Tag Archive for: CAR T-Cell Therapy

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.  

Where Can Myeloma Care Partners Find Out More About Financial Support?

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Where Can Myeloma Care Partners Find Out More About Financial Support? from Patient Empowerment Network on Vimeo.

Where can myeloma care partners find out more about available financial support? Nurse practitioner Daniel Verina discusses avenues for navigating the financial burden of care through social workers and organizations like the International Myeloma Foundation (IMF), and the importance of asking your healthcare team for resources.

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

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

Related Resources:

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

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

 An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

 After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

Transcript:

 Katherine Banwell:

How can caregivers find out more about financial support? 

Daniel Verina:

I think the great thing is talk to your social worker and your institution to see what available funds, what grants that are available for them to help support them through that. Also, inquire at their employment what is available for them through there. What does their insurance actually cover, right?  

Going to the International Myeloma Foundation website or the Multiple Myeloma Research Foundation website and seeing the support that they can get through those institutions and organizations and the key tools that they have there for them.   

Katherine Banwell:

I mean, there could be something as simple as not being able to pay for parking.   

Daniel Verina:

Absolutely. And I always ask. I tell my patients, “Ask.” I’ll be honest, at my institution, I never know whether they can punch the card and get free parking or not, but I say to them, “Please ask at the front desk. Ask our social workers if there are ways.” And if they’re getting bills that we don’t understand, one thing patients need to do, and their caregivers is to bring us the bills that they have.  

Because many times, in my experience, the patient has brought me a stack of bills after four months and said, “Look what I’m getting.” I said, “Well, why didn’t you tell me a month into this, not waiting four months?” So, it’s allowing them to know bring it to us and let’s see what we can do can. We can never always guarantee that we can eradicate their bills. But what I’m saying to them is we can try.  

Katherine Banwell:

Absolutely. That’s great advice, Daniel. Thank you so much for joining us.  

Daniel Verina:

Oh, thank you so much. 

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

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CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner from Patient Empowerment Network on Vimeo.

How can care partners monitor side effects from CAR T-cell therapy? Nurse practitioner Daniel Verina discusses the unique aspects of CAR T-cell therapy, guiding care partners on recognizing side effects like cytokine release syndrome and neurological changes, emphasizing communication with healthcare providers.

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

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

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

 An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Is there anything you’d like to add about care partners and what they should know about the CAR T-cell process?   

Daniel Verina:

Absolutely. That some of the CAR T experience is that when patients reach the CAR T, they may already have a stem cell transplant earlier in their life, an autologous stem cell transplant. So, I will guide them and say there were some similar characteristics, meaning that there’s collection, there’s chemotherapy, and there’s a stay in the hospital.  

But some of the differences that their blood counts may not return as quickly as they did with an auto stem cell transplant.  So, they may see lower counts.  After a month or two, they may start to drop. So, to expect that some of these changes are normal or part of our pathway.  

But also, things that we need to look for and a caregiver should understand, that there are delayed effects, like cytokine release syndrome, or neurotoxicity’s that we see with CAR T can happen a couple of months down the line.  So, one of the important tools that a caregiver should have to watch and monitor patients longer on is being able to look for these toxicities. And there are many tools out there that are available through the IMF or the MMRF that the caregiver can say they’re not remembering as well, or I feel like they’re word searching.  

Even though the patient may come to us and sound and answer the questions appropriately, the caregiver says, you know what, I just feel like there’s something different.  And that’s a cue for us. I always call them the truth serum. The caregiver to me is the truth serum in the room.  So, I think one of those things is really teaching them to look for delayed side effects or adverse events that may occur even four, five, six months later.   

Katherine Banwell:

Can you give us an idea of what sort of side effects the care partner should be looking for? 

Daniel Verina:

So, in the hospital, patients can experience what we call cytokine release syndrome or fevers, fast heart rate, low blood pressures. And that could occur upfront, but it could happen later on in life.  Certain things also are neurotoxicity. So, having persistent headaches, memory loss, word searching, sometimes change in their gait, and sometimes even a little bit of a handshaking or tremor.  

So, neurological changes. Shuffling they may see. Weaknesses in their legs, things like that. So, they used to get up out of the chair very quickly, and now it takes them longer to do that. And those are signs that they should be calling their primary CAR T physicians and saying, “I’m seeing a change,” because the further out they go and if they’re doing successfully, we see them about every month or so compared to when they come out of the hospital. So, you want to alert the caregiver to call us as quickly and not wait until the next appointment. You never know.  

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

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After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized from Patient Empowerment Network on Vimeo.

What should care partners expect after CAR T-cell therapy? Nurse practitioner Daniel Verina offers tips for staying prepared, including advice on returning home, preparing the home post-therapy, and staying organized.

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

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

Related Resources:

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

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

 An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

We know that patients should be near a medical center for the first few weeks after the therapy. Do you have any organizational tips for how a care partner can best prepare for the return home?   

Daniel Verina:

Absolutely. So, yes, it is required. So, the patient generally stays in the hospital for two weeks and then it’s required for them to be very close to the hospital two weeks after that because it requires many visits. I think preparing for home is also knowing that they have adequate and support for transportation because sometimes the patient may have to come in two to three times a week for support usually in the bigger institutions.  

Also, reconnecting back with their local oncologist just to make sure that if something does happen and they can’t get to the cancer center quick enough, they have another support. And to also to be able to monitor that, make sure they have thermometers and blood pressure machines and things that are going to be there for them when they get home.  

Katherine Banwell:

Do you have any tips for making the physical space at home more comfortable?   

Daniel Verina:

You know, I always say that’s individualized and everybody’s home is different. So, it’s hard to say that. I always – I’m very minimalistic. So, I always say don’t have a lot of clutter because post-CAR T you may feel a little weak or tired. So, make sure that they’re not navigating around a lot of furniture. There’s not loose rugs, equipment like that.

They may need some support even in the showers. That they may need a shower chair depending on the patient’s physicality. But that’s a very good discussion to have before they leave the hospital. Maybe our social worker teams can set up DNS [Home Health Care] and be able to put some support into the home.    

Katherine Banwell:

Are there any supplies that care partners will need as they care for a patient at home?   

Daniel Verina:

Supplies are very simple; I’ll be honest with you. It’s generally thermometers and maybe an automated blood pressure machine, I think, and then a pad of paper and pens that work itself. And also, like I say, it’s having the transportation or having a backup of something if the patient doesn’t feel well to get there. But in supplies, no, the patient should eat what they normally eat. I would say not as spicy because they may not be able to tolerate it, but things like that.  

Katherine Banwell:

And a calendar, I would think would be pretty important.  

Daniel Verina:

I love calendars. I’m a calendar writer, so I like it usually on paper, but people like it on their phone. So, I always tell patients also to keep a diary of how they feel because they come to us and I think it’s very common where you go, I have a million questions to ask you, and then they forget. So, it’s always good to say, “Oh, he had a little – he might have had some loose stools or diarrhea on this day,” but then they forgot to tell you. So, I think it’s good to document those things. And even weight –    

Katherine Banwell:

Pardon me?  

Daniel Verina:

And even their weight. So, all their vital signs and weight should always be documented. 

Katherine Banwell:

Okay, thank you. Who is the best point of contact at a medical center if they need support?   

Daniel Verina:

It’s actually the medical team. The best support is the medical team, depending on it. So, and each institution, I’ll say, may have different ways of accessing it. We have a 24-hour hotline. So, when the patient doesn’t feel well, they can call directly in. If it’s simple questions, they can always use the EMR messaging services that we have at our institution. So, each institution may have a way of doing it, but I would say always reach out to the primary team.   

An Essential CAR T-Cell Therapy Team Member | The Care Partner

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An Essential CAR T-Cell Therapy Team Member | The Care Partner from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina highlights the crucial role that care partners play during the CAR T-cell therapy process, offering advice on what they should expect throughout the journey, and emphasizing the importance of a support system and resources for patients and their care partners.

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

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

Related Resources:

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

After CAR T-Cell Therapy | Care Partner Tips for Staying Prepared and Organized

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

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

 Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Katherine Banwell:

Daniel, the care partner is a vital team member in the CAR T process. Can you explain the role of a care partner?  

Daniel Verina:

Absolutely. I think one of the key ingredients, I think, in cancer care across the board is the caregiver. I think many times it’s forgotten because we’re very focused on the patient’s needs. But entirely, it’s not just the patient who has the cancer, it’s the caregiver who actually has the cancer or bears some of the burden. So, I think it’s important to always have them involved in all of the roles and each step that the patient goes through, and also try to provide them support that they may need that’s extra, not that the patient gets.   

Katherine Banwell:

Yeah. As a nurse practitioner, Daniel, you educate care partners about the CAR T-cell process. What are three key pieces of advice you share with care partners for patients who are considering CAR T-cell therapy?   

Daniel Verina:

There’s a few. So big three key points to this is that it’s a journey. One of the things, it’s not just a quick we’re going to do this in a month and then we’ll be moving on. It’s going to be for a couple of months or a few years that we may be together during this CAR T experience, one.

There’s going to be also many trips to your facility, your institution, your cancer center that are required to even getting part of the CAR T, working up for the CAR T before even having the cells manufactured and given back to them. And I think also having an extra support for them, so the caregiver also has to have support outside of them. So, if they’re not able to make a meeting or come to an appointment, they should have a backup or somebody even just to talk to outside of just the cancer center.   

Katherine Banwell:

For care partners, what support and resources do you recommend for their mental and physical well-being when caring for a loved one who’s undergoing CAR T?   

Daniel Verina:

Absolutely. I think you could even broad span that to all of cancer care itself, but especially with CAR T. There’s many resources out there that are available. So, the International Myeloma 

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.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

 Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care

 The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Bianca: 

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

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

Suzanne: 

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

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

Bianca: 

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

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

Suzanne: 

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

Bianca: 

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

Suzanne: 

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

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

Bianca: 

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

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

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

Suzanne: 

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

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

Bianca: 

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

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

Suzanne: 

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

Bianca: 

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

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

Suzanne: 

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

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

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ACTIVATED CAR T-Cell Therapy Resource Guide_KrinaPatel

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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.

See More from [ACT]IVATED CAR T

Related Resources:

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

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

 What Are CAR T Therapy Requirements for Care Partners?

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

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

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

Transcript:

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

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

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

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

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

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

[ACT]IVATION tips for CAR T patients: 

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

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

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[ACT]IVATED CAR T-Cell Therapy Toolkit Checklist

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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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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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See More from [ACT]IVATED CAR T

Related Resources:

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

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

 What Are CAR T Therapy Requirements for Care Partners?

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

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

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

Transcript:

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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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.

[ACT[IVATION TIP

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

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

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What Are CAR T-Cell Therapy Requirements for Care Partners? from Patient Empowerment Network on Vimeo.

What requirements do CAR T-cell therapy care partners need to meet? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses CAR T-cell therapy care partner requirements, the reasoning for the requirements, and specific side effect conditions they need to be on the lookout for.

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Related Resources:

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

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

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 What CAR T Research Is Ongoing to Improve Treatment Response?

What CAR T Research Is Ongoing to Improve Treatment Response?

Transcript:

Lisa Hatfield:

With their caregiver eligibility requirements, does a patient have to have a caregiver with them during the initial part of the CAR-T therapy?

Dr. Krina Patel:

Yeah. So, unfortunately, 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.

Now when you’re in hospital, we actually say, No, you don’t need a caregiver with you, it’s nice to have somebody because we could pick up on things a lot faster, so if someone calls somebody the wrong name, it happens once in a while but they’re doing it consistently. I might not recognized that, but my patient’s caregiver will recognize it, they repeatedly, they called me this name instead of this name.

So little things like that, but at the same time, you don’t have to have a caregiver when you’re in the hospital because we’re watching you 24/7. So for that period that sometimes our patients stay for about a week or so, you don’t need somebody, but after that when you are outpatient, at least until you get home and you’re out of that period of ICANS and CRS, we do need somebody with you just to make sure if something bad doesn’t happen, and that if something is happening, they can call 911 or at least get you to the hospital relatively quickly. And that’s why there’s time limits, you can’t be farther than, for some trials, 30 minutes outside the hospital where you’re getting your CAR T.

So say two hours. Again, for us, we usually say 30 minutes is probably the longest, just because Houston, the traffic is so crazy too sometimes, that we want to make sure that you can get to the hospital quickly, even though it’s a lot less likely chance of getting high grade ICANS it’s less than 5 percent, but if you are that patient, we want to be able to get you into the hospital quickly and reverse it quickly.

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