MM Treatments and Clinical Trials Archives

When it comes to treatment, Multiple Myeloma patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Multiple Myeloma Treatments and Clinical Trials from Patient Empowerment Network.

Questions and Considerations When Making Myeloma Treatment Decisions

Questions and Considerations When Making Myeloma Treatment Decisions from Patient Empowerment Network on Vimeo.

What should be considered when making a myeloma treatment decision? Expert Dr. Jeffrey Matous discusses key factors involved in choosing therapy and provides a list of questions to ask your doctor to guide optimal care.

Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.

See More from Evolve Myeloma

Related Resources:

Considering CAR T-Cell Therapy for Myeloma_ Key Questions to Ask Your Doctor

Myeloma Treatment: Who Is Stem Cell Transplant Appropriate For

Myeloma Combination Therapy _ What Patients Should Know

Transcript:

Katherine:

What factors impact treatment decisions? 

Dr. Jeffrey Matous:

Well, there are so many. One of the key ones is fitness, and fitness is a term that myeloma doctors use and rely on tremendously. 

And fitness, more or less, falls into a couple different categories. It’s more complex than that, obviously, but generally speaking, it’s too old or too frail, or young and vigorous and I stress to my patients that vigorous or frail is not determined by chronological age. It’s determined by your physiologic age. That’s really critical, so determining what your patient’s overall fitness is, is really important in myeloma. And then, we have to assess the risk of myeloma. I think we’ll talk about this a little bit later, because not all myeloma is the same and we treat myelomas differently depending on risk, certainly. And then, patient preference is a huge part, because there are so many ways to treat myeloma these days that we explore options with the patients and sometimes patients have pretty strong opinions about, you know, one type of treatment or the other, for example.  

Katherine:

What testing should take place following a myeloma diagnosis?  

Dr. Jeffrey Matous:

Testing in myeloma is multifaceted, because myeloma can affect patients in so many different ways. For example, it involves radiology studies to look for bone disease, urine work to see if the kidneys are affected by myeloma, a lot of blood work, and then, we also do a lot of testing to make sure that we understand the whole health of the patient, because that comes into play so much when we’re making treatment decisions in myeloma.  

Katherine:

What advice do you have for patients and caregivers related to working with their healthcare team in choosing a therapy? 

Dr. Jeffrey Matous:

Yeah. I think the big thing is to do some research on your own, but really, ask questions when you see your physician. I mean, ask questions about, for example, what are my treatment options? Are there clinical trials that might be available to me? What’s on the cutting edge in myeloma? What are the standard therapies? What are the pros and cons? And a question I often counsel patients to ask when they’re seeking other opinions is if you had 100 people like me and you treated them this way, how many would do well and how many would not do so well, and prognosis, and so forth. And then, the other thing I think is really important sometimes is gauging how experienced your physician is in treating myeloma, because we actually have data that shows that patients who are treated in myeloma centers actually fair a little better than those who are not. 

Involving a myeloma expert in your care doesn’t necessarily mean you have to get your care at that center. It just means you may want a myeloma expert on your team. Pretty much every doctor I know welcomes a myeloma person on their team, because the field is so rapidly evolving. It’s really hard to keep up with for a lot of people. 

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment. 

Myeloma patient and expert

START HERE Myeloma Program Resources

The program series includes the following resources:

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell. 

Dr. Ailawadhi also shared his excitement about the future of  myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.” 

Man using a tablet

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar. 

  •   “I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
  •   “This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
  •   “Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

What Should You Know About Emerging Myeloma Treatment Options? Resource Guide

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What Should You Know About Emerging Myeloma Treatment Options?

What Should You Know About Emerging Myeloma Treatment Options? from Patient Empowerment Network on Vimeo.

With myeloma treatment and research advancing quickly, it’s important to stay up-to-date on the latest therapies. Myeloma expert Dr. Jeffrey Matous reviews new and emerging myeloma treatment approaches, how these therapies work, as well as the potential risks and benefits of each option. Dr. Matous also shares resources for learning about myeloma and how to access better care.

Dr. Jeffrey Matous is a myeloma specialist at the Colorado Blood Cancer Institute and the assistant chair in myeloma research for Sarah Cannon Research Institute. Learn more about Dr. Matous.

Download Resource Guide

See More from Evolve Myeloma

Related Resources:

What Are the Phases of Myeloma Treatment

What Is CAR T-Cell Therapy for Myeloma?

Tools for Choosing Myeloma Therapy

Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is about advances in myeloma treatment and how emerging therapies may affect your care decisions.  

Before we get into discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Jeffrey Matous. Dr. Matous, welcome. Would you please introduce yourself? 

Dr. Matous:

Thank you very much, Katherine. I’m Dr. Jeff Matous, and I am physician at the Colorado Blood Cancer Institute, and also, the Assistant Chair in Myeloma Research for Sarah Cannon Research Institute here in Colorado. 

Katherine:

Thank you so much for taking the time to join us today. 

Dr. Matous:

It’s a pleasure. 

Katherine:

Before we get into our discussion, would you share with the audience how the field of myeloma has changed over the course of your career? 

Dr. Matous:

It’s unbelievable. I mean, I started treating myeloma back in the days of VAD, vincristine (Oncovin), doxorubicin (Adriamycin), dexamethasone (Decadron) 96-hour pumps with 40 pounds of dexamethasone that we put into patients, and wow. We didn’t have much else. We didn’t know how long to treat people, and then, in the 2000s, we have the revolution of all the new therapies, and it just keeps going and going and going. It really is an exciting to be in this field. 

Katherine:

Yeah. Let’s begin by sharing some advice for navigating myeloma care on a basic level. First, what testing should take place following a myeloma diagnosis? 

Dr. Matous:

Well, I think even before that, Katherine, I always tell my patients that an educated patient, like the people that are on this webinar, are the best patients, and so, when I meet a patient for the first time, we spend a lot of time educating patients even before we delve into a lot of the testing. 

And I refer them to excellent resources out there. Examples of these are the International Myeloma Foundation, or the Multiple Myeloma Research Foundation.  

There are others, of course, and so I really encourage my patients. In fact, I usually show them how to navigate these sites. And then, we get into testing, and testing in myeloma is multifaceted, because myeloma can affect patients in so many different ways. For example, it involves radiology studies to look for bone disease, urine work to see if the kidneys are affected by myeloma, a lot of blood work, and then, we also do a lot of testing to make sure that we understand the whole health of the patient, because that comes into play so much when we’re making treatment decisions in myeloma. 

Katherine:

Yeah. What factors impact treatment decisions? 

Dr. Matous:

Well, there are so many. One of the key ones is fitness, and fitness is a term that myeloma doctors use and rely on tremendously. 

And fitness, more or less, falls into a couple different categories. It’s more complex than that, obviously, but generally speaking, it’s too old or too frail, or young and vigorous and I stress to my patients that vigorous or frail is not determined by chronological age. It’s determined by your physiologic age. That’s really critical, so determining what your patient’s overall fitness is, is really important in myeloma. And then, we have to assess the risk of myeloma. I think we’ll talk about this a little bit later, because not all myeloma is the same and we treat myelomas differently depending on risk, certainly. And then, patient preference is a huge part, because there are so many ways to treat myeloma these days that we explore options with the patients and sometimes patients have pretty strong opinions about, you know, one type of treatment or the other, for example. 

Katherine:

What advice do you have for patients and caregivers related to working with their healthcare team in choosing a therapy? 

Dr. Matous:

Yeah. I think the big thing is to do some research on your own, but really, ask questions when you see your physician. I mean, ask questions about, for example, what are my treatment options? Are there clinical trials that might be available to me? What’s on the cutting edge in myeloma? What are the standard therapies? What are the pros and cons? And a question I often counsel patients to ask when they’re seeking other opinions is if you had 100 people like me and you treated them this way, how many would do well and how many would not do so well, and prognosis, and so forth. And then, the other thing I think is really important sometimes is gauging how experienced your physician is in treating myeloma, because we actually have data that shows that patients who are treated in myeloma centers actually fair a little better than those who are not. 

Involving a myeloma expert in your care doesn’t necessarily mean you have to get your care at that center. It just means you may want a myeloma expert on your team. Pretty much every doctor I know welcomes a myeloma person on their team, because the field is so rapidly evolving. It’s really hard to keep up with for a lot of people. 

Katherine:

Yeah. That’s great advice, Dr. Matous. Thank you. Stem cell transplant is often considered for myeloma patients. Can you talk about who this treatment option might be appropriate for? 

Dr. Matous:

Absolutely, so we’ve known for decades that, what I call high-dose chemotherapy, also called stem cell transplant, is a very effective and very potent treatment of myeloma and we’ve shown that time and time again in clinical trials, including some recent ones that are published just in 2022.  

And so, high-dose chemotherapy and stem cell transplant is not for everyone. You have to be fit enough to undergo it, and this is not age determined. It’s fitness determined. And then, a lot of people live a long way from centers that perform high-dose chemotherapy and stem cell transplants. 

If patients have to travel hundreds of miles, then sometimes that comes into play. Hey, I just can’t do this. I can’t get the time off, and uproot, and bring a caregiver, and travel 300 miles to get this care, so sometimes that comes into play. Physician bias definitely comes into play. We know that some physicians are stronger proponents of high-dose chemotherapy and stem cell transplant, and I fall into that category, but we have other physicians that may not even bring it up as an option to their patients. We know, for example, that African Americans and other minorities are notoriously under-referred for high-dose chemotherapy and stem cell transplant. A lot of decisions go into that, and again, this is one of those situations where if you’re transplant-eligible, that means you’re young and vigorous, and on paper, a candidate. You want to go, at the very minimum, consult with physicians that do high-dose chemotherapy and stem cell transplant and hear about that option. 

Katherine:

Yeah. You mentioned high-risk myeloma earlier. How do you determine if a patient is high risk or low risk? 

Dr. Matous:

Absolutely, so this is not uniformly agreed upon among myeloma doctors, but in general, we assess risk based on a few different things. One is called staging, and we stage myeloma unlike any other cancer, so it’s not staged like breast cancer, or lung cancer, or prostate cancer. It’s staged according to something called R-ISS, RISS, and you get, basically, a one, two, or a three.  

Those are your stages, and in general, if your stage three, you have higher risk disease, but even more than that, we’re beginning to understand how myeloma cells misbehave at the genetic level, and we know that there are certain genetic findings inside the myeloma cell that can convey higher risk features. It’s important to stress to patients that these are not genetic findings that they were born with or can pass on through hereditary. 

These are findings that occurred during the life of the patient that occurred by chance and developed inside that cell that turned into myeloma, and those are the genetic changes that we’re talking about. And we know that certain of these genetic changes confer higher risk disease. And in general, Katherine, if I see 100 people with myeloma, about 85 of the 100 will fall into what I call a standard risk category and about 15 percent will fall into what we call the high-risk category. 

Katherine:

Okay. That’s really good to know. Thank you. There are several treatment classes for myeloma, such as immunomodulatory therapy and proteasome inhibitors, for example. And they’re often used together.  

So, what is a combination therapy and why is it used so frequently for myeloma?  

Dr. Matous:

Absolutely, so with learned over the years in myeloma that combining different types of drugs that work in different ways, we call those classes, so different classes of drugs, combining them together is the optimal treatment for myeloma. 

And back in the day, we used to use two drugs. Then, we learned that three drugs are better than two drugs, and now, we have data that four drugs are better than three drugs. And so, we bring in drugs from all kinds of different categories for our patients. And we even know that for the non-transplant-eligible patients, for the older patients, for example, that combining drugs from different classes is really, really important to get the best outcomes. And in general, the three classes that we use – the four classes that we use when we’re treating myeloma patients initially include the immunomodulatory drugs, and examples of those are lenalidomide, also called Revlimid. pomalidomide, also called Pomalyst.  

Thalidomide’s (Thalomid) an older drug, but we still occasionally use it.  

And then, we have the proteasome inhibitors. Examples of those are bortezomib (Velcade), carfilzomib (Kyprolis), and to a much lesser extent, there’s one called ixazomib (Ninlaro). And these days, we know that CD38 antibodies are really important and really getting their foothold into the initial treatment of myeloma.  

Examples of CD38 antibodies are daratumumab (Darzalex) or isatuximab. And then, usually, we combine these treatments with steroid medicines to sort of increase the effectiveness of the regiments. That’s how – those are the classes that we use when we’re treating myeloma. 

Katherine:

Okay and have you learned about adding one treatment to another to another through clinical trials or is trial and error? 

Dr. Matous:

Absolutely. We would not be where we are right now without the conduct of clinical trials. I always tell my patients by the time something’s approved in myeloma, and we had things approved in 2022, the field is already moving past that in clinical trials. It’s unbelievable. So, I’ll give you an example. When daratumumab, one of these antibodies, got approved by the FDA, already when it got approved by the FDA, we knew through clinical trials that were being conducted that combining it with other types of medicines was far more potent. 

And we have countless examples of this, so yeah. Absolutely, so every treatment that we use in myeloma, we discovered and developed through a clinical trial. And I always encourage my patients strongly to consider clinical trials, and then, we have to explain, because when patients hear clinical trials, and I could be deviating a little bit here, Katherine.  

They often think about experimentation and testing things that are unproven. In myeloma, we occasionally do that, but far and away, the overwhelming majority of our clinical trials are testing agents that we know are effective. We’re just trying to figure out what the best combination is and make sure that it’s safe for patients. 

Katherine:

Yeah. Dr. Matous, some of our viewers may have already been through some therapy at some level. Let’s dive into new and emerging treatment. CAR T-cell therapy has been approved for myeloma patients and it’s certainly a hot topic right now. Can you tell us about this treatment and who it might be right for? 

Dr. Matous:

Absolutely, so these T-cell therapies in myeloma are really exciting, and basically, how they work is T cells are cells that normally, in our body, they’re part of our immune system. When they see something foreign, usually, it’s a foreign infection or some kind. T cells go into kill mode and take out the foreign invader, and they’re supposed to do this with cells that are thinking about turning into cancer, but for various reasons, cancer cells can escape the T cells, and then, kind of brainwash the new system to say, hey. It’s okay if we coexist with you. No big deal. We’ll just hang out together. Okay? And that’s not okay. And so, in CAR T-cell therapy, what we do is we take the patient’s T cells.  

We remove them from the blood with a procedure called apheresis, which is a machine that many patients might be familiar with through their stem cell collections. 

It’s the same machine. And we collect these T cells. Then, they go to a laboratory where they are genetically modified in the laboratory using very sophisticated techniques to become myeloma killers. And we tell – we educate the T cells to become myeloma killers. We grow them up in sufficient numbers, and then, we return them to the patient. We just, basically, put them back in the patient’s bloodstream in the vein and they go and they are really effective at killing myeloma cells. And that’s CAR T-cell therapy, so it’s an amazing immune therapy. It’s way more complicated than I laid out, of course, but that’s the general thought behind it. 

Katherine:

What are the risks of this therapy? 

Dr. Matous:

Absolutely, so we have a lot of patients who come and ask about CAR T-cell therapy and think that it’s the same thing as getting daratumumab in the clinic or carfilzomib in the clinic.  

Get it and you’re on your way. Far from that, and so, CAR T-cell therapy has a lot of risks. The risks fall into a few different categories. The first risk is called CRS, which doesn’t stand for what you think it stands for. It stands for Cytokine Release Syndrome. This occurs when the T cells recognize the myeloma cell and kill it, and when they do this, a lot of substances get released in the body that can cause a lot of symptoms, like fever, or low blood pressure, or low oxygen, and this requires specialized management to shepherd people through this.  

This almost always occurs in about the first week of the treatment after the patients receive the CAR-T cells. In addition, patients who receive CAR-T cells can have what’s called neurologic toxicity that falls into many different categories. It can be something as simple as a headache, or a transient or temporary difficulty, you know, saying words or being confused, or in the most severe situation, even a seizure. 

This requires a lot of close monitoring for neuro toxicity. In addition, we know that patients that get CAR T-cell therapy are, for quite a while after they receive the CAR-T cells, an increased risk for infection. It’s very suppressing of the immune system, immunosuppressive. And lastly, a lot of our patients who go through CAR T-cell therapy have low blood counts for a long time and they have to be monitored for this, might need transfusions, or some different therapies. It’s a complicated therapy for sure. 

Katherine:

Yeah, so what questions should patients be asking their doctor when considering CAR T-cell therapy? 

Dr. Matous:

I think the first thing, of course, is am I a candidate, because the commercially approved CAR-T cells, there are very specific criteria for who’s a candidate, who could receive it. Okay, and then, you want to know, one, if you’re a candidate. Two, what the risks and benefits are. 

Three, are there alternatives besides CAR T-cell therapy. Is it too early or too late to do this? Should we think about maybe another clinical trial or one of the T-cell redirecting antibodies, for example? You want to ask those questions for sure. These treatments are tremendously expensive, of course, and so that may come into play, as well. You want to know what the experience of the center is with CAR T-cell therapy, I think, and then, you also want to know are there clinical research studies for which you might be eligible to have CAR-T cells, not just commercially available ones, because we have two that are commercially available right now, and we have scores of CAR T-cell treatments that are still in clinical trial. [22:32] 

Katherine:

Yeah. Well, thank you for that, Dr. Matous. 

I know many viewers will appreciate all of this information. Let’s switch gears now to another therapy we’ve been hearing about; bispecific antibodies. One has been recently approved for myeloma, teclistamab, so let’s start with what are bispecific antibodies and who might they be right for? 

Dr. Matous:

And strap on your seatbelt, because there’s a whole bunch of them coming, I think, for approval. So, the T-cell redirecting antibodies, it’s a different strategy for trying to get your T cells, the patient’s T cells, to attack the myeloma cells. And in CAR T-cell therapy, it’s a single infusion. That’s the treatment. And the bispecific antibodies that I often call T-cell redirecting antibodies, because they redirect the T cells to the myeloma cell, these are given over a continuous period and it might as long as you tolerate it, as long as it’s working. It might be for a year. And they are given either under the skin as a subcutaneous injection, or in the vein. 

And there are many, many different of these T-cell redirecting antibodies, the bispecific antibodies. How they work, I just do this with my patients. I hold up my hand and I say the bispecific antibodies have two hooks on them, and one hook recognizes the T cell and latches onto the T cell, and the other hook latches onto the myeloma cell. And then, what it does, it brings the T cell in proximity to the myeloma cell. Then, the T cell says “Oh, aha. I’m supposed to kill this myeloma cell,” and usually does it. Now, the part that connects the T cell and these bispecific antibodies is always the same. It’s CD3. However, the part that sticks on the myeloma cell, there are different targets, and you referred to teclistamab (Tecvayli), which was approved by the FDA, and that attaches to something on the outside of a myeloma cell called BCMA, BCMA. 

But we know that other bispecific antibodies that can attach to different markers or antigens on the outside of the myeloma cell and affect the same change, and so, I think these are going to be coming fast and furious. 

Katherine:

Who’s this class of treatment right for? 

Dr. Matous:

I think – well, again, the FDA approval right now is for people who have seen pretty much everything. You know, you’ve had a lot of treatments. You’ve seen all the different classes of the myeloma drugs, but in our clinical research trials right now, we’re testing these as an initial therapy, in second-line therapy, after stem cell transplants. They’re being tested pretty much in every scenario right now in clinical trials, so right now, it’s when you’ve exhausted the normal treatments and you’re considering CAR T-cell therapy, or you’re considering getting treated with a drug called selinexor (Xpovio), or looking at another clinical trial. That’s when it’s the time to ask about the bispecific antibodies. 

Katherine:

What are the risks and benefits of this therapy?  

Dr. Matous:

The risks are pretty similar to the risks from CAR T-cell therapy, so Cytokine Release Syndrome. That usually occurs during the first week. Neurologic toxicity is, I think, less frequent with the bispecific antibodies, but infections and low blood counts definitely a concern with these bispecific antibodies, requires a lot of monitoring without any doubt.  

Now, the other thing about the bispecific antibodies, there’s, right now, they’ve been in the realm of the larger centers, so myeloma centers is where people have been getting these bispecific antibodies, but there’s absolutely no question in my mind that these bispecific antibodies are going to be available through almost every general hematology, oncology practitioner’s office, but not for a while. The docs that aren’t used to giving these medicines are a little – they’re being quite cautious rolling them out in their practices right now. There are still a lot of questions as these roll out, and so, right now, I think teclistamab is still largely unavailable outside myeloma centers, but that’s going to change, I think, even over 2023 and definitely into 2024. 

Katherine:

Okay. That’s really good news. For patients who want to know more about bispecifics, what questions should they be asking their healthcare team? 

Dr. Matous:

Again, the same thing is – the same questions. Well, teclistamab is approved by the FDA. What other bispecifics are there? What about combinations? What about clinical trials? And then, that’s what you want to ask for sure. Then, how often do I need to come in the office? With teclistamab, the answer is weekly.  

If they say for how long, it’s until it quits working or you have side effects, and then you can’t take it anymore. That’s the way the FDA label is. And so, it’s a big commitment to go on these treatments, but they’re effective. You ask me about the effectiveness of these drugs and, essentially, all the studies with these different bispecifics, including teclistamab, have been studied initially in people who have seen every myeloma treatment. They’ve had an average of about six different myeloma treatments. 

They’ve seen all the drugs. They’re not working anymore. They’re in trouble. They’re in a pinch, and roughly, seven out of ten people have dramatic responses to these bispecifics when they’re treated, which we’ve never had anything like this at all in the myeloma world. 

Katherine:

Wow. Do the side effects go away at some point? 

Dr. Matous:

The side effects are completely manageable. Yeah and you can – by and large, you can adjust the bispecific, either the schedule or different things, to make these completely tolerable for patients. 

Katherine:

Okay. 

Dr. Matous:

Very few patients on our trials, with these bispecifics, who we have not been able to manage and, pretty much, handle all the – any side effect that occurs. 

Katherine:

Okay. That’s good. Are there other emerging myeloma therapies that patients should know about? 

Dr. Matous:

There are a bunch of other therapies. Looking at in myeloma, for sure, and a lot of these other therapies are – they’re exploring the same pathway where the proteasome inhibitors work, but in a little different way. 

And proteasome inhibitors, again, just to refresh your memory, are  Velcade or bortezomib, Kyprolis or carfilzomib, and there are different drugs that work in this area that are being explored. And also, for the immunomodulatory drugs, there are different what are called cell mod or cell-modifying drugs that are being developed. Also, at our recent hematology meeting last December where all the blood doctors get together, there was a lot of research presented looking at using different cells for attacking the myeloma, for bringing back an old friend, interferon, to fight the myeloma through a new sophisticated way. The field is just really going at breakneck speed right now. 

Katherine:

Where do clinical trials fit into myeloma care? 

Dr. Matous:

I’m biased, Katherine. I think in every step of your myeloma journey you should ask about a clinical trial, because clinical trials might be appropriate as initial therapy, second-line therapy, third-line therapy, post-transplant maintenance therapy. There are clinical trials available, pretty much, at every phase of myeloma care, and so, I think it’s important that you here about your clinical trial options when you’re talking with your physician. Now, for some folks, it’s going to be hard to get on a clinical trial. You might be a long way from a center that does very many clinical trials, but you should always, always ask about it and there are many resources for researching clinical trials that are out there, right? One example is you can call The Leukemia & Lymphoma Society and they have counselors on the phone that can guide you toward clinical trials. You can go to clinicaltrials.gov. You’re paying for it. Might as well use it and search clinical trials there. It’s a pretty easy site to use, as well. 

My answer is at every phase of your journey, whenever you’re considering a treatment or a new treatment for myeloma, you want to know what your clinical trial options are. 

Katherine:

How can patients and care partners stay informed about the latest myeloma research? You mentioned a couple of websites. Are there others? 

Dr. Matous:

There are. There are a bunch of these that are out there, right? There’s the Myeloma Crowd. There’s – you know, this webinar. The Leukemia & Lymphoma Society in the Rocky Mountain area, we have, every year, a blood cancer conference that we put on free for patients through The Leukemia & Lymphoma Society that reviews new goings on in the field of myeloma, so there’s a lot of information out there and just a little bit of effort on the web. You can find great resources. Again, the ones I mentioned earlier I think are my top ones. Particularly, the IMF, the International Myeloma Foundation, because the physicians who run that and the people who run that, they made sure that everything that’s on there is entirely believable. 

Katherine:

Yeah. Okay. Let’s get to a few audience questions that we received before the webinar. Kendall writes, “I’m in the maintenance stage following initial diagnosis and treatment. At first relapse, is it appropriate to push for stronger treatment in hopes of a cure?” 

Dr. Matous:

Yeah, so the answer to that has changed. The answer is yes, and so, the – it used to be said in myeloma that your best treatment was your first treatment. Then, if you relapsed, that the treatments didn’t work as well, and the remissions did not last as long. Throw it out, so now, we get multiple chances to get really deep remissions in patients, and we should be every bit as greedy when we’re treating relapsed disease, at least initially, as we are when we treat disease at the very beginning. We know, for example, that there are many second-line therapies. I’ll just throw out some examples – daratumumab, pomalidomide dex, daratumumab Revlimid dex, daratumumab Velcade dex.  

Not to mention, the T-cell therapies that can put patients in remissions that are so deep that we can’t even find myeloma cells using very sophisticated molecular techniques, so be greedy. 

Katherine:

Yeah. Okay. Good advice. PEN community member, Greg, sent in this question. “Can you discuss any future or potential changes to using stem cell transplant for myeloma patients?” How would you counsel patients who do not want to pursue a transplant as a treatment option? 

Dr. Matous:

So, for stem cell transplant in myeloma, for years, it’s been the standard of care for suitable patients. And every couple years, I liken this to that game we used to play called King of the Hill growing up where stem cell transplants, King of the Hill, and everyone tries to knock stem cell transplant off the hill. And so far, it really hasn’t happened. And so, transplants still, I think, an important part of the overall care for suitable patients. 

For patients who are eligible and safe enough to undergo transplant. However, not all – now, will this be challenged in the future? And the answer is – I think the next challenger, and this will be a serious challenger, will be CAR T-cell therapy. And so, we have to figure out if CAR T-cell therapy or the bispecific antibodies are safe enough to give at the beginning and as effective as stem cell transplant and what the long-term side effects, how they might differ, as well, so that question is going to be tackled in the myeloma word, but it’s going to be several years until we have an answer there, for sure.  

So, for my patients who are otherwise candidates for stem cell transplant, but who don’t want to do it, usually, I’ll say, “You may change your mind in the future. In myeloma, it’s important to keep all your options open and you should at least discuss with the transplant center collecting and freezing away your stem cells for a rainy day to keep that option open to you.” So, even you’re thinking of not doing it, it might be a good idea, it probably is a good idea, to harvest and store your stem cells at a transplant center. 

And then, if you’re not going to do transplant up front, they key is to stay on prolonged maintenance therapy.  

We know that that’s one of the keys for making survival as long as possible in patients who don’t do a transplant is to continue on ongoing maintenance therapy as long as possible. Don’t curtail your therapy just because you’re not doing a transplant. 

Katherine:

Right. Okay. Well, thanks for that, Dr. Matous.  

Those were all great questions. Please continue to send them in to questtion@powerfulpatients.org and we’ll work to get them answered on future programs.  

So, Dr. Matous, as we close out the program, we’ve definitely learned that the field of myeloma is advancing very quickly. Would you share with us why you’re hopeful? 

Dr. Matous:

Yeah. It’s because for – I’ve been doing this quite a while and I always used to tell my patients if you just hang around. 

If you stay in the game, something else is going to come that we don’t even know what it is right now that’s going to impact your life, your quality of your life, the longevity of your life, and be a good treatment for you. And so far, that’s been the case. And right now, with the T-cell therapies, I’m really, really excited about how they can impact the cure of our patients. I also think that the basic research that’s going on in myeloma right now, and this is done by the real smart scientists, not the clinicians like me, but the really smart people that work in the laboratory. Learning how myeloma cells misbehave at very amazing levels, and when we learn that, it almost always results in a treatment that benefits our patients.  

And so, I think that we have every reason to be optimistic for our patients with myeloma, because of all the treatments that are coming out that we know about, that we know are around the corner, and for those that we don’t even have an idea what they are yet. 

Katherine:

Yeah. Well, it seems like there’s a lot to be hopeful about in myeloma care. Dr. Matous, thank you so much for joining us today. It’s been a pleasure. 

Dr. Matous:

Well, the pleasure’s been mine. I love talking to myeloma patients and I would just encourage you to keep getting all the information you can. The field’s moving really fast. Just keep up with it and don’t lose hope. 

Katherine:

Yeah. And thank you to all of our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.  

Engaging in Myeloma Treatment Decisions Resource Guide

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Top Two Multiple Myeloma Advances in 2022

What are the top two multiple myeloma advances in 2022? In the “Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings” program, expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center shares promising news and research highlights from these important conferences. 

1.DETERMINATION Study

The American Society of Clinical Oncology (ASCO) 2022 conference had a highly anticipated multiple myeloma session with an update about the impact of stem cell transplants. The DETERMINATION study spent over 10 years studying patient outcomes for those who received a stem cell transplant when they were newly diagnosed versus those who didn’t receive a transplant. Researchers were encouraged by the data that showed those who received a transplant at diagnosis kept their myeloma at bay in progression-free survival mode for 21 months longer than those who didn’t receive transplant at diagnosis. In addition, patients who received a stem cell transplant at the point of their second remission experience a long period of progression-free survival or myeloma hibernation.

2. Antigen Studies

Studies on antigens, or sort of flags on multiple myeloma, examined new ways to target myeloma treatment. Researchers discovered the new antigens of FcHR5 and GPRC5D provide novel methods to attack the multiple myeloma. Clinical studies can now look at developing new treatments to attack these antigens. These discoveries are especially important and hopeful for multiple myeloma patients who’ve already received B-cell maturation antigen (BCMA) treatment and then relapse, since BCMA has been the focus of the antigen treatment approach.

Multiple myeloma researchers at the ASCO and EHA conferences have discovered exciting findings and hope for the future of myeloma care. The studies revealed advances for improving care options and for extending progression-free survival periods. If you want to learn more about multiple myeloma care and treatments, check out our multiple myeloma information.

Three Factors That Determine Myeloma Treatment Decisions

What are the key factors under consideration to determine a multiple myeloma treatment approach? In “Key Factors That Guide Myeloma Treatment Decisions” program, expert Dr. Joshua Richter from Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai explains how to determine optimal approaches.

 1. Disease-Related Factors

The growth rate of myeloma – whether fast-growing or slow-growing – is a key factor in treatment decisions. Treatment in pill form may be an option for slow-growing myeloma, while intravenous or other treatment methods may be necessary to treat fast-growing myeloma. 

2. Treatment-Related Factors

A myeloma specialist will also take treatment-related factors into account. Some of these considerations will include issues like whether a patient stopped responding – or was refractory – to another treatment. Or if a patient experienced treatment side effects that couldn’t be lessened enough through adjusting dosage or by other means, that should be considered as well.

3. Patient-Related Factors

Myeloma treatment options must also take other patient health concerns into account. Considerations like physical fitness, kidney health, heart health, and medical problems like high blood pressure and diabetes must be considered. In addition, the patient’s myeloma symptoms must be weighed in the analysis for treatment decisions.

Myeloma specialists have some key factors to consider in narrowing down an optimal treatment approach. If you’d like to learn more about multiple myeloma, check out our multiple myeloma information.

Best Practices for Finding a Myeloma Specialist

Best Practices for Finding a Myeloma Specialist from Patient Empowerment Network on Vimeo.

Finding a myeloma specialist is imperative to ensure you’re receiving the best care possible. If you’re unsure where to look there are many resources at your disposable. Watch as myeloma patient advocates, Lisa and Sujata discuss their experiences with finding a myeloma specialist and share valuable resources.

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Transcript:

Sujata Dutta:

Lisa what would be your experiences or maybe some of your thoughts around best practices around finding a myeloma specialist? 

Lisa Hatfield:

Oh yeah. That’s also a really good question. So I live in Boise, Idaho, and most of the people in my support group here have stayed local, which is great, but a couple of people… In fact, at the time I was diagnosed, there was a gentleman who has myeloma, he was in Seattle having a stem cell transplant, he chose to go there because they have a much higher volume of… They do a much higher volume of stem cell transplants, and he just felt comfortable having all of that, not just the doctor, we have good doctors here, they have a huge support staff in Seattle where they do stem cell transplants.

So I asked the group, our group leaders, and then the gentleman who was in Seattle, why do people go somewhere else? Why would they do that? Because it’s not quite as comfortable leaving home for a period of time, and he talked a lot about how he felt just it was a second set of eyes to look at his case and he had some other complications with his myeloma. So for me, the best thing that I did is when I was thinking about going to see a specialist, which we did pretty quickly because my spine was quickly deteriorating, we end up calling MD Anderson, but after that, so we were assigned to a specialist. 

 She works at MD Anderson and only sees myeloma patients. After that, I wanted to have my stem cells collected somewhere else, and I ended up calling the International Myeloma Foundation their info line, and they actually can provide a list of specialists in your area or help connect you, especially in times of… Now that COVID is starting to settle down, but during COVID, a lot more specialists were doing Zoom calls or telemedicine visits, so I think that they have a really great… For patients who are looking for a specialist, which I assume you also highly recommend because you’re… You’re in a great area for specialist, I’m not. So I would recommend seeking a second opinion from… Not a second opinion, seeking taking a consultation from a specialist, because as you mentioned, myeloma is so nuanced, it is very complex and complicated.  

Sujata Dutta:

Yeah and again, this highlights a difference. So I live in Minnesota, and I am blessed to be living here, being diagnosed with MM is not a good thing for anyone. But then being in a place where you have all the resources and the support that you need for dealing with something like myeloma is important, and I’m also in a system which is integrated. So obviously in Minnesota, close to Rochester Mayo. My Cancer Center, Frauenshuh Cancer Center is… It’s in St. Louis Park, and we have University of Minnesota, so these three institutes are integrated and patient information can be shared if needed. So when I was diagnosed, I actually did not have to go look for a hematologist or myeloma specialist.

My diagnosis was done by a hematologist in Frauenshuh cancer center, and then she sent my reports to Mayo to the Hematology Department for a second opinion. So for me, I think I’m so fortunate and they did all of this for me, I didn’t have to do that, and then I was anyways is in the care of an MM specialist, which I think is important. And again, reiterating what he just said is like they really know the disease well enough, like I’m not saying that our regular oncologist who don’t know that, but MM is so nuanced.  

If you have the opportunity, I guess you should try and be associated with an mm-specialist, a hematologist, in my case, it was laid out to me on a platter, I should say. I was very fortunate, but for the… I know a lot of people may not have the opportunity to do that, but if you have that, you should definitely try and consider that because it’s quite an important conservation, I think. 

 Lisa Hatfield:

It is. I think you’re right, I know my current oncologist now, my local oncologist, he is awesome, he’s incredible, he’s a great physician, he was a great diagnostician. He’s really good. My husband, I both really like him. He also appreciates that I go somewhere else. And so that is the one thing I know I was terrified. Asking my doctors, what do you think about me seeing a myeloma specialist. I only had one little bit challenging experience when I told one of the doctors I had seen, I want to go to MD Anderson, and he said, Well, you’ll just be a number there and they don’t do much more than we would do here for that piece of my care, that’s probably true.

And even though we have really great care here and a great medical system, and I feel super fortunate with my cancer, my local cancer center there, all of the staff there is excellent. My oncologist is awesome. I still strongly believe that my course might have been different had I not seen a specialist because it is so unique and every patient is so different, and also specialist have access to some treatments that I did not have access to here locally. 

So, I think that that’s super important. I’ll just mention really quick, since we’re talking about specialists, the IMF has their info line, which is… I had to write it down. The phone number is 1-800-452-CURE, which is 2873. So 1800-452-2873, and they can put people… They can direct people to a specialist, and then healthtree.org also has a list if people want to go on, maybe they’re in some dex accelerated insomnia, I guess some night they can go to Healthtree.org, and just… They can click on myeloma, there’s two tabs. Click on myeloma and I just scroll all the way down to patient resources rather than trying to navigate through that. And under patient resources, it says, Find a specialist.

So those are two resources the patients can have, I didn’t look for those, we just called MD Anderson, but I appreciate all your comments, and I think it’s great when people live near a center, I highly recommend going to the bigger center, especially if there’s a myeloma specialist my big fear was just offending my doctors here, and I think some people worry about that too, I’ve talked to other people in our support group.  

Lisa Hatfield:

I don’t know if you have any suggestions for that, Sujata, if you think that… I feel strongly now about people seeing specialists, but at the time I was nervous about offending my doctors…  

Sujata Dutta:

Yeah, and I can relate to that because you build this relationship, you really then you’re going to see them for however long, and so you really want that relationship to be maintained as it is in a good condition, so I totally understand why you would have hesitated even to think about, Oh my gosh, am I going to offend him her by saying, I want to actually see somebody, and I’m glad that your experience was good, meaning like your doctor was supportive of you actually seeing another one. I have also heard of other patients having to navigate difficult conversations, similar to what you share is like, why do you want to see somebody, like Do you not trust us or in that kind of conversations, which I think is a little bit difficult for the patient because we’re going through a lot anyways.

And I always believe like, this is not just for the patient. The entire family goes through the whole process of diagnosis, treatments, all and everything that ensues. So it’s really difficult for the patient and who’s already going through a lot, and I would really hope that the providers, the doctors understand the state of mind, and agree, if the patient wants to see somebody else to support them in that, in that decision-making, as I say, I have been really fortunate and I had a really good experience, but I have, as you said, None of others who have not had as a pleasant of an experience, I’ve also known of patients who do not have those… 

Like you were able to go somewhere else, from Idaho to MD Anderson, I know of some people in some different states who do not have that kind of support, and in fact, they have pretty challenging systems, like there is a person in my support group who lives in Alaska, and for anything, any emergencies, they have to fly down to Seattle.

So, I can only imagine what that must be like to be in that situation where you’re going through so much and then you have to figure out the logistics and the tactical things about how do you reach from point A to point B and then start with whatever procedures so thank you so much for sharing those resources. I think they’re going to be really useful for folks that are listening to this call. Those resources are really, really important. I guess we can also say PEN also has some really amazing resources that folks can leverage as they navigate through this difficult journey. 

Lisa Hatfield:

Yeah, I agree with that. And I was going to mention that, so people… When you talk about resources and accessing the resources that that is a big problem, we see that here, because we’re in a more considered more rural area, and so we draw from multiple rural states, our support group does, but also there’s the financial difficulty. So, I’ll just throw that out there too.

Those are two really good resources that I mentioned before, but if people want to reach out to me at PEN or send an email, that would be fine too. I can help direct them to decent resources or some place they could at least start looking for resources because it is really important for people to get that consult from a specialist, I think so… Yeah, I appreciate that.  

What Can I Expect During a Bone Marrow Biopsy?

What Can I Expect During a Bone Marrow Biopsy? from Patient Empowerment Network on Vimeo.

Myeloma patient advocates Lisa and Sujata share their experiences with bone marrow biopsies – what to expect and how to prepare.

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Transcript:

Sujata Dutta:

And then there was one more thing that you spoke… When we started with the conversation, BMB. Let’s talk about BMB the dreaded swear word.  

Lisa Hatfield:

It is next to dex. I think it’s the second. Maybe it’s equal with Dexamethasone, people talk about dex being the worst thing about myeloma, the BMB, the bone marrow biopsy. Yeah. Did you have one? Right when you were diagnosed?  

Sujata Dutta:

Yes, and it wasn’t a pleasant experience. I was obviously, as I mentioned, I had a surgery an emergency surgery, it was pretty… It lasted for six hours and I was wrapped up in all sorts of things, and then I had to have the BMB while I was on an ICU bed, so… Totally not in the best place to start, and it was the first time I was going to have it. So it wasn’t a pleasant experience. It was super painful, they could not sedate me for obvious reasons, because whatever was going on, but post that I had the next BMB, I’ve had a couple… I’m not sure that’s a good thing or a bad thing, the next one, I had it in Mayo and I learned that I could actually be partially sedated and so I wouldn’t feel anything, which was like, Oh my gosh, I thought that was the best discovery mankind had ever made. And ever since then, I’ve always requested for being seated through that process, because otherwise it can be really, really painful, so I don’t know if you want to talk about what the procedure is. I am going to assume some of the folks here have been through this, unfortunately. 

 
Lisa Hatfield:

Yeah, because the bone marrow biopsy is the only way to actually see the myeloma cells, the cancerous plasma cells, it is necessary, it’s also necessary to get it done so they can diagnose the genetic abnormalities, the cytogenetics. But yes, I actually had a little bit different experience. So again, every patient is so different, I prefer not to be sedated because I don’t like sedation, I don’t like the way I feel, I don’t feel good when I have it, so I did have it done and I was… Where I went the first time they didn’t offer sedation, it was, this is 20 minutes, and it wasn’t comfortable.

I will admit that I didn’t like the worst part for me was when they numb the area with lidocaine, they gave you the little shots before they do that, so I’ve had six of them total now, but I’ve had the most recent one. The sixth one I had, they did sedate me and I think it’s conscious sedation, so it’s like you said light sedation, I don’t remember any of it, but I didn’t like it because I had two days of recovery from the anesthesia, so… Yeah, so I think the… 

Going back to somebody who’s maybe anticipating it for two nights straight, I couldn’t sleep, I was so nervous about the bone marrow biopsy, I just thought This is going to be so painful. I had excruciating pain in my spine anyway, ’cause it was collapsing as I was going through, I had radiation first, so the bone marrow biopsy didn’t seem to affect me quite as much the first time, but this last time, it seemed to be a little more uncomfortable, especially afterwards, but from my understanding from the bone marrow biopsy, they go in either with the needle, basically the thick needle or where you go to the Mayo Clinic in Scottsdale uses as a drill, and I guess that’s supposed to be faster, and a lot of people think it’s more comfortable, go into the bone marrow and try to take some of that bone marrow out… The soft part of the bone out, they actually take two different samples, but I think the most, uncomfortable part if you’re not sedated, I think is that vacuum-type feeling, and then there’s like a pop… And that was super uncomfortable. I thought that was probably the worst part of not sure if it’s pain or discomfort or what, but I do remember that looking back though, now, every time I’ve had one, I always say that wasn’t so bad.  

I remember it, but it wasn’t… I don’t remember it being too bad, so what they do is they will collect enough… They usually have a lab person available as they’re to make sure that they have enough of a sample and the right… The right cells and enough of it, so they usually will only go in once I had one where they had to go back in a second time to try to aspirate some more… The bone marrow, they’ll look at that takes a few days to go through the lab and look at that and see what your genetic abnormalities are with the myeloma cells themselves, and what the volume of cancer cells is in your bone marrow.

But yeah, I just remember, either way, if you’re sedated, you don’t feel it at all while it’s happening, if you’re not sedated, you can feel, especially when they’re numbing it up, the lidocaine shots and that stings, it’s a sting three or four times and takes a little time for it to set in, and then that suction that pop, that’s what was the most uncomfortable, and I think that really the most pain that I felt was the bruise-like pain, the couple of days afterwards, they’re not walking, but just sitting on it is bandaged up really…  

Well, you can’t take a shower for a day, but when I would go to sit on it, it just got bruised, but… Yeah, the bone marrow biopsy, nobody looks forward to those… It’s nice to know that there is something in the works, even mass spec testing, which isn’t quite as sensitive… It’s nice to know that there’s something that works, to maybe look at other ways to test for the myeloma. Yeah, not fun. It’s a necessary thing though that when people are diagnosed with multiple myeloma.  

Sujata Dutta:

That’s absolutely the true statement. I don’t like it at all. I am also anxious before I have my… I’ve had four now, so… And every year I’ll have to have one, so I know that that’s a necessity, as you said, I do feel anxious, but I keep telling myself this is needed to assess overall disease involvement and hopefully the results are better than last year, so I kind of… That’s how I sort of create some positive energy around that experience because it’s not a pleasant experience, and as you said, it does hurt for a couple of days after I actually have… Sometimes it goes on for a week that I have, or discomfort, but again, each to his own people might have different experiences, but I think the more we talk about it, the more we hear other people’s experiences, we might just feel like, Hey, mine was not all that bad, I look at her, him, what they’ve gone through and things like that, or even just thinking like… It’s different, it’s nuance.

Everybody goes through different experiences like you prefer not being seated, I prefer being sedated, so it depends on each one’s experiences, but the bottom line is there are options available, everybody understands, it’s a difficult procedure, everybody understands it’s not pleasant, nobody wants to put the pain through that if they had a choice. 

Right now, we don’t have one, so I think just thinking about in a positive way and embracing it, I guess might just help, it helps me, so I’m hoping that it helps others as well, just changing the perspective a little bit.  

Lisa Hatfield:

Yes, so who does your bone marrow biopsies? I’ve been to… Sometimes a nurse practitioner does them and sometimes an RN does mine, and I know some of our local doctors do them, oncologists do them, what type of professional does your bone marrow biopsies?  

Sujata Dutta:

With Mayo, I’ve had it twice there, they have specialists, they have a whole team that does obviously Mayo, they do like MM treatments, like they have 500 patients doing biopsies every year. That’s what I heard. I had mine there too, so it’s a well-oiled machine, they just have departments for every little thing, so that’s different, but even when I do it with my local cancer center, they have a specialized team, so it’s not the nurses, there’s a specialized team. There’s a different procedure.

Again, it’s different to how Mayo does it. When I do it at my cancer center, they actually do a scan before I have a BMB, and to make sure that they’re going in the right place. Which I thought like Wow, that’s great. Just as a second level of precision, but yes, that’s different to Mayo, but it’s always like a specialist doing it for me.  

Lisa Hatfield:

Yeah, and then how often do you have to have those on a regular basis, like annually or just as things change with treatment? 

Sujata Dutta:

Annually. So, only just… Obviously, for my diagnosis I had that and then six months later, and I had a stem cell transplant and I did a BMB prior as well then, a couple of months after I did that again. So that was the only time and it happened more regularly, but since then it’s been like yearly. 

Lisa Hatfield:

Yeah Okay. Yeah, the bone marrow biopsy is interesting because I know a lot of… There’s different ways that they test that and now they have a more sensitive test, so everybody has different..That’s the other part of alphabet soup. Some people have something called flow cytometry or NGF or NGS. So anyway, yeah, it’s kind of interesting that everybody will have different ways of going through that or different experiences, so anybody who has questions, you’re welcome to reach out to me at PEN or any of the other resources that are out there.   

How to Approach the “Alphabet Soup” of Myeloma Treatment

How Do I Navigate the Myeloma Alphabet Soup? from Patient Empowerment Network on Vimeo.

After an initial myeloma diagnosis, you’re plagued with various acronyms referring to treatment, different mutations, and much more. Hear from myeloma patient advocates, Lisa and Sujata, as they break down how they’ve navigated and continue to navigate through what they deem the “alphabet soup” of myeloma treatment.

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Transcript:

Lisa Hatfield:

Hi, my name is Lisa Hatfield, and I’m a myeloma patient. I was diagnosed back in 2018. I am an Empowerment Lead at Patient Empowerment Network, and one of the things that we are frequently asked is, What are all of these letters and acronyms when you’re diagnosed with myeloma? So just a nutshell, this is why myeloma is so complicated and confusing based on my story. So, I was diagnosed, like I said back in 2018, I have kappa light chain only myeloma. When I was a newly diagnosed myeloma patient, which is MDMM versus RRMM, which is relapsed/refractory multiple myeloma patient, I have kappa light chain only myeloma. 

 I have…and I’m just going to spew out all of my letters and numbers, I have translocation 11, 14, I have monosomy 13, I don’t have an M spike, which means all of my antibodies are normal, my IgM IGA, IGG are normal. After a surgery and radiation, I went through six months of KRD, followed by another three years of just the R, which is Revlimid, every month I have…in addition to my myeloma labs, I have a CBC, a CMP. Every year I have something called a BMB, bone marrow biopsy. I have a PET CT and MRI every year, and then I do something with my bone marrow biopsy to check for something called MRD status by NGS, which is currently, I’m MRD positive at 10 to the minus 6. So, all of those letters, it’s just a big alphabet soup for people to try to understand myeloma, it gets really, really confusing.

One of the things as a myeloma patient that I recommend to people is the IMF, The International Myeloma Foundation, just to add a few more letters to it, you can look at their website at myeloma.org. They break down each of these phrases and words and letters and acronyms and whatnot. 

So newly diagnosed patients and patients who have had myeloma for a while can understand all of these letters and all of these numbers and what these genetic mutations mean and what the tests mean. So, I guess, Sujata, I know you’ve been through this too. We’re just having conversation. How did you…when you were first diagnosed, I’m curious too, and for other patients, how did you get through all of the letters and things being thrown out at you.  

Sujata Dutta:

Yeah, Lisa, this is funny. So, my name is Sujata Dutta, I’m a board member at the Patient Empowerment Network, and I’m also an MM patient. I was diagnosed with multiple myeloma in December of 2019. And Lisa, you summed it up really well. This alphabet soup is actually a real thing. The first time when I got to know about it, I actually, obviously, like many, many folks that I have known that are on this journey, it comes up as a surprise, it just is… For me, it was interception, I can actually say that word and spell it, I think, but at the time when I was diagnosed, I had no clue what the doctor was talking about, I had this massive inflammation of my lymph nodes and I had to have emergency surgery ’cause the lymph nodes had caused damage to my big intestine, and then we did some research, we as in the doctors, and after a week post-that surgery, I was diagnosed with multiple myeloma. Again, I can say that today, but when they told me about multiple myeloma, I’m like, I have no clue what you’re talking about. They had literally had to dumb it down and say this is a kind of a blood cancer… 

I’m like, oh cancer all right then. So, the alphabet soup is actually a real thing, I do have M-spike Lisa, unlike you. My kappa light chains are fine, but it’s been a long journey and not there yet, so still…my goal is to achieve MRD or remission. I’m not there yet, I still have involvement through my proteins, not so much in the bones, so let’s break that down a little bit, Lisa.

Let’s talk about that alphabet soup and how do you navigate that through as a new patient, I would say not even a new patient, like an existing patient like me, sometimes I’m like baffled, like, “Oh, my gosh, what is this report saying to me?” So, thanks for sharing that resource about IMF but what else…as you started, just think about those early days, weeks when you were diagnosed and all of these terms were thrown at you, how did that feel, and how did you overcome some of it, if not all?

Lisa Hatfield:

That’s a good question. So, I went in to see my, my local oncologist here, after I’d gone through radiation surgery down at MD Anderson because I was going to have my chemo here, and in his office, there was a poster up for a local myeloma support group, which I was not excited about, I thought, Well, maybe I’ll go, but I don’t want to…I already feel down enough that I’ve already overwhelmed enough with my diagnosis, but we just…I called the lady, her name is Sheri, called her up, we talked about myeloma, she had myeloma for seven years, and I was super inspired by that, so we showed up, I had a walker I and walk with a walker because of all the damage to my spine and showed up limping along with my walker, and everyone there was talking about, “Oh, you’re newly diagnosed, what is your M-spike?” That was something new that I hadn’t heard, and I hadn’t had that discussion with my doctor, I didn’t realize at that time, it was because I did not have an M-spike.

So I think, like you said, it’s overwhelming enough to just receive that diagnosis and in my mind, I remember thinking back, Okay, if I talk to a new patient, if I can get through this and make it a few years out, what are the things that were the most confusing to me, and I think understanding the type of myeloma, if I were to… 

If patients were to ask me, understanding the type of myeloma patient has, the genetic mutations and understanding what their M-spike is or is not, if they are just…if they’re a light chain, only if they have light chain only disease. Those would be the things I think, because it is so confusing to patients in them, I think as they go along, maybe they can ask their team, “Well, what does that mean? Or what do those letters mean?” Yeah, it’s okay to ask those questions.  

Sujata Dutta:

Absolutely. Ask as many questions as you can, you’re encouraged as a patient to ask questions or at least I was. I think what is also important to note is like with MM, it’s an individual, it’s a very individualized sort of a disease, so although we put it under the bucket of multiple myeloma, everybody experiences it differently, they even have reactions to medication very different, like just yesterday I was talking to somebody in my support group and they had a really different experience with one of the drugs that I take regularly, daratumumab (Darzalex) every four weeks. She just had the first dose and it was such a bad reaction, she ended up in ER.

So not scaring anybody, I’m just saying everybody has different reactions, somebody might take to some medication really well versus others may not…and just between the two of us, we have different types, you don’t have that, and so there are these nuances, which I think it’s just important to acknowledge, there’s nothing to be scared of…it’s just acknowledging the difference of how multiple myeloma works versus some other cancers maybe…I think it’s important. And you brought up a good point about trying to understand the labs, we don’t have to be experts. 

I don’t think I want to be an expert. I have folks that are experts that will take care of me, but just so that I understand the basics of it, and then I’m able to ask questions for my own self, like educating myself. 

How Can You Engage in Your Myeloma Treatment Decisions? Resource Guide

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Will Myeloma Patients Need Fewer Biopsies in the Future?

Will Myeloma Patients Need Fewer Biopsies in the Future? from Patient Empowerment Network on Vimeo.

Is it possible multiple myeloma patients will need fewer biopsies in the future? Dr. Sikander Ailawadhi from the Mayo Clinic explains bone marrow biopsies, myeloma detection, and potential tests in development.

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Transcript:

Lisa Hatfield:

Okay, so for myeloma patients, even though our insurance companies, sometimes we have to argue with them a little bit as if we’re beating down doors to get a bone marrow biopsy, nobody loves those, I’m not sure why insurance companies think we would actually want that. But what do you see in the future, I know there’s talk about mass spectrometry. Every myeloma patient would love to hear the words, you’ll never have to have another bone marrow biopsy.

Do you see a future in that and some of these newer tests that are coming out?

Dr. Sikander Ailawadhi:

Sure, I think that’s absolutely important to know because…yes, that’s the bane of our existence, unfortunately, disease primarily lives inside the bone marrow, so to get the true information…that’s where you go. So there are some tests that are being developed or researched, patients may have heard about what’s being termed, the liquid biopsy or taking a blood sample to identify plasma cells or disease, there’s a lot of research going on around it. But, unfortunately, it has not panned out yet, because by nature, plasma cells do not circulate in the blood, or if they circulate, it’s a very, very small amount, so it’s hard to pick it up from the blood and do the tests on it. But there’s a lot of research going on for it to get the plasma cells, get the FISH testing, and all the genetic testing from the plan.

So stay tuned, hopefully we’ll get in that direction. What you also mentioned, a test that’s been developed and done at Mayo Clinic is what’s called maspect or looking at these proteins, these M-spikes, these light chains, the IgGs, etcetera. Looking at them at a molecular level and separating them based on their weight, because IgG kappa, for example, from one patient may be different from the IgG kappa that came from a different patient, but they can be separated out based on the weight, based on the molecular weight… on the size, and that can sometimes be used that how the test has been developed to use that property to identify and almost catalog and tabulate and follow that patient’s protein, so that we can hopefully collect or detect a recurrence sooner, note a deeper response to the treatment.

And in the future, hopefully use that depth of response and that earlier recurrence as…or earlier detection of the protein as a survivable matter, recurrence. I still think that it’s two different things, one is to look at the protein and note it at a deeper level to know whether the patients responded or relapsing, but so far, if you want to do those rotation testing, the FISH testing, and look at some of the characteristics of the myeloma, unfortunately, we do have to go to the bone marrow, but down the road, I’m hoping that those liquid biopsies and the blood tests will hopefully make it happen.

Lisa Hatfield:

Well, that would be music to my ears, even fewer biopsies would be great, so that would be awesome.

How Are Myeloma Therapies and Clinical Trials Becoming More Accessible?

How Are Myeloma Therapies and Clinical Trials Becoming More Accessible? from Patient Empowerment Network on Vimeo.

For underrepresented multiple myeloma patients, what actions are being taken to improve access to care? Dr. Sikander Ailawadhi from the Mayo Clinic explains factors that can limit myeloma care access and shares resources that can help patients improve their access. 

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Transcript:

Lisa Hatfield:

So the question is, myeloma treatment is expensive, with quadruplet therapy options, what measures are being taken that can help patients to have equal access, and I think that we can also add clinical trials to that too. Is there anything being done, or how can you encourage patrons to appeal access, whether it’s the drugs themselves or clinical trials?

Dr. Sikander Ailawadhi:

So absolutely, I think, Lisa, that’s an extremely important question as I mentioned, this area of healthcare disparity in healthcare, inequity, for example, is something I’ve spent a lot of time doing my research my career and publishing in this area. Unfortunately, in today’s day and age, we still have a lot of these disparities that exist, patients may not get access to the right drug or the  right time because of their geographical region, because of their insurance, their education status, socioeconomic status, and sometimes even in other…situations being similar, just their race and ethnicity. Age is an important factor.

Also, I would say there…I think the important part is that it is much more knowledge, awareness and intent to do something about it now, there’s, for example, in the forthcoming clinical trial that should be opening for really diagnosed patients across the country, soon through NCI and stab where the trial has been specifically designed to do it in as close to real world setting as possible, and when we were writing that child, there’s a specific racial, ethnic minority accrual plan that we are writing around it, and that’s not…I would say just that trial, there are trials that are now specifically going in trying to enroll patients as much as possible from the real world and all walks of life. 

And that’s it. I think the bigger question comes, like you started the question by asking the trials are there…we are trying to make a difference for trying to make some changes, changing the inclusion criteria so that patients would even now our accounts can go in, etcetera, etcetera. What about the drugs that are already available at quadruplet therapy, which is a pretty, I would say, demanding approach, because the patient needs to get multiple drugs multiple times, frequent visits back and forth to the clinic, co-payments office with its labs, etcetera. It’s not easy.

Unfortunately, there are certain groups within our society that would have difficulty getting those access, but there are lots of resources that patients and caregivers can access, and hopefully those…help share some of the burden. These are either from the pharma companies or they could be from foundations or societies like the The Leukemia & Lymphoma Society and several other such concerns whose goal is to try and provide an equitable and just access to the drugs and how to get the most evidence-based treatment to every single patient.

So there are quite a few of these efforts in our practice, what we strongly recommend is that the patients, of course, get this knowledge and information through support groups, through their physicians, but also searching for this information online or in a lot of the larger institutions, meeting with the social worker frequently helps gain access to our information about a lot of these resources. So I think a lot of work has been done there, but to bring it down to an individual patient’s level, how can I as a patient get access to something…

I think the patients will have to ask those questions either from their physician, their care team, a social worker, online resources, support groups, that information is out there, we are trying our best to get it to patients that hopefully patients can seek out some of that as well. 

What Treatments Are There for Myeloma Patients Who Relapse After CAR T?

What Treatments Are There for Myeloma Patients Who Relapse After CAR T? from Patient Empowerment Network on Vimeo.

Do multiple myeloma patients who relapse after CAR T have other treatment options? Dr. Sikander Ailawadhi from the Mayo Clinic explains patients who typically receive CAR T-cell therapy and options for those who relapse after CAR-T therapy.

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Transcript:

Lisa Hatfield:

So this next question has to do with the sequencing of treatments, which, again, speaks to the fact that it’s super important to see a myeloma specialist, but the question is what treatments are available for myeloma patients who relapse after CAR T?

Dr. Sikander Ailawadhi:

Very, very important question, and unfortunately a tough situation that we are dealing with because CAR T initially has been used for later lines of therapy as it is currently FDA-approved. With time, hopefully it will start making it may sooner in the treatment also, but when a person…when a patient has had treatment with CAR T, generally, they have already had treatment with most of the standard available drugs prior to CAR T, because the way CAR T is currently approved is the patient has to have at least four prior lines of therapy, and generally, at least in the U.S. system, with the first three to four regimens or lines of therapy, we’ve already seen and exhausted most of the available drugs.

So you can imagine most CAR T, there is less drug availability that the patient has not had before or may not be resistant to, but if the CAR-T response lasted long enough, sometimes we are recycling some of the drugs after previously used, and the patient may respond to them again.

Another thing to think about in that place is from my standpoint, clinical trials are extremely important and patients must seek clinical trial options, as you mentioned, again, important to see a specialized myeloma center, but one of the drugs that was approved in 2022 bispecific antibody, teclistamab (Tecvayli), and there are some other related by specific antibodies which have actually shown some benefit despite the fact that they also target BCMA, which CAR T targets, but patients who had prior BCMA therapy still had a very good response rate to, for example, teclistamab or some other…bispecific antibodies in clinical trials, so I don’t say that everybody who’s been treated with a BCMA CAR T should go immediately to a BCMA and bispecific may not be the best option in all cases.

But sometimes recycling older drugs in certain different combinations, clinical trials or options promising options like bispecific antibodies. We do have more options today than even what we had a year ago for patients who are progressing after CAR T-cell therapy. 

Myeloma Expert Gives an Overview of Novel Therapies

Myeloma Expert Gives an Overview of Novel Therapies from Patient Empowerment Network on Vimeo.

What novel multiple myeloma therapies are available for patients? Dr. Sikander Ailawadhi from the Mayo Clinic shares an overview of novel therapies of CAR T-cell therapy, monoclonal antibodies, bispecifics, and immunomodulators and discusses therapies currently in rapid development.

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Transcript:

Lisa Hatfield:

We are going to jump right into a discussion about some of the novel therapies that there is much buzz about right now, and it’s kind of an alphabet soup these novel therapies. I actually was trying to digest all of this information and divide it into the general categories.

And correct me if I’m wrong, but we have monoclonal antibodies, we have bispecific antibodies like the CAR-T therapies, and they target different things. We have BCMA, we have GPRC5D, FcRH5, we have things called antibody drug conjugates and cell mods. So, Dr. Ailawadhi, if you can just give us kind of a broad overview of these therapies and how they may be used to harness our immune system, and how they come into play when you’re treating your patients, how and when they come into play when treating your patients.

Dr. Sikander Ailawadhi:

Surely, so I think thanks a lot for bringing up that discussion, this is extremely important, and I think it’s most important because if a myeloma patient goes online and wants to search for information or research, these things start coming up this term start coming up. So it’s extremely important for a knowledgeable and empowered patient to learn about these, understand them, so that they are able to digest that information. And I should mention that a lot of what we’ll talk about about these particular treatments may not be applicable to newly diagnosed patients or a recently diagnosed patient, but this is important enough and exciting enough that I would want every single patient to pick up this information. Learn it hopefully, and maybe park it for now somewhere, so that hopefully down the road it becomes important and handy.

So you asked about monoclonals, bispecific, CAR-Ts, cell mols, etcetera. Let’s take a step back, let’s think about these as strategies to target myeloma. Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important, and when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.

For example, one of the markers is CD38. There is a monoclonal antibody. There are actually two monoclonal antibodies. Daratumumab (Darzalex), rituximab (Rituxan) that are FDA-approved, but there are other ways of targeting CD38, for example, CD38 targeting CAR-T cells, CD38 targeting antibody drug conjugates, etcetera. So CD38 is one important part. A very, very, very important thing in the past one year or a year-and-a-half has been what’s called B-C-M-A, B cell maturation antigen. BCMA is another target on plasma cells. Very effective, very specific.

So there are many, many drugs that are available and becoming available to target BCMA. Right now, there are three drugs that are FDA-approved that can target BCMA. Two of them are CAR-T cells, a particular way of going after BCMA in which the body’s own T cells are collected. These are not stem cells, these are T cells, T lymphocytes, these T cells are collected, they are actually genetically modified to go and fight against the BCMA, and then those modified T cells are multiplied in the lab and given to the person as a drug, they go and seek the plasma cells because of BCMA kill them harnessing the body’s immune system.

So there are two CAR-T cells against BCMA, one called ide-cel (Abecma) and one called cilta-cel (Avekti). There has recently been available a bispecific antibody against BCMA, we call it bispecific because it connects to BCMA from one end and from a second it connects to the body’s T cells again, bring the T cells close to the plasma cells to kill them. Then bispecific antibodies called teclistamab (Tecvayli). And until recently there was another drug available against BCMA which was what’s called an antibody drug conjugate. This drug is called belantamab (Blenrep) for the timing, belantamab has been removed or withdrawn from the market in the U.S., but there are ongoing clinical trials and down the road, it may come back again.

Now, antibody drug conjugate is another way of targeting something in which there is a seeker for the BCMA in this case, and it has a payload of some kind of a toxin, so that when the drug connects to the plasma cell through the BCMA in this case, that toxin is released, it can kill the cell, so either we harness the body’s immune cells, the T cells by CAR-T or bispecific, or we kill the cell by releasing a toxic payload from a drug, antibody drug conjugate, these are all different methods of targeting the myeloma cell. So I talked to you about monoclonal bispecific CAR-T and ADC as different strategies, CD38 and BCMA, some of these strategies are available, but there are other targets which are very exciting and new drugs are being developed against them, two of the very interesting targets there one is called GPRC5D, and the other is FcRH5.

These GPR5CD or FcRH5 are two different targets on myeloma cells. No drugs are currently FDA-approved, but they are being developed very rapidly, and we have a couple of extremely promising agents which will be coming down the pipe. And you also mentioned something called cell mods. Cell mods are some newer drugs in the family of what’s called IMiDs or immunomodulators, in which our patients may be aware of thalidomide (Thalomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst). The cell mods are kind of the same family, and there are a couple of them that are also being developed.

So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs, and you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart and they develop invasive mechanisms to become resistant to drugs, but every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.

I know that was a lot of information, but I hope this helps our listeners learn a little bit about what you rightly said is an alphabet soup, but I would like us to think about it as an exciting time for being a myeloma doctor, and certainly a very hopeful situation for all our patients.