Tag Archive for: treatment goals

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

Related Resources:

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.  

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

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.

See More from Innovative Myeloma Therapies

Related Resources:

What Are the Risks of CAR T-Cell Therapy?

Is It Too Late for a Myeloma Second Opinion?

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.

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.

See More from Myeloma Clinical Trials 201

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Understanding the Role of Clinical Trials As a Myeloma Treatment Option

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Defining the Myeloma Patient Role in Their Care

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Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

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

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.

See More from Myeloma Clinical Trials 201

Related Programs:

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

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

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings

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 

Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina, of Moffitt Cancer Center, provides an explanation of minimal residual disease (MRD) and how she uses MRD in patient 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.

See More From INSIST! Myeloma

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Transcript:

Katherine:

What is MRD, and what does it mean for patients? 

Dr. Alsina:

So, MRD stands for minimal residual disease. So, it means that if a patient is in complete remission, what it would mean is that I don’t see any myeloma cells in the bone marrow and I don’t see an M spike. The M-spike is zero in the blood and in the urine, and the light chains are fine.  

But even with that, there maybe be some disease that is residual that I can’t see by conventional methods, so there’s two methods that have been developed that are able to detect one cancer cell in a million cells. 

Katherine:

Wow. 

Dr. Alsina:

So, if I have a patient that is in complete remission, I can use one of those methods to look, and that will tell me if the patient still has minimal residual disease or not. 

So, the reason why it is important is because there are many studies that have shown that if I can get a patient to be minimal-residual-disease-negative, no evidence of disease by those two tests – that I can explain a little bit more if you want – then those patients are going to do better, their response is going to last longer, and the patients are going to live longer. 

So, nowadays, with our better treatments, we use also that as a goal. We say okay, I not only want to get a patient in a complete remission, I want to get that patient to MRD negativity.  

And we do adjust our therapy to get there. As an example, I can do a transplant in a patient, and three months after transplant, I look at that minimal residual disease. If it’s negative, then I do Revlimid (lenalidomide) maintenance, which would be standard of care. If it’s positive, I use two drugs to try to get that patient to that MRD-negativity level, and there are many studies right now looking at how to adjust our treatment based on response. 

How Do Test Results Impact Myeloma Treatment Options?

How Do Test Results Impact Myeloma Treatment Options?  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina reviews the test results that are taken into consideration when choosing a treatment approach for 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.

See More From INSIST! Myeloma

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Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions


Transcript:

Katherine:

We know that patients undergo testing when diagnosed. How do test results affect treatment choices? 

Dr. Alsina:

So, in general, we do a bone marrow, we check for the genetics of the myeloma cells, see what are the genes that are affected in the myeloma cells, and that helps us define myeloma as high-risk or standard-risk, and that can help us decide what treatment we want to give these patients. Unfortunately, it’s not totally well defined. 

I wish we could use that in a better way and there are drugs that could really target, but there is some information. We know, for example, that proteasome inhibitors are important for patients with high-risk myeloma, so we definitely try to include that in a patient that is high-risk, and the other thing is that patients that are high-risk, it’s even more important to get to that remission, so we’re going to push treatment to get there, treat these patients a little bit more aggressively. 

Other than that, depending on, for example, what are the blood counts – some patients have a lot of bone marrow involvement and their blood counts are very low. This is not common, but it happens, and so, when that happens, we might be more aggressive up front and give these patients more aggressive chemotherapy to clean the bone marrow before changing them to the more normal therapies because the treatments that we give, like Revlimid (lenalidomide), Velcade (bortezomib), Darzalex (daratumumab) can depress the counts, right? 

So we’re in that battle. The patients already have low counts, we give the treatment, the treatment lowers the counts further, so it’s hard to give these treatments in these settings. And then, the third thing that we take into account is kidneys. About 25 percent of the patients will have renal insufficiency when they are diagnosed. Some of these drugs, particularly the immunomodulatory drugs like the Revlimid are metabolizing the kidneys, so it’s very hard to dose these drugs when the patients have renal insufficiency. 

So sometimes, for these patients, we avoid the IMiDs up front. We give a different combination until the disease gets better, and then we introduce the IMiDs. We think these immunomodulatory drugs like Revlimid are super important in the treatment of myeloma, so we want to give them, but sometimes we have to delay starting them until the patient’s kidney function improves.  

Collaborating on Lung Cancer Treatment Decisions With Your Team

Collaborating on Lung Cancer Treatment Decisions With Your Team from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil discusses why active communication between patients and their healthcare team is essential when making care and treatment decisions.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

See More from Thrive Lung Cancer

Related Resources:

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Expert Advice for Setting Lung Cancer Treatment Goals

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

Where does shared decision-making come into play? When does it come into play?  

Dr. Patil:

It comes in always.   

So, shared decision-making is one of the most important things that patients can do with their providers. It’s really important when we think about treatments to not just be very cookie cutter and follow a recipe book for managing a patient’s lung cancer. It’s really important to individualize therapy. This is really important where patients’ values come in. What patients want to do with the time that they have, and what patients want to do with the treatment? How do they want to take certain treatments?  

So, for example, I have a patient who’s a violinist and was faced with the possibility of receiving a type of clinical trial, but this trial caused neuropathy or numbness or tingling and would essentially render this patient unable to play the violin. This was an unacceptable treatment option for this patient, even though the data would suggest that it would work.  

And that’s an example of where shared decision-making comes in because it’s more than just treating numbers. It’s really about taking care of people. 

Katherine:

Yeah. Why is active communication between the patient and lung cancer team so important? 

Dr. Patil:

Active communication is really important because it’s really one of the easiest ways for things — So, a breakdown of communication rather is a one of the easiest ways for gaps to occur in care. And when there is active communication, when a patient feels like they have an opportunity to reach their team members to connect with their providers, it builds trust. And I think trust is one of the more important elements in the management of patients. If patients can trust their provider and trust that their judgment is sound, then there is more likely to be a harmonious relationship that facilitates the shared decision-making.  

Katherine:

When a patient is in active lung cancer treatment, how are they monitored? 

Dr. Patil:

So, patients are monitored in a variety of ways. If they’re receiving chemotherapy or immunotherapy, typically a provider will see the patient with each infusion cycle. And so, depending on the length of time and the schedule of infusions, that sort of dictates how frequently we see our patients. When patients are receiving targeted therapies, specifically the pill-based forms, they can be monitored in concordance with the NCCN guidelines. And in my practice, I typically see patients every three months with imaging.  

Now, if patients are having a hard time tolerating treatment, so they’re taking their oral pills but for whatever reason, we’re having a ton of side effects, we’re trying to figure out the dose. I might see my patients more frequently. But as a standard, if patients are tolerating their targeted treatment well, their scans look good, I usually see them every three months.  

Expert Advice for Setting Lung Cancer Treatment Goals

Expert Advice for Setting Lung Cancer Treatment Goals from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil, a lung cancer specialist from the University of Colorado Cancer Center, shares advice on how lung cancer patients can work with their healthcare teams to set treatment goals.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

See More from Thrive Lung Cancer

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Expert Advice for Recently Diagnosed Lung Cancer Patients

Collaborating on Lung Cancer Treatment Decisions With Your Team

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

When someone is considering therapy for non-small cell lung cancer, what advice do you have for setting treatment goals with their team? 

Dr. Patil:

So, non-small cell lung cancer has seen some remarkable progress in the last 20 years, but it’s still a very serious disease. One of the main expectations I set with patients is that I will guide them through this journey, but that there’s going to be a lot of changes in their day-to-day. When we look at someone who’s receiving targeted therapy, in general I upfront tell patients that the model that I’m trying to emulate with targeted therapies is very similar to HIV. I remind patients that in 2022, we still cannot cure HIV, but we can give a very effective antiviral therapies that put their viral count to zero.  

And patients with HIV now can live really full rich lives. And that’s the model that we’re trying to replicate with targeted therapies. With immunotherapies, I set patients the expectation that immunotherapy has been a major advance in the management of lung cancer. And many patients are living very full lives as a result of using immune therapies. But it’s not for everyone, and I do enforce and or rather emphasize is a better word, the concept of taking things day-by-day. I think it’s really helpful when patients have a diagnosis like this to not spiral out of control and think about all possible future outcomes, but to really work with the data that we have at the moment.  

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion? from Patient Empowerment Network on Vimeo.

When is the best time to seek a second opinion? Dr. Joshua Richter discusses the benefit of seeking a consult with a myeloma specialist to optimize your care.

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 Thrive Myeloma


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How to Thrive and Set Myeloma Treatment Goals

How to Thrive and Set Myeloma Treatment Goals

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What Are Relapsed and Refractory Myeloma?

What Are Relapsed and Refractory Myeloma?


Transcript:

Katherine:

Randall writes, “I was diagnosed last year with myeloma, and my first treatment worked, but now I’ve relapsed. Is it too late to consider a second opinion or a consult with a specialist? Would that change anything?   

Dr. Richter:

It’s a phenomenal question. There have actually been studies to show that if you engage with a myeloma center at least once within your myeloma journey, you do better than someone who has never done that. So, it is never a bad time to seek out a specialist. And one of the good things that came out of COVID is telemedicine. So, if there’s not someone right in your area, reaching out to some of our advocacy groups to help connect you to physicians like me or any of my colleagues, we’re more than happy to see anyone, I’ll see you with an MGUS that’ll never bother you, as will all of my colleagues and people who work in myeloma.   

If you’ve had one prior line, 15 prior lines, anywhere in between. So, I think it’s always a good idea to see a specialist because he or she is more than happy to work with your local doctor to optimize your treatment without having to necessarily go to another center.

How Long Will Myeloma Maintenance Therapy Last?

How Long Will Myeloma Maintenance Therapy Last? from Patient Empowerment Network on Vimeo.

Dr. Joshua Richter, a myeloma specialist, reviews the goals of maintenance therapy and discusses the timeline for this type of treatment.

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 Thrive Myeloma


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Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions

What Myeloma Patients Should Know About Treatment Monitoring

What Myeloma Patients Should Know About Treatment Monitoring


Transcript:

Katherine:

Isaac sent us this question. How long does the average myeloma patient remain on Revlimid? And is there a suggested time period? 

Dr. Richter:

Really great question. It depends upon the setting we’re looking at, and for the most part, a lot of people are probably asking about the maintenance setting. So, after initial therapy or after transplant, we put you on Revlimid. How long do we keep you on? The American adage has always been, “More is better,” so as long as you tolerate it and as long as it works. Outside of the U.S., they’ve done a couple of studies looking at one year and then stopping, or two years and then stopping.  

And in a big trial that got presented a year or so ago, they compared the two years then stopping versus just staying on, and the people who just stay on do better.  

So, now the current thinking is just keep you on long-term. What’s going to change that in the long term is we’re starting to use a technology called MRD, minimal residual disease, so, doing a marrow and trying to find one in a million or one in 10 million cancer cells.   

And then, there’s something called sustained MRD meaning if you do two MRD analyses at least 12 months apart and they’re both negative, we call that sustained MRD-negative.   

And, there’s a hint that some people on maintenance Revlimid who have sustained their MRD negativity, they may do just as well stopping versus staying on it. We don’t know exactly who that is yet, but that’s going to be better understood in the next few years.  

What Myeloma Patients Should Know About Treatment Monitoring

What Myeloma Patients Should Know About Treatment Monitoring from Patient Empowerment Network on Vimeo.

How do you know if your myeloma treatment is working? Dr. Joshua Richter, a myeloma specialist, reviews how treatment response is measured in myeloma and why it’s important to share any symptoms or side effects with the healthcare team.

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.

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Transcript:

Katherine:

So, once treatment has begun, how do you know if it’s working? 

Dr. Richter:

Absolutely. So, the majority of myeloma patients are what we call “secretory.” And by “secretory,” it means that the cancer cells secrete a protein that we can measure in the blood either an M-spike, which is an intact immunoglobulin like IgG and kappa, or a free light chain. It doesn’t make that IgG part, just a free kappa or free lambda. And basically, when these protein levels go up, we know the cancer cells are growing. When these go down, we know we’re killing the cancer cells. And we actually call your remission based on how much we lower it.  

If we lower it 25 to 49 percent, that’s an MR or minor response, or minor remission. 50 to 89 percent is a PR, partial response, partial remission. 90 to 99 percent is a VGPR, a very good partial remission, and then all gone in the blood and then we do a bone marrow is a CR or complete remission.  

For some people, their disease can be non-secretory where the cancer cells don’t make that protein anymore.  

And for those people, we need to do regular imaging to see if they have growths of myeloma we call plasmacytomas, or unfortunately, we need to do regular bone marrow biopsies to see how much of the bad cells are growing inside the marrow. 

Katherine:

All right. How do you know when it’s time to switch treatment? 

Dr. Richter:

So, in general, when patients fulfill the criteria for what we call “progressive disease” or PD, that’s the time to change, or intolerance that regardless of how we dose adjust, dose hold or add supportive care, it’s not tolerable for a patient to continue.  

Intolerance is a very personal thing. There are things that certain people are willing to tolerate and others not. So, we try to adjust that. Just like we have criteria for response, PR, VGPR, we have criteria for progression. And in general, it’s a 25 percent increase from your baseline and 0.5 increase in your M-spike or 100 increase in your light chains. So, when the disease numbers are going up, we tend to switch.  

Now, people may say, “But I feel fine,” and a lot of this is because you’re diagnosed with an amount of disease up here. We get you in remission, you’re down here. And once you go like this, we can see the writing on the wall and we’d rather be proactive than reactive. So, instead of waiting until the numbers get up here to cause trouble, once it goes from there to there, we intervene, change therapy to bring it back down. 

Katherine:

Dr. Richter, why is it essential for patients to share any issues they may be having with their healthcare team?  

Dr. Richter:

It is absolutely crucial because some things that may be very, very minor to them may be the tip of the iceberg of something very, very worrisome that we really need to investigate because sometimes, little problems are little now, and over time, they can become problems that we can’t so easily reverse. So, things like neuropathy, fatigue, or actually better yet, what I tell my patients is, “You know your body. If there is something out of the ordinary, big or small, let us know.”  

And I would way rather a patient tell me 10 things in a row that mean nothing than not tell me about that one thing that means something.  

So, for example, one of the disorders that’s associated with myeloma is called amyloidosis.  

And when amyloid attacks the kidneys, you start to have protein in the urine, and this looks like bubbles, like foam in the urine. So, if someone has no foam when they urinate, and then over a period of months to years, they’re starting to notice lots of foam, tell me because that means we may need to look for things like amyloid.  

So, really any time something changes.  

How Can Myeloma Treatment Impact Kidney Health?

How Can Myeloma Treatment Impact Kidney Health? from Patient Empowerment Network on Vimeo.

Dr. Joshua Richter discusses the impact of myeloma treatment on the kidneys and provides key advice for optimal kidney health.

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.

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Transcript:

Katherine:

Are kidneys impacted by any of the medications that patients take? 

Dr. Richter:

So, kidneys are an excruciatingly important part of myeloma, and in my mind, one of the keys to long-term survival and outcome. So, there are three things that I tell all of my patients to help preserve long-term kidney health. Two of them are easy to wrap the head around. One is a little bit harder. Number one, keep yourself well hydrated. The kidneys are like a filter. Think, like, the filter for your car. If you drove 100,000 miles in the desert and didn’t change your oil, there’d be problems. So, especially now that there’s warmer weather, by the time you already feel yourself dehydrated, you’re about 10 to 15 percent low on the total amount of body water you need.  

So, especially if you’re going out there doing yard work, playing with the kids or grandkids, make sure you’re drinking plenty of water. Two, avoid NSAIDs. Drugs like Aleve, or naproxen, or Advil, or ibuprofen can be harmful to the kidneys. So again, please discuss with your care team. There may be better alternatives to treat your pain without hurting the kidneys. And the third is when all else possible, avoid intravenous contrasts for CAT scans. Now, the IV contrast you get for MRIs is called gadolinium. It’s not harmful to the kidneys. But the contrast for CAT scans is iodine-based, and although the newer formulations are better, it can still hurt the kidneys.   

So, my advice is the following. If you’re in the ER at 2:00 a.m. in the morning and they want to do an urgent CAT scan with IV contrast, let them do it. It’s likely not going to be an issue. If you go to see an orthopedist and they say, “I want to get a better look at that leg that’s bothering you. I’m going to get a CAT scan with IV contrast,” tell them to call me. We’ll find an alternative. 

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions from Patient Empowerment Network on Vimeo.

Treatment for myeloma varies from one patient to the next. Dr. Joshua Richter, a myeloma specialist, reviews the factors that are considered when choosing a treatment approach.

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.

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Transcript:

Katherine:

What I would like to look at is because everyone’s different, what’s going to work for one patient might not work for another. So, how do you choose which treatment is right for a patient? 

Dr. Richter:

Really great question. So, unfortunately, myeloma, we don’t have the granularity just yet to say exactly what’s going to work for everyone. Our goal is to kind of be what I like to think of as urinary tract infections. You have a UTI, you pee on a dish, we put little discs of antibiotics and a couple of days later, we’re like, “You have an E. coli and Cipro will work.” You get the Cipro, and it goes way. We don’t really have that outside of a few drugs. We do know that the drug venetoclax works really well in people who have a very specific type of translocation in their myeloma cells, something we call translocation (11;14).  

But for the most part, we don’t know, and we have lots of options and we decide what drugs to use based on three factors: disease-related factors, treatment-related factors, patient-related factors. So, patient-related factors. Are you older or younger? Fit or frail? Do you have comorbidities? If you have a lot of neuropathy from diabetes, I don’t want to give you a drug that’s going to cause more neuropathy. If you have a lot of cardiac issues, I’m not going to give you a cardiac drug. Disease-related factors. Is your disease growing fast or slow? Can I give you some pills or do I need to give you intravenous immediately to stop it? Is it pressing on a nerve? Do I need to add radiation?  

So, those are some of the big factors. And then, treatment related factors. Have you had certain other drugs? So, if you’re refractory to Revlimid, I may not want to give you Revlimid again. 

If you have a lot of side effects or didn’t respond well to Revlimid, I may not want to use another drug similar to Revlimid like Pomalyst.  

I may want to choose another class. So, that’s kind of putting all of that together to come up with a treatment choice because there’s no clear guideline. 

What Are Relapsed and Refractory Myeloma?

What Are Relapsed and Refractory Myeloma? from Patient Empowerment Network on Vimeo.

Dr. Joshua Richter, a myeloma specialist, explains what it means to have relapsed myeloma or refractory myeloma.

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.

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What Are Common Myeloma Treatment Side Effects?


Transcript:

Katherine:

Let’s define a couple of terms that are often mentioned in myeloma care. What does it mean to be refractory, and how is that different from relapsing? 

Dr. Richter:

Great question. So, these terms have very specific definitions in myeloma. “Relapsing” just means that the disease is coming back. So, you had myeloma that was measurable, you went into a remission, and now it is showing signs that it’s coming back. We call that “relapsing.” And depending upon what type of myeloma, we have specific definitions. So, if you’re IgG kappa and you make an M-spike, if your M-spike goes up at least 0.5 and at least 25 percent, we call that “relapsing.” If you’re a light chain, it’s gotta go up by at least 100. But you’ve got to make sure the units are right.  

“Refractory” means that you either did not respond or you’re progressing on or within 60 days of your last treatment.  

So, I put you on Revlimid maintenance, and you’re on Revlimid, and your disease gets worse. You are now relapsed and refractory to Revlimid. If I give you a transplant and then I put you on nothing, and two years later your disease comes back, you’re relapsed but not refractory.  

Defining the Myeloma Patient Role in Their Care

Defining the Myeloma Patient Role in Their Care from Patient Empowerment Network on Vimeo.

Why should myeloma patients speak up and be active partners in their care? Dr. Joshua Richter, a myeloma expert at Mount Sinai, explains the importance of communicating with your healthcare team and the difference it can make in your overall care.

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.

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What Myeloma Patients Should Know About Treatment Monitoring

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How Long Will Myeloma Maintenance Therapy Last?


Transcript:

Katherine:

Well, tell me what you think the patient’s role is, then, in setting care goals.

Dr. Richter:

Absolutely. The patient has the most crucial role of course. And, one of the things is honesty and really being to a point of brutal honesty with how they’re doing. I always tell patients, “You don’t get extra points for suffering. It’s not that if you sit there in pain you’re going to do better. Let me know what type of pain you’re having.” And pain doesn’t just mean a bone is hurting, or a muscle’s hurting, we call somatic pain.

There can be neuropathic pain where the nerves hurt.

There can be emotional and spiritual pain. These things all need to be addressed. And if you are suffering in silence, we have a lot of tools nowadays not just medicines. We have people to talk to. We have resources. So, letting us in to help is one of the most crucial things because we’ve actually shown that if you actually improve some of these, you may actually improve overall outcomes. So, the patient, please, all we want to do on the care side of the equation is help.

Let us know what’s bothering you. It may be small to you, it may be big to us, or vice versa, but the more open you are, the better we can help.

Katherine:

What advice do you have for patients to help them feel confident in speaking up and becoming a partner in their care? 

Dr. Richter:

So, that’s not always easy for a lot of people to do, and for some people, no problem. They’ll speak up at the first sign of anything. One bit of advice I would give to people who may have concerns or may not feel as comfortable about doing this is first of all, there’s a lot of members of the care team. So, I have patients that may not want to mention it to me, but mention it to my nurse or the medical assistant, and we all talk. So, that’s one way.  

The other thing that I think may help is involvement in patient support groups, hearing what others have to say about similar experiences and learning from them, them learning from you, and that may actually give you more of a confidence to speak with your care team. But the advocacy groups like the MMRF and IMF have tons of local support groups where you can sit in, and specialists come and speak or people share stories. And I think that can be really helpful to figuring out your optimal journey.