MM Treatments and Clinical Trials Archives

Tools for Choosing Myeloma Therapy

December 15, 2022/in IMT Animated, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

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.

Related Programs:

What Is Myeloma CAR T-Cell Therapy?

Immunotherapy: Which Myeloma Patients Is It Right For?

Making Myeloma Treatment Decisions at Every Stage of Care

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 Is CAR T-Cell Therapy for Myeloma?

December 15, 2022/in IMT Animated, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

What Is CAR T-Cell Therapy for Myeloma? from Patient Empowerment Network on Vimeo.

How does CAR T-cell therapy work to treat myeloma? This animated video provides an overview of the CAR T-cell process, explains which patient this treatment could be appropriate for, and reviews potential side effects.

Related Programs:

What Is Myeloma CAR T-Cell Therapy?

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

What Are the Risks of CAR T-Cell Therapy?

Transcript:

CAR T-cell therapy is a type of treatment in which a patient’s own immune system cells, also known as T cells, are reprogrammed in a laboratory to attack cancer cells.

The process involves removing T cells from the patient’s blood. Then, the T cells are sent to a laboratory where a gene for a special receptor that binds to a protein on the patient’s cancer cells is added to the T cells. The special receptor is called a chimeric antigen receptor.

When this process is complete, the cells are put back into the patient’s body by infusion. The altered T cells then attack and destroy cancer cells in the patient’s body.

In myeloma patients, the FDA-approved CAR T-cell therapies recognize a protein called B.C.M.A. on the surface of myeloma cells.

Now that you know how CAR T-cell therapy works, who is CAR T-cell therapy right for?

While still a new treatment, CAR T-cell therapy is currently approved for people with relapsed or refractory multiple myeloma who have already received four or more lines of therapy.

While every patient reacts differently to CAR T-cell therapy, some of the potential side effects may include:

Cytokine Release Syndrome, which occurs when the immune system responds to infection or immunotherapy drugs more aggressively than it should. Symptoms may include fever, nausea, fatigue, and body aches.
Another potential side effect is neurotoxicity, which may cause negative effects on the nervous system such as confusion, difficulty speaking or understanding, loss of balance or consciousness, tremors and seizures.
And blood count recovery can be slower following CAR T-cell therapy.

So, what should you ask your doctor about CAR T-cell therapy?

Is CAR T-cell therapy available at this cancer center?
Is CAR T-cell therapy an option for me now or in the future?
What is the cost of this therapy?
What are the risks and benefits of this approach?
What can I expect during the recovery process?

To learn more about innovative myeloma therapies and to access tools to help you become a pro-active patient, visit powerfulpatients.org.

Myeloma Office Visit Planner

December 9, 2022/in IMT Resources, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC /by Kara Rayburn

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Myeloma Take Action Checklist

December 9, 2022/in IMT Resources, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC /by Kara Rayburn

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Take Action Checklist

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Expert Advice for Navigating Myeloma Treatment and Care Decisions Guide

November 10, 2022/in INSIST! Myeloma, MM Insist Guides, MM Newly Diagnosed, MM Programs, MM Resources ND, MM Resources TC, MM Treatments and Clinical Trials, Multiple Myeloma /by Kara Rayburn

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Myeloma Clinical Trials 201 Resource Guide

November 8, 2022/in MM CT 201, MM CT 201 Guides, MM Newly Diagnosed, MM Programs, MM Resources ND, MM Resources TC, MM Treatments and Clinical Trials, Multiple Myeloma /by Kara Rayburn

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How Is CAR T-Cell Therapy Changing Myeloma Care?

October 31, 2022/in IMT Interviews, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC /by Kara Rayburn

How Is CAR T-Cell Therapy Changing Myeloma Care? from Patient Empowerment Network on Vimeo.

Dr. Abdullah Khan discusses how CAR T-cell therapy works to treat myeloma, the currently approved CAR T-cell therapies, and the outcomes related to progression free survival (PFS) for patients with heavily pre-treated myeloma.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Khan.

Related Resources:

Immunotherapy: Which Patients Is It Right For?

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

What Are the Risks of CAR-T Cell Therapy?

Transcript:

Katherine:

Let’s talk about CAR T-cell therapy. How is CAR T-cell therapy changing the field?

Dr. Khan:

Myeloma was a little late to the CAR-T game, but we’re very happy it’s here. The two products approved in myeloma are idecabtagene vicleucel, ide-cel for short, and ciltacabtagene autoleucel, or cilta-cel for short.

So, the way CAR Ts work, they are customized T cells for each individual patient. You collect the T cell from the patient with myeloma. You reengineer them in the laboratory to produce proteins on their surface called chimeric antigen receptor. That’s CAR portion of the CAR T therapy. And these CARs recognize and bind specific proteins on the surface of multiple myeloma.

So, these genetically modified T cells are then expanded or multiplied to make millions of cells. They’re sent back to the hospital where they were collected, where the patient is. And they’re infused back into the patient. The hope is that these modified cells, these CAR T cells, will continue to multiply in the patient. And with guidance from that engineered receptor, they will recognize and kill multiple myeloma very effectively.

So, I can provide some numbers to the outcomes of the two approved CAR T cells – CAR T products in multiple myeloma. The first approved was ide-cel in patients with a median of six prior lines of therapy, a single dose of CAR T was able to produce an objective response rate – that’s how many people responded to the treatment – of 73 percent, and the median, the middle person, progressed after 8.8 months of getting this treatment. The other product, cilta-cel, was also studied in patients with a median of six prior lines of therapy, and the objective response rate was an astounding 98 percent.

Katherine:

Wow.

Dr. Khan:

And the median progression-free survival is actually not yet reached. So, these are remarkable results with heavily pre-treated myeloma. And the myeloma community’s very excited to actually bring these treatments to earlier lines of therapy such as a newly diagnosed patient with multiple myeloma.

Myeloma Expert Debunks Common Clinical Trial Misconceptions

October 31, 2022/in MM CT 201, MM CT 201 Know, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

Myeloma Expert Debunks Common Clinical Trial Misconceptions from Patient Empowerment Network on Vimeo.

Dr. Abdullah Khan, a myeloma specialist, shares advice for individuals that may be hesitant to participate in a clinical trial, reviews the phases of trials, and explain the informed consent process.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Abdullah Khan.

Related Programs:

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team

The Benefits of Participating in a Myeloma Clinical Trial

Transcript:

Katherine:

What would you say to someone who’s hesitant in participating in a trial?

Dr. Khan:

Well, the decision to participate is complex and personal, but the ultimate decision regarding trial participation rests with the patient. So, some of the reasons why patients might be hesitant, they might have distrust toward the medical community given the history of clinical trials in this country. If we take the example of the abuse of African American patients during the Tuskegee syphilis experiments, that’s just one example.

Katherine:

Yeah.

Dr. Khan:

Another reason patients might be hesitant is they don’t like the idea of being randomized to the treatment that they’re going to get.

So, they might end up getting a placebo. They might get another standard of care. And they might not get that new, fancy drug. So, giving up that level of control does require some compromise. Another reason is the uncertainty of the potential side effects of the chemotherapy drugs, especially if you’re participating in an early-phase clinical trial.

Furthermore, trials require very defined and frequent monitoring sometimes. So, some patients might not like the time commitment to a clinical trial. Another reason might be that there are concerns for cost. I can alleviate that concern by saying that typically there are mandates that the insurer cover the routine costs of clinical trials.

Katherine:

You mentioned some misconceptions. Are there any others that patients might have about participating in a trial?

Dr. Khan:

I guess the two most common things, the first one, and I think all providers have heard this, “I will be treated like a guinea pig.”

Katherine:

Yeah.

Dr. Khan:

For me, that is probably the furthest from the truth because of all the safeguards in place. Clinical trial participants are followed the most closely and probably get more medical attention than someone who is not on clinical trial. To participate in the clinical trial, the participant has to voluntarily – and that’s the keyword – sign an informed consent form. And finally, the participant can also leave the trial at any time for any reason.

Another common misconception is that clinical trials of dangerous because they use untested drugs. There might be some truth to that. There are many phases to clinical trials. And in some early-phase clinical trials it is true that participant may actually be the first to ever get the new therapy.

So, some of the outcomes are not known. But in late-phrase clinical trials, tens to thousands of patients may have already been treated with the study drug, so there a lot of preliminary safety data and also efficacy data.

The Benefits of Participating in a Myeloma Clinical Trial

October 31, 2022/in MM CT 201, MM CT 201 Know, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

The Benefits of Participating in a Myeloma Clinical Trial from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Abdullah Khan discusses why myeloma patients should consider joining a clinical trial, addresses safety protocols for trials, and shares how participation in research advances medicine.

Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Abdullah Khan.

Related Programs:

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team

Myeloma Expert Debunks Common Clinical Trial Misconceptions

Transcript:

Katherine:

I’d like to turn to clinical trials now. Why should a myeloma patient consider participating in a clinical trial?

Dr. Khan:

The main potential benefit to a patient includes getting a new treatment for a disease before it’s even approved for other patient with multiple myeloma. Sure, clinical trials have risks and benefits, but participating in a clinical trial is probably also safer than ever.

What I mean by that is clinicians that participate in clinical trials are required to follow very strict rules and guidelines to make sure the participants are safe, and these rules are enforced by the federal government. Each clinical trial also follows a careful study plan, or protocol, and that describes what researchers will do and when they will do it.

And the principal investigator, or the lead researcher, for that clinical trial has the responsibility that the protocol is followed at every site that the study is available. So, generally, that also means participants will get more frequent health checkups as being part of the clinical trial. And by volunteering for a clinical trial, patients are helping themselves and also the general society for patients afflicted with multiple myeloma.

Katherine:

Right. Everyone who comes after them would be impacted. Why is patient participation in myeloma clinical trials critical to advancing research?

Dr. Khan:

Clinical trials help researchers better understand health and disease. Clinical trial participation is actually considered the gold standard of providing medical healthcare.

And, in fact, every therapy that is currently approved for myeloma right now is a direct consequence of participation of brave volunteers.

Making Myeloma Treatment Decisions at Every Stage of Care Resource Guide

October 18, 2022/in Downloadable Guides, Engaging in Myeloma Treatment Decisions, MM Newly Diagnosed, MM Programs, MM Resources ND, MM Resources TC, MM Treatments and Clinical Trials, Multiple Myeloma /by Kara Rayburn

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What Are the Risks of CAR T-Cell Therapy?

September 30, 2022/in IMT Interviews, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC /by Kara Rayburn

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.

Related Resources:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

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.

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

September 30, 2022/in IMT Interviews, Innovative Myeloma Therapies, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC /by Kara Rayburn

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina discusses the evolution of myeloma treatment over the past several years, including an explanation of the two FDA-approved CAR T-cell therapies available for myeloma patients.

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.

Related Resources:

What Are the Risks of CAR T-Cell Therapy?

Is It Too Late for a Myeloma Second Opinion?

How Long Will Myeloma Maintenance Therapy Last?

Transcript:

Katherine:

I’d like to start by talking about innovations in myeloma therapy. How have treatment options for myeloma evolved over the past several years?

Dr. Alsina:

Yeah, well, the easy answer to that is dramatically. It’s really amazing, the number of advances that we’ve had in the treatment. When I think 20 to 25 years ago, we had two drugs for myeloma, rare opportunity to get any patient in complete remission.

And now, we have many, many drugs, we continue to have bone marrow transplants, now we have CAR-T cellular immunotherapies, and able to get patients – over 80 percent of the patients in remission up front, and even in the relapse setting, many of them with CAR-T, for example. One of the CAR-Ts is able to get 80 percent of the patients in remission, so it’s really incredible, the amount of advances.

Katherine:

Yeah. How is CAR T-cell therapy changing the field?

Dr. Alsina:

So, we – probably everyone knows that there have been two CAR-T products approved for myeloma in the past year. We’re not doing as good as the lymphoma group. Those were the first CAR-T cells, were approved for lymphoma/leukemia, and for those patients with lymphoma and leukemia, there’s an opportunity for a cure, whereas in myeloma, in the setting that we’re using CAR-T right now, which is for patients that have failed multiple lines of therapy, at least four prior lines of therapy, those patients are not cured.

Katherine:

Yeah. You mentioned that there are two CAR T-cell therapies available right now for myeloma patients. What are they?

Dr. Alsina:

So, the first one, that was approved in March of last year the commercial name is Abecma. This is made by a company that is called BMS. It targets BCMA, which is B-cell maturation antigen, which is the protein that is preferentially expressed in the myeloma cells, so it’s a really good target for myeloma, and this is the one that studies show that we get response rates at about 75 to 80 percent with remission rates about 40 percent, and in the real world, since Abecma was approved, we’ve treated many patients – at Moffitt, actually, I think we have the largest number in the whole United States, close to 60 patients, and we’re seeing the same.

So, really, when we translate that to the real world, we’re seeing the same results, and I would argue that perhaps better because the patients that go on trial are very selective patients – they need to have good counts, they cannot have renal insufficiency, all this different criteria, and actually, when we looked at it, we found that 71 percent of the patients that we treated in the real world with Abecma would not have been eligible for trial, but yet, we’re getting the same results – the same results in terms of efficacy and the same results in terms of safety.

Katherine:

What is the second CAR T-cell therapy available?

Dr. Alsina:

The second CAR-T was approved just recently, in February of this year, and that is cilta-cel. The commercial name for this is Carvykti, and this one, we do not have a lot of real-world experience because the manufacture and availability of the product is still very limited, so we only have been able to do two patients per month with Carvykti. However, the studies show this agent to be extremely effective, with response rates close to 100 percent and a complete remission rate of 80 percent, which is…

Katherine:

That’s phenomenal.

Dr. Alsina:

Right? It’s phenomenal for this patient population. So, we’re definitely very excited with this. I think a major issue with CAR-T that you may or may not have heard – I’m pretty sure all the patients are aware of this, but it’s the availability. When these products are approved, because these products have to be manufactured from the patient cells, the companies cannot release – cannot meet the demand, so there are a lot more patients that need CAR-T than product availability.

So, we have a waiting list, and this is true for all centers. With the first product, with ide-cel/Abecma, now, at least, in our center, we have been able to catch up a little bit. We’re getting about eight slots per month, so it’s a significant amount. We still are not able to offer it to every single patient that needs it at the moment, but we’re doing much better than the beginning.

As I mentioned before, with Carvykti, it’s still a significant challenge, and again, we’re getting maybe one or two slots per month. Talking with these companies, they expect that is going to improve by early next year, so we’re keeping our fingers crossed because right now – and this is true for us and many myeloma centers – we have over 100 patients in the waiting list.

But in any case, even with that, I would encourage any patient that needs CAR-T to go to a center because even though we have a long list, for example, some of those patients that are on the list, they don’t need CAR-T right now, so it doesn’t mean that 120 patients on the list need CAR-T at the moment. So, we normally would go down the list according to when we saw the patient, and then the needs of the patient at the moment that we have a slot, and that’s how we make our selection.

So, the ideal situation is the patient seeks a CAR-T consult early on. Don’t wait until you have failed four therapies to go. When you start your third line of therapy, go, because then you get on the list. By the time you really need it and are eligible to get it, then it might be accessible to you.

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

September 30, 2022/in MM CT 201, MM CT 201 Know, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team. from Patient Empowerment Network on Vimeo.

Considering participation in a clinical trial can bring up a lot of questions. Myeloma expert Dr. Melissa Alsina shares advice and key questions patients should ask their healthcare team before joining a myeloma clinical trial.

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.

Related Programs:

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

Defining the Myeloma Patient Role in Their Care

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Transcript:

Katherine:

When a patient is considering participating in a clinical trial, what sorts of questions should they ask their healthcare team?

Dr. Alsina:

I think the number one thing is “How can this help me? What is the potential for this treatment?” The other very important thing is “What are the potential side effects? Has this been done before in other patients? Do you have any experience? What do you think are going to be the side effects or additional risk compared to getting the standard of care?”

And then, I think the third thing is “How much commitment do you need from me?” Because there is no doubt that clinical trials require a lot of commitment. When we are doing a clinical trial, we, for example, have to give all the drugs in the center, usually. Let’s say I’m testing Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) followed by CAR-T, for example in patients with high-risk myeloma. That’s one of the studies.

Yeah, you could get Revlimid, Velcade, and dexamethasone anywhere. Those are approved drugs. But if you are participating in a clinical trial, you have to get it at Moffitt or at the center, which means patients traveling back and forth, so that is very important because it requires a lot of commitment from the patients. And I think, on that line also, you can ask as a patient, “Well, what are the resources there in the clinical trial that can help me make that commitment?”

Frequently, clinical trials help patients by paying for their transportation, their gas, their accommodations if they have to stay overnight, to be able to comply and meet all those different visits.

Understanding the Role of Clinical Trials As a Myeloma Treatment Option

September 30, 2022/in MM Access and Affordability, MM CT 201, MM CT 201 Understanding, MM Newly Diagnosed, MM Programs, MM Treatments and Clinical Trials, MM Videos AA, MM Videos ND, MM Videos TC, Multiple Myeloma /by Kara Rayburn

Understanding the Role of Clinical Trials As a Myeloma Treatment Option from Patient Empowerment Network on Vimeo.

When it comes to myeloma treatment options, where do clinical trials fit in? Dr. Melissa Alsina of Moffitt Cancer Center discusses the role of clinical trials in a myeloma treatment plan at every stage of a patient’s care.

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.

Related Programs:

Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.

Is It Too Late for a Myeloma Second Opinion?

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

Transcript:

Katherine:

When it comes to myeloma treatment options, where do clinical trials fit in?

Dr. Alsina:

They fit everywhere, essentially. They fit everywhere because myeloma – even though we have many, many advances, it’s a disease that we cannot cure, so there’s still a lot, a lot of work to do, so we have trials for newly diagnosed patients, improving what we do at newly diagnosed, bringing in some of those therapies, for example, like CAR-T up front, and then we have trials for early relapse/late relapse, because again, yeah, we’ve done a lot and we feel very encouraged by that, but we’re short because we have not been able to cure myeloma.

So, it’s super important, and it’s super important that patients reach out to myeloma centers to see what is available for them because participating in a clinical trial, number one, gives a patient a unique opportunity to get something more than standard of care, something that might make their response better or their survival better.

That’s one thing, and the other thing is the only way we’re able to move the field forward is doing clinical trials and having patients participating in clinical trials, and the reason today I can sit here and tell you that the treatment of myeloma has evolved dramatically in the last 20 years, and now we have these responses that are amazing that were unheard of, is thanks to the many patients that have participated in clinical trials.

Without that, obviously, we would not be here with these results. But that needs to continue. I think we cannot rest because there are still patients that die from myeloma. We cannot lose the perspective that this is still an incurable disease and there’s still a lot of work to do, and the only way to get there is to continue doing the research.

Katherine:

It sounds like clinical trials are also available for patients who have already been treated with another therapy. Is that right?

Dr. Alsina:

Absolutely. Clinical trials are available for all the different stages of the disease – when you are newly diagnosed, when you have your first relapse, when you have your second relapse.

Katherine:

Anytime through the process.

Dr. Alsina:

Anytime, anytime, and there are clinical trials – the clinical trials not only help us test new drugs or new combinations of drugs, but it also helped us understand the disease better. The majority of clinical trials, we do what we call correlative studies, where we get a sample of the patient, the bone marrow of the patient, for example, before and after therapy, and we see what are the changes that we see there and what are the genes that dictate that response or lack of response.

So, clinical trials not only help us improve outcomes in patients, but it also helps us understand the disease better that leads to other new therapies and other clinical advances. This can translate into new clinical advances.

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

September 20, 2022/in MM Blog ND, MM Blog TC, MM Newly Diagnosed, MM Treatments and Clinical Trials, Multiple Myeloma, Patient Stories, PEN Blog, Women Patient Stories /by Kara Rayburn

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

Insist on seeing a myeloma specialist
Take care of yourself physically and emotionally
Look for people/support and allow them to help you
Live for now

Myeloma care partner and advocate, Carleigh’s advice:

During every appointment have at least one note taker
Ask for a hard copy or print out of everything
Create a way to stay organized
Keep a list of questions
Have a mindset of persistence and perseverance, and to maintain hope

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Part 1

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