What You Should Understand About Myeloma Clinical Trials
In this Collaborate Myeloma animated video, nurse Bianca and myeloma patient Suzanne explain the basics of clinical trials, including the phases of clinical trials, discuss common patient concerns, and review the potential benefits of joining a trial. They also share key questions to ask your health care team when considering a myeloma clinical trial, so you can feel informed and empowered when making care decisions.
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Transcript:
Bianca:
Welcome back! I’m Bianca and I’m a nurse specializing in myeloma care. In this video, we’re going to talk about what clinical trials are, why they matter, and how they may fit into your myeloma treatment plan.
And joining me again today is Suzanne!
Suzanne:
Hi everyone! I’m so glad to be back to share my experience. Clinical trials can sound overwhelming, but they’re actually an important part of how myeloma treatments improve.
And, for people like you and me, they can be an opportunity to access the latest, most advanced therapy.
Bianca, can you start by explaining what a clinical trial is exactly?
Bianca:
Of course. A clinical trial is a study that helps researchers understand how new treatments work, or understand new ways of using existing treatments. Clinical trials also demonstrate the safety and effectiveness of therapies for people with myeloma.
Suzanne:
When my doctor first suggested a clinical trial, I was hesitant. But after discussing trials with my team and learning about the process and safety measures in place, I realized that clinical trials are carefully organized, and I would be closely monitored by several team members.
Bianca:
That’s a great point, Suzanne. You should also know that participation is always voluntary, and patients can choose to leave a trial at any time.
And, as you mentioned, trial participants are monitored more closely than individuals who are receiving standard care. This enhanced monitoring is an essential aspect of ensuring the safety and effectiveness of new treatments.
Suzanne:
Good point, Bianca. It’s also important to have a good understanding of the trial process. Can you explain the phases of clinical trials?
Bianca:
Sure! Clinical trials are organized by phases:
- Phase 1 tests the safety of the treatment, finding the appropriate dose that produces the fewest side effects.
- Phase 2 further assesses the safety of the therapy. The treatment is tested on more humans with a specific disease.
- Phase 3 compares the efficacy of a new therapy to the standard-of-care treatment.
Suzanne:
Thanks for that explanation, Bianca. When my doctor mentioned a clinical trial, we talked about how it could help me and why it was a good choice for me at that point in my care. The trial I joined gave me early access to a therapy that wasn’t widely available yet.
Bianca:
That’s one of the key benefits—clinical trials may provide access to cutting-edge treatments. They should not be considered a last resort option – clinical trials can, and should, be considered at any stage of care.
Suzanne:
That’s right. And, it’s important to ask questions before you begin any therapy.
Here are some questions to ask your doctor when considering a trial:
- Why is this treatment a good option for me?
- What is the phase of this trial?
- How often will I need to come in for appointments?
- How is the therapy administered?
- What are the potential side effects?
- Will participation require travel or extra tests?
- And, what is the cost?
Bianca:
That’s great advice, Suzanne. Your care team can help walk you through the process. And some trials even provide support with transportation, lodging, or other logistics – never hesitate to ask.
If you’re interested in potentially joining a clinical trial, you can start by:
- First, asking your healthcare team if there are trials available for your specific type of myeloma.
- Then, review the pros and cons with your doctor and care partner.
- Be sure to ask about logistics. This includes time commitment, any travel, and cost.
- And finally, ensure that you AND your care partner feel comfortable with the decision before moving forward.
Suzanne:
Thanks, Bianca – really good advice! Being part of a clinical trial made me feel like I was contributing to the myeloma community. But it’s a personal decision. The most important thing is to make a choice that’s right for you.
To learn more about myeloma and clinical trial participation, visit powerfulpatients.org/myeloma. Thank you for joining us!
Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions
Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions from Patient Empowerment Network on Vimeo.
This animated video defines common myeloma treatment goals, provides an overview of available myeloma therapies, and includes advice for making care decisions and the importance of being your own advocate.
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Understanding Myeloma | How You Can Collaborate in Your Care |
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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!
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.
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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.
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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!
