Tag Archive for: Robert H. Lurie Comprehensive Cancer Center

What Are the Signs It Is Time to Treat Follicular Lymphoma?

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What Are the Signs It Is Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What signs do follicular lymphoma patients show when it’s time to begin treatment? Cancer patient Lisa Hatfield and expert Dr. Jane Winter from Robert H. Lurie Comprehensive Cancer Center share some common symptoms of disease progression and advice for optimal care.

See More from START HERE Follicular Lymphoma

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 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Lisa Hatfield:

If you are living with follicular lymphoma and are currently in the watch and wait stage, you may wonder what symptoms you and your doctor are looking for that mean it’s time to start treatment. These signs and the timing may vary person-to-person, so it’s important to have a conversation with your doctor. Listen as Dr. Jane Winter from Robert H. Lurie Comprehensive Cancer Center at Northwestern University explains what symptoms she looks for to indicate treatment should start. 

Dr. Jane Winter:

…The trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing, and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.  

So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen.

So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised…most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ. These are all the signs that it’s time to think about treatment.

Lisa Hatfield:

As you’ve just heard, there are a variety of symptoms that can signal that it’s time to start treatment. This is why it’s crucial that you go to all appointments, especially ones where tests/labs are done, so your doctor has the most up to date information/data on your lymphoma. Also, be honest about what symptoms you are experiencing/how you are feeling. No symptom is too small and is important to disclose as that can show it’s time to start treatment. 

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An Expert’s Perspective on Advanced Non-Melanoma Skin Cancer Research

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An Expert’s Perspective on Advanced Non-Melanoma Skin Cancer Research from Patient Empowerment Network on Vimeo.

What’s the latest in advanced non-melanoma skin cancer research? Dr. Sunandana Chandra shares an update on emerging treatments and provides reliable resources for research news.

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:

Are there developments in advanced non-melanoma skin cancer treatment and research that patients should know about? 

Dr. Chandra:

So, you know, in the past, as a medical oncologist, we used to use a lot of chemotherapy.  

So, these are drugs that are notoriously hard to tolerate. Patients, understandably, are fearful of them and many of them don’t want them. They’ve seen friends and family go through them. And frankly, they have not been the most effective or efficacious in treating non-melanoma skin cancers, traditionally. But in the past, that’s all we had.

Now, we actually have much better therapies, specifically, the category of drugs called immunotherapy drugs that really boost a person’s own immune system to fight the cancer. These drugs are fairly new in the cancer world, and certainly new in the non-melanoma skin cancer world, and so, many of our colleagues in the community may not necessarily think of them when they’re considering patients.  

Perhaps, a lot of our patients haven’t even gotten a chance to hear about them. So, yes. There are new developments that I think are worth considering earlier and earlier in the course of a person’s treatment course. And so, I think an earlier referral to these multidisciplinary team members, including a medical oncologist, may not be a bad idea. 

Katherine:

How can patients stay up-to-date on developing research? What’s available for them? 

Dr. Chandra:

So, you know there are skin cancer patient advocacy websites that they can check out, skincancer.org. I always tell patients to be careful about what website they’re checking, because I certainly want them to go to a website that’s reputable, that’s vetted, that is something that we think has accurate information that’s evidence-based.  

And so, AIM at Melanoma has a non-melanoma skin cancer educational website. It’s called SCERF, which is Skin Cancer Education and Research Foundation, and you can find that through the aimatmelanoma.org website. You can look at skincancers.org, you can try with American Cancer Society, or you can even ask your clinical care team and see if they have any suggestions. There’s a lot of resources out there. I would just urge our patients to be careful in what source they’re looking at just make sure that they’re getting accurate, evidence-based information.

Should Advanced Non-Melanoma Skin Cancer Patients See a Specialist?

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Should Advanced Non-Melanoma Skin Cancer Patients See a Specialist? from Patient Empowerment Network on Vimeo.

Do advanced non-melanoma skin cancer patients need to see a specialist? Dr. Sunandana Chandra explains the benefits of working with a specialist, how she empowers patients, and when she recommends seeking a second opinion.

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:  

Why is it important that patients speak up and have a voice in their care? 

Dr. Chandra:  

Well, I think for person to feel empowered, they have to understand their cancer, in my opinion. 

And that’s part of my responsibility is to try to share what I know about their cancer, my medical and clinical experience dealing with that type of cancer, and really, to try to empower them by giving them knowledge about their cancer, about their diagnosis, about the prognosis, about potential treatment options. And, I really think that that knowledge is really empowering for our patients and their family members, and I think with that knowledge, they can make the most informed decision, and they can help us then figure out what the best management plan for them is. You know, I try to spend a considerable amount of time with my patients and their family members and loved ones to explain all of this at the get-go so that that way, oftentimes, they can go home, they can kind of think about it, come back with more questions. 

Or, if they do some additional research on their own, hopefully some of what I’ve talked about might resonate and might even spur on more questions that usually can be very helpful for us to try to answer, helpful for the patient, I mean. 

Katherine:

Absolutely. Should patients consider seeing an advanced non-melanoma skin cancer specialist? 

Dr. Chandra:

You know, for a “routine” non-melanoma skin cancer of which the most common are basal cell carcinomas, squamous cell carcinomas, they may be tiny spots, maybe one, potentially multiple, that can just be excised and the person can be followed closely. For them, perhaps seeing someone locally, maybe very reasonable.   

But, if the patient themselves is ever worried or unsure, or they feel like they want to see a specialist, I absolutely would encourage that. In addition, for a person who has recurrent non-melanoma skin cancers, you know, multiple occurrences, maybe even more advanced than others, I think that those particular patients going to a specialist or a number of specialists may really help with the most advanced care. Maybe it’ll allow the patient and their team to be more proactive, maybe allow for other options that are maybe not standards of care, maybe novel, but promising.  

And so, I think for patients who are worried or for patients with more high-risk features, more increased number of skin cancers, perhaps more advanced skin cancers, I think having an expert or a team of experts on their team is certainly worth considering. 

Katherine:

What is your advice for patients who may feel like they’re hurting your feelings by seeking a specialist or a second opinion? Any advice for self-advocacy? 

Dr. Chandra:

Oh, gosh. I mean, I always tell our patients I strongly encourage it if they bring up especially. You know, I never want to patient of mine or their family members to look back and have any regrets. And so, from the get-go, I think that they should seek opinions. They should feel comfortable with the management that I or someone else is recommending to them.  

And, if a person asks me if it’s okay if they seek an opinion, I’m actually very encouraging of it because it doesn’t hurt my feelings. In fact, I think, again, it empowers the patient, which at the end of the day I think is most important and allows, hopefully, for them to have no regrets. And, I always tell patients more heads are better than one. So, if a colleague has another idea that perhaps I didn’t think of or vice versa, having that discussion and ultimately, that may allow for better patient care, which I think is all of our goals, which is actually our ultimate goal, I should say. 

Non-Melanoma Skin Cancer Treatment Options

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Non-Melanoma Skin Cancer Treatment Options from Patient Empowerment Network on Vimeo.

What are the treatment options for advanced non-melanoma skin cancer? Dr. Sunandana Chandra shares insight on how a treatment approach is determined, the types of non-melanoma skin cancer, and discusses factors considered when choosing therapy. 

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:

How is advanced non-melanoma skin cancer treated? 

Dr. Chandra:

So, usually, the first thing that might occur is a biopsy to see what it is that we think that we’re dealing with. A biopsy is then reviewed by a pathologist or a dermatopathologist, and then those results are then relayed back to the doctor who did the biopsy. 

Oftentimes, it’s a dermatologist, a primary care doctor etc. Once we have the exact diagnosis and the exact pathology, we can then talk about, okay, is this removable? Is this excisable? In that situation, a dermatologist can do it; a Mohs surgeon who is a sub-specialized dermatologist can do it. In certain instances, they may say this is a larger spot, it’s a spot, etcetera, so they then may involve our surgeons or our surgical oncologists. Now, the vast majority of non-melanoma skin cancers are treated by surgery alone. They’re just excised or removed, and then the person is followed closely.  

However, there are certainly situations when a person’s non-melanoma skin cancer, meaning a Merkel cell carcinoma, a cutaneous squamous cell carcinoma, or a basal cell carcinoma being the three most common non-melanoma skin cancers. 

There are situations where those are too big to respect or to surgically remove. Potentially, it may cause too much disfigurement. Potentially a person or a patient may feel that they are just sick of surgery. They want no further surgery. In those instances, those patients are then often referred to medical oncologists. These are cancer doctors who treat the cancer with systemic or whole body cancer drugs and/or radiation oncologists who can use radiation beams to often treat the cancer. 

Katherine:

Dr. Chandra, when you’re deciding on a treatment plan for a patient, what factors are taken into consideration? 

Dr. Chandra:

So, usually, first and foremost, we have to get to know our patient and understand their own preferences, what their own goals of care are with respect to how they want to live their life, how aggressive or not they would like to be with respect to their cancer management, their functional status, which we technically call performance and status, their other illnesses or comorbidities that may kind of complicated cancer management.  

For example, people with autoimmune diseases who are on steroids, or people who have uncontrolled diabetes, these are just two examples of a potential infinite list of a person’s comorbidities or illnesses that they may have that may complicate things. All of these are taken into consideration. And, I think at the end of the day, we as their doctor want to do what’s best for them and what makes the most sense to them and for them, but certainly, it takes a very detailed discussion with our patients, their loved ones, their family members, caregivers, as well as our multidisciplinary team members to kind of figure out what the next best steps are.  

Dr. Chandra:

I think this is a time where if a person is diagnosed with a non-melanoma skin cancer, I want them to know that there are options out there, options that were not even available a decade ago, certainly, maybe even five years ago that have really revolutionized how we treat our patients with advanced non-melanoma skin cancers. And so, the sooner they reach out for help, I think the better the outcomes are. So, we are here to help those particular patients to the best of our ability.  

Advanced Non-Melanoma Skin Cancer: Who Is on Your Healthcare Team?

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Advanced Non-Melanoma Skin Cancer: Who Is on Your Healthcare Team? from Patient Empowerment Network on Vimeo.

What experts make up an advanced non-melanoma skin cancer care team? Dr. Sunandana Chandra shares an overview of typical team members who work together for optimal patient care.

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:

People with advanced non-melanoma skin cancer typically need a multidisciplinary team. Who all is on that team? 

Dr. Chandra:

So, typically the members of a multidisciplinary team include a dermatologist, including potentially a Mohs surgeon if one is available, a surgeon or a surgical oncologist, a pathologist, specifically, a dermatopathologist, if they’re available, because they really focus on scan pathology.  

A medical oncologist, a radiologist who could help us read the imaging, and a radiation oncologist who can actually use radiation to treat certain spots. Now, in addition, we can often also include our palliative and supportive oncology colleagues, especially in the settings where people may have some difficult-to-treat symptoms. They may have enough of an advanced disease where we need to start kind of talking about a person’s goals of care and what their own wishes are for their cancer management and for their life. So, these palliative and supportive oncology colleagues are very, very helpful in those situations. 

Katherine:

Are there also people like social workers, nutritionists? 

Dr. Chandra:

Absolutely. Absolutely.  

So, you know, our social workers, our nurse navigators, our nutritionist and dietitian colleagues, our nurses, our nurse practitioners, I mean, our pharmacists, it takes such a village to help take care of our patients. And I hope a patient or a person realizes that having this village at their fingertips and at our disposal only enhances their care. It’s not meant to complicate their care. It’s not meant to add unnecessary appointments. It’s just to really deliver expert care by each of these individuals who really have a focus on a particular aspect of the delivery of care. 

Why Should DLBCL Patients Engage in Their Care?

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Why Should DLBCL Patients Engage in Their Care? from Patient Empowerment Network on Vimeo.

DLBCL expert Dr. Jane Winter explains the benefits of being an engaged and empowered patient and shares key questions for patients to ask their doctors.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

See More From The Pro-Active DLBCL Patient Toolkit

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Should DLBCL Patients Consider a Second Opinion?

Transcript:

Laura Beth:

Dr. Winter, why do you think it’s important for patients to be empowered in their DLBCL care?  

Dr. Winter:

You know, a patient who is, I like the word “engaged” as well as “empowered.” I think it’s important for patients to be empowered or engaged because medicine is very complicated and very fragmented these days.  

Now, it’s so difficult to be a patient and to be sick and not be able to really take control. So, patients need to be empowered and they need partners, advocates. It’s a very sad comment on our healthcare system, but to be sure that things don’t slip through the cracks, we, the providers, the hematologist, our job is tough, but we need a patient to partner with us.  

So, for example, if you’re a patient with diffuse large B-cell lymphoma as your diagnosis, make sure to ask, “Was there a result for the FISH?” You need to make sure that doesn’t slip through the cracks. Or, if you are going for a second opinion or going to another medical center, make sure you have your records. I really wish that every patient who had a scan of one kind or another as they walked out the door got a copy of that scan, a disc. Now, that would make life so much simpler. But, make sure that you keep your own records. It’s hard and hopefully, every sick individual has a family member or a friend, someone who’s going to help them with this because this is very tough.  

But, ask questions. “Are there clinical trials I might be eligible for? Are there alternatives to the therapy you’re recommending?” These are all important questions to ask. Don’t be afraid to say, “With this treatment, what is the likelihood that my disease is going to come under control and be cured?” I think you need to know that. And, “Is there a difference between this treatment and that treatment?” Do we know? Oftentimes, we don’t have the answer for the newer treatments, but we’re hopeful.  

I just want to underscore the existence of a growing number of clinical trials that patients need to consider and think about. It’s hard at the time of the new diagnosis to be struck with not only the emotional impact of a new diagnosis and so on and not feel well and so on, but just ask the question. “Are there clinical trials I might consider?” So, that’s important, and also have optimism because the vast majority of patients, we do amazing, amazing things, and that’s why it’s so much fun to be a hematologist right now is that we have so many new and exciting treatments. And what’s more exciting than to make someone healthy again?  

So, these are exciting times. 

Treating Relapsed/Refractory DLBCL

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Treating Relapsed/Refractory DLBCL from Patient Empowerment Network on Vimeo.

What are the options for DLBCL patients who relapse? Dr. Jane Winter shares treatment options for relapsed/refractory DLBCL and what is available for patients who have coexisting conditions or health concerns.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, if a DLBCL patient doesn’t respond to treatment or relapses, what happens next? Are there additional treatment options available?  

Dr. Winter:

Absolutely, but we have some very new treatments and some new data that’s just been within the last year. So, I had mentioned earlier with regard to follicular lymphoma this CAR T-cell therapy. So, CAR T-cell therapy is now approved for certain patients who relapse. So historically, in the past, patients who were young enough and robust, healthy enough to consider what we call an autologous stem cell transplant, so, high doses of chemotherapy with stem cell rescue was the standard of care for many years. But many patients would not be eligible for that kind of therapy, first, because they were too old or they had too many medical problems, what we call comorbidities.  

But also, because in order to have a good outcome with this kind of treatment, we need to first get the disease into remission, and that can prove challenging. So, for many years, though, what we call autologous stem cell transplant was the standard of care. But a disease that is most common in people in their mid-60s and above, this was not an option for many patients, but also, many patients just never became eligible because their disease was too difficult to control. And so, in recent times, over the past six years or more, a new therapy called CAR T-cell therapy has emerged.  

This harnesses the patient’s own T cells. The T cells are collected from the blood stream, and then they are genetically engineered so that they target the marker on the lymphoma cells. It takes about three weeks or so to go through the process of altering these cells and creating these CARs, and then re-infusing them back into the patient now targeting the patient’s lymphoma. And, this is a therapy that’s incredibly promising.  

It was approved a while ago for patients in the third line, meaning if your disease came back after your first treatment, let’s say, R-CHOP, and then you receive second line treatment, but that treatment didn’t really work, you were a candidate for CAR T-cell therapy. And about 35 to 40 percent of patients would do very well with that therapy. It’s not a hundred percent, but still, it was a very good option for individuals. Now, we have clinical trials comparing patients who relapse. So, at the time the first relapse, if that relapse occurs within a year or the patient progresses while on initial treatment, CAR T-cell therapy has been shown to be better than the old standard of care, which was the second line of treatment in the stem cell transplant.  

So, we now have this very promising new strategy for patients as well as for a subset of patients who are not eligible to go on to conventional autologous stem cell transplant because they’re too old or they’ve got a heart disease or some other comorbidity that makes them not a candidate for a standard stem cell transplant. So, this is very exciting and is approved for patients with relapsed disease, or refractory disease, or disease that progresses during initial treatment, or recurs within a year as well as this group of patients who are either too old or too sick to have an autologous stem cell transplant.  

But, there are many new iterations, new variations on this theme that are under investigation right now. So, there are lots of clinical trials to consider for a patient with relapsed disease or refractory disease because we have new versions of CAR T-cell therapy that are under investigation as well as a whole list of new agents, targeted agents and what we call bite antibodies and so on.  

So, things are very promising and there’s a tremendous amount of research going on right now, much of it translating into improved responses and survival for patients with diffuse large B-cell lymphoma. 

Understanding High-Risk DLBCL

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Understanding High-Risk DLBCL from Patient Empowerment Network on Vimeo.

What is high-risk diffuse large B-cell lymphoma (DLBCL) exactly? Dr. Jane Winter explains progression of the disease, DLBCL subgroups, and treatment approaches that may bring high-risk DLBCL under control.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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 What Is Diffuse Large B-cell Lymphoma (DLBCL)?

Transcript:

Laura Beth:

Dr. Winter, what is high-risk DLBCL?   

Dr. Winter:

There are certain aggressive lymphomas that are more high-grade. And in recent years, we’ve identified a subset that has genetic changes in certain genes that lead to a very aggressive type of lymphoma that grows rapidly and is more difficult to cure with standard therapy. And what’s most important about identifying that subset is that it requires that at least most of our evidence is that the standard strategy that I just spoke about briefly in terms of what we use for transformed follicular lymphoma, the standard therapy we use for diffuse large B-cell lymphoma called R-CHOP where the “R” is standing for rituximab. 

Again, that antibody that targets a particular marker on the lymphoma cells, CD20 immunotherapy plus chemotherapy, CHOP chemotherapy which has been around for probably 50 years, this very standard backbone of treatment for diffuse large B-cell lymphoma is not sufficient. We don’t have head-to-head randomized phase three trials showing definitely that the more aggressive strategy is so much better, but most of the evidence is that standard R-CHOP just doesn’t do as well in curing these highly aggressive, and what we call high grade or double hit lymphomas.  

These are lymphomas that have these genetic changes, rearrangements in particular genes MYC and BCL2, and I like to think of it as MYC takes the brakes off of growth. So, it’s sort of the rapidly growing disease, and the BCL2 prevents the cells from dying. So, between that, you have a rapidly growing lymphoma that doesn’t stop. And so, that’s a special subgroup of diffuse large B-cell lymphoma. There are some other subcategories.  

Primary mediastinal, which tends to be a type of aggressive lymphoma that presents generally as a big mediastinal mass in the middle of the chest, usually younger patients, more often women than men, but still many, many men as well. So, high-risk generally for me means that it has a double hit. There’s MYC, M-Y-C, and BCL2 genetic changes. There are some other types, but that’s basically what I think of in terms of high-risk. When we think of garden-variety diffuse large B-cell lymphomas, there are some ways of categorizing patients into four different subcategories in terms of “risk.”   

The first of these was what we call the international prognostic index that was developed in the 70s based on patients who were enrolled on clinical trials. In those days, the diagnoses were probably not exactly what they are today in terms of how we categorize patients, but that is a set of clinical features that there’s a little app online and you can calculate whether a patient is high-risk, intermediate, low, low-intermediate risk. In this system remains fairly helpful, predictive. But, we have refined it significantly in modern times. 

And I have to say, not to toot my own horn, but one of my fellows, Dr. Zhao and I, a number of years ago using a database from the National Comprehensive Cancer Network, and patients who all treated with modern therapy and were diagnosed with modern techniques, we used that data to develop a new, improved international prognostic index. And this helps us better discriminate the four different categories, and it places greater weight on patient age, which is an important predictor, as well as the particular blood test result, the LDH, which is an enzyme that’s helpful in aggressive lymphomas and diffuse large B-cell lymphoma.  

And, this particular, what we call the NCCN-IPI, you can just put your age and LDH level and so on into this app and you just find it online, NCCN–IPI, and it will put patients into four different subgroups. And this predict outcomes and survival over a five-year period for these patients. It’s not hard and fast, like anything else, within every category. So, if you look at every patient in the low-risk group by the NCCN–IPI, there still are a few patients who will fail therapy, but the majority of patients will do very well.  

And, if you happen to be someone who is 80 years old with a high LDH and you fall into the high-risk patient group, the outcomes are not going to be as good, but that doesn’t mean every patient in that category fails treatment. So, there’s still gonna be some good outcomes. So, it’s helpful. These are guides, and they do help to identify patients who are, what we call, high-risk or high intermediate risk. So, this is another way of looking at predicting outcome apart from looking at whether a patient is what we call a “double hit” lymphoma. So, the double hit, I just want to make one point is that when a pathologist makes a diagnosis of diffuse large B-cell lymphoma, it is absolutely critical that that biopsy, the pathology be sent for a procedure called FISH.  

That stands for fluorescent in situ hybridization, and it’s a technique the pathologist can use, or special labs will use, to pull out, to identify those patients who have this very high-risk subset of lymphoma called the double hit with both a MYC and a BCL2 rearrangement. Whether a MYC and a BCL6 rearrangement falls into this same risk group, we’re deemphasizing that and really, it’s the double MYC and BLC2 group that’s the highest risk.  

How Is Relapsed or Transformed Follicular Lymphoma Treated?

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How Is Relapsed or Transformed Follicular Lymphoma Treated? from Patient Empowerment Network on Vimeo.

Follicular lymphoma (FL) expert Dr. Jane Winter explains relapsed or transformed follicular lymphoma and outlines treatment approaches for these FL types.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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Follicular Lymphoma: What Treatment Options Are Available?

Transcript:

Laura Beth:

Dr. Winter, what happens if a patient’s follicular lymphoma relapses? What is the approach to treatment? 

Dr. Winter:

And so, generally, it’s probably one in five patients whose disease sort of comes back and becomes somewhat problematic requiring repeated therapies where many, many patients have a very kind of indolent course that may require treatment intermittently, but tends to be very amenable to treatment. And then the other point to be made about follicular lymphoma is indeed that a fraction of patients every year will go on to what we call transform. That means their disease acquires and changes biologically or at least a clone of their disease changes and becomes a much more aggressive process similar to a newly diagnosed diffuse large B-cell lymphoma, an aggressive lymphoma.  

And these transformations then require treatment as if they were an aggressive lymphoma. And they also, despite being somewhat frightening because of the sense of changing from a low-grade to a more aggressive process, in very many cases, these are well treated with standard, especially in patients who haven’t had prior therapy for follicular lymphoma, which is rituximab (Rituxan), these patients are well treated with our standard treatment for aggressive lymphoma Rituxan CHOP chemotherapy, and do very well. So, even though that sounds like a frightening occurrence, for the vast majority, it’s very treatable. 

And patients go into remission and stay in remission for the most part, so it’s not as frightening as it might sound. And how many patients and when do they transform? There’s lots of confusing data. Basically, there’s some data that suggests that the majority of patients transform early in the first five years, whereas other data suggests that it’s sort of every year, patients are at risk so that the longer you have follicular lymphoma, perhaps, the greater the risk overall of this kind of change in the biology. But, as I said, for a good significant number of patients, this is relatively easily treated with standard chemotherapy.   

Just another point in terms of potentially curative therapies these days, we’re afraid to use that term in follicular lymphoma because it does have this tendency to sort of keep coming back over time. So, whether any treatment is truly curative remains to be seen. Perhaps a very, very small fraction of patients might be eligible, young patients, for an allogeneic stem cell transplant from someone else. But, this is not commonly pursued these days, as well as a new therapy called CAR T-cell therapy, which is a form of immunotherapy and may indeed be curative.  

But at this point, it’s really too early to make a claim of cure with that strategy. But, a very exciting new immunotherapy as well as some other new immunotherapy is something called “bite cells,” which harness our own immune system, much like the CAR-T cells do. So, lots of new things. So, these are exciting times for us as treating physicians and hematologists, but they are exciting times for patients because we have so much to offer.  

An Expert’s Perspective on Emerging Follicular Lymphoma Research

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An Expert’s Perspective on Emerging Follicular Lymphoma Research from Patient Empowerment Network on Vimeo.

What’s the latest on emerging follicular lymphoma research? Dr. Jane Winter shares how follicular lymphoma treatment has advanced and provides an overview of treatment options.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, is there emerging follicular lymphoma research that you are excited about?   

Dr. Winter:

So, first of all, I think it’s very important to underscore the fact that for a newly diagnosed patient with follicular lymphoma today, survival is measured in decades with an “S,” so, 10, 20-plus years. And that’s based on data that’s already becoming outdated such that it’s the likelihood with some of the newer treatment options is there’s never been a more exciting time, I often say, to be a hematologist because of all the exciting new tools we have to our trade.  

So, lots of new treatments. But, even with the old treatments, and I mean rituximab-based treatments, the outcome is excellent. We have new treatments. We have all kinds of new treatments these days for follicular lymphoma such that it’s a veritable buffet of treatment options to choose from. Nonetheless, often times the first treatment is just either a monoclonal antibody, meaning rituximab, an anti-CD20, which is a protein or marker on the surface of the lymphoma cell. This is immunotherapy, been around now for 30 years and approved for 22 years for the treatment of follicular lymphoma as well as other B-cell lymphomas.  

Other therapies that are typically used frontline include rituximab plus chemotherapy, most commonly a drug called bendamustine, which wasn’t always available, was something that was being developed in East Germany that came to the attention of the Europeans and North Americans only after German unification. And, this has become, along with Rituxan, one of the most commonly used first-line treatments for follicular lymphoma. Other options include a combination of Rituxan and an oral medication called lenalidomide (Revlimid), and this is given three weeks in a row out of every four weeks with Rituxan. Again, this anti-CD20 immunotherapy or antibody. 

And, it’s a very effective but requires some monitoring of blood counts and so on, so it is perhaps not as commonly used as Rituxan and bendamustine as a first-line therapy. But, there are so many additional new options that are either approved or coming along for all of our B-cell lymphomas, and they include many new what we call “targeted agents” as well as immunotherapy including a very new therapy called CAR T-cell therapy. But, one thing I just wanted to say, in addition to the very long anticipated survival of newly diagnosed patients today, it’s really only a small fraction of patients who get into trouble with follicular lymphoma, at least in the short term.  

When Is It Time to Treat Follicular Lymphoma?

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When Is It Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What symptoms might follicular lymphoma patients experience as a trigger for treatment? Dr. Jane Winter shares insight about common symptoms that indicate treatment should begin for optimal patient care.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what are signs that it is time to treat a patient’s follicular lymphoma? 

Dr. Winter:

Symptoms are the trigger, most often. 

Sometimes, the trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.  

So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen. So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised.  

Or also at the same time, often the platelet count. And platelets are those little flecks in the blood smear that help to clot blood and prevent bleeding. And so, as they decline, we sometimes see little red spots called petechiae on the lower extremities. But, that’s a pretty uncommon sign in follicular lymphoma. Most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ. 

These are all the signs that it’s time to think about treatment. 

How Is Follicular Lymphoma Diagnosed and How Does It Progress?

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How Is Follicular Lymphoma Diagnosed and How Does It Progress? from Patient Empowerment Network on Vimeo.

Follicular lymphoma expert Dr. Jane Winter explains common symptoms, tests involved in diagnosis, and how the disease may progress over time.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, how is follicular lymphoma typically diagnosed? 

Dr. Winter:

So, most often, it’s because of a new lump or bump that a patient notes, perhaps a lump in the neck, but also increasingly these days, many individuals wind up getting CT scans. Belly pain for which they go to the emergency room or something to evaluate another diagnosis, maybe some blood in the urine related to a totally different issue. But CT scans often reveal, enlarged lymph nodes or lymph nodes that are borderline and of concern. 

And this will lead to investigation, ultimately, a biopsy, and a diagnosis of follicular lymphoma.  

Laura Beth:

How does follicular lymphoma typically progress?  

Dr. Winter:

So, to start with, most commonly, patients have low burden disease these days, but some adverse diagnosis will have very extensive disease, a big mass in the abdomen, disease in the chest, so, highly variable. For patients who begin with low burden disease, small lymph nodes that are not bothersome, we generally observe these patients. 

And over time, these lymph nodes may begin to grow, and sometimes slowly, sometimes more rapidly to the point where they cause symptoms or are of concern because they’re cosmetically unattractive. There are occasional times where it’s a lump in the neck that just results in too many inquiries from others. So, that’s when we start thinking about maybe it’s time to start some treatment. So, progression, enlargement, sometimes it’ll be the beginning of symptoms. So, most patients with follicular lymphoma, at least in North America, don’t generally have symptoms at presentation, but B symptoms.  

So, fevers, drenching night sweats, and by that, I mean sweats at night that lead to changing your T-shirt, changing the sheets or the nightgown, not the typical middle-aged woman with a hot flash. But, by drenching night sweats, we mean drenching. Unintentional weight loss. So, these are some of the symptoms that one can see, we call them B symptoms, we can see in patients with follicular lymphoma and other lymphomas as well that may signal progression. 

Expert Perspective on the Future of Prostate Cancer Treatment and Research

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Expert Perspective on the Future of Prostate Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

How has prostate cancer treatment and research changed over time? Expert Dr. Maha Hussain shares her perspective about treatment and research progress, the role of the patient, and how to advocate for more research progress in the future.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

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Transcript:

Katherine:

Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know?

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years.

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research.

How Does Genetic Testing Impact Prostate Cancer Care?

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How Does Genetic Testing Impact Prostate Cancer Care? from Patient Empowerment Network on Vimeo.

Genetic testing has taken on a vital role in prostate cancer care. Expert Dr. Maha Hussain provides insight about genetics and biomarker testing, how results are used in determining treatment options, and key questions to ask to ensure the best care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

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Transcript:

Katherine:

Many patients are confused about the role of genetics and biomarker testing in prostate cancer care.

For people who haven’t heard of some of these terms before, let’s go into the definitions. So, what is genomic or biomarker testing, first of all?

Dr. Hussain:

So, I think there’s one thing. Maybe I can explain because the wording can be confusing. So, there is the genetics, and there is the genomics. The genetics would be what we inherit from our families. So, this would be present in our body. The genomics testing would be to look for what the structure of the genes of the cancer itself, cancer cells itself. Now, that doesn’t mean that this was inherited. It’s just that this is a renegade, and it evolved. And that is what is going to show up.

The reason these two are important, both of them have implications potentially for treatment or perhaps clinical trials. And again, with the PARP inhibitors, the BRCA-like genes will have implications for treatment sort of for resistance cancers.

With regard to the genetics, the implications are for, again, inheritance of family and potential risk for blood relatives. Now, there are panels that are FDA-approved for the purpose of genetic testing. And the requirement or the indications right now, anybody who presents with metastatic disease or an aggressive disease and diagnosis, the recommendation is to proceed with the genetic testing, certainly counseling and testing, because there are some people who prefer not to be tested. And that’s something else.

What I tell my patients is this, even if the testing is done and it was negative for inherited genes that might put the patient family at potential higher risk, the fact that a person has prostate cancer by default puts potential, adds risks to family, to blood relatives.

And the risks aren’t just for the males with regard to prostate cancer, but certainly breast cancer, ovarian cancer, pancreatic cancer potentially, and things of that sort. So, this is where I think a patient needs to be discussing with their doctors. And certainly, there are many centers that have genetics counselor, and so that’s where I generally refer my patients to. I counsel them myself, and then refer them also for more discussions with genetics counselor.

Katherine:

What exactly are genetic mutations? And how do they impact a treatment path?

Dr. Hussain:

Well, I think, again, it’s the changes that happens in specific genes that may promote the aggressiveness of a cancer. And so, the BRCA gene is one of the oldest genes that have been identified in breast cancer. And essentially, the body regulates itself.

And when cancer cells come up and they sort of – the body no longer sustains that regulation, the genetic regulation in those cancer cells. Those cancer cells will behave the way they want to. That means that they’re going to grow faster. That means they could be resistant to treatment and things like that. And so, that’s what we check for, these alterations. And there are certain medications that would allow – and again, in prostate cancer, it’s not a lot. It’s just, as I said, right now the only things that are proven is the PARP inhibitors. This is essentially to kind of gang over the cancer cell, preventing from allowing it to repair itself so it can continue to grow.

Katherine:

Some patients may not know if they’ve received these important tests. So, for patients that aren’t all that sure, what key questions should they be asking their physician or their specialist?

Dr. Hussain:

So, I would say when it comes to the genetics testing, I believe a patient has to consent.

Because again, we live in the U.S., and this is a private matter for the patient. So, this generally has to be the case. Otherwise, depending on the institution, sometimes some tests will require for the overall testing for looking for any genetic alterations, general tumor alternation. Different centers have different things. But the patient should ask and say to their doctor, “Have my cancer genes been tested? Have my genes been tested? And if they have, what are the results?” Because we generally share with the patients once it’s been done.

The other things I should point out, some of the good things that have happened recently. Up until recently, when it comes to the tumor genomic testing, tissue was required. Nowadays, the FDA has approved blood tests that several companies now run that can actually collect blood sample and basically test it for circulating tumor cell genes there.

Now, no testing is 100 percent perfect. But in situations like patients with prostate cancer who may not have recent tissue or adequate tissue for testing, certainly doing the blood test to verify if there is anything reflective of the genes of the cancer, and that may allow for potential actionable-type treatments. Again, up until now, this is more going to apply for potential clinical trials or resistant metastatic disease.

Treatment Options for Advanced Prostate Cancer

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Treatment Options for Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

What are treatment options for advanced prostate cancer? Expert Dr. Maha Hussain provides a breakdown of hormone therapy and explains how targeted therapy is used in prostate cancer care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

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Transcript:

Katherine:

Now that we understand how test results can help inform a patient’s cancer and how it may behave. Let’s discuss how they can affect treatment options for men with advanced disease. First, let’s do a brief review of the treatment types currently available. There’s hormone therapy, right. What else?

Dr. Hussain:

Perhaps, it’s simpler if we focus on advanced disease, specifically metastatic disease.

So, if that’s the deal, then the backbone of treatment is hormone treatment. And it really is. We call it hormone, but technically it’s an anti-hormone. What we’re trying to do is shut down the hormonal pathway that stimulate the testes, which is the factory that makes testosterone. So, we are looking at shutting down testosterone production from the testes in order to starve the cancer.

Now, the male hormone is produced predominantly – somewhere about 95 percent of it is made by the testes, and then there are about 5 percent-ish that comes from other sources. These are, again, male hormones like the adrenal gland and so on. And there was a while ago some research – I want to say from the MD Anderson crowd, but this is two years ago – that suggested also that the tumor may start to make sort of in-house production of male hormone to support itself.

Now, having said that, again, testes continue to be the source of the majority of the male hormone. And so, historically, the first data that showed benefit was actually by surgically removing the testes, which is what we call orchiectomy or bilateral orchiectomy. And then medications began hitting the market and were evaluated in the late ’80s and then 1990s, beginning with Lupron – which by the way, in the ’80s, it was an injection that the patient had to give themselves every day, which is remarkable.

But even then, there is a personal preference by patients to go and take injections as opposed to go through surgery with orchiectomy. But still, I would say for some patients it may be an option until it ought to be discussed as an option. Then what we know is this, is because of the potential other sources for the male hormone, the concept of what we call combined androgen depravation was being evaluated.

And again, this goes back to the ’80s when the first drug was flutamide and then bicalutamide, and there are other drugs that became. And they kind of added a sprinkle, I call it, to survival. But it wasn’t dramatic, huge differences in survival. And so, generally, while we used it, everybody believed in using it. Moving forward, the drugs like abiraterone, enzalutamide, apalutamide are the three hormonal drugs that have demonstrated conclusively really an advantage in terms of prolonging life when added to the Lupron.

So, what I tell my patients is that, when it comes to hormone treatment there is really no way around it. You can delay it. Some people are exploring for some patients who don’t have a lot of cancer, maybe a couple of areas, maybe just do targeted radiation and then leave the person alone to buy them some treatment-free time.

And, to me, this is where the discussion that has to happen with the patient. What is the objective? Is the objective to kind of be ahead of the game and maximally treat the cancer with the hope of prolonging life? Or is the objective to delay treatment? And I would tell you that, with these types of conversation, nine out of 10 or 9.5 out of 10 men opt for moving aggressively up front with management. So, that’s that.

Now, the one thing I should point out, one of the trials that also was a landmark trial in this disease was the study CHAARTED, which was an intergroup clinical trial at the time it was designed, led by ECOG, and the PI was Dr. Chris Sweeney. I was part of the team that worked on the design also of the study.

And that was a trial that looked at adding docetaxel to hormone therapy, versus hormone therapy alone, to try to see if it adds something. Historically, all the chemotherapies prior to that that were added to hormone treatment for patients with newly diagnosed metastatic disease had not delivered. And docetaxel did.

However, one thing I should point out, based on that trial – and I don’t want to go into too much details for the sake of time – the patients that seemed to be benefiting were the patients that had more aggressive, more disease in their system. And so, liver metastases, lung metastases spread in the bone at different areas, not like few isolated areas in the spine or the pelvis, but much more than that.

And so, for the patients who have what we call high-volume prostate cancer based on scans – and I’m happy to explain what that means if it’s needed – these are the patients that I would offer either the docetaxel plus hormone treatment, which is the injection, or the injection plus the hormonal pills that I mentioned earlier.

Katherine:

What about targeted therapy? How is that used?

Dr. Hussain:

Okay. So, let’s begin with the molecularly targeted therapy. So, as we speak right now, for patients who have newly diagnosed metastatic disease that we call hormone-sensitive, molecularly targeted therapy is not standard of care. So, I would encourage patients who may qualify for clinical trial to be involved in those. The flipside is – we can talk about it – is that molecularly targeted therapies, specifically with PARP inhibitors have pretty much entered in the space of prostate cancer with a couple of drugs that were FDA-approved.

The other way of targeted treatment, which would be what we refer to targeted radiation, this would be a different story. This is not systemic treatment. This is a local treatment. And what is done is basically if patients do not have a lot of cancer in their body based on scans, and only certain areas, and they are starting systemic therapy, they can certainly consult with a radiation oncologist to target radiation to areas that are visible on scan. So, if somebody has a couple of, let’s say, pelvic bone lesions, maybe a lymph node, and they are already starting systemic therapy, they can consult with a radiation oncologist focal radiation. And so, that would be the general scheme.