Tag Archive for: Side effects

Understanding Myeloma Treatment Types

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Understanding Myeloma Treatment Types  from Patient Empowerment Network on Vimeo.

What are the types of treatment available for myeloma? Myeloma expert Dr. Mark Schroeder reviews the myeloma treatment classes, including proteasome inhibitors, immunomodulatory drugs (iMids), and immunotherapy. Dr. Schroeder also discusses factors to consider when choosing therapy for patients with myeloma. 

Dr. Mark Schroeder is a hematologist at Siteman Cancer Center of Washington University School of Medicine in St. Louis. Dr. Schroeder serves as Associate Professor in the Department of Medicine. Learn more about Dr. Schroeder.

See More from Engaging in Myeloma Treatment Decisions

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Transcript:

Katherine Banwell:

There are a number of treatments for myeloma patients. Can you talk about the types that are available? 

Dr. Mark Schroeder:

Yeah. So, the classes of – actually there is lots of drugs approved for treating myeloma but also recently approved.  

And we classify them into big categories. One of the categories is called immunomodulatory drugs – those are drugs like lenalidomide (Revlimid) and pomalidomide (Pomalyst), or even thalidomide (Thalomid), which was one of the first immunomodulatory drugs. Those are oral drugs that work on a specific pathway in the myeloma that leads to the myeloma cell dying. Another class of drugs are called proteasome inhibitors. Those include drugs like bortezomib or carfilzomib. Those drugs are often given under the skin or in the vein, and we know that they work really effectively on their own, but also when we combine them with an immunomodulatory drug like Revlimid or pomalidomide, the effect is even better. Another class is steroids. Steroids are kind of one of the first drugs used to treat this cancer, and steroids are effective at treating myeloma cells.  

Plasma cells are responsive to steroids. One of the first treatment regimens used to treat myeloma were traditional chemotherapies, and those are usually reserved for later on. You might think of traditional chemotherapy that causes hair loss, nausea, vomiting, low blood counts. Those, decades ago, were used to treat myeloma, but now we have effective oral, IV, or injection into the skin that don’t cause a lot of the traditional chemotherapy side effects but are very effective at treating the myeloma. And then another major class of drugs are considered immunotherapies. So, these are treatments that are engineered to either stimulate the immune system to go attack the myeloma, or maybe it’s even using part of your own immune system to engineer it to go attack the myeloma. 

Examples of those are called bispecific antibodies which kind of binds to the myeloma but binds to an immune cell, brings them together, or a CAR T-cell which takes your own T cells genetically modifies them to attack the cancer. 

Katherine Banwell:

And there is also a bone marrow transplant. Is that right? 

Dr. Mark Schroeder:

That’s right, yeah. I neglected – so, bone marrow transplant has been around for a while in myeloma. And despite it being around for so long and really good therapies being approved for myeloma, it’s still a standard treatment for myeloma. And bone marrow transplant in myeloma uses a traditional chemotherapy called melphalan that is associated with the chemotherapy side effects we talked about. But the advantage of bone marrow transplant is that it prolongs the time before the myeloma comes back and needs other treatments, and that’s why we do it. It can be toxic, but it can prolong the time before a patient needs another line of therapy. 

Katherine Banwell:

We know that everyone’s diagnosis is different. So, how do you determine a treatment plan for an individual patient? 

Dr. Mark Schroeder:

So, it depends in terms of the patient – initially, I will evaluate patients and determine how fit they are. Is it a patient that I think is strong enough to undergo a stem cell transplant? Is that going to be a benefit to them? That’s not necessarily a factor of just age, but it’s also, are they doing well functionally, or do they have any other medical problems like heart disease or kidney problems? Those things play into my decision on a treatment initially with patients.

So, whether you’re fit or unfit will help to guide what your treatment is going to be in general. Fit patients are somebody that could undergo multiple treatments, go through a transplant, have minimal toxicity, and recover fully after more intensive treatments.  

Whereas, unfit may need more assistance, and we tend to reduce the intensity of treatments. It doesn’t mean the treatments, if you’re unfit, are less effective – they can be very effective. But our goals for treatment change in that situation. And we’re looking for responses but also looking for quality of life. And then it changes also depending on the genetics of the myeloma. Our treatment for patients who have genetic changes that are high risk will change compared to those that have what are called standard risk genetic changes.  

So, that is an important point to discuss with your oncologist if you have – Do I have standard risk or high-risk genetic changes in my cancer? And does that effect my treatment? And then also, treatment in somebody who is being treated a second time or third time or beyond for their myeloma depends on what treatments you had before and how effective they were.  

And what were your toxicities or side effects from those treatments? So, all those factors play into a decision of treatment for an individual. 

Thriving With an MPN | Tips for Managing Worry and Anxiety

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Thriving With an MPN | Tips for Managing Worry and Anxiety  from Patient Empowerment Network on Vimeo.

Dr. Joseph Scandura explains the role of shared decision-making when deciding on an MPN treatment, and why it’s so important for patients to take an active role in their care.

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

 

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Advice for Choosing MPN Therapy: What’s Right for You?

Transcript:

Katherine Banwell:

Can you talk about shared decision-making? Why is it so important for patients to work closely with their healthcare team on choosing a therapy? 

Dr. Scandura:

Because these are therapies that last for a long time. And, hopefully, the patients and the relationship last for a long time. And so, I think that everybody has to be comfortable with the decision about a therapy. And my personal goal is to try to make sure that everybody understands the rationale for a therapy, the potential ups and downs with the therapy, which every drug has, every approach has, and what I’m kind of watching and monitoring. I’m a very – I think that communication relieves a lot of anxiety. I think that the unknown is far scarier than the known, even if it’s not perfect. And so, I think shared decision-making has a role in relieving some of the scariness of unknown.  

If we’re discussing to come to a decision, that means that my job is to give you the knowledge that I have so that you can tell me the knowledge about you and what you’re feeling and what you want back. And that back and forth is what helps me do a better job of taking care of the patient and helps the patient understand what’s going on and relieve some of the stress of the unknown. So, I think it’s a very synergistic approach. I don’t think I could practice medicine in another way.  

Katherine:

Managing the worry associated with a diagnosis or concerns even about progression can lead to a lot of anxiety and fear amongst patients. Why is it important for them to share what they’re feeling with their healthcare team? 

Dr. Scandura:

I would say this. If our goals are to have people – I mean, this is what I say to patients – I want you to think about this disease when you’re here. And, then, when you’re not here, my goal is to have you not thinking about this disease because you’re feeling okay and you’re comfortable and confident in what’s going on.  

So, I want to make it a clinic visit disease. That’s not always possible. But, for many patients, it is. I don’t want somebody to become – to start thinking like a sick person when they’re not. I don’t want the diagnosis to be the disease, right? I want the person if they’re feeling well, to recognize that. Live your life; move on with things. But, at the same time, these kinds of diagnoses are scary.  

Katherine:

Yeah. 

Dr. Scandura:

And so, it is normal with a new diagnosis or a change in the diagnosis to go through a period of time where you have to adjust. And so, that’s normal, and you have to work your way through it. Some people want to work that all out internally, and that’s good to a certain extent as long as they have good supports at home. But I often want to know how they’re doing, how they’re working through that so I can get a gauge of how it’s affecting their life and the duration where this adjustment is going on.  

So, somebody who’s still adjusting to a new diagnosis two years after the diagnosis, and they’re otherwise clinically well, that’s getting into the range where it’s not normal. You might need additional help. You might need counseling. And, in some patients, that might include some medications for a short period of time. The goal is to have the disease affecting you only in so far as it’s affecting you, not the idea of the disease. 

So, that’s a – again, it’s a conversation. There are lots of resources. People, being individuals, deal with things in their own way, and I just try to help understand with them how it’s affecting their life. And, if it seems to be more than I would expect, I’ll tell them that.  

And then we can discuss that. It doesn’t mean we have to do something today, but I will tell them, “I think this is maybe a little bit more. Why are you so worried? I think you’re doing great.” 

Katherine:

Yeah. Yeah. Can a social worker or somebody else on the healthcare team help with these emotional needs that patients have? 

Dr. Scandura:

Absolutely. We have great social workers. I tap into them all the time. We also have a group of psychiatrists who are really interested in kind of psychiatry that’s related to oncology and the diagnoses and how it impacts care. I mean, this is New York City, so everybody has a therapist. But a lot of patients have preexisting connections to healthcare providers or support systems. I think, for some patients, groups are helpful.  

Why Should Prostate Cancer Patients Be Empowered?

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Why Should Prostate Cancer Patients Be Empowered? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong explains how he empowers his patients and describes the positive benefits of speaking up in your own care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

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Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Armstrong:

Well, I empower patients by talking and listening. So, listening probably the most important part. Just getting to know somebody and their family is empowering them. You’re understanding their values, their preferences, understanding what side effects they’ve experienced in the past, what comorbidities or health conditions they’re facing, what their fears are. You know, what spiritual values they might bring, what support systems they might bring.  

Every patient is different, and part of a consultation is getting to know the person in front of you, and that empowers them to be honest. Empowers you to be transparent and get to know them so that you can help them sift through a complex decision. 

Giving information is really important, so I do a lot of talking as well as listening. 

But giving information back to the patient about risks and benefits of treatment A, B, or C or no treatment is critical. And then there is a lot of then listening to that shared decision about what might be right for that patient and navigating it. 

Katherine Banwell:

Why is it important for patients to be empowered? 

Dr. Armstrong:

It’s important for patients to be empowered, because this can often be a life-threatening decision. It’s important because this is ultimately their decision for their body, and making this decision can have major consequences that patients have to live with. Doctors empower patients to make the right decisions so they’re comfortable and don’t have regrets looking back on life and these important decisions. Whether this is picking surgery or radiation, or picking initial surveillance, or enrolling on a trial, or starting hormonal therapy. 

I think each decision sometimes is reversible, but sometimes is a big decision that can’t be taken back, and making sure that that patient feels empowered, that they don’t have regrets later, that they’ve gotten all the information to make an informed decision is really critical. 

Disease Monitoring: Is My AML Treatment Working?

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Disease Monitoring: Is My AML Treatment Working? from Patient Empowerment Network on Vimeo.

Dr. Eytan Stein explains how AML treatment effectiveness is monitored and why it’s essential for patients to report any symptoms or side effects to their healthcare team.

Dr. Eytan Stein is a hematologist oncologist at Memorial Sloan Kettering Cancer Center and serves as Director of the Program for Drug Development in Leukemia in Division of Hematologic Malignancies. Learn more about Dr. Stein, here.

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Transcript:

Katherine Banwell:

Once treatment has begun, Dr. Stein, how do you know if it’s working?  

Dr. Eytan Stein:

So, that’s a good question. So, the good thing about acute myeloid leukemia when it comes to understanding what’s going on, you know, it’s a disease of the bone marrow cells. And we do bone marrow biopsies to see how things are doing. But no one likes a bone marrow biopsy. It can be a somewhat uncomfortable procedure.  

Katherine Banwell:

How often would a patient need to have a biopsy? 

Dr. Eytan Stein:

Yeah, so they have bone marrow biopsies at diagnosis, and then they often will have bone marrow biopsies two weeks to a month later.  

And then, if they’re in remission, basically any time you think if you want to check to see if they’re in remission or if you suspect the patient is relapsing. Then, you would do a bone marrow biopsy. But what I was getting at is that but you have blood. And the blood is kind of like the bellwether of what’s going on in the bone marrow.  

So, the analogy I use for my patients is, you know, when you’re driving your car and you have – you know, you don’t open the hood every day to make sure the car is running okay. You know, you’re driving your car, and if your car starts making a funny clinking sound, that’s when you open the hood.  

So, the blood is like the clinking sound. If you see something going wrong in the blood, that’s when you know you’ve got to open the hood and look under the hood. If the car is running just fine and you don’t see anything wrong in the blood, using the analogy, maybe you don’t need to do a bone marrow biopsy. 

Katherine Banwell:

What if a treatment isn’t working? What if it stops working or if the patient relapses? What do you do then? 

Dr. Eytan Stein:

Yeah, so when a patient relapses, which unfortunately happens more than we want it to, it’s important number one to do another bone marrow biopsy and at that point, do that mutational testing again because the mutations that are present at the time of diagnosis are not necessarily going to be present at the time of relapse, and sometimes, a new mutation might occur at the time of relapse.  

And again, what that mutational profile shows can help determine what the next best treatment for the patient is. There might be standard-of-care therapies. More chemotherapy might be recommended.  

When a patient relapses, I usually – excuse me – try to get them on a clinical trial because that’s the point where I think clinical trial drugs really have potentially major benefit for the patients, to help get them back into remission. 

Expert Perspective: Why Myeloma Patients Should Weigh in on Their Care Decisions

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Expert Perspective: Why Myeloma Patients Should Weigh in on Their Care Decisions from Patient Empowerment Network on Vimeo.

Myeloma specialist Dr. Abdullah Khan shares key advice encouraging patients to participate in care and treatment decisions and discusses the importance of communicating symptoms and side effects to your healthcare team.

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

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Transcript:

Katherine:

Let’s turn to decision-making, Dr. Khan. What is the role of the myeloma patient when making care and treatment decisions?  

Dr. Khan:

As a provider, my role is to inform the patient of the facts and the need for a decision. The purpose of the discussions is to determine the patient’s goals and preferences, because it’s essential the patient’s values of respected. The best outcomes occur when the medical facts align with the patient’s preferences. And this is a multi-disciplinary team approach.  

Katherine:

Why is it so important for patients to share any symptoms and side effects they’re having with their healthcare team?   

Dr. Khan:

I read something recently on an NIH website titled “What Do I Need To Tell the Doctor?” that I think answers this question well. And I’m quoting the article. “Talking about your health means sharing information about how you feel physically, emotionally, and mentally. Knowing how to describe your symptoms and bringing up other concerns will help you become a partner in your healthcare.”  

I think I really like that end, “partner in your healthcare.” The patient’s symptoms and suggest disease or disorder in the body. If there are concerns, this may prompt a clinic visit or the patient may be advised to go to the closest ER or urgent care depending on the urgency of the situation. But in other cases, the healthcare team may help provide reassurance that the symptom can be continued to be monitored more resolution, or it can be evaluated in more detail if it persists or worsens.  

Katherine:

What about side effects? Why is that important for patients to share any side effects they may be having?  

Dr. Khan:

Side effects may be a result of the disease itself. It might be a marker of the side effects from the treatment. Or I’m focused on the multiple myeloma, but there’s every other organ system in the body that also needs help. So, the myeloma might be doing okay. The treatment might be doing okay. But, for example, we might have a lung toxicity from their pre-existing COPD or a heart toxicity from their pre-existing coronary artery disease. So, it’s very important to share all symptoms So, we can see how to properly assess it.   

Katherine:

And better care for the patient.  

Dr. Khan:

Right.  

What You Should Know About DLBCL Treatment Side Effects

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What You Should Know About DLBCL Treatment Side Effects from Patient Empowerment Network on Vimeo.

Once a patient begins diffuse large B-cell lymphoma (DLBCL) treatment, what side effects could they experience? Dr. Kami Maddocks, reviews potential side effects and how they may be managed.

Dr. Kami Maddocks is a hematologist who specializes in treating patients with B-cell malignancies at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Maddocks.

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Transcript:

Katherine:

What are the side effects that patients can expect with these treatments?  

Dr. Maddocks:

So, when they get the treatment, on the day they get it, there can be an infusion reaction to the rituximab or antibody therapies. So, the first treatment, that treatment is given very slowly and titrated up. If patients have a reaction, we stop it, treat the reaction, and then they’re able to continue therapy but again, that first day, it can take several hours for that one antibody to get in. And then, later, therapies are given at a more rapid pace.   

So, about 70 percent of people who react, it can be really almost anything. Some people get flushing, some people will get a fever, some people –have shortness of breath or their heart rate will go up. 

Katherine:

Okay. All right. Any other side effects? 

Dr. Maddocks:

Yeah. So then chemotherapy is meant to kill cells during the cell cycle. So, cancer cells divide more rapidly, chemotherapy is targeting them, but it also effects good cells in the body, specifically those that divide at a more rapid pace. The biggest risk of chemotherapy is infection.  

So, it effects the good white blood cells that fight infections. It can affect your red cells that carry your iron, gives you your energy. Or your platelets which help you to clot or not bleed when you get caught. So, infection is the biggest risk of chemotherapy. So, usually, with this regimen, that infectious risk is highest within the second week of treatment, that treatment is given every three weeks.  

So, we tell patients they should buy a thermometer, check their temperature, they have to notify their doctor or go to the ER if they have a fever. Besides infection, there’s a small percentage of patients who might need a transfusion. GI toxicity. So, nausea, vomiting, diarrhea, mouth sores, constipation, all of which we have good treatments for. So, we give medication before chemo to try to prevent people from getting sick and then give them medicine to go home with, if they have any nausea. We can alter those medications as time goes on, if they’re having any problems. So, we just need to know about it. Most patients will lose their hair with this regimen.  

It can affect people’s tastes, it can make their skin more sensitive to the sun, and then, less common but potential side effects are it can cause damage to the nerves. Or something we call neuropathy, which most often patients will start with getting numbness or tingling in their fingers and toes, and we can dose adjust if that’s causing some problems.  

And then, there’s a risk to the heart with one of the drugs. So, the heart should pump like this. The heart pump function can go down. So, we always check a patient’s heart pump function before they get their chemo, to make sure that they’re not at higher risk for that to happen.  

Katherine:

So, all of these approaches are used in initial treatment?  

Dr. Maddocks:

Mm-hmm. 

Katherine:

Okay. 

How to Treat PV-Related Itching

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How to Treat PV-Related Itching  from Patient Empowerment Network on Vimeo.

Dr. Jeanne Palmer, from the Mayo Clinic in Arizona, explains pruritis, which is the itching related to polycythemia vera (PV), and discusses strategies for managing this MPN symptom.

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

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Transcript:

Katherine Banwell:

We received some audience questions prior to the program today. This one is from Jacqueline, “What can I do to minimize pruritus or itching due to PV? A typical histamine blocker like Claritin or Zyrtec has done nothing whatsoever.” 

Dr. Jeanne Palmer:

Yeah. Unfortunately, the itching of this is not as much mediated by an allergic type reaction or histamine. It’s a lot related to that microvasculature, those tiny little blood vessels. Things like avoiding hot showers, as we talked about, taking cooler showers or not even taking showers, just like cleaning yourself with a washcloth can be helpful. There are certain medications that we can use sometimes that help. 

Now, first of all, Jakafi is extremely effective for itching. Of course, it does have side effects. It’s not always approved for your disease, so for example, it’s not approved for essential thrombocythemia. But JAK inhibitors can be helpful in that setting. There are also medications like gabapentin, which is a medicine that we use to treat peripheral neuropathy and that can actually be helpful because actually the itching, a lot of it is related to nerves not functioning right, so gabapentin can be helpful. 

And a really old-school medicine that I sometimes use, especially if the itching is most prevalent at night, is a drug called doxepin, and that’s been around for a very long time, but it can be extremely sedating and has to be used with caution, especially in patients who are older. 

How Can Patients Navigate Care and Thrive With an MPN?

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How Can Patients Navigate Care and Thrive With an MPN?  from Patient Empowerment Network on Vimeo.

What does it mean to thrive with an MPN? Dr. Jeanne Palmer, an MPN specialist from the Mayo Clinic, shares advice on navigating MPN care and stresses the importance of communicating openly with your healthcare team.

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

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Transcript:

Katherine Banwell:

What does it mean to you to thrive with an MPN?

Dr. Jeanne Palmer:

I think living with an MPN can be very difficult. I think there is a number of things. First of all, there’s always the worry of what’s going to happen in the future. Many of these MPNs can start as fairly, for lack of a better term, as benign issues and can convert to something much more serious. So, I think living with that sort of timebomb in the back it can be extremely stressful. So, figuring out how to live with the fact that there is some degree of uncertainty.

I think the other thing is making sure to understand your disease. These are very rare disorders and even if you go to a hematologist-oncologist specialist, a lot of times they don’t have all the information because they don’t see a lot of them every year. So, it’s really important to make sure that above and beyond that you understand what’s going on in your body so that when new things happen, new symptoms happen, you’re able to really address them as opposed to sort of living with something that may make you feel poorly that’s not being addressed.

So, again, I think the biggest piece of this is seeing how do you live with uncertainty and how do you make sure you understand your disease well enough that you know what’s going on in your own body. 

Katherine Banwell:

Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why do you think it’s important for patients to speak up when it comes to symptoms and side effects?

Dr. Jeanne Palmer:

Well, there is a lot of things. This is a disease, again, that we can direct our therapy many times towards symptoms, and so when we think about how do I direct my therapy, so how do I treat somebody, symptoms are an incredibly important part of it. And there is nothing worse than having a patient come and see me who I see every six months, because they’ve been pretty stable and they’re like, “Oh, for three months I’ve been feeling awful.” And you’re like, well, “Why didn’t you let me know, we could do something about this?”

So, if there is something that doesn’t feel right, it’s very, very important to talk to your healthcare provider. I would much rather be bothered and handle something earlier on than miss something and really have a lot more catch-up to do afterwards.

The other thing is symptoms may indicate a blood clotting event. We know that patients will have a higher risk of blood clotting. These are extremely important to identify early on because if they go unchecked, they can cause more damage. 

Katherine Banwell:

Dr. Palmer, was we close out this conversation I wanted to get your thoughts on where we stand with progress in helping people live longer and truly thrive with MPN. What would you like to leave the audience with?

Dr. Jeanne Palmer:

So, I think that the first thing is make sure you understand your disease. Don’t hesitate to ask for a second opinion. It’s always good to make sure you talk to someone who can really explain so you feel like when you go home you understand what’s going on in your body. Make sure you understand what symptoms to look for, what things to be aware of, because a lot of times people come in and they have no idea that, oh, these symptoms are actually related to their disease.

The other thing to make sure is that you’re very honest with your provider on how you’re feeling. A lot of times people come in and they say, “Oh, how are you feeling?” “I feel fine,” but then they start to ask very specific questions and they’re like, “Oh yeah, I’m really tired, my fatigue is an 8 out of 10,” or something.

So, make sure you’re really honest with your provider. When they ask you how they’re doing, this is not a social visit, this is a visit where they need to know your symptoms, so you don’t need to say I’m fine like you normally would if you were walking down the street.

The next thing is to always make sure to know where there’s clinical trials because we are making enormous great leaps and bounds in this field. It’s a really exciting time for myeloproliferative diseases, and there’s a number of new drugs that are being tested and coming out. So, it’s always important, if the opportunity is available and you can do it, clinical trials are a great way to get treatment.

Plus, you are giving back, because these are things that help us learn whether something works or not. So, you’re not as much a guinea pig, you never get a sugar pill. It’s one of those things will you will always get the treatment you need and then they may add something to it or you may be in the situation where there is no treatment, so they try something.

But clinical trials, I have to emphasize, are a great way to get therapy and really are how we know everything that we know about treatment for these diseases.

Katherine Banwell:

Yeah. It sounds like there’s a lot of progress and hope in the field.

Dr. Jeanne Palmer:

Oh, absolutely. 

What Are Common Side Effects of DLBCL Treatment?

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What Are Common Side Effects of DLBCL Treatment? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar reviews common side effects of diffuse large B-cell lymphoma (DLBCL) treatment.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

What are common side effects of DLBCL treatment approaches? 

Dr. Matasar:

Like anything, the side effects are dependent upon the treatments that we use. So, treatments that use chemotherapy-based approaches will often have the side effects that we associate with chemotherapy. And obviously not all chemotherapies are created equally. But treatments like R-CHOP or R-CHP-pola, or Polarix regimen, these are treatments that use traditional cytotoxic chemotherapy agents and anthracycline based chemotherapy that have well-characterized side effects that are unfortunately unavoidable but often temporary things like hair loss.  

And hair loss is unavoidable with these treatments although temporary.   

The Oncovin or polatuzumab treatments can lead to a problem called neuropathy, which can manifest as numbness or tingling in the fingers or toes or constipation because our intestines have nerves too that are affected by these treatments. Certainly fatigue and lowering of the immune system are common with these and other chemotherapy medicines as well. And your doctors will always talk to you about ways to reduce the risk of infection such as vaccination and such as anti-infective medicines or immune boosting medicines to try to limit the risk of infection while receiving such treatments.  

Why Should You Consider Seeing a DLBCL Specialist?

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Why Should You Consider Seeing a DLBCL Specialist? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar explains the benefits of seeing a diffuse large B-cell lymphoma (DLBCL) specialist and encourages patients to be partners in their own care.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Transcript:

Katherine Banwell:

Why should DLBCL patients consider seeing a specialist? What are the benefits? 

Dr. Matasar:

The benefits of a specialist in the treatment of diffuse large B-cell lymphoma is that this field is changing rapidly. Treatments like this R-CHP-pola regimen, we understand that these data are very new reported only months ago but perhaps academic centers may have a greater sophistication or comfort with using these newer data to support the care of our patients.  

The second is that there are many important and highly relevant clinical trials that are ongoing as we continue to try to improve outcomes for patients with diffuse large B-cell lymphoma either receiving their first treatment or for those patients who, unfortunately, suffer relapse. Some of these treatments may only be available at academic centers of excellence and understanding that your options for treatment may be different under the care of an expert in this disease is an important thing to consider when trying weigh how best to approach receiving care.  

What Are the Risks of CAR T-Cell Therapy?

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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.

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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.  

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

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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.

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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

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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.

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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.  

What is YOUR Role in Choosing a CLL Treatment Approach?

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What Is YOUR Role in Choosing a CLL Treatment Approach? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff shares her perspective on the role of patient when deciding on a CLL treatment approach and reviews key factors that should be considered.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

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Transcript:

Katherine Banwell:

What is the patient’s role in deciding on a treatment plan? 

Dr. Jean Koff:

So, it’s very important that the patient be involved in deciding on a treatment plan. Especially in first-line. Because we have these two excellent classes of agents, the BTK inhibitors and the venetoclax- containing regimens. Both of them have been shown to have very good what we call efficacy CLL, meaning that they’re able to control the disease, patient’s symptoms largely at bay for long periods of time. You know, we’re talking an average of years that – that patients are on these therapies. And they each, like I said have different side effect profiles.  

And they’re given in slightly different ways. And so, right now we don’t have data from our clinical trials comparing a BTK inhibitor regimen to a venetoclax-containing regimen in CLL patients to tell us one is better than the other. And so, for that reason, a lot of the decision-making about which therapy is going to be better for you, or which therapy you would prefer, lies with the CLL patient rather than with the doctor. And the things that I ask my patients to consider, there are a couple different things. One is the side effect profile. So, patients may be more or less comfortable with certain  

side effects of one drug compared to another. Or there may be something in the patient’s medical history that puts them more at risk for a certain side effect than another. 

The other major player in this decision-making process is how these drugs are given. So, with ibrutinib (Imbruvica), the ibrutinib is given as a pill that you take once a day, and you take it indefinitely. Meaning you take that pill once a day for as long as it’s doing what it’s supposed to do, which is keeping your CLL under control, and as long as the patient is tolerating it well, meaning you’re not having a lot of uncomfortable side effects from the ibrutinib. So, I have patients who have been on ibrutinib for years and years and years and years.  

The venetoclax-containing regimen for patients who are getting their first-line treatment in CLL is different. It is designed as a – what we call time-limited therapy. And so, this regimen is given in – over about 12 months, 12 or 13 months, and then stopped, as long as the patient has had a good response. The other thing to consider with the venetoclax r egimen, it’s not just the pill. You do take a pill every day, but you also get a – an infusion for about six months of the monoclonal antibody. Meaning that you’ll have to come into the infusion center and get an infu – an IV infusion of this drug called obinutuzumab. The last consideration with the venetoclax regimen that differs in how it’s administered, is the venetoclax often works so well that it can break down the CLL cells a little bit too quickly. And so, for patients who have a very, very high white count, or large lymph nodes due to their CLL, there is a risk of something we call tumor lysis syndrome, which refers to the process where the tumor cells break down very, very quickly, and they produce molecules that are released into the bloodstream that can be dangerous if they get too high or too low. And so, sometimes, in some patients we have to monitor for the tumor lysis syndrome by checking labs fairly frequently after we start the venetoclax. And for some patients that means they have to stay overnight for a night or two in the hospital for lab monitoring.  

So, for some of my patients that I talk to about venetoclax, they say I want to stay out of the hospital, I just want to take a pill, I’m fine taking a pill, I’ll go with the BTK inhibitors. For other patients, they say I don’t want to be on a pill every single day, I will go through this year of therapy, I’m comfortable with that, and I’m happy that I’ll be able to take a break from therapy after one year. So, that ends up being a large factor in many of the conversations I have with my patients about which therapeutic approach we’re going to use in front-line therapy.  

How Does Immunotherapy Treat Bladder Cancer?

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How Does Immunotherapy Treat Bladder Cancer?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari from Fox Chase Cancer Center explains immunotherapy and how this therapy works to treat bladder cancer. Dr. Anari also discusses the importance of communicating how you’re feeling with your healthcare team.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

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Transcript:

Katherine Banwell:

What is immunotherapy and how does it work to treat bladder cancer?  

Dr. Anari:

So, immunotherapy, the analogy that I often use when I see patients is immunotherapy goes in by IV, and it acts as the drill sergeant. And it trains your own body’s immune system or the soldiers to find and fight the cancer cells. So, that’s really how it really works. The drug itself is training your own body to do the work. 

Most people will have no side effects from this. And they tolerate it really well. However, because the immune system is getting a little bit activated, sometimes those soldiers or your immune cells can go rogue. And they can start attacking normal healthy tissue in the body, almost like an autoimmune disease. 

So, when on these drugs, it’s really important if anything is new or different to let your doctors know, because it’s often easy to troubleshoot over the phone or at a quick office visit if it’s related to immunotherapy or not. So, it’s really important that you keep that in mind whenever a new symptom or anything may pop up.  

Katherine Banwell:

That’s great information – it’s really important to communicate any issues you may be having. So, who is immunotherapy right for? Is it right for every bladder cancer patient?  

Dr. Anari:

So, immunotherapy is used in several different settings for bladder cancer treatment. It’s used in the metastatic bladder cancer treatment world mostly. Often, we use it as either a second-line treatment after chemotherapy or in a maintenance-type approach after someone’s completed their chemotherapy, meaning we plan for about two years of treatment. And patients that can’t get chemotherapy for whatever reason we can use immunotherapy as a first-line treatment.  

And it’s also used in localized bladder cancer meaning cancer that’s contained only to the lining of the bladder in patients who’ve gotten treatments that go inside the bladder called BCG. When their cancer isn’t responding, immunotherapy is also an option there.  

Katherine Banwell:

And what might be some of those side effects that patients should look out for?  

Dr. Anari:

So, what I tell everyone is they can get inflammation or an “itis” of anything. So, some examples of that: If someone has a rash, that’s called dermatitis. That can be mild, or it can be severe. If someone has inflammation of the bowels or colitis, they can have diarrhea that starts all of a sudden.  

Another example is pneumonitis or inflammation of the lungs. People may have cough, trouble breathing, low oxygen levels. It really can affect any organ system that you have. So, that’s why it’s really important if something feels different to let your doctors know.   

It’s also really important if you’re not near your doctor for whatever reason and you end up seeing a local doctor, let’s say, at an emergency room that you let them know that you’ve received immunotherapy because they’ll think about the problems that you’re having a little bit differently.