Tag Archive for: maintenance therapy

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides an overview of follicular lymphoma treatments available to newly diagnosed patients and reviews the pros and cons of oral regimens and stem cell transplant. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

Now that we’ve discussed factors that can impact treatment decisions, would you walk us through the currently available follicular lymphoma treatment approaches? And who they might be right for?

Dr. Phillips:                 

Sure. So, we’ll start with the newly diagnosed or untreated patient. So, again, if you’re newly diagnosed or untreated, your options are the monoclonal antibody, Rituximab. Again, that’s a CD20 monoclonal antibody.

That is typically given once weekly for four weeks and can be repeated, if need be, after a break. And that’s usually reserved for patients who have minimal symptoms, low burden disease. Because, again, data has shown that the bulkier the disease, you’re likely not to have a very durable or deep response with just simulating Rituximab. Additional options include Rituximab plus chemotherapy.

So, we have regimens such as CDP, which is Cytoxan, vincristine, and prednisone. Cytoxan and vincristine being a steroid, prednisone being — sorry, Cytoxan and vincristine being a chemotherapy agent, and prednisone being a steroid. We have our bendamustine, bendamustine being a chemotherapy agent. There’s R-CHOP, which is Cytoxan, vincristine, Adriamycin, and prednisone. And sometimes that is reserved, because unlike the other two, R-CHOP can only be given once because of the accumulation of the anthracycline.

You can only have so much of that in a lifetime before you run a risk of cardiac toxicity.

Katherine:                  

Oh.

Dr. Phillips:                 

And also, R-CHOP as of right now is a standard of care for diffuse large B-cell lymphoma. Which every patient with follicular lymphoma has a chance of transforming into diffuse large B-cell lymphoma at some point. So, we tend to try to reserve R-CHOP if we can. Additionally, more recently, there was a study called Relevance, which evaluated RPMO versus an agent called lenalidomide plus Rituximab, what we call R squared.

So, it was designed as a superiority study, but what came out of it is R squared is probably equivalent, not better, than R chemo. So that is also an option up front. With lenalidomide it’s a little bit different than the other agents, which all give it intravenously, meaning through the vein. But lenalidomide is an oral medication, that you would take 21 days on, and seven days off. And that’s given in conjunction with the Rituximab. And you typically would take that for 12 cycles, or about a year of treatment.

Whereas the chemotherapy regimens that I mentioned before, are typically given for six cycles. Meaning you’ll be taking it for a duration of 18 weeks or 24 weeks. So around four and half to six months for the chemotherapy. Thereafter, it’s a bit controversial, but some patients can then transition to what we call Rituximab maintenance.

Where you would get Rituximab every other month for a period of two to three years. Typically, two years, as a way to delay the return of the cancer. So, R maintenance we know of improves your progression of survival, so the time until the cancer comes back. And there is no survival benefit with maintenance at this point. So, it is in some ways a bit controversial. Especially now, given the pandemic.

Katherine:                  

What about stem cell transplant? Is that an option?

Dr. Phillips:                 

So, for up front, that’s usually not something that we typically do. So, for stem cell transplantation, there are two types of stem cell transplantation. There’s one called an Autologous Stem Cell Transplantation, which is basically really a stem cell rescue.

You get a high dose of chemotherapy after stem cells are collected from you and those stem cells are given back to rescue your body from the chemo. That is typically reserved for what we call high risk patients. So, we give you an initial up front chemotherapy regimen. And if your cancer comes back within less than 24 months of completion of that therapy, you fall into what we call a POD24 category. Which means Progression of Disease within 24 months.

We do know those patients are at higher risk, than patients who stay in remission for at least 24 months or longer. So, if we look at overall survival for those POD24 patients, about half of those patients will succumb to their disease within a five-year period. Which is much different for what we see with the standard for follicular lymphoma patients. So, and that POD24 category it does appear that Autologous Stem Cell Transplantation is beneficial in that patient population. As well as an Allogenic Stem Cell Transplant. So, an allogenic transplant is when you get immune cells from another donor.

So, “allo” meaning from a different person. So, in that sense, you get sort of temporized, and they would give you donor lymphocytes. And those lymphocytes themselves would try to fight off your cancer. So, an Auto transplant is mainly just chemo; an Allo transplant, the donor cells help fight off the cancer.

Katherine:                  

Right.

Dr. Phillips:                 

There are complications to both, which is why they’re not typically given up front. The Allo transplant probably has more risk of complications as well. Those cells can also recognize your body as being foreign and try to fight them off because they don’t originate from you. And there’s also just a risk of other death from that procedure. So, all those have to be taken with a bit of caution. And for the Allo transplant, it’s generally only recommended if you have that, a sibling donor. Because there’s much less risk of complications than versus you get an unrelated donor.

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the importance of patient self-advocacy in the treatment of follicular lymphoma. Dr. Phillips reviews shared decision-making, encourages patients to seek second opinions, and to feel confident in their treatment plan. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

Yeah, right. What do you feel is the patient’s role in treatment decisions?

Dr. Phillips:                 

So, I know historically a lot of times, you come into an office, and we tell you what you’re going to get and what you’re not going to get. Patients nowadays are I would say a lot more savvy as far as what drugs are out there. And there are a lot more sort of conversational groups on social media between patients who’ve had treatment before and newly diagnosed patients. So, patients come in with a lot more information than they had historically had before. So, in that point, I think it’s more of an open dialogue about what options we have, what options are best for you, and what our treatment goals are at that point.

But all it means, given that we don’t yet have a standard of care, it leaves it open for discussion about sort of which route we choose to try to get your cancer under control.

Katherine:                  

Mm-hmm. Dr. Phillips, if a patient isn’t feeling confident with their treatment plan or their care, do you think they should consider a second opinion or a consult with a specialist?

Dr. Phillips:                 

I think a second opinion is probably best for all patients. It’s always probably good to get a different opinion about how the disease will be treated. So, I do encourage all my patients, even here, to get a second opinion. Some take me up on it, others won’t. But the option is always there to get a second opinion, just to see if anybody would do things any differently.

And I would say for the most part, most people would tend to treat the same way. Very seldom do we have differences in what our treatment recommendations would be. I think the biggest difference in some situations, it’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays.

Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Katherine:                  

Mm-hmm. What would you say to a patient who may be nervous about offending their current doctor by getting a second opinion?

Dr. Phillips:                 

You shouldn’t be. If your doctor is offended because you’re getting a second opinion, that’s probably not the doctor for you. Yeah, I think that at this point, any physician that’s confident in their decision they’re giving you should not be offended if you go seek reassurance from somebody else.

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides insight on how to personalize follicular lymphoma treatment decisions. Dr. Phillips discusses the efficacy of some treatment combinations and which factors impact the decision to begin treatment.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?


Transcript:

Katherine:                  

What is considered when choosing a treatment? Are there test results that can impact the options?

Dr. Phillips:                 

So, there are. So, for the most part we’ll take a couple of things into consideration. So, there is no standard of care for follicular lymphomas. So, there are a couple different options that can be utilized in the upfront setting for the untreated patient. So, comorbidities play a part in what sort of treatment we choose. Patient’s age and fitness will play a part. If there’s any heart disease, that will play a part in the situation as well. And also, as I said, stage will play a part in sort of what our treatment goals are.

So, if our treatment goal for a really unfit patient who we don’t think can tolerate chemotherapy, it’s just symptom control. And they don’t have a lot of disease, we can sometimes treat them with just a monoclonal antibody we call Rituximab as a single agent.

If the patient has a lot of disease, and they are a fit patient, we will tend to combine Rituximab with several different chemotherapy regimens. Because Rituximab plus chemotherapy works better than chemotherapy and also Rituximab alone, especially depending on the amount of the disease that we’re trying to treat. And again, as I mentioned before, if it’s a localized patient there is known to be radiation plus or minus Rituximab in that situation.

But because of some of the side effects of the drugs we use, and obviously now we’re in a pandemic, a lot of those will take sort of some of the consideration of what we use. Some of the drugs that we use are either more sort of immunosuppressants than others, and obviously being in a pandemic, we have to take that into consideration because we’re not treating to cure. Some of the drugs can cause heart damage, some of the drugs can damage nerves, some of the drugs include steroids, which might be prohibited with some patients. So, all that sometimes has to be taken into consideration when we choose our regimen.

Katherine:                  

Yeah. It sounds like there are a lot of factors coming into play here.

Dr. Phillips:                 

Yeah, I mean normally, without a pandemic there’s a lot of factors, and the pandemic just makes things a little bit harder. Just because, again, our patients are already at risk based with some of the treatments we choose.

Katherine:                  

Yeah. Yeah. It’s pretty challenging right now. Does treatment typically start right away?

Dr. Phillips:                 

So, that really depends on a stage and also whether we meet certain sort of criteria to treat. So, we don’t have to treat right away. So, if a patient has a disease, and the disease is not in an area where we think it’s curative, for the most part we can enter into what we call a watch and wait. Meaning we will observe a patient very closely and defer treatment until the patient develops symptoms or other indications that warrant treatment.

We do know that there is no impact on longevity by sort of partaking in this approach. So, you won’t live any longer or you won’t live any shorter if we watch and wait versus initiating therapy right away. It just saves you from having some of the toxicities from treatment without any real major benefits.

So, remember the goal for most patients with follicular lymphoma is to alleviate symptoms or problems. If you don’t have a symptom or a problem, me giving you treatment is not going to make you feel any better. Actually, it would probably make you feel a little bit worse. To get you back to where you were when you started.

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews the main treatment goals for follicular lymphoma. Dr. Phillips provides insight on treatment decisions based on the patient’s staging and symptoms. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

 
Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

How about we begin with treatment goals? What does this mean exactly and what are the goals of treatment for follicular lymphoma?

Dr. Phillips:                 

So, for the vast majority of patients, follicular lymphoma unfortunately to date is not curable. So, for those patients the goal of treatment when we initiate treatment is to alleviate any symptoms that may be caused by the lymphoma.

So, the patient has fevers, they have night sweats, or there’s some sort of organ damage from the cancer, our goal of treatment is to reverse that and put the cancer into what we call a remission. Remission basically means that from the test that we have currently, we cannot find any evidence of the cancer. That does not mean that you’re cured from the cancer. Patients with earlier stages – so, if you have a patient with stage one or a localized stage two, we approach that with a little bit of a different treatment mindset.

So, if we can catch it early enough, which is very hard given because of the cancer. So, these are really incidentally found, and in some cases, by luck. We can potentially cure follicular lymphoma in these patients. But that’s more of a curative intent with radiation and not systemic therapy. With the advent of PET scans, which have made it a little bit easier to find all the hidden areas of where the follicular lymphoma may hide out, concurrently with a bone marrow biopsy, if a patient is truly stage one, we will initiate therapy with a curative intent.

Whereas, again, with the other patients, our goal is just to control the symptoms and put you into remission.

What Are the Stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

How does follicular lymphoma progress? Expert Dr. Tycel Phillips discusses the disease’s stages and the impact on treatment options.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Is Follicular Lymphoma?

What Is Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?


Transcript:

Katherine:                  

You’ve touched upon this briefly, but what are the stages of follicular lymphoma? How does it progress?

Dr. Phillips:                 

So, when we talk about follicular lymphoma, so, in stages there are four stages. Stage one, which means it’s localized in one general area. Or potentially into one organ. Stage two means that it is on one side of the diaphragm. So, we use your diaphragm as sort of a dividing point. Sort of like a Mason-Dixon line of the body. So, if it’s all on one side, it’s a stage two. If you have disease both above and below the diaphragm, you’d be considered to be stage three. Stage four indicates that you either have an organ involved in a nonadjacent lymph node.

So, let’s just say there’s a spot in your liver and you have a lymph node in your neck, or if your bone marrow is involved. For the most part, most patients with follicular lymphoma, because again, when develops, it doesn’t really develop with symptoms and typically is in there for quite a bit of time. Most patients will have what we consider to be advanced stage of this disease, meaning it’s stage three or four. Because the cancer has quite a bit of time to grow and move around before we find it.

It also comes in a set of grades. So, stage and grades are different. Stage is location, grade is what the pathologist sort of looks at when he looks under a microscope – how angry or big the cells look. So, we typically divide it into grades one and two; it’s very hard to separate one and two, so it’s generally grouped together. Which means there are mostly small round cells and very few big cells. And then we have grade 3A and grade 3B. And grade 3A means that when they look at it under the microscope, they see a fair number of larger cells which means that’s probably a bit more aggressive than the grade one to two.

And grade 3B is sort of separated into a category of its own. And we tend to treat grade 3B as a more aggressive lymphoma. we treat that very closely, like we treat the diffuse large B-cell lymphomas. So, grade 3B is in a category of its own, and then grades one to two and grade three are sort of clumped together.

What Is Follicular Lymphoma?

What Is Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips gives his expert definition of follicular lymphoma and explains why this disease is often found incidentally. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?


Transcript:

Katherine:                  

What exactly is follicular lymphoma?

Dr. Phillips:                 

So, follicular lymphoma is a malignant growth or tumor in some situations, depending on how you want to describe it, of lymphocytes. Lymphocytes are normal cells that we have in our body and are a very important part of our immune system. For a very generic sort of description, lymphocytes come in what we call B and T-cells. B-cells, as I mentioned, are the cells that help make antibodies and it’s how we fight viruses and other diseases. These antibodies help our immune system recognize and hopefully clear these pathogens quicker.

And then we also have T-cells, which I like to refer to as like jailers, who will survey and sort of try to eliminate any abnormal cells. Lymphoma can come in a B-cell lymphoma or a T-cell lymphoma. For western Europe and the U.S., B-cell lymphomas account for the vast majority of cases of lymphoma; about 85%. When we look at B-cell lymphomas, we have Hodgkin’s Lymphomas, which are a separate category, and non-Hodgkin’s lymphomas.

And follicular lymphoma is the most common indolent, or what we consider slow growing, of non-Hodgkin’s lymphomas. So, when we talk about indolent as slow growing, these are lymphomas that are more than likely to be found incidentally by CAT scans. Or if you’re going for some other procedure, they’ll notice that you have enlarged lymph nodes and a biopsy will lead to a diagnosis of follicular lymphoma. In most cases, the cancer has probably been there for several years, at least months, before it’s been found. And in most cases, most patients have been living happily unbeknownst to them together with this cancer.

And so, follicular lymphoma being in that way is something that, again, we consider to be slow growing because, again, the more aggressive lymphomas tend to come with symptoms. So, these can come on more insidiously and are typically found incidentally.

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients?

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the efficacy and safety of the COVID vaccine for follicular lymphoma patients. Dr. Phillips reviews the effects it may have on patients and provides his expert advice.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

Is the COVID vaccine safe and effective for follicular lymphoma patients?

Dr. Phillips:                 

So, the vaccine is safe. The effectiveness of the vaccine does in some part depend on whether the patients are untreated or they’re currently on treatment. Some of the treatments that we use to combat follicular lymphoma and other lymphomas unfortunately targets one of the key cells in the response to the vaccine. So, as follicular lymphoma is a cancer of the malignant B-cell, one of our treatments are directed, you know, obviously killing off malignant B-cells. And unfortunately, we do take some innocent bystanders. So, your normal B-cells will be impacted, which does sometimes impact your abilities to make antibodies.

But we do know from research that the vaccines will also trigger a T-cell response, which most of our treatments will not impact. So, well, we do recommend for our patients to be vaccinated. Because, again, it is safe. And, again, it is effective even if it’s not as effective as it would be if you weren’t on treatment.

Katherine:                  

Mm-hmm. Better to be safe than sorry.

Dr. Phillips:                 

Yes.

What Is Maintenance Therapy for Non-Small Cell Lung Cancer?

What Is Maintenance Therapy for Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. David Carbone responds to a patient question about the purpose of maintenance therapy for lung cancer and what to expect.

Dr. David Carbone is a medical oncologist and professor of internal medicine at The Ohio State University. Dr. Carbone is also co-leader of the Translational Therapeutics Program at the OSUCCC – James, where serves as director of the Thoracic Oncology Center. Learn more about Dr. Carbone, here.

See More From INSIST! Lung Cancer

Related Resources:

What Treatments Are Available for Non-Small Cell Lung Cancer?

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Immunotherapy for Lung Cancer Treatment: What to Expect

Immunotherapy for Lung Cancer Treatment: What to Expect


Transcript:

Katherine:

Lindsay sent in this question: “My doctor has talked about putting me on maintenance therapy following my treatment regimen. What is maintenance therapy for lung cancer?”

Dr. Carbone:              

So, many of our treatments have a maintenance phase, and I’m not sure which treatment she’s talking about. But even with chemotherapy, now, if people are on chemotherapy alone, will usually use a double chemotherapy to start, and then will drop one of the chemos after a few cycles, and then continue the other as a maintenance.

A more typical regimen today is a combination of two chemos and an immunotherapy. And generally, we’ll stop the more toxic chemotherapy after a few cycles and continue the less toxic chemotherapy plus the immunotherapy, usually for up to two years.

After chemo-radiation, you’d have a maintenance immunotherapy as well. So, maintenance therapy is just a lower-intensity therapy after your initial therapy, designed to keep the cancer from coming back.

Follicular Lymphoma Treatment Decisions: What’s Right for You?

Follicular Lymphoma Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering therapy for follicular lymphoma, what determines the best treatment for YOU? Dr. Tycel Phillips reviews key factors for making treatment decisions, tips for partnering with your healthcare team, and shares an update on emerging treatment and research.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Download Guide

Related Programs:

Follicular Lymphoma Care Partner Follow-Up Visit Planner 

Follicular Lymphoma Caregiver First Office Visit Planner

Follicular Lymphoma Care Partner First Office Visit Planner

Follicular Lymphoma Patient Follow-Up Visit Planner 


Transcript:

Katherine:             

Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program, we’re going to learn more about follicular lymphoma. What it is, how it’s treated, and we’ll share tools to help you work with your healthcare team to access the best care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials.

If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the 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. Joining me today is Dr. Tycel Phillips. Welcome, Dr. Phillips. Would you please introduce yourself?

Dr. Phillips:                 

Hi, I’m Dr. Tycel Phillips. I’m an associate professor at the University of Michigan. I look forward to talking today.

Katherine:                  

Good. Thank you so much for taking the time out of your schedule. Before we learn about follicular lymphoma, let’s start with a question we’ve received that’s on the minds of many patients. Is the COVID vaccine safe and effective for follicular lymphoma patients?

Dr. Phillips:                 

So, the vaccine is safe. The effectiveness of the vaccine does in some part depend on whether the patients are untreated or they’re currently on treatment. Some of the treatments that we use to combat follicular lymphoma and other lymphomas unfortunately targets one of the key cells in the response to the vaccine. So, as follicular lymphoma is a cancer of the malignant B-cell, one of our treatments are directed, you know, obviously killing off malignant B-cells. And unfortunately, we do take some innocent bystanders. So, your normal B-cells will be impacted, which does sometimes impact your abilities to make antibodies.

But we do know from research that the vaccines will also trigger a T-cell response, which most of our treatments will not impact. So, well, we do recommend for our patients to be vaccinated. Because, again, it is safe. And, again, it is effective even if it’s not as effective as it would be if you weren’t on treatment.

Katherine:                  

Mm-hmm. Better to be safe than sorry.

Dr. Phillips:                 

Yes.

Katherine:                  

Let’s start at the very beginning. What exactly is follicular lymphoma?

Dr. Phillips:                 

So, follicular lymphoma is a malignant growth or tumor in some situations, depending on how you want to describe it, of lymphocytes. Lymphocytes are normal cells that we have in our body and are a very important part of our immune system. For a very generic sort of description, lymphocytes come in what we call B and T cells. B cells, as I mentioned, are the cells that help make antibodies and it’s how we fight viruses and other diseases. These antibodies help our immune system recognize and hopefully clear these pathogens quicker.

And then we also have T cells, which I like to refer to as like jailers, who will survey and sort of try to eliminate any abnormal cells. Lymphoma can come in a B-cell lymphoma or a T-cell lymphoma. For western Europe and the U.S., B-cell lymphomas account for the vast majority of cases of lymphoma; about 85 percent. When we look at B-cell lymphomas, we have Hodgkin’s Lymphomas, which are a separate category, and non-Hodgkin’s lymphomas.

And follicular lymphoma is the most common indolent, or what we consider slow growing, of non-Hodgkin’s lymphomas. So, when we talk about indolent as slow growing, these are lymphomas that are more than likely to be found incidentally by CAT scans. Or if you’re going for some other procedure, they’ll notice that you have enlarged lymph nodes and a biopsy will lead to a diagnosis of follicular lymphoma. In most cases, the cancer has probably been there for several years, at least months, before it’s been found. And in most cases, most patients have been living happily unbeknownst to them together with this cancer.

And so, follicular lymphoma being in that way is something that, again, we consider to be slow growing because, again, the more aggressive lymphomas tend to come with symptoms. So, these can come on more insidiously and are typically found incidentally.

Katherine:                  

You’ve touched upon this briefly, but what are the stages of follicular lymphoma? How does it progress?

Dr. Phillips:                 

So, when we talk about follicular lymphoma, so, in stages there are four stages. Stage I, which means it’s localized in one general area. Or potentially into one organ. Stage II means that it is on one side of the diaphragm. So, we use your diaphragm as sort of a dividing point. Sort of like a Mason-Dixon line of the body. So, if it’s all on one side, it’s a stage II. If you have disease both above and below the diaphragm, you’d be considered to be stage III. Stage IV indicates that you either have an organ involved in a nonadjacent lymph node.

So, let’s just say there’s a spot in your liver and you have a lymph node in your neck, or if your bone marrow is involved. For the most part, most patients with follicular lymphoma, because again, when develops, it doesn’t really develop with symptoms and typically is in there for quite a bit of time. Most patients will have what we consider to be advanced stage of this disease, meaning it’s stage III or IV. Because the cancer has quite a bit of time to grow and move around before we find it.

It also comes in a set of grades. So, stage and grades are different. Stage is location, grade is what the pathologist sort of looks at when he looks under a microscope – how angry or big the cells look. So, we typically divide it into grades 1 and 2; it’s very hard to separate one and two, so it’s generally grouped together. Which means there are mostly small round cells and very few big cells. And then we have grade 3A and grade 3B. And grade 3A means that when they look at it under the microscope, they see a fair number of larger cells which means that’s probably a bit more aggressive than the grade 1 to 2.

And grade 3B is sort of separated into a category of its own. And we tend to treat grade 3B as a more aggressive lymphoma. we treat that very closely, like we treat the diffuse large B-cell lymphomas. So, grade 3B is in a category of its own, and then grades 1 to 2 and grade 3 are sort of clumped together.

Katherine:                  

Okay. That’s very helpful, thank you. Now that we know more about follicular lymphoma and how it’s staged, let’s move on to treatment approaches. Many factors come into play, right, when making a treatment decision. Including a patient’s age and overall health. So, let’s walk through these considerations. How about we begin with treatment goals? What does this mean exactly and what are the goals of treatment for follicular lymphoma?

Dr. Phillips:                 

So, for the vast majority of patients, follicular lymphoma unfortunately to date is not curable. So, for those patients the goal of treatment when we initiate treatment is to alleviate any symptoms that may be caused by the lymphoma.

So, the patient has fevers, they have night sweats, or there’s some sort of organ damage from the cancer, our goal of treatment is to reverse that and put the cancer into what we call a remission. Remission basically means that from the test that we have currently, we cannot find any evidence of the cancer. That does not mean that you’re cured from the cancer. Patients with earlier stages – so, if you have a patient with stage I or a localized stage II, we approach that with a little bit of a different treatment mindset.

So, if we can catch it early enough, which is very hard given because of the cancer. So, these are really incidentally found, and in some cases, by luck. We can potentially cure follicular lymphoma in these patients. But that’s more of a curative intent with radiation and not systemic therapy. With the advent of PET scans, which have made it a little bit easier to find all the hidden areas of where the follicular lymphoma may hide out, concurrently with a bone marrow biopsy, if a patient is truly stage I, we will initiate therapy with a curative intent.

Whereas, again, with the other patients, our goal is just to control the symptoms and put you into remission.

Katherine:                  

What is considered when choosing a treatment? Are there test results that can impact the options?

Dr. Phillips:                 

So, there are. So, for the most part we’ll take a couple of things into consideration. So, there is no standard of care for follicular lymphomas. So, there are a couple different options that can be utilized in the upfront setting for the untreated patient. So, comorbidities play a part in what sort of treatment we choose. Patient’s age and fitness will play a part. If there’s any heart disease, that will play a part in the situation as well. And also, as I said, stage will play a part in sort of what our treatment goals are.

So, if our treatment goal for a really unfit patient who we don’t think can tolerate chemotherapy, it’s just symptom control. And they don’t have a lot of disease, we can sometimes treat them with just a monoclonal antibody we call rituximab (Rituxan) as a single agent.

If the patient has a lot of disease, and they are a fit patient, we will tend to combine rituximab with several different chemotherapy regimens. Because rituximab plus chemotherapy works better than chemotherapy and also rituximab alone, especially depending on the amount of the disease that we’re trying to treat. And again, as I mentioned before, if it’s a localized patient there is known to be radiation plus or minus rituximab in that situation.

But because of some of the side effects of the drugs we use, and obviously now we’re in a pandemic, a lot of those will take sort of some of the consideration of what we use. Some of the drugs that we use are either more sort of immunosuppressants than others, and obviously being in a pandemic, we have to take that into consideration because we’re not treating to cure. Some of the drugs can cause heart damage, some of the drugs can damage nerves, some of the drugs include steroids, which might be prohibited with some patients. So, all that sometimes has to be taken into consideration when we choose our regimen.

Katherine:                  

Yeah. It sounds like there are a lot of factors coming into play here.

Dr. Phillips:                 

Yeah, I mean normally, without a pandemic there’s a lot of factors, and the pandemic just makes things a little bit harder. Just because, again, our patients are already at risk based with some of the treatments we choose.

Katherine:                  

Yeah. Yeah. It’s pretty challenging right now. Does treatment typically start right away?

Dr. Phillips:                 

So, that really depends on a stage and also whether we meet certain sort of criteria to treat. So, we don’t have to treat right away. So, if a patient has a disease, and the disease is not in an area where we think it’s curative, for the most part we can enter into what we call a watch and wait. Meaning we will observe a patient very closely and defer treatment until the patient develops symptoms or other indications that warrant treatment.

We do know that there is no impact on longevity by sort of partaking in this approach. So, you won’t live any longer or you won’t live any shorter if we watch and wait versus initiating therapy right away. It just saves you from having some of the toxicities from treatment without any real major benefits.

So, remember the goal for most patients with follicular lymphoma is to alleviate symptoms or problems. If you don’t have a symptom or a problem, me giving you treatment is not going to make you feel any better. Actually, it would probably make you feel a little bit worse. To get you back to where you were when you started.                    

Katherine:                  

Yeah, right. What do you feel is the patient’s role in treatment decisions?

Dr. Phillips:                 

So, I know historically a lot of times, you come into an office, and we tell you what you’re going to get and what you’re not going to get. Patients nowadays are I would say a lot more savvy as far as what drugs are out there. And there are a lot more sort of conversational groups on social media between patients who’ve had treatment before and newly diagnosed patients. So, patients come in with a lot more information than they had historically had before. So, in that point, I think it’s more of an open dialogue about what options we have, what options are best for you, and what our treatment goals are at that point.

But all it means, given that we don’t yet have a standard of care, it leaves it open for discussion about sort of which route we choose to try to get your cancer under control.

Katherine:                  

Mm-hmm. Dr. Phillips, if a patient isn’t feeling confident with their treatment plan or their care, do you think they should consider a second opinion or a consult with a specialist?

Dr. Phillips:                 

I think a second opinion is probably best for all patients. It’s always probably good to get a different opinion about how the disease will be treated. So, I do encourage all my patients, even here, to get a second opinion. Some take me up on it, others won’t. But the option is always there to get a second opinion, just to see if anybody would do things any differently.

And I would say for the most part, most people would tend to treat the same way. Very seldom do we have differences in what our treatment recommendations would be. I think the biggest difference in some situations, it’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays.

Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Katherine:                  

Mm-hmm. What would you say to a patient who may be nervous about offending their current doctor by getting a second opinion?

Dr. Phillips:                 

You shouldn’t be. If your doctor is offended because you’re getting a second opinion, that’s probably not the doctor for you. Yeah, I think that at this point, any physician that’s confident in their decision they’re giving you should not be offended if you go seek reassurance from somebody else.

Katherine:                  

Yeah, good advice. Thank you. Now that we’ve discussed factors that can impact treatment decisions, would you walk us through the currently available follicular lymphoma treatment approaches? And who they might be right for?

Dr. Phillips:                 

Sure. So, we’ll start with the newly diagnosed or untreated patient. So, again, if you’re newly diagnosed or untreated, your options are the monoclonal antibody, Rituximab. Again, that’s a CD20 monoclonal antibody.

That is typically given once weekly for four weeks and can be repeated, if need be, after a break. And that’s usually reserved for patients who have minimal symptoms, low burden disease. Because, again, data has shown that the bulkier the disease, you’re likely not to have a very durable or deep response with just simulating Rituximab. Additional options include Rituximab plus chemotherapy.

So, we have regimens such as CDP, which is Cytoxan, vincristine, and prednisone. Cytoxan and vincristine being a steroid, prednisone being — sorry, Cytoxan and vincristine being a chemotherapy agent, and prednisone being a steroid. We have our bendamustine, bendamustine being a chemotherapy agent. There’s R-CHOP, which is Cytoxan, vincristine, Adriamycin, and prednisone. And sometimes that is reserved, because unlike the other two, R-CHOP can only be given once because of the accumulation of the anthracycline.

You can only have so much of that in a lifetime before you run a risk of cardiac toxicity.

Katherine:                  

Oh.

Dr. Phillips:                 

And also, R-CHOP as of right now is a standard of care for diffuse large B-cell lymphoma. Which every patient with follicular lymphoma has a chance of transforming into diffuse large B-cell lymphoma at some point. So, we tend to try to reserve R-CHOP if we can. Additionally, more recently, there was a study called Relevance, which evaluated RPMO versus an agent called lenalidomide plus Rituximab, what we call R squared.

So, it was designed as a superiority study, but what came out of it is R squared is probably equivalent, not better, than R chemo. So that is also an option up front. With lenalidomide it’s a little bit different than the other agents, which all give it intravenously, meaning through the vein. But lenalidomide is an oral medication, that you would take 21 days on, and seven days off. And that’s given in conjunction with the Rituximab. And you typically would take that for 12 cycles, or about a year of treatment.

Whereas the chemotherapy regimens that I mentioned before, are typically given for six cycles. Meaning you’ll be taking it for a duration of 18 weeks or 24 weeks. So around four and half to six months for the chemotherapy. Thereafter, it’s a bit controversial, but some patients can then transition to what we call Rituximab maintenance.

Where you would get Rituximab every other month for a period of two to three years. Typically, two years, as a way to delay the return of the cancer. So, R maintenance we know of improves your progression of survival, so the time until the cancer comes back. And there is no survival benefit with maintenance at this point. So, it is in some ways a bit controversial. Especially now, given the pandemic.

Katherine:                  

What about stem cell transplant? Is that an option?

Dr. Phillips:                 

So, for up front, that’s usually not something that we typically do. So, for stem cell transplantation, there are two types of stem cell transplantation. There’s one called an Autologous Stem Cell Transplantation, which is basically really a stem cell rescue.

You get a high dose of chemotherapy after stem cells are collected from you and those stem cells are given back to rescue your body from the chemo. That is typically reserved for what we call high risk patients. So, we give you an initial up front chemotherapy regimen. And if your cancer comes back within less than 24 months of completion of that therapy, you fall into what we call a POD24 category. Which means Progression of Disease within 24 months.

We do know those patients are at higher risk, than patients who stay in remission for at least 24 months or longer. So, if we look at overall survival for those POD24 patients, about half of those patients will succumb to their disease within a five-year period. Which is much different for what we see with the standard for follicular lymphoma patients. So, and that POD24 category it does appear that Autologous Stem Cell Transplantation is beneficial in that patient population. As well as an Allogenic Stem Cell Transplant. So, an allogenic transplant is when you get immune cells from another donor.

So, “allo” meaning from a different person. So, in that sense, you get sort of temporized, and they would give you donor lymphocytes. And those lymphocytes themselves would try to fight off your cancer. So, an Auto transplant is mainly just chemo; an Allo transplant, the donor cells help fight off the cancer.

Katherine:                  

Right.

Dr. Phillips:                 

There are complications to both, which is why they’re not typically given up front. The Allo transplant probably has more risk of complications as well. Those cells can also recognize your body as being foreign and try to fight them off because they don’t originate from you. And there’s also just a risk of other death from that procedure. So, all those have to be taken with a bit of caution. And for the Allo transplant, it’s generally only recommended if you have that, a sibling donor. Because there’s much less risk of complications than versus you get an unrelated donor.

Katherine:                  

Right. Right, that makes sense. If someone receives treatment and then goes into remission, how are they monitored?

Dr. Phillips:                 

So, there’s a couple of different ways you can go about it.

Historically, what we would do is we would actually sometimes get CAT scans. But we’ve sort of pulled back from that in recent years. So, as of right now, the recommendation is really just clinical observation, meaning what I call well baby visits. Meaning I will see you in clinic at least every three months for the first year after completion of therapy. We do a system assessment, we’ll do a physical exam, we’ll do labs. Unless there is really something that at the completion of therapy that I’m concerned about, we won’t typically do any imaging.

We reserve imaging until there is a concern at some point, whether you have symptoms, there’s a lab issue, or there’s some other finding that comes up that means that we have to repeat pictures. So those visits I’ll do typically every three months for the first year, spaced out that every four months for the second year, post treatment. And then every six months up until about year four. And then it’ll become a yearly visit thereafter, as long as you continue to remain well without symptoms and nothing on an exam that’s concerning.

Katherine:                  

Yeah. We received this question from an audience member prior to the program. Angela asks, “What if I relapse after treatment? What are my options then?”

Dr. Phillips:                 

So, a lot of that, again, depends on the timing. If you relapse early, obviously whatever we gave you in the frontline we would not repeat. And again, if it’s within the 24-month period, again, that takes you on the road of POD24. Wherein patients who are fit enough, it would take you to a route where you would actually probably get a transplant. It’s consolidation to extend our true progression sabbatical.

If you relapse after 24 months, that would really depend on what you received in the frontline because some of these agents can be repeated. If we don’t repeat what you’ve had in a frontline setting – so again, if you’ve got R chemo, then a second line setting, normally what we would do now, based on published data from the augment study, is we would typically treat these patients with Rituximab and lenalidomide, which is that oral medication.

That’s typically if you did receive lenalidomide in the frontline setting and you would not want to repeat that, then we would typically give you R chemo in a second line setting. Again, in most of those situations, it would be RCP or Bendamustine and Rituximab.

Katherine:                  

Okay. Are there emerging approaches for treating follicular lymphoma that patients should know about?

Dr. Phillips:                 

There are. So, there are some more exciting data that’s coming out, specifically looking at CAR-T, which is chimeric antigen receptor therapy. So, these are augmented T cells that they collect from the patient, they help recognize – they help to modify those cancer cells to recognize the tumor more appropriately. And they target those tumor cells through a receptor called CD19 that’s present on the tumor.

So, that therapy has shown a significant overall response rate in follicular lymphoma. Even in very heavily pretreated patients. Right now, we’re still waiting on a longer follow up as far as the duration of the response, but as of right now it is a very encouraging therapy.

The downside to that therapy is that you can only receive it at select centers because they have to be a therapeutic approved center. So, you can’t just go sometimes to your regular oncologist’s in say, Skoboken or wherever, and get this treatment. So that’s one downside to that and also, it’s a very expensive treatment and you need insurance approval to cover that. Some of the side effects from that treatment we have gotten better at controlling, such as cytokine release syndrome, which can cause fever, low blood pressures, difficulty breathing.

That typically happens within a set period of time after the infusion of the [inaudible] and modified T cells. And then there’s also what we call neurotoxicity, meaning you can have some neurological complications. Which, again, we’ve become better at managing. There are a couple CAR-T products on the market right now; all of them seem very comparable and also effective in follicular lymphoma. There’s also treatments called bispecific antibodies, these are like causally off the shelf products, except they use an antibody.

And in this antibody it has sort of two receptors. So, earlier we talked about Rituximab, which is a CD20 antibody. The bispecifics have a CD20 antibody and a CD3 antibody set. So, they bind to the tumor and also bind to your T cells. And with the binding to the T-cells, they call it T-cell activation and expansion. And it will utilize your own T cells to fight off the cancer. So, because these bispecifics are given as an off the shelf product, they can likely be able to be given in more accessible areas.

So, you won’t have to select centers to be given. There are still some complications with those, such as CRS and neurotoxicity, but early reports indicate that they’re much less severe and less frequency than what we see with CAR-T. But as of right now, neither the duration of responses of these treatments are still to be determined. So, again, these are two exciting sort of avenues that are moving forward for patients with follicular lymphoma that will be further developed and sort of be expanded on in the coming years.

Katherine:                  

What about clinical trials? How do they fit in?

Dr. Phillips:                 

So, for patients with relapsed refractory disease and even some patients with untreated disease, clinical trials are sometimes your best avenue for getting some of these new and promising therapeutics before they get approval. I know sometimes patients are very cautious about clinical trials because they don’t want to be guinea pigs. But I would say all treatments that we offer you have started in clinical trials. And this is the only way to really advance the field. So, if your treating physician has a clinical trial for you, I would strongly recommend patients consider that.

Because, again, they are typically offering you something that they can’t offer you as a standard care, insurance approved treatment. And for the most part, they’re either adding drugs to what we do as far as standard of care treatment approach or offer you something that is very promising in the relapsed refractory setting or upfront setting. That compares very favorably to what we would give you as a standard of care option. That allows you to get this option sooner and earlier when you’re in better shape and less sort of beat up from the other treatments that we would give you.

Katherine:                  

I’d like to just go back for a second and ask you about inhibitor treatments.

Dr. Phillips:                 

Sure. So, as of right now, CAR-T with the chimeric antigen receptor therapy treatment is only approved for patients with relapsed refractory disease. The bispecific antibody therapies are only available in clinical trial. There are some other sort of cyclin inhibitors that haven’t gotten approval. So, we have the PO3 kind of Delta inhibitors, which inhibit the PO3 kind of pathway in a patient with follicular lymphoma.

There were four approved agents in this class of drugs. We had umbralisib, duvelisib, copanlisib, and idelalisib. More recently, two of those, idelalisib and duvelisib, have removed their indications for follicular lymphoma.

So, as of right now we have copanlisib which is an IDP kind of three dose inhibitor and umbralisib, which is an oral agent for the PO3 dose kind of inhibitor. So, both of those agents are typically usually targeted in the third line and beyond. So, patients who fail at least two lines of therapy. We also have tazemetostat, which is an EZH2 inhibitor, that was most recently improved. So, EZH2 mutations occur in about 20% of patients for follicular lymphoma.

But tazemetostat was actually approved for those with and without the mutation as it did show some efficacy in both. It appeared that the overall response rate was a bit higher than those who had an EZH2 mutation, with the duration of the response appears to be equivalent. But I do think for most parts in that situation, for those who lack the mutation the drug is typically used for patients who are unfit for other therapies. Whereas those who have the mutation, it typically probably will be used a bit earlier.

Katherine:                  

Okay. Excellent. Let’s take a moment to talk about patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with their questions and their comments. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Phillips:                 

Well, for the side effect part it’s important because your physician can’t potentially prevent the worst thing or further development of side effects. Nobody can. And also, they can’t prevent you from going to the hospital if you don’t let them know you have this certain side effects.

So, it’s very important to communicate side effects, because for the most part there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. Then for the best part, it’s best to communicate any concerns that you may have in regard to treatment, or any questions you may have so that you are well aware.

You can’t really fight this appropriately without sort of being well aware of what you’re dealing with, what we’re using to take care of the cancer, and what potential side effects may come up. Again, so we can, again, have you have the best experience possible to try to get your cancer under control. I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.

Katherine:                  

Dr. Phillips, to close, what would you like to leave the audience with? Are you hopeful?

Dr. Phillips:                 

So, I think follicular lymphoma, and lymphoma in general, we are having a better understanding of the biology of the cancer, certain things that are important to the cancer, and certain avenues that we can treat the cancer and avoid some toxicities that have sort of plagued us before. So, I think moving forward there is a ton of research going into improving outcomes for patients with lymphoma, and follicular lymphoma, in general. There are a ton of other treatment options that are coming down the pipe way.

So, I think patients with follicular lymphoma should be very hopeful and encouraged that we will just continue to improve the quality of life and also the duration that they can live with this cancer. I mean, as of right now, until we can cure this cancer, our real goal is to continue to buy you more time. And time buys you more treatments. And most of the treatments that we are developing and are coming, again, down the pipeline are less toxic than some of the things we had 5, 10, definitely 15, 20 years ago.

So, your experience and your quality of life will be improved, and these treatments will also give you more longevity than you could have ever expected. So, patients with lymphoma are living a lot longer and that’s not an important thing to remember. Not hopeful, not – sorry, it’s not hopeless, even though we may say we can’t cure your cancer, the goal is as of right now is to turn this into a chronic disease such as any other chronic disease. Something that you can live with, while managing control. Hopefully, you will continue to enjoy your life and your life won’t be cut short by this cancer.

Katherine:                  

Dr. Phillips, thanks so much for joining us today. We really appreciate it.

Dr. Phillips:                 

No, thank you. I really enjoyed it.

Katherine:                  

And thank you to all of our partners. Please continue to send in your questions to question@powerfulpatients.org. and we’ll work to get them answered in future programs. If you would like to watch this webinar again, there will be a replay available soon. You’ll received an email when it’s ready.

And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about follicular lymphoma, and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

How Could Clinical Trials Fit Into Your Myeloma Treatment Plan?

How Could Clinical Trials Fit Into Your Myeloma Treatment Plan? from Patient Empowerment Network on Vimeo.

Considering a clinical trial? Dr. Omar Nadeem, a myeloma specialist, shares advice for talking to your doctor about trials, including key questions to ask your physician about proposed treatments.

Dr. Omar Nadeem is the Clinical Director of Myeloma Cellular Therapies Program and Director of Myeloma and Plasma Cell Pathways at the Dana-Farber Cancer Institute. Learn more about Dr. Nadeem, here.

See More from Thrive Myeloma


Related Programs:

Updates in CAR T-Cell Therapy for Myeloma from ASH 2021

Updates in CAR T-Cell Therapy for Myeloma from ASH 2021

The Latest in Myeloma Research: Updates from ASH 2021

The Latest in Myeloma Research: Updates from ASH 2021

Myeloma Treatment: When Should a Clinical Trial Be Considered? 


Transcript:

Katherine:

As ASH comes to a close, it’s always important to remember that these research advances wouldn’t be possible without patients participating in clinical trials. So, for patients who may be thinking about a clinical trial, when should they consider a trial and what should they be asking their doctor about?

Dr. Nadeem:

Those are great questions and very relevant questions. I think clinical trials come in many baskets. They come in the trials I just described, which are looking at established combinations and then looking to see if the addition of another agent, which is FDA approved, could lead to better results. So, those are some examples of trials where you’re trying to really advance the field by using what we already have available and studying it in either different phases of myeloma therapy or in different combinations.

Those types of trials, I think, are always very important and useful, and from a patient perspective, it should alleviate that anxiety of going on to a study that doesn’t have a track record, per se. And a lot of those trials are done in the newly diagnosed, or the first relapse setting, etcetera.

When you’ve had multiple relapses, though, we know that the disease is still not curable. So, you start to see the benefit of each treatment become shorter and shorter as patients go through their myeloma therapy, and that’s where some of these newer, exciting – especially immunotherapy drugs that are currently under study really, really are promising.

So, I think from a patient perspective, a lot of times that discussion – you’re looking at an agent that’s approved but they might not have the efficacy that we’re seeing in some of the studies.

And I think you have to discuss with your physician at that time to see whatever the clinical trial that we’re discussing or thinking about for a particular patient, what is different about it? Why is it something that they would be thinking about for their individual case? Then really, what is the expectation?

I think what we’re seeing now with all these updated results is that some of these response rates, for example, with bispecific antibodies, which is a form of immunotherapy that we’re studying quite a bit in myeloma, they look twice as good if not three times as good as some of these single agent drugs that were FDA-approved.

So, even though you might want to get the true and tested that’s been studied and cleared, the results that we’re seeing with some of these studies are so much better. So, that’s how the field moves forward. So, I think the discussion with your primary physician is key to see which particular trial, is one available, and two, what they think might be best for that particular situation.

Questions to Ask Your Doctor About Essential Myeloma Testing

Questions to Ask Your Doctor About Essential Myeloma Testing from Patient Empowerment Network on Vimeo.

Being empowered to speak up about your myeloma care is not only important but essential. Dr. Saad Usmani, a myeloma expert, shares advice for partnering with your doctor and provides key questions to ask about myeloma test results.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma


Related Programs:

How Does Essential Testing Affect Myeloma Care and Treatment (1)

How Does Essential Testing Affect Myeloma Care and Treatment? 

How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care_

How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care? 

What Should You Ask Your Doctor About Myeloma Testing_

What Should You Ask Your Doctor About Myeloma Testing?


Transcript:

Katherine Banwell:

If patients are concerned about voicing their concerns and I think many of us are, why should they feel like they’re a partner in their care?

Dr. Usmani:

Well, that’s the only way that they will feel empowered. And we have to remember why we’re doing this, right? So, we’re doing this so that we can alleviate the burden of this disease from our patients and give them as good of quality of life as possible. And it’s a partnership. And in that partnership, the patient is the most important partner. Everyone else – it’s like you’re the main character.

The patient’s the main character in the movie. And all of us are supporting cast around them. I think that’s how you have to approach it. That’s how – that’s why it’s very important. And of course, patients – we’re not expecting our patients to read the papers and be knowledgeable about everything. But have a general sense of what to expect and it will be – so, having a more educated patient helps them deal with treatments better and have realistic expectations of what’s to come.

Katherine Banwell:

Right. As I mentioned at the start of this program, Dr. Usmani, patients should insist on essential myeloma testing prior to choosing a treatment. As we conclude, I think it’s important to point out that some patients may not know if that can even receive these important tests. So, what key question should they ask their physician about them?

Dr. Usmani:

So, you should be asking your physician about what kind of myeloma you have? What stage of myeloma you have? How much involvement in the bones you have? Do you have any chromosome abnormalities or any features of disease that put you at a higher chance of the myeloma coming back?

As you ask these questions, your physician will be prompted to think about “Okay. Am I missing something in my work?” And you can always ask is there anything else you need to do in terms of testing to give you a better idea of how best to approach my treatment and follow-up. 

How Is Myeloma Treatment Effectiveness Monitored?

How Is Myeloma Treatment Effectiveness Monitored? from Patient Empowerment Network on Vimeo.

Once you begin myeloma therapy, how do you know if it’s working? Dr. Saad Usmani, a myeloma expert, shares how patients are monitored via various tests and reviews how minimal residual disease (MRD) testing plays a role in myeloma care.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma


Related Programs:

Which Tests Are Essential to Diagnose and Treat Myeloma?

Which Tests Are Essential to Diagnose and Treat Myeloma?

How Are Cytogenetics Used in Myeloma Care_

How Are Cytogenetics Used in Myeloma Care?

Questions to Ask Your Doctor About Essential Myeloma Testing

Questions to Ask Your Doctor About Essential Myeloma Testing


Transcript:

Katherine Banwell:

Once a patient begins therapy, how do you monitor whether a treatment is working?

Dr. Usmani:

So, as part of the diagnostic work-up, we typically have identified in the blood using serum protein electrophoresis and serum free light chains. What kind of myeloma proteins these – that particular patient’s myeloma cells are making. And we can monitor them every cycle of treatment. So, every three or four weeks.

And that’s the most noninvasive way of seeing if the treatment is working. The second obviously important thing is if someone has symptoms. If they have kidney damage, if they have bone pain, all of those things start improving as you’re getting treatment. And then in some patients, we’re also looking at imaging like PET CT scans at certain time points. And at some point, we do also look at the bone marrow biopsies to see what’s really going on in the factory.

Katherine Banwell:

We often hear the term MRD, or minimal residual disease used in the myeloma space. So, what is it exactly and how is it used in patient care?

Dr. Usmani:

So, minimal residual disease is a way to measure how much myeloma is left over in a given patient.

And historically, we were simply looking at the serum proteins and the light chain levels along with just the morphology of the bone marrow to see if – kind of determine a response. But we can have a much deeper assessment of how many cancer cells as a leftover from a bone marrow biopsy by different measurements. Someone can be in a complete response with M-Spike is gone. The light chains have normalized.

Yet they can still have 10,000 – 100,000 myeloma cells still in the bone marrow. And just using the bone marrow biopsy the way that we used to, we won’t be able to see them. We’ll just see, “Oh, these look like normal plasma cells.” So, using next-generation sequencing and flow cytometry, we can look at normal myeloma cells at a very deep level – one out of one million.

But these tests are highly specialized. And especially the flow cytometry requires a lot of expertise. The NGS requires good sampling at the time of diagnosis as well as subsequent specimen 

What Do Myeloma Test Results Reveal About Prognosis and Treatment?

What Do Myeloma Test Results Reveal About Prognosis and Treatment? from Patient Empowerment Network on Vimeo.

Myeloma expert, Dr. Saad Usmani, discusses how risk stratification is used in the care and treatment of patients with myeloma. Dr. Usmani reviews important test results that are used to classify low- and high-risk myeloma and the impact on treatment choices.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma

Related Programs:

 
Understanding Your Role in Myeloma Treatment Decisions

Understanding Your Role in Myeloma Treatment Decisions 

How Are Cytogenetics Used in Myeloma Care_

How Are Cytogenetics Used in Myeloma Care?

How Does Essential Testing Affect Myeloma Care and Treatment (1)

How Does Essential Testing Affect Myeloma Care and Treatment? 


Transcript:

Katherine Banwell:

How can the results of these tests affect prognosis and treatment?

Dr. Usmani:

So, currently for the most part, we’re treating myeloma patients in a similar fashion. Except for some tweaking based on these quote unquote high-risk features. So, there are certain chromosomes abnormalities that tell us that a patient has a higher chance of relapsing early even if they get the standard of care treatment. So, we try to enroll those patients into a clinical trial or have better optimization of their induction treatment and their maintenance strategy.

So, identifying these high-risk abnormalities is important because our treatment decisions may be modified for that patient’s disease. Or we might be able to get them to a clinical trial sooner than later.

Katherine Banwell:

Right. What is risk stratification? And how is it used in patient care?

Dr. Usmani:

So, risk stratification helps us identify people who are going to do well in terms of getting to a good response and maintaining that response and maintaining being progression free or being disease free versus those folks who maybe relapsing sooner. And that’s called risk stratification. So, you are essentially identifying and dividing patients into two different buckets saying, “All right. I have to pay attention to this person a bit more because they can relapse soon. So, I’m going to be keeping an eye on their labs and such very much, much closely.”

Katherine Banwell:

Let’s talk about therapy for myeloma patients. How are low-risk patients treated?

Dr. Usmani:

So, typically, the low or standard risk patients are treated with at least a three-drug induction treatment at the time of diagnosis. Or sometimes with four-drugs if you combine an antibody treatment. There are various regimens but the standard of care is at least three drugs. Then for patients who may be eligible for a stem cell transplant, they go on to receive autologous stem cell transplant. Once they’ve recovered from the stem cell transplant, they go on to maintenance treatment.

And the idea is that the induction along with stem cell transplant for those patients who are eligible gets patients to as deep as a response as possible. And the concept of maintenance is you maintain them in that response and delay the disease from coming back.

Katherine Banwell:

Right. And then what about high-risk patients? How are they treated?

Dr. Usmani:

So, for high-risk patients, we typically prefer using a four-drug regimen. Either daratumumab RVD or carfilzomib with Len Dex or KRD as induction treatment for high-risk patients. After the stem cell transplant, most patients would continue both the lenalidomide as maintenance along with the proteasome inhibitor. If patients had low or standard risk disease, they would only be getting lenalidomide as maintenance. So, here for high-risk patients, you’re adding a proteasome inhibitor. 

What Is Personalized Medicine for Myeloma?

What Is Personalized Medicine for Myeloma? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Saad Usmani defines personalized medicine for myeloma patients and reviews factors that are considered when tailoring treatment to a specific patient.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma

Related Programs:

 
Which Tests Are Essential to Diagnose and Treat Myeloma?

Which Tests Are Essential to Diagnose and Treat Myeloma?

An Expert’s Hopeful Outlook on Myeloma Research and Treatment

An Expert’s Hopeful Outlook on Myeloma Research and Treatment 

How Does Essential Testing Affect Myeloma Care and Treatment (1)

How Does Essential Testing Affect Myeloma Care and Treatment? 


Transcript:

Katherine Banwell:

Thank you for taking the time out of your schedule to join us today. Before we delve into the discussion, let’s start by defining a term that we’re hearing more frequently. What is personalized medicine?

Dr. Usmani:

Personalized medicine is a fancy term to examine different aspects of a patient’s health outside of their cancer diagnosis. And also, the cancer itself – factors that are associated with good response to treatment or an early relapse from treatment. So, it’s a holistic kind of an approach that looks at all of these factors together. Also, looks at the patient’s mental and social well-being and comes up with a game plan for them.

So, I would probably divide the various factors that kind of come into play with the personalized medicine or personalized approach to cancer treatment by taking into account factors that are patient related, factors that are cancer or disease related, and then factors that are related to treatments that they maybe receiving.

So, these three kinds of combined together to form a plan that is unique to that individual patient. 

How Does Essential Testing Affect Myeloma Care and Treatment?

How Does Essential Testing Affect Myeloma Care and Treatment? from Patient Empowerment Network on Vimeo.

 Why is it important to ask about essential testing for your myeloma? Find out how test results could reveal more about your myeloma and may help determine the most effective care for your individual disease.

See More From INSIST! Myeloma


Related Programs:

Which Myeloma Treatment Is Right for You What You Need to Know

Which Myeloma Treatment Is Right for You? What You Need to Know

How Are Cytogenetics Used in Myeloma Care_

How Are Cytogenetics Used in Myeloma Care?

What Should You Ask Your Doctor About Myeloma Testing_

What Should You Ask Your Doctor About Myeloma Testing?


Transcript:

Why should you ask your doctor about essential myeloma testing?

When a patient is diagnosed with myeloma, they typically undergo a series of tests that aid in diagnosing and staging their individual disease. The standard tests include:

  • Blood Test
  • Urine Test
  • Bone Marrow Biopsy, and
  • Imaging

As research in the field evolves, genetic profiling via more in-depth cytogenetic testing is increasingly common to further classify your myeloma. This testing often identifies unique biomarkers of the myeloma, such as translocations or changes in chromosomes.

So why do the results of these tests matter?

  • The presence of certain biomarkers can indicate a patient is low-risk, which can suggest a more positive prognosis.
  • There are certain biomarkers that indicate high-risk myeloma, meaning an aggressive treatment approach may be more effective.

Knowing your risk in myeloma is useful to your healthcare team when choosing a treatment approach or may help in determining if a clinical trial might be right for you.

How can you Insist on the best care for YOUR myeloma?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR myeloma care. Your doctor is expecting you to ask questions and should be able to answer them.
  • Ask your doctor if you have had or will receive genetic testing for risk stratification and how the results may impact your care and treatment plan. Be sure to ask for paper or electronic copies of your important test results.
  • And finally, bring a friend or a loved one to your appointments to help you process information and to take notes.

To learn more about your myeloma and access tools for self-advocacy, visit powerfulpatients.org/myeloma