Tag Archive for: myeloma specialist

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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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

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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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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.  

Myeloma Patient Profile: Jeff Boero

When Jeff Boero shares his multiple myeloma patient journey, it’s clear that self-education has been a vital part of his experience. He was first diagnosed through his primary care physician who referred him to a general oncology group in the San Francisco area. They confirmed it was multiple myeloma. It soon became clear to Jeff and his wife that he perhaps needed a second opinion, and he was connected with the University of California San Francisco (UCSF) to their multiple myeloma specialist. 

The second opinion changed the approach to Jeff’s care rather dramatically. He was quickly scheduled for a stem cell transplant and subsequent maintenance after that. As Jeff recalls, “Through UCSF, I became eligible for a CAR T-cell immunotherapy trial in 2017. That was very successful and kept me disease-free and medication-free for about 2-1/2 years. And then I relapsed and went on another maintenance program. I became eligible for another clinical trial for a bi-specific T-cell engager (BiTE) that I’m on now and am having good results.”

Jeff was almost in complete denial about his diagnosis for the first 6 months. The diagnosis threw him into a world of terminology and treatment that was completely foreign to him. That sense of his diagnosis feeling foreign also started to lead into a certain level of depression — just not knowing what it is, how is it going to be treated, what it meant to his long-term survival. Jeff remembers, “So, with the encouragement of my wife as caregiver, I became more educated as I engaged in various conversations with specialists and participated in some of the PEN webinars. It  became clearer to me about what some of the options are and what they can be. Being engaged with UCSF really opened up the treatment options. With me becoming more educated and able to speak the language of myeloma, I was starting to understand the diagnosis as it was presented by UCSF. And it led to a much richer engagement in conversation with the oncologist and with the nurse practitioners.” 

As a cancer patient, Jeff views self-education as the key to empowering patients toward better care. It was through self-education that he learned about other options. Before becoming more educated, Jeff was mostly just listening and trying to absorb as much as he could and seemed to remember mostly bad news. According to Jeff, “There’s so much good news around myeloma treatment and available therapies. It was through self-educating and those conversations that my outlook brightened too.”

By patients educating themselves, they can start to ask questions about the clinical trial like: “What is it, and why is it going to show better results than my maintenance therapy?” And in conversation, patients can start to better understand the purpose of the clinical trial. “I think it’s important for patients to understand what they’re trying to accomplish through the clinical trial that wasn’t through their maintenance therapy. What is it about this trial that’s different that we haven’t addressed previously?” But patients can’t ask those questions unless they have at least a basic understanding of their cancer and how the various therapies approach the cancer cell. “But if you listen to webinars and things like that, you’re better able to have those conversations. As a matter of education as these opportunities arise, you’re able to have a much richer conversation with your oncologist and your care team about the benefits that could potentially be derived from the clinical trial.” 

Clinical trials have benefitted Jeff, and he recommends seeking an opinion that is dedicated to research of your specific cancer. Learning institutions have more access to emerging research and treatments that likely won’t be FDA-approved until 2 or 3 years later. “So if you as a patient can be at the forefront of some of these trials, that can be tremendous. I’m on therapies now that didn’t even exist when I was diagnosed. Research is moving quickly.”

Jeff senses some hesitancy among patients about clinical trials. “There’s this misconception that if you join a clinical trial, one group is getting the real stuff, and one group is getting the placebo. And the trials that I’ve been in, everybody gets the real thing, and everybody’s progress is tracked on their response to the real thing.” He knows trials can seem intimidating. Jeff went through his initial clinical trial, because he was almost out of options for conventional maintenance therapy. His cancer burden continued to increase, and he’d been through a number of different treatments. “The CAR T-cell program came up and seemed to be a perfect fit for me. So I did the clinical trial partially out of necessity, but I also had extreme confidence in my oncologist that he was promoting something that he thought would be most beneficial for me. I think it’s a matter of putting trust in your oncologist. Maybe I’ve been lucky, but I’ve had good results and good response to both clinical trials.” He also feels that the sponsoring institution will give an honest appraisal of where the program stands and what the progress and success has been up to that point. 

Reflecting on the value of Patient Empowerment Network (PEN) and other resources, Jeff says, “I’ve gotten so much out of the PEN webinars that are provided and some other organizations. I’m a slow learner in this area but am absorbing as much as I can. I need to hear the same thing a few times before I start to absorb it and fully understand it. So I rewatch the PEN webinars, and it works for me.” He also suggests learning as much as one can but was advised early on to stay away from Google. “There’s so much out-of-date information. Whereas websites like Patient Empowerment Network’s and others have updated information that’s far more relevant. And I also find the navigation on the PEN website very easy to use.”

After meeting patients who don’t have the same level of health insurance benefits, Jeff feels a sense of gratitude. “I had tremendous support from my employer who in essence said take the time you need to get yourself well again. So I have a lot of gratitude for that support, my wife as caregiver, family, social support, my faith community, and for my proximity to UCSF that makes treatment very practical and very possible.” It’s opened his eyes in that regard. There are so many benefits that he has that others don’t have. “I’ve joined various support groups initially to gain support. Now things have come full circle, and I find that I’m at the other end of the conversation to give people comfort in what they could possibly be doing to improve their situation.”


Support Resources

Financial Assistance Programs

Financial Resources for Patients and Families

Health & Disability Insurance

Federal & State Benefit Plans

Is It Too Late for a Myeloma Second Opinion?

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

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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.

The Role of a Myeloma Specialist on Your Care Team

The Role of a Myeloma Specialist on Your Care Team from Patient Empowerment Network on Vimeo.

Why should you seek a consultation with a myeloma expert? Dr. Krina Patel discusses the important roles a specialist can play in your myeloma care, even from a distance.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

Related Resources:

Expert Advice for Newly Diagnosed Myeloma Patients

Relapsed and Refractory Myeloma Defined

Myeloma Induction and Consolidation Therapy Defined

Transcript:

Katherine:  

You mentioned the healthcare team. Dr. Patel. How does a myeloma specialist fit into that care team?

Dr. Patel:

So, I will say, as a myeloma specialist, I probably have three different ways that I am involved in different patient’s care. So, I have patients who are from Houston, where I’m at, that come to MD Anderson for their treatment. So, I see them on a regular basis if they’re on treatment, or I’m following them to make sure their disease is stable, what’s going on. So, I see them regularly, and I’m their main doctor for their cancer. And then, I have patients who are maybe a little bit farther away, and I see them as part of the team.

So, they have their own oncologist in their community that they’re seeing and they come see me either virtually or in person every few months, or if something’s happening; if their myeloma’s returning or they’re having toxicity, then they reach out to me so I can talk about different ways we can change therapy. And then, the third really is for second opinions where patients don’t necessarily  want to come see me all the time but they might want to be on a clinical trial that we might have at MD Anderson. So, they come just for that trial and then they go back to their doctors again. So, we sort of do whatever works best for the patient.

Expert Advice for Newly Diagnosed Myeloma Patients

Expert Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma expert and researcher Dr. Krina Patel shares key advice for patients newly diagnosed with myeloma, encouraging patients to take an active role in their care.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

Related Resources:

The Role of a Myeloma Specialist on Your Care Team

Relapsed and Refractory Myeloma Defined

Myeloma Induction and Consolidation Therapy Defined

Transcript:

Katherine:  

Myeloma can be a complex diagnosis. What are three key pieces of advice for patients who has just been diagnosed with myeloma?

Dr. Patel: 

I think any diagnosis of cancer, of course, is really hard, but multiple myeloma is so rare in the sense that people don’t know about it; that sometimes it’s the first time they’ve heard of it, when they’re diagnosed. And so, I think the biggest thing about more rare diseases in general, the best advice I could give is getting a myeloma specialist as part of your team. That doesn’t mean they have to treat you, but having them as part of your team. And we can talk about that in more detail. But the second part is really learning as much as you can and not necessarily all on the Internet.

Not everything on the Internet is correct. But really asking questions to your doctors, your nurse practitioners, your nurses, they all have different perspectives that asking questions for all of them is really worthwhile to kind of understand what you’re going through and what’s to be expected. And then, the last piece. I think with multiple myeloma patients, there are so many amazing patient support systems, especially after COVID but even before COVID, in terms of different groups that are sponsored by patients where you can listen when people come to give talks, et cetera. I think those are all phenomenal resources for patients.

Katherine: 

What do you think the role is of the patient in their own care?

Dr. Patel:     

So, gone are the days of paternalistic medicine, especially in the U.S. My job is not to tell you what to do, but my job is to really give you options as to what is the best possible therapy for you at that time. And really, your job is, as a patient, to make sure that they tell me all the information that’s important for them. So, for instance, if they can’t come to chemo every week because they just don’t have a ride or they have some other medical problems that maybe I didn’t know about, those types of things. We just have to have that open communication, so we can come to that best next therapy together with those decisions.

Multiple Myeloma: Danielle’s Clinical Trial Profile

Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Danielle:

Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.  

How Can Myeloma Patients Advocate for the Best Care?

 

How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Myeloma Treatment Decisions: What’s Right for You Resource Guide

What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options?

Transcript:

Katherine:                  

What is some key advice that you give patients when they’re considering their treatment options?

Dr. Forsberg:             

Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.

So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.

Katherine:                  

Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?

Dr. Forsberg:             

Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.

And additionally, we always want to be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks want to be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.

Katherine:                  

Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?

Dr. Forsberg:             

Well, certainly using tools like, if you found your way to this material, I think is a great first step.

Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.

Katherine:                  

And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?

Dr. Forsberg:             

Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.

And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache.