Tag Archive for: risks

Understanding Myeloma | How You Can Collaborate in Your Care

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

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

See More from Collaborate Myeloma

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Collaborate | Being an Empowered Myeloma Patient

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

The Benefits of Shared Decision-Making for Myeloma Care


Transcript:

Bianca: 

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

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

Suzanne: 

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

Bianca: 

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

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

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

Suzanne: 

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

Bianca: 

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

Suzanne: 

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

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

Bianca: 

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

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

Suzanne: 

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

Bianca: 

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

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

Suzanne: 

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

Collaborate | Being an Empowered Myeloma Patient

Collaborate | Being an Empowered Myeloma Patient from Patient Empowerment Network on Vimeo.

When facing a myeloma diagnosis, how can you actively engage in your care? This animated video shares tips and advice for becoming empowered in your care, including understanding and setting treatment goals and educating yourself about myeloma.

See More from Collaborate Myeloma

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Questions and Considerations When Making Myeloma Treatment Decisions

How to Thrive and Set Myeloma Treatment Goals

What Should Myeloma Patients Ask About Developing Research


Transcript:

Bianca: 

Hi! I’m Bianca, and I’m a nurse specializing in myeloma. And this is Suzanne, who is living with myeloma.  

Together, we’re going to guide you through a series of videos to help you learn more about your myeloma and we’ll share tips to help you play an active role in your care and treatment decisions. 

Suzanne, I must say, you’re a great example of an empowered patient.  

Suzanne: 

Thank you, Bianca! It wasn’t always the case, but I’ve had some expert guidance from my healthcare team – including you!  

Bianca, what does it mean to be an empowered patient, exactly?  

Bianca: 

We can start with the World Health Organization’s definition of patient empowerment, which is: “a process through which people gain greater control over decisions and actions affecting their health.” 

Suzanne: 

That sounds right to me—as I’ve become more engaged in my care, I’ve definitely felt more confident and in control of decisions.  But when I was first diagnosed with myeloma, I was overwhelmed…and so was my family. Once we took proactive steps to learn more about my diagnosis and find the right healthcare team, I was able to access better overall care and to feel confident about my role in decisions.  

Bianca: 

Exactly, Suzanne. Let’s walk through some keys steps to becoming empowered, starting with diagnosis and education: 

  • When considering your care team, it’s a good idea to seek a second opinion with a myeloma specialist.  
  • A specialist can confirm your diagnosis, help you define your treatment goals, and provide peace of mind about your decisions.  
  • And, you should also educate yourself about your myeloma. If you’re watching this video on the Patient Empowerment Network website, you’ve already taken this step! 
  • In addition, there are a number of other advocacy groups specific to myeloma that provide a wealth of resources and support. You can ask your healthcare team for recommendations for learning about myeloma.  

Suzanne: 

That’s right, Bianca. And, it’s useful to access to your online patient portal, if available. You can use the portal to view medical records and test results and to communicate with your healthcare team.  

And as I’ve learned, it’s also important to actively participate in your care. This means speaking up and asking questions, which is not always easy. Bianca, what advice do you have for better communication with your healthcare team? 

Bianca: 

  • First, always prepare for appointments by writing down a list of questions in advance. You can use the Notes app on your smart phone or download one of the Office Visit Planners on the Patient Empowerment Network website to help you organize your thoughts.   
  • And, try to bring a friend or loved one to appointments to help you remember information and to take notes. 
  • Finally, it’s essential to realize that your doctor wants to know how you are doing and is there to help you. If you are hesitant about a treatment option or a side effect is bothering you, let someone on your healthcare team know. You can even send a message through your patient portal. 

Suzanne: 

That’s great advice, Bianca! I like the convenience of communicating through the patient portal, particularly if questions come up after my office visit. Remember, you have a voice in your care decisions, so speak up and ask questions.   

Bianca: 

That’s right! And, visit powerfulpatients.org/myeloma to view more videos with Suzanne and me.   

Thanks for joining us!  

Tools for Choosing Myeloma Therapy

Tools for Choosing Myeloma Therapy from Patient Empowerment Network on Vimeo.

When faced with choosing a myeloma treatment, what should be considered? This animated video reviews factors that impact treatment decisions, provides a list of questions to ask your healthcare team about therapy and advice for engaging in your myeloma care.

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Immunotherapy: Which Myeloma Patients Is It Right For? 


Transcript:

Whether a patient is newly diagnosed with myeloma or is facing a relapse, choosing a treatment approach can feel overwhelming.   

Shared decision-making is a process where patients and healthcare providers communicate and collaborate to make care decisions. This approach encourages patients to take a more active role in their care and treatment and can help them feel more confident when choosing a therapy. 

So, what can impact myeloma treatment decisions? 

  • There are patient-related factors, such as a patient’s age, fitness level, and pre-existing conditions. 
  • And, disease-related factors, including the aggressiveness of the patient’s disease and its location in the body. 
  • And, treatment-related factors, such as past treatments a patient has received or if they are refractory to medicines. 

How can you play a role in making treatment decisions?  

You can start by making a list of questions in advance of your appointment. This can help you to organize your thoughts before you meet with your healthcare team.  

And, when working with your doctor to choose a treatment, consider asking the following questions: 

  • What type of myeloma do I have?  
  • Are there test results that may impact my treatment choices? 
  • What are the risks and benefits of each treatment option? 
  • What approach do you recommend and why?  
  • How is the treatment administered, and what side effects might I expect? 
  • What are my options if this treatment stops working? 
  • Are there newer treatment options available to me, including immunotherapy?  
  • And, is there a clinical trial that might be right for me?  

It’s also a good idea to bring a friend or loved one to your appointment for support to take notes and help you recall information. Afterwards, discuss the appointment together – you can use this time to talk about your care plan and do your own research to learn more about your options.   

The patient portal is another useful tool in your care. You can use it to view lab and test results. And you can use the messaging feature to communicate with your healthcare team when you have more urgent questions to address before your next visit. 

Now that you know more about how to make myeloma treatment decisions, how can you take action? 

  • First, consider a second opinion or a consult with a specialist. 
  • Then, ensure you have had all relevant myeloma testing. 
  • Next, understand and participate in treatment decisions. This includes learning about your options, so you can weigh the pros and cons of each approach. And be sure to speak up and share your personal preferences and goals with your care team. 
  • Communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And finally, bring a friend or loved one to appointments and always write down any questions or concerns in advance. 

Visit powerfulpatients.org/myeloma to learn more about myeloma and access tools for self-advocacy. 

What Are the Risks of CAR T-Cell Therapy?

What Are the Risks of CAR T-Cell Therapy?  from Patient Empowerment Network on Vimeo.

Dr. Melissa Alsina, a myeloma expert from Moffitt Cancer Center, reviews the potential side effects of CAR T-cell therapy for myeloma patients, and discusses how these side effects may be managed.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More from Innovative Myeloma Therapies

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Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

What Are Common Myeloma Treatment Side Effects?

Transcript:

Katherine:

What are the risks of CAR T-cell therapy? 

Dr. Alsina:

So, in myeloma, it is, in general, pretty safe. There are two main – well, actually, I would say three main side effects that we can see with CAR-T. Number one is called cytokine release syndrome, and we are getting these cells from the patient’s immune systems, sending them a lab to be manufactured so that they can recognize this protein, BCMA, in the myeloma cells. 

And then, those cells are grown, so essentially, what we’re doing is that we’re taking the immune system of the patient, and we’re making it very specific against the myeloma cell. And then we’re growing it, so we’re making a hyperactive immune system, and then giving it back to the patient. And then, those cells, they are going to go ahead and react against the myeloma cells and start killing the myeloma cells, and in doing that, that reaction, that immune reaction will elicit release of a lot of proteins – cytokines – and that can cause side effects. 

When that happens, that is called cytokine release syndrome, and the most common finding with that is a fever. Patients can have a high fever. And then, it varies depending on the CAR-T that the patients are getting. So, for example, with this Abecma, usually, the reaction happens right away after you get the cells – the next day, so that’s why these patients, we admit them to the hospital because we know that this cytokine release syndrome is going to happen right away.  

And, it could be just a fever. In the majority of the patients, it happens like this, is just a fever, but it may be about 20 percent of the patients, that reaction can be more severe, and it could be a fever with low blood pressure or shortness of breath, and it could be a fatal complication, but that’s very, very rare.  

And we know – we can identify, obviously, when it’s happening, and there’s a medication that we can give to actually sort of counteract that reaction and don’t let it progress, and in the majority of the patients, that works quite well.  

Katherine:

What other side effects are there for CAR T-cell therapy? 

Dr. Alsina:

Yeah, so besides the main one that I discussed, cytokine release syndrome, the other thing that could happen is neurotoxicity, meaning that T cells can actually cross to the brain and cause toxicity in the brain, and depending on the type of CAR-T that the patient is getting, it could be less or more risk.  

But essentially, what could happen is that the patient could have some aphasia, like for example, difficulty finding words. It could also be just a headache. Patients could have seizures, so we do give the patients medication to prevent seizures while they are undergoing CAR-T. 

They can have difficulty writing, so we make every patient write a sentence every day to make sure that’s not being affected. And we do a mini mental status every day. Every day, we’ll go see the patient and ask them 10 different questions, like “Where are you? What day is it? Who’s the president?”, we show them an object, and so on so we can monitor these things very closely. If we see any changes, then we can intervene. Usually, for neurotoxicity, we give steroids. 

The good news, though, is that this is very rare. With Abecma, it’s very rare that a patient would have severe neurotoxicity. With ciltacabtagene autoleucel (Carvykti), which is the one that was approved more recently, from 100 patients that were treated, there were five patients that had this delayed neurotoxicity, some of them with movement disorders, like Parkinson’s-like systems, and these were delayed. These didn’t happen in the first few weeks. 

But we learned what are the risks associated with these, the majority of the patients that have very high tumor burden, so what we do is that we monitor the patients very closely, especially the patients with high tumor burden. The ideal situation is that we can control the disease a little bit better before taking them to CAR-T, but even when that’s not possible, what we do is that we intervene early on if we see that these patients are getting any side effects and being more aggressive with the intervention. 

And then, the third, more important side effect is these CAR-T cells can prevent blood counts to recover. For CAR-T, we give chemotherapy.  

That would allow the T cells to expand, and this chemotherapy can drop the blood counts, but usually, they recover quickly, but in some patients, this recovery doesn’t happen quickly, and patients can have low counts for months, and obviously, that would bring increased risk of infection. 

So, that is a potential complication, especially in patients that have received a lot of prior therapies, and it’s not common that a patient would take a long time, but it could happen, and sometimes, occasionally, we’ve had to give these patients a stem cell boost from stem cells that we have stored to actually make their counts recover. So, those are essentially the three most common complications, but in general, it’s a treatment that is well tolerated and very manageable, and I can tell you the majority of the patients that I’ve treated, they’ve said this is easier than a transplant.  

Myeloma Treatment: When Should a Clinical Trial Be Considered?

Myeloma Treatment: When Should a Clinical Trial Be Considered? from Patient Empowerment Network on Vimeo.

 At what point should a clinical trial be an option for myeloma treatment? Dr. Joshua Richter shares his perspective on the appropriate time to weigh clinical trial participation and the potential benefits.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma


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Myeloma Treatment Decisions: What Should Be Considered?

Which Myeloma Patients Should Consider Stem Cell Transplant?

Is the COVID-19 Vaccine Safe for Myeloma Patients?


Transcript:

Katherine:

When should a clinical trial be considered for myeloma treatment?

Dr. Richter:

So, clinical trials are an extremely important component of how we manage myeloma. And I think there are a lot of myths and misconceptions about trials. Trials are not always things to do after everything else failed. From my standpoint, at every point along the way, we should always consider clinical trials, because they offer something really amazing. They offer us access to drugs way before they’re approved.

And the benefit of not waiting until the end, after you’ve been through everything else, is two-fold. One, in order to get on a trial, you need to fit certain criteria, inclusion, and exclusion criteria. You need to have myeloma, but you can’t be so sick from other medical problems that you’re not going to tolerate that treatment well. As such, unfortunately, some patients after they’ve been through all the other therapies may not qualify for a clinical trial, and that can be really upsetting.

The other benefit of doing a clinical trial early on is if you go on a new drug and it doesn’t work, you have all of the other standard of care options available at a moment’s notice. But if it does work and you gain access to a drug way before it’s approved, and it happens to work extremely well in you, you can have an unbelievably long remission and still have all of the drugs that are available. And, potentially, in that time on the drug, new standard of care drugs are approved. It even deepens the well that you can reach into to grab more options. So, at all times along the way, it’s always important to weigh the risks and benefits of what we call standard of care treatment versus clinical trial options.