Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

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Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses the importance of seeking third-party support for managing mental health issues and provides guidance on addressing sexual health concerns during myeloma treatment. 

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

Related Resources:

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

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

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

 Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine Banwell:

If a patient or a caregiver is having trouble managing the emotional side of myeloma, whether that be anxiety, depression, or other mental health issues, how do you encourage them to cope with those feelings?  

Daniel Verina:

I think it’s always good – multiple times I say they always should talk to a third party. So, either reach out to our social worker team who are phenomenal at helping support patients, but even reaching out to psychiatrists or psychologists and getting another perspective. It is good to have a friend. It’s good to have family to discuss and talk to, but sometimes, I think, sometimes having somebody so close may not have the best perspective.  

But so, getting a third opinion or a clear lens in discussion to help guide them is a great way to do it. I also advise caregivers because of the burden of the calendars and the different tasks they have to do, I tell – even with my patients, I tell them to journal. Journal their day. Be able to get out there their voice from their mind into a piece of paper to help clear the mind and give clarity to move on for their next steps. It is a challenge.  

Katherine Banwell:

And you’re saying that that psychological support for the caregiver is just as important.  

Daniel Verina:

Absolutely. It’s the patient who also has cancer so does the caregiver have cancer too. So, you’re treating two people, not just the person who you’re giving the therapy to.  

Katherine Banwell:

We were talking about supporting the care partner and the patient in terms of mental and physical well-being. There’s a sexual aspect to that as well, right? 

Daniel Verina:

Absolutely. I think sexuality or sexual health is extremely important. I think the fear, what I have seen in my personal experiences, and it depends on each. And each person, part of this chess game, has a different view. So, the patient is sometimes nervous because they don’t want to hurt their caregiver because they’re on chemotherapy. And then, the caregiver might feel that they’re not prepared because they don’t want to cause any injuries because they’re on chemotherapy, right? What are their counts? May I hurt them? Will I give them an infection? Things like those kinds of things.  

And sometimes in both directions that the patient may lose the libido, the desire, and it has nothing to do with the caregiver and their attraction, right? It’s a physical change that the therapies that we give may diminish some of this physicality. So, explaining that to the patient and their caregiver, but also giving them that support. Having them be able to talk to a social worker, having them being able to talk to a therapist and say, “This is what I’m experiencing. How do I cope with this?”   

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

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Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses strategies to empower care partners and myeloma patients, emphasizing the long-term nature of the journey and providing guidelines for returning to activity post-treatment.

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

Related Resources:

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

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

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

 The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Katherine Banwell:

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

Daniel Verina:

I think with the cancer card or even myeloma, and I always say this, it’s truly a fact, I said it’s a journey. It’s a journey.  We are together. It’s the tortoise that wins the race, not the hare when it comes to myeloma. It’s very different because many patients may have an experience that a friend had a different type of cancer and their treatment ended in a year or two. So, and myeloma currently, it is a continuous type of treatment for many years.  

So, it’s getting them on board and understanding that there’s going to be wax and wanes in time. And we’re here for the long run together. I’ll ask questions continuously because every question is new to them. I might’ve heard the question 6 million times, but it’s their first time experiencing it and hearing it.  

Katherine Banwell:

Yeah. Well, and following treatment, how do you counsel patients who are returning to activity and exercise? Are there any guidelines they should follow?  

Daniel Verina:

Absolutely. I think it depends on how they feel, their physicality, depending on their age because myeloma really has now become a broad spectrum in age. Yes, it’s a more mature adult or older adult disease, but we’re seeing it happen in our patients in their 40s and their 50s. So, they want to return to activities. They say whatever they can tolerate. Making sure that they’re not doing heavy lifting because myeloma can affect the bone strength or cause fractures.

So, no power lifting or bungee jumping, I try to advise them not to do. But go back to what they enjoy the most. Bringing them back to close to what their normal living is, I think is one of the best ways that patients can tolerate it.  

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

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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.

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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!  

[ACT]IVATED CAR T-Cell Therapy Resource Guide II

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

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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.

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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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Enhancing Access and [ACT]IVATION in CAR T-cell Therapy

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Patient Empowerment Network (PEN) has a strong commitment to providing educational content and to empowering patients and care partners in CAR T information. CAR T-cell therapy has unique eligibility and care requirements, and it’s essential for patients and families to inform themselves about the full CAR T-cell therapy process. With these objectives in mind, PEN initiated the [ACT]IVATED CAR T program, which aims to inform, empower, and engage patients to stay well-informed about CAR T therapy.

 CAR T-cell therapy can be a powerful treatment option for many myeloma patients, but there are barriers to access and treatment refinements that need to be addressed for some patient populations. One key disparity is the fact that African American patients make up about 20 percent of the U.S. myeloma population but comprise less than 5 percent of myeloma clinical trial participation. PEN remains steadfast in helping to decrease disparities by offering resources on CAR T-cell therapy to aid in advocacy and awareness efforts.

Cancer survivor Lisa Hatfield interviewed experts Dr. Sikander Ailawadhi from the Mayo Clinic and Dr. Krina Patel from The University of Texas MD Anderson Cancer Center as part of [ACT]IVATED CAR T.

Dr. Krina Patel and Lisa Hatfield

CAR T-Cell Therapy Eligibility Requirements

 Though some myeloma patients may think eligibility to CAR T is more difficult than stem cell transplant, Dr. Krina Patel stated this is not the case. Dr. Patel also shared the success that she’s seen in patients over time. “…I have so many patients that are over a year, two years out without any therapy now. And they’re doing fantastically.

And, and again, my patients with comorbidities and my older patients, they’re the ones who benefit when we’re not on any therapy because continuous therapy ends up causing more toxicity for them. And so I think it’s really, really important to speak up to your doctor and just say, this is something I’d really be interested in.”

 Dr. Patel continued to explain a key difference in inpatient versus outpatient CAR T-cell therapy eligibility requirements. Though patients who stay in the hospital for their CAR T-cell therapy don’t need a care partner with them, this isn’t the case for outpatients since a care partner is needed to monitor the patient’s symptoms. “…if you’re going to do it with outpatient, then yes, because again, when things go wrong, they can go wrong pretty fast, especially with the ICANS, neurotoxicity. So ICANS, most patients just have a little bit of trouble writing or they might have a little bit of trouble with confusion, but if that happens, you might not remember or know who to call if you’re not feeling well, right.”

Dr. Sikander Ailawadhi

CAR T-Cell Therapy Disparities

 Some CAR T-cell therapy patient groups and patient types have shown different responses to therapy. One study concluded that African American patients were more likely to experience side effects from CAR T. Dr. Sikander Ailawadhi discussed research efforts that are working toward improvements. “What we are trying to do to mitigate some of these side effects, there are now studies which are giving either some low doses of steroids as a prophylaxis before, right around the time of CAR T, so that side effects may not happen. Studies that are giving a low dose or even standard dose of what’s called tocilizumab (Actemra), toci, or tocilizumab.” 

African American patients in general have inflammatory disorders at a higher rate, and inflammation can impact CAR T-cell therapy side effects. Dr. Ailawadhi shares how patient monitoring is increased for African American patients at the Mayo Clinic. “…CRS, which is an immune system mediated inflammatory response, I can imagine that some of it might be higher in African Americans.

So, in our clinics, what we are doing is when we are monitoring the patients, every patient is getting monitored the same way, but when it’s an African American patient, we are putting a little bit more focus on those inflammatory markers that can sometimes start showing up even before the CRS happens.”

Side effect prevention also helps with reducing other barriers to CAR T as a treatment option. Dr. Ailawadhi shared, “…by preventing the side effects, we are being able to give the treatment in a way that the patients may have lesser side effects and can get it done closer to home or at home sometimes, and their time to stay in the hospital is lesser. You can imagine that some of these barriers are being further mitigated.”

Solutions to Overcome CAR T Disparity Gaps

Some myeloma patient groups may face barriers to or disparities in CAR T-cell therapy, but some efforts to solutions are underway. Dr. Ailawadhi discussed some roadblocks to CAR T care for Black and Latinx patients. “A lot of times they are sociodemographic, patients need to take time away from work. They have to have a caregiver, they have to have appropriate insurance approvals for certain things. They have to be able to go to a center that may be close to them.

These centers are hopefully going to be able to bring some other resources like social workers, navigators, et cetera, to help that patient get onto the trial. And then there is sometimes lack of awareness of CAR T, lack of awareness of clinical trials per se, clinical, and there are fears, anxiety, scares around getting on clinical research.”

Myeloma patients who live in rural areas may now have options to access CAR T-cell therapy through the use of telemedicine and remote monitoring. Dr. Ailawadhi painted a detailed picture of how his care of an international patient has been handled from her introduction through the care she’s receiving today. “She had some family members and some means that she could actually come here, so she came to the U.S., did a consult, we did a visit, we took over her treatment, she got CAR T, but then a month or so after that she was doing fine and she wanted to go back home.

She was here with some family members living in a foreign country, not speaking the language, et cetera. Her children were very supportive and spoke English. So, she went back and I still continue to do video visits with her just to see how she’s doing, monitor her disease, she sends me records through the electronic medical system portal, I can see her labs, and I think it gives me peace of mind that I’m keeping an eye on it, it gives her peace of mind.”

Additional barriers to CAR T access include language and cultural barriers. Dr. Ailawadhi discussed how  Spanish language versions of CAR T educational materials are being introduced. And he shared the idea that patients are often more receptive to healthcare providers who look and speak like them. “…we have African American, Hispanic, Asian clinical research coordinators in our teams, and we have noticed a clear difference in the patient’s understanding their ability to ask questions, their willingness to ask questions and clear out their barriers if it is given to them in a culturally sensitive, culturally appropriate manner.”

[ACT]IVATED CAR T Program Resources

 The [ACT]IVATED CAR T program series takes a three-part approach to inform, empower, and engage myeloma patients and patient groups who experience health disparities. The series includes the following resources:

Though there are some special eligibility requirements for CAR T-cell therapy and some care and treatment disparities exist, CAR T can be a powerful treatment option for many patients and continues to increase with equity and access improvement efforts. We hope you can take advantage of these valuable resources to assist in building knowledge about CAR T-cell therapy for yourself or for your loved one and to help expand awareness around CAR T.

[ACT]IVATED CAR T-Cell Therapy Resource Guide II en español

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[ACT]IVATED Myeloma Resource Guide for Veterans and First Responders

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[ACT]IVATED CAR T-Cell Therapy Toolkit Checklist

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[ACT]IVATED CAR T-Cell Therapy North American Specialist Treatment Centers

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[ACT]IVATED CAR T-Cell Therapy Patient Plan

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Thank you for taking this assessment. By answering the questions below, a custom patient plan featuring a collection of vetted resources will be emailed to you within 5 minutes. If you don’t see it, please be sure to check your spam. Stay [ACT]IVATED. 
 

 

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What Are Myeloma Risk Factors for Veterans and First Responders?

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What Are Myeloma Risk Factors for Veterans and First Responders? from Patient Empowerment Network on Vimeo.

Veterans and first responders may come into contact with myeloma risk factors, but what are they? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses environmental risk factors for 9/11 first responders and veterans, average age of onset for different veteran racial groups, and proactive patient advice.

[ACT]IVATION TIP

“…if you notice that anything is off, you’re not feeling well, or the lab, something is wrong with your labs, make sure to mention that to your physicians, they can first diagnose the correct thing, if something is going on. And two, if you actually have a diagnosis of cancer, I think talking to your teams that there are probably resources out there to help with a couple of things, I think one, even financial resources.”

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Related Resources

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care 

 Roadblocks for Black and Latinx Patients From CAR T Trial Access

Roadblocks for Black and Latinx Patients From CAR T Trial Access 

Transcript:

Lisa Hatfield:

Dr. Patel, a lot of patients wonder what might have caused my myeloma, and there are some environmental factors that are known to have the association with myeloma, like Agent Orange exposure, and now we’re seeing an increased instance of myeloma and other blood cancers in the 9/11 first responders. For patients who might have concerns about this, do you have any suggestions or thoughts on that?

Dr. Krina Patel:

Yeah, I’ve actually quite a few patients that come up to me that were in previous wars or veterans, and the first thing I talk about is the 9/11 first responders. So people ask me if this they’re born with myeloma, that’s the number one question, and I say, you know, likely not, most people do not have genes that they were given by their parents, that causes myeloma.

All of us have different susceptibility to cancer based on how our immune system repairs itself, how our plasma cells repair themselves, the micro-environment, but it’s also our exposures, and we know that there’s certain exposures like Agent Orange, as well as those first responders that went in here in terms of epidemiology, in terms of the number of patients that ended up with myeloma at a younger age, a much younger age. They’re in their 50s, for the most part, that tells us that this was not something that those folks are going to get. This really was based on that exposure, and that’s the hard part of saying that something causes something.

I think we know with 9/11, the numbers were so high that this was a…listen, this is something wrong, that whatever they were exposed to during that process led to their plasma cells becoming myeloma at a much younger age, and it seems that a lot of them had more aggressive disease than the indolent slow-growing myeloma.

We see that a lot of patients get. The other big question I get is, How can we say that something caused this, and then again, it comes back to how many people are exposed and then how many people actually got that disease, and that’s why it becomes so hard. But I know a lot of my patients think about Roundup or different petrochemicals and things like that that they’ve been exposed to, and I know that the government and folks are looking into it because a lot of my patients are getting letters from us and things like that just to say, “Listen, I was exposed to this, could this have caused my myeloma?”

And again, the majority of patients are not exposed to things at that level that really tell us that that’s what caused their myeloma, but I do think that if you are exposed to something like Agent Orange or major petrochemical spill or something that is worthwhile noting at least, even though I most likely won’t be able to tell you it definitely caused the myeloma. We do know that there are environmental exposures that are more likely to lead to cancer, you know, we have these hot spots in the U.S. where especially those petrochemical companies are, where there’s a much higher level of just cancer diagnosis, not just myeloma up to cancer in general, compared to other areas where we don’t have those industrial companies existing.

Lisa Hatfield:

Do you happen to have any tips for patients who maybe were a part of 9/11 event or even veterans or first responders of any type, any tips for them in general?

Dr. Krina Patel:

Yeah, I think that the activations have here is that if you notice that anything is off, you’re not feeling well, or the lab, something is wrong with your labs, make sure to mention that to your physicians, they can first diagnose the correct thing, if something is going on. And two, if you actually have a diagnosis of cancer, I think talking to your teams that there are probably resources out there to help with a couple of things, I think one, even financial resources.

When stuff like this happens, usually there are some financial resources that pop up, and two, the mental aspect of this. You got this while you’re doing something you’re supposed to be doing and helping others, and really finding patient groups which are out there as well, so that you get the resources for just the ability to talk to someone about what happened and being able to go through that process as well.

Lisa Hatfield:

Dr. Patel, are there any notable trends or patterns of the presentation and progression of myeloma and other blood cancers in veterans and first responders that differ from civilians?

Dr. Krina Patel:

Yeah, that’s a great question. I honestly don’t know if there’s been anything published that shows a difference, I tend to see my veterans are a little bit younger in general, average age for myeloma, 70 for Caucasian patients, it’s 65 for Hispanic patients and 66 for African American patients, right? So a lot of my veteran patients have been in their 50s, just a little bit younger than what I’ve seen with most other patients, and then in terms of patterns, not necessarily.

We think, oh, is it more aggressive? Is it not. I do have patients with aggressive disease, but I have patients that come in with MGUS or smoldering disease that eventually turns into myeloma isn’t necessarily high risk or aggressive, but again, I don’t know any data that’s out there that’s published, I think that would be worthwhile. But I will say my patients tend to be on the younger age.

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CAR T-Cell Therapy Patient Eligibility | What Patients Should Know

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CAR T-Cell Therapy Patient Eligibility | What Patients Should Know from Patient Empowerment Network on Vimeo.

What should CAR T-cell therapy patients know about patient eligibility? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses transplant eligibility factors, why the factors are examined, and proactive advice for patients.

[ACT[IVATION TIP

“…tell your doctor, “I’m interested in CAR T. I want to go talk to a CAR T center.” And that’s where they can tell you if something is possible or not.”

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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:

Lisa Hatfield:

Dr. Patel, what challenges exist in navigating the complexities of patient eligibility criteria for CAR T therapy, particularly in the context of comorbidities and prior treatments and how can these challenges be navigated more effectively?

Dr. Krina Patel:

Yeah, I think it’s, people compare it to stem cell transplant all the time, and that’s my biggest activation tip. Transplant eligibility is not the same as CAR T eligibility. CAR T eligibility is much easier. So the absolute contraindication I would say for CAR T, is probably my patients with dementia, right? Because some of the chemo that we give prior to the CAR T can worsen that. And things like ICANS, this neurotoxicity can worsen some of those symptoms and we don’t want that.

That’s where I would use a bispecific instead where we’ve seen some great responses, but everybody else, again, even if you’re on dialysis and you have kidney failure, we can change the dosing of that chemo and patients do really well with CAR T. We work with the nephrologist, to make sure we don’t cause volume overload or anything else that they’re doing dialysis on time. We’re changing things up, etcetera. Patients with cardiomyopathy, so heart failure, again, we don’t want to go in when you have active heart failure, but just because you have a history of heart failure, we can do things to make sure that you don’t get, again, volume overload or, too much pressure on your heart.

Even patients with history of strokes, in the clinical trials that wasn’t allowed, but in the real world, again, as long as you’re not needing active therapy for your stroke, meaning, blood thinners, things like that yet anymore, then we can actually still potentially get you through CAR T. We have patients who aren’t able to speak.

They have expressive aphasia from history of stroke, but we actually have charts where we can figure out what their ICE scores are for ICANS. And we can make sure we, that they’re not having neurotoxicity. So we have other means by making sure that things are going well during that CAR T therapy that I think it’s really up to them. If they’re interested in it, my activation tip here is tell your doctor, “I’m interested in CAR T. I want to go talk to a CAR T center.” And that’s where they can tell you if something is possible or not. And I will say for the most part, most of my patients can get through CAR T. Again, we’ll talk about the different products. We’ll talk about how we would do it, how we would change it potentially.

But again, I have so many patients that are over a year, two years out without any therapy now. And they’re doing fantastically. And, and again, my patients with comorbidities and my older patients, they’re the ones who benefit when we’re not on any therapy because continuous therapy ends up causing more toxicity for them. And so I think it’s really, really important to speak up to your doctor and just say, this is something I’d really be interested in. And, any one of our centers would be happy to explain what we would do differently as well as, which product is the best one for you based on that risk comorbidity and the risk-benefit ratio.

Lisa Hatfield:

That again is great information. I’m glad you addressed the kidney dysfunction issue because we have several people in our support group who worry that they won’t be eligible for CAR T therapy because they have kidney dysfunction. So they’re all seeing specialists, which is the way to go for patients, to always see a specialist. So thank you so much, Dr. Patel.

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What CAR T Research Is Ongoing to Improve Treatment Response?

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What CAR T Research Is Ongoing to Improve Treatment Response? from Patient Empowerment Network on Vimeo.

 How can CAR T treatment response be improved with research? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses the CARTITUDE, KARMMA-9, and LEGEND studies and proactive patient advice about bispecific therapy and CAR T.

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“…before you start bispecific therapy, talk to your doctor about CAR T. And the reason I say that is that when you get a bispecific therapy, and currently that is not a fixed duration therapy, it is a continuous therapy. So patients are on it until they relapse. And the problem is that once you relapse on that T-cell therapy, your risk of losing BCMA, losing the antigen is much higher. There are mutations that we’re seeing that most patients get.”

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Transcript:

Lisa Hatfield:

So, Dr. Patel, given the risk of relapse following initial CAR T therapy, what approaches are being investigated to enhance the persistence and durability of CAR T-cell responses in patients? I know there are a lot of theories out there saying things like antigen loss might be an issue, the loss of the target BCMA, T-cell exhaustion, the environment of the bone marrow, what of those theories are being investigated or looked at?

Dr. Krina Patel:

Yeah, I think without causing too many issues with why we think CAR T is so great, where it’s a one-and-done, right? That gives people this wonderful time off. In the relapsed/refractory setting, I think our goal is can we use CAR T to cure, right? That is the ultimate question. And, again, with cilta-cel (ciltacabtagene autoleucel) [Carvykti], with the original data from the LEGEND study, which was the original study in China, those patients had a little bit less therapy than CARTITUDE. However, there are about 15 percent of patients that are six years out from their CAR T still in remission, right?

And so that gives us a little bit of hope that maybe we’ll have a small tail and a small number of patients that are cured from our current CAR T approaches. But the question is, how do we now increase that tail and make it more like lymphoma? And then hopefully, 90, 100 percent of patients eventually, how can we, how can you get everyone cured? And so I think it comes down to myeloma is not the same for everybody, right? So you have our high-risk patients versus our standard-risk patients. And I think the strategies are going to be different for those two patient populations.

They already are in the way we treat patients with even induction therapy and maintenance and consolidation. We tend to be much more aggressive with folks who have high-risk disease versus those who don’t. And so, I think the biggest studies right now that are looking at this are really the combination studies. And so looking at CAR T followed by some type of maintenance, but fixed duration maintenance. So CARTITUDE 5 and 6 and KarMMa-9, these are all the studies of the BCMA CAR Ts in frontline. All of them will have maintenance afterwards, but it seems to be that they’re going to be two years of LEN maintenance and that’s it, nothing after that.

So LEN, lenalidomide (Revlimid), we know that it activates T cells. It activates other immune cells like NK cells in the body, even B cells. And so when you get cytokine release syndrome from the CAR T, you’re already making more of these immune cells and activating them. And now you’re going to have lenalidomide in there to kind of keep that going, right? And so that could help with this, not persistence of the CAR T itself, but persistence of better immune cells that can actually keep your myeloma down, right? So I think that’s one way.

The other way is some of the new therapies like CELMoDs. So these are sort of the newer version of lenalidomide and pomalidomide. They tend to have more immune effect than the other two drugs. So there’s studies looking at other CAR Ts, so a different target, right? So we talked about antigen loss. If you’ve lost BCMA, then what do we do?

Well, there’s other targets like GPRC5D. So a couple of the studies are looking at GPRC5D-CAR-T plus mezigdomide, which is one of the CELMoDs, or another arm is iberdomide, which is the other CELMoD, and looking at different doses without causing too many side effects, but still helping the T cell keep going, all kinds of things going on there. So those are some interesting studies.

And one of the cohorts, it’s actually using a GPRC5D-CAR-T with a BCMA bispecific after, that’s combinations. So now you’re targeting two different antigens and you’re using T cells in two different ways, right? And again, it’s fixed duration so that it’s not forever, but after a certain period, hopefully, we fix the bone marrow and we’ve killed enough myeloma that hopefully it won’t come back.

And so I think all of those are different strategies for the T-cell exhaustion to help with that, to hopefully keep from getting antigen loss, or if someone does have antigen loss, figuring out a way to go around it. And then the microenvironment I think is the biggest one, is how do we find cytokines and other things that can give us a bone marrow microenvironment that makes it really inhospitable for that myeloma to ever come back again.

So there are early Phase I studies looking at some of this, but I think down the line, that’s really what it will be, that once people go into their stringent CRs, MRD undetectable, now what can we do to keep that bone marrow from ever letting it grow again? And I think those are some interesting studies in the future.

Lisa Hatfield:

Okay. Thank you. So some patients are asked questions about the sequencing, and you’d mentioned different therapies. So I’ll ask this really quickly as follow-up, do you have any recommended or are there recommended sequencing of these different therapies like CAR T, then bispecifics, then CELMoDs, not all of them are FDA-approved at this point, but what are your thoughts on sequencing of those therapies?

Dr. Krina Patel:

So my activation tip here is that before you start bispecific therapy, talk to your doctor about CAR T. And the reason I say that is that when you get a bispecific therapy, and currently that is not a fixed duration therapy, it is a continuous therapy. So patients are on it until they relapse. And the problem is that once you relapse on that T-cell therapy, your risk of losing BCMA, losing the antigen is much higher. There are mutations that we’re seeing that most patients get.

So that means the next time we try to use a different BCMA therapy, there’s a big chance it’s not going to work. And we have small studies that show that, that people who get a bispecific, and then we try to go to CAR T for both CAR Ts that the response rates go down and the progression-free survival. So the months that patients get without, needing other therapy goes down for cilta-cel (ciltacabtagene autoleucel) [Carvykti], 33 months in CARTITUDE. It goes down to six months in CARTITUDE-2 where they did CAR T after prior BCMA therapy. That’s a huge drop.

In ide-cel, the real-world data, we saw that after bispecifics, you only get 2.8 months. If you get a CAR T, even though the response rates were still 70, 80 percent, it obviously there are clones that that BCMA isn’t there anymore that we can’t kill. And then it just grows back, right? The other way around, we actually see still a really good response because CAR T is a one-and-done, most of the time, you’re not going to lose BCMA.

So that let’s say a few years later, the myeloma was coming back. It usually has the same BCMA on there. So now I can use a bispecific. And yes, the PFS is still shorter than what you would see if you never had any BCMA therapy. It’s still in the realm of, almost a year, PFS though. So it’s much closer to what we see in the real world for bispecifics than the other way around for CAR T, it’s much, much lower. So we try to do CAR T first then bispecific, if possible. The other part is a T cell. So if you try to make T cells right after someone’s coming off of a bispecific, it is really hard to get T cells that are functional that then we can actually put a CAR into and make it work. So again, why, doing a CAR T first, and then a bispecific makes the most sense for the majority of our patients if they can do it that way.

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

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CAR T-Cell Therapy Follow-Up Monitoring | What Patients Can Expect from Patient Empowerment Network on Vimeo.

What can CAR T-cell therapy patients expect for follow-up monitoring? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses how long follow-up monitoring is typically carried out, issues that are monitored for, and proactive advice for patients to help ensure optimal care.

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“…for long-term side effects really is infections, number one, because even after I just saw a patient last week whose IgG level’s still less than 100 even a year after CAR T. We’ve just knocked out the good and the bad, and so it was just a higher risk of infection, so we try to prevent by giving IVIG regularly, and so again, any time you get an infection, just talk to your doctors, don’t say, ‘This is just a cold,’ just make sure that someone’s following.”

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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?

 What CAR T Research Is Ongoing to Improve Treatment Response?

What CAR T Research Is Ongoing to Improve Treatment Response?

Transcript:

Lisa Hatfield:

Dr. Patel, if a patient is or has been part of a clinical trial involving CAR T, how long will that patient be followed under the clinical trial protocol for long-term effects, and this is especially important for people who see community oncologists and are wondering about any latent effects that they might experience, how long were those clinical trials follow those patients?

Dr. Krina Patel:

That’s a great question. So most trials will follow for at least two years just for toxicity, efficacy, now, most trials will follow until you’re relapsing, so that’s the point, is that we want to make sure this is working, that you don’t have any long-term toxicity, and when you relapse, we call that the progression-free survival, which is what most of the trials are looking at, and once you relapse, usually they’ll say, Okay, you’re coming off a trial because now you need other therapy and that could take years.

And however, for all CAR T products, because these are genetically modified, the FDA requires that you go into a long-term protocol where we’re monitoring for potential leukemias or lymphomas that T cells can cause, theoretically. So that is for 15 years, total. So everyone then is supposed to go on to that, now we can’t force you to go on to those, but it is something important because it’s come up recently that maybe some of these T-cell products are leading to leukemia or lymphoma, because we’re modifying those T cells could they themselves turn into a cell that causes cancer.

The theoretical risk has always been there, I will tell you that in reality, yes, there have been probably a handful of patients out of all the lymphoma and myeloma and leukemia patients who’ve been treated with CAR T where maybe it came from the T cell itself, the actual CAR T. The majority of other cases that have been reported, it’s been a low risk, it’s less than what we usually see in the general population of patients with blood cancers that get other blood cancers.

But when we see it, most of the time,  it’s not in the T cell where the CAR was in, but again, a handful have been, and that is really why as a group, we have to be really careful and make sure that some of the different. The way we make CAR T is very different amongst the products, and to make sure that one product versus another isn’t more likely to cause T-cell leukemias or lymphomas. So that’s the main reason why that 15-year protocol exists.

Lisa Hatfield:

And do you have any tips for patients who maybe have undergone CAR T therapy, are several years out and working with our community oncologist, what should they be watching for in terms of any late in side effects or long-term side effects?

Dr. Krina Patel:

So I think the activation tip here for long-term side effects really is infections, number one, because even after I just saw a patient last week whose IgG level’s still less than 100 even a year after CAR T. We’ve just knocked out the good and the bad, and so it was just a higher risk of infection, so we try to prevent by giving IVIG regularly, and so again, any time you get an infection, just talk to your doctors, don’t say, “This is just a cold,” just make sure that someone’s following.

And the other big thing is your blood count, so if your blood counts start doing something crazy, your white count’s getting high or too low, you’re not on any therapy, your hemoglobin is getting really low, your platelets are getting low, that’s where we want to make sure there’s not a secondary cancer, a secondary blood cancer involved. Again, T-cell leukemia myeloma was really rare, but we have seen 10 percent patients with MDS or AML in the relapse refractory population, so that is something else we would still want to watch out for and make sure we don’t miss that.

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