug work better. I would say the vast majority of trials that I put my patients on are not like that. They’re often bigger Phase II or Phase III studies. 

As an example, you know, both ide-cel (Abecma) and cilta-cel (Carvykti), those were already approved in later lines, but to get them approved in earlier lines, we had to run a study of using them earlier versus not using them earlier. So, that’s a good example where the drug is FDA-approved, it’s just the sequencing of it that’s new.  

There are trials of supportive care. We’ll be opening a study, I alluded to this, the side effects of GPRC5D targeted therapies with taquetamab (Talvey).  

We’ll be opening a study that randomizes patients to one of four different supportive care strategies to figure out which one actually works to make the taste issues better. Because we don’t know until we try, right? If we don’t do a rigorous study, and we just go by, “Oh, I had one patient once where this worked, and one patient once where this worked,” that’s not a scientific way of answering questions, and we’re not really able to advance the field to help all patients.  

So, that’s where I think clinical trials come in handy. That, and I alluded to all these newer investigational CAR T therapies that might actually work better and be safer than the existing one. They’re all coming through investigational trials.  

So, trials is kind of how we get these drugs, one, these newer ones to market, but also how we learn to make them better. And we have trials, all sorts of trials, looking at all sorts of, again, not just new drugs, but also where to put the drugs, right? Where to sequence the CAR T therapies, or what supportive care strategies do we use? And the trials are kind of the linchpin of making the field work better. Again, not just for some patients who happen to do well, but for all patients. The only reason we’ve found out what works for all patients is by doing clinical trials.