Tag Archive for: therapy

Collaborate | Which Treatment is Right for YOUR CLL?

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How can chronic lymphocytic leukemia (CLL) patients work with their healthcare team to find the right treatment approach for their individual disease? This animated video reviews important testing, factors that impact options, and advice for discussions with your provider. 

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Related Resources:

Who Is on a CLL Patient's Care Team

Who Is on a Patient’s CLL Care Team? 

 Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care? 

Transcript:  

 Dr. Johnson:

Hello again! I’m Dr. Johnson, a physician specializing in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short. 

Joseph:

Hi everyone! In today’s video, Dr. Johnson and I will discuss the factors that go into determining the most effective treatment for a patient’s CLL and the critical role that biomarker testing can play in helping to make those decisions. 

Dr. Johnson:

Exactly, Joseph—choosing the right treatment for CLL can be complex and depends on characteristics that are unique to each patient. And these factors may include: 

  • The stage and aggressiveness of the disease.  
  • The patient’s overall health, including their age and any coexisting conditions. 
  • Any symptoms they may be experiencing.  
  • And the specific characteristics of the CLL cells, such as genetic mutations or chromosomal abnormalities. 

Joseph:

So, Dr. Johnson, how do these genetic mutations and abnormalities impact treatment choices? 

Dr. Johnson:

This is where biomarker testing comes in, Joseph. This involves analyzing the cancer cells to identify specific genetic mutations or abnormalities, referred to as biomarkers.  

These biomarkers can provide valuable information about the disease and how it might respond to specific treatments. 

Joseph:

OK. So, Dr. Johnson, what kinds of biomarker tests are typical for CLL patients? 

Dr. Johnson:

Good question! Common biomarker tests for CLL include identifying mutations in the IGHV gene, TP53 gene mutations, and chromosomal abnormalities like deletions in chromosomes 11q and 17p. The results help determine the most effective treatment strategy.

Joseph:

Got it. So, how exactly does this information impact the treatment plan? 

Dr. Johnson:

Well, understanding the presence of mutations or abnormalities is crucial. For example, patients with a TP53 mutation or 17p deletion may not respond well to standard chemotherapy. Instead, targeted therapies or newer treatments might be more effective. Having this information allows the healthcare team to personalize the treatment plan to help achieve the best possible outcome. 

Joseph:

When I was diagnosed, I underwent biomarker testing. Then Dr. Johnson and I discussed how the results could guide my treatment plan. It reassured me that the treatment was tailored to my specific disease. 

Dr. Johnson:

Absolutely, Joseph. Ensuring you have had all the necessary tests done before starting treatment is essential. Joseph, can you share advice for discussing treatment options with your doctor? 

Joseph:

Sure, here’s what I’ve learned: 

  • First, educate yourself: Learn about the types of biomarker tests available and what they can reveal about your CLL. 
  • Next, ask questions: Don’t hesitate to ask your doctor how test results will impact your treatment plan. 
  • And discuss your goals: Share your concerns about treatment side effects or the impact on your lifestyle. 
  • Finally, don’t forget to bring a support system: Have a loved one accompany you to appointments to help take notes and to provide support. 

Dr. Johnson:

Those are great tips, Joseph. Being proactive and informed can make a big difference in managing your CLL. 

Joseph:

Thank you for joining us today. For more information and valuable resources, visit powerfulpatients.org/CLL. Take care, and stay empowered in your CLL journey! 

Collaborate | Which Treatment is Right for YOUR CLL? Resource Guide

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Collaborate | How Is CLL Treated?

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Collaborate | How Is CLL Treated? from Patient Empowerment Network on Vimeo.

.What are the common chronic lymphocytic leukemia (CLL) treatment approaches? This animated video reviews treatment types, essential testing, and provides guidance for engaging in treatment planning.

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Related Resources:

How to Make Confident and Informed CLL Treatment DecisionsHow to Make Confident and Informed CLL Treatment Decisions Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 Collaborate | Understanding YOUR CLL Diagnosis

Collaborate | Understanding Your CLL Diagnosis

Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, here with another video in the CLL Collaborate series from the Patient Empowerment Network. In this video, we’re going to review the common types of CLL treatment. 

Joseph: 

And I’m Joseph, Dr. Johnson’s patient. Welcome back! 

When I was first diagnosed, Dr. Johnson told me that my CLL wasn’t yet ready to be treated and that I was in the watch-and-wait period. I was surprised by this information—it felt strange to be diagnosed with cancer and to not move forward with treatment immediately. 

Dr. Johnson, can you please explain this approach? 

Dr. Johnson: 

I would be happy to. Since CLL may grow slowly in some patients, instead of starting treatment right away, the patient’s healthcare team will monitor the disease with regular appointments and blood work.  

And as Joseph mentioned, this is called watch and wait.  

Joseph: 

Right. And some patients may never need treatment while others may start therapy later.  Dr. Johnson, what are some of the reasons that treatment would begin? 

Dr. Johnson: 

Anyone with a CLL diagnosis should be monitored closely, but an increase in a patient’s symptoms, anemia, or low platelet counts could indicate that it’s time to treat the CLL.  

Additionally, some patients may have a faster growing type of CLL that requires treatment upon diagnosis.  

Joseph: 

And when it was time for my treatment to begin, I remember we reviewed my options together, along with the goals of treatment and potential side effects.  

Dr. Johnson: 

Yes! It’s always important to set treatment goals with your doctor. Treatment goals vary by patient and help determine what is best for your unique CLL and your lifestyle.  

You should also have all essential testing prior to choosing an approach. Test results can help guide decisions and may show whether a particular treatment could be more effective for an individual patient. 

OK, let’s walk through the most common types of treatment: 

  • There is an approach commonly called F-C-R, which is two chemotherapy drugs that are combined with a targeted treatment called a monoclonal antibody.  
  • Additionally, there are several other drug therapy classes currently approved to treat CLL. They include: 
  • Immunotherapy, including monoclonal antibodies 
  • And targeted therapies 
  • If the CLL isn’t responding to chemotherapy or targeted therapy, your doctor may discuss options like stem cell transplant, CAR T-cell therapy, or a clinical trial. 

Joseph: 

When it was time to treat my CLL, Dr. Johnson helped me understand what was available for me.  So, how can you feel confident when considering your treatment options? 

  • First, consider consulting with a CLL specialist who is well-versed in ALL available treatment approaches, including clinical trials. 
  • Set treatment goals with your team and ask questions if you are confused about the proposed plan. 
  • Ask if you have had all essential testing and discuss how results may impact your treatment options. 
  • Finally, request educational resources to learn more about each approach on your own. Watching videos like this is a great start! And, you can visit powerfulpatients.org/CLL for more resources. 

Dr. Johnson: 

Great advice, Joseph! You should also bring a friend or loved one to your appointments, so you can absorb the details and take notes as a team.  

Joseph: 

Thanks for joining us! Don’t forget to download the guide that goes with this video—it can help you retain what we’ve covered. 

Collaborate | Collaborate | How Is CLL Treated? Resource Guide

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Collaborate | Understanding YOUR CLL Diagnosis Resource Guide

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Collaborate | Understanding YOUR CLL Diagnosis

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Collaborate | Understanding YOUR CLL Diagnosis from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about their diagnosis? This animated video explains what CLL is, how it is diagnosed, and provides advice for being proactive in care decisions.

Download Resource Guide

See More from COLLABORATE CLL

Related Resources:

Who Is on a CLL Patient's Care Team

Who Is on a Patient’s CLL Care Team?

 Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care?

Transcript:  

Dr. Johnson: 

Hello again! I’m Dr. Johnson, and I’m a doctor who specializes in chronic lymphocytic leukemia, or C-L-L. And this is Joseph, one of my patients. Welcome back to the CLL Collaborate Series! 

In the first video, Joseph and I talked about the important role patients play in their care and treatment decisions. 

Joseph: 

That’s right! And from the start, patients and their care partners should understand what the diagnosis actually MEANS.  

Dr. Johnson, can you please explain what CLL is? 

Dr. Johnson: 

I’d be happy to. CLL begins in the cells in the bone marrow—white blood cells called lymphocytes–and then goes into the blood. It’s the most common type of adult leukemia.1 

The condition is typically diagnosed through a blood test and confirmed by a bone marrow biopsy. Each patient is different, but some people may have symptoms that lead to testing for CLL. 

Joseph: 

And when I was diagnosed, I was having frequent colds and sinus infections. Dr. Johnson, what are other symptoms? 

Dr. Johnson: 

Like Joseph mentioned, a high risk of infection is associated with CLL. Other common symptoms may include:  

  • Fatigue 
  • Night sweats 
  • Enlarged lymph nodes or spleen 
  • Fever  
  • And unintentional weight loss 

Joseph: 

And it’s important to get an accurate diagnosis to understand how an individual patient’s CLL may behave. Dr. Johnson, what testing helps you learn more about the specifics of a patient’s disease? 

Dr. Johnson: 

This is important as no two CLL patients are the same. So, we should conduct essential testing at diagnosis to get more information about how a patient’s CLL may progress, and the results may even help guide treatment options.  

In addition to a complete blood count—or CBC, tests may include: 

  • Flow cytometry testing 
  • Cytogenetic testing  
  • Fluorescent in situ hybridization (FISH for short) 
  • Molecular testing  
  • And imaging tests, such as a CT scan 

Your doctor should review the results of these tests with you and make sure you understand how they impact your CLL care and treatment decisions.  

Joseph: 

Right! It’s a good idea to discuss the results with your doctor before you begin conversations about your treatment options.  

So, what other proactive steps can you take to understand your CLL diagnosis?  

  • Make sure you understand the specifics of your unique CLL, how it will impact your lifestyle, and if there are symptoms you should be looking out for. 
  • Ask whether you have had all key testing and discuss the results with your doctor. 
  • Find out if there are any indicators that your CLL is high-risk or fast-growing.  
  • And finally, when it’s time to make treatment decisions, ask which tests will need to be repeated. 

Dr. Johnson: 

Great advice! Don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered. 

Joseph: 

You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!  

Entendiendo tu rol en el cuidado de tu CLL

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Entendiendo tu rol en el cuidado de tu CLL from Patient Empowerment Network on Vimeo.

Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization. PEN’s mission is to offer trusted information to empower anyone impacted by cancer, through health equity, health literacy and shared decision-making. Subscribe now to receive the latest news on cancer treatment and research: https://powerfulpatients.org/connect

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Related Resources:

How to Make Confident and Informed CLL Treatment Decisions

How to Make Confident and Informed CLL Treatment Decisions

How to Play an Active Role in Your CLL Treatment Decisions

 How Can You Engage in Your CLL Care

How Can You Engage in Your CLL Care?

Transcript: 

Dra. Johnson:  

¡Hola! Soy la Dra. Johnson, y soy médico especializado en cánceres de sangre. Y él es Joseph, quien vive con leucemia linfocítica crónica, o CLL por sus siglas en inglés. 

Y en esta serie de videos, Joseph y yo discutiremos pasos para ayudarte a aprender sobre tu diagnóstico, entender tus opciones de tratamiento y colaborar con tu equipo de atención médica en las decisiones sobre el cuidado de tu CLL. 

Joseph:  

Y aunque pueda sonar sencillo, colaborar con tu equipo no siempre es algo natural.  

Cuando me diagnosticaron con CLL, estaba confundido, no solo sobre la enfermedad en sí sino sobre MI rol en la toma de decisiones sobre mi cuidado. No me sentía cómodo compartiendo mi opinión o haciendo preguntas cuando necesitaba más detalles. 

La Dra. Johnson percibió mi vacilación y me explicó que educarme sobre mi CLL me permitiría sentirme más seguro al participar en las decisiones sobre el cuidado. 

Dra. Johnson:  

Así es, Joseph. El primer paso para sentirte cómodo hablando con tu médico es aprender sobre tu enfermedad. 

Puedes comenzar con sitios web de grupos de defensa que tienen recursos educativos, como la Red de Empoderamiento del Paciente. PEN cubre todo sobre CLL, desde lo básico para pacientes recién diagnosticados hasta información sobre terapias de vanguardia. 

Joseph:  

¡Eso es cierto! Siguiendo el consejo de la Dra. Johnson, descargué sus planificadores de visitas al consultorio para ayudarme a organizar mis pensamientos y tomar notas durante mis citas. 

Dra. Johnson:  

Y la Sociedad de Leucemia y Linfoma es otro lugar creíble para comenzar. La LLS proporciona información educativa y recursos de apoyo.   

Joseph:  

También puedes pedir recomendaciones a tu médico, o usar tu portal del paciente. El portal a menudo contiene enlaces y recursos educativos para pacientes. 

Dra. Johnson:  

Pero ten en cuenta que la información que encuentras en línea nunca es un sustituto del consejo médico. Ten cuidado con sitios que se basan en opiniones o se centran en la experiencia individual de un paciente. 

Siempre debes hablar con tu médico sobre lo que has aprendido para obtener respuestas a tus preguntas. 

Joseph:  

Muy cierto, Dra. Johnson. Y una vez que sentí que tenía un buen entendimiento de CLL, comencé a tomar medidas proactivas y a participar en mi cuidado. Aquí está mi consejo para otros: 

  • Primero, asegúrate de escribir tus preguntas y objetivos antes de tus citas. A menudo es difícil recordar cosas en el momento. 
  • Luego, trae a un ser querido para que participe en tus citas y tome notas. También es una buena idea discutir lo que aprendiste después de la visita. Esto te ayudará a retener la información que escuchaste. 
  • Además, intenta superar tus miedos de “molestar a tu médico”: sé honesto sobre cómo te sientes. Es especialmente importante mencionar cualquier síntoma o efecto secundario porque esto puede tener un impacto directo en tu cuidado. Recuerda, tu médico no puede resolver un problema a menos que le digas lo que está sucediendo. 
  • Y si estás tomando estos pasos y aún no sientes que te escuchan, deberías considerar obtener una segunda opinión o incluso cambiar de médico.  

Dra. Johnson: 

Ese es un gran consejo, Joseph: siempre deberías sentir que estás en el centro de tu cuidado. Esperamos que este video te inspire a colaborar en tu cuidado.  

Y, no olvides descargar la guía de recursos que acompaña a este video; proporciona un resumen de la información que cubrimos. 

Joseph: 

También puedes visitar powerfulpatients.org/CLL para ver más videos con la Dra. Johnson y conmigo. ¡Gracias por unirte a nosotros! 

Entendiendo tu rol en el cuidado de tu CLL Guía

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Collaborate | Understanding Your Role in Your CLL Care Resource Guide

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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

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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

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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

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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