Tag Archive for: bone marrow

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.

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.

What Do You Need to Know About Diffuse Large B-Cell Lymphoma (DLBCL)?

What Do You Need to Know about Diffuse Large B-Cell Lymphoma (DLBCL)? from Patient Empowerment Network on Vimeo.

 After a diffuse large B-cell Lymphoma (DLBCL) diagnosis, what’s important for patients and their loved ones to know? This animated video provides an understanding of DLBCL, available treatment options and lists key steps for becoming an empowered patient.

See More From The Pro-Active DLBCL Patient Toolkit


Related Programs:

Factors that Guide a DLBCL Treatment Decision

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

Essential Testing Following a DLBCL Diagnosis

Essential Testing Following a DLBCL Diagnosis 


Transcript:

Hi, my name is Dr. Williams, and I am a hematologist-oncologist specializing in diffuse large B-cell lymphoma—commonly known as DLBCL.

Today, I’m going to talk about what you need to know if you or a loved one has been diagnosed with DLBCL.

First, it’s important to understand your disease.

DLBCL is the most common form of non-Hodgkin lymphoma, which is a type of cancer that begins in the lymphatic system. The lymphatic system is part of the body’s immune system and includes tissue and organs that create, carry, and store white blood cells. DLBCL is caused when white blood cells called lymphocytes rapidly grow out of control.

It may be localized to the lymph nodes or may occur OUTSIDE of the lymphatic system in areas such as the thyroid, skin, breast, bone, testes, gastrointestinal tract—or even other organs in the body.

In many cases, an early sign of the disease is swollen lymph nodes. Patients may also experience symptoms that can include fever, unintended weight loss, night sweats, and fatigue. These are known as “B” symptoms. Depending on where the lymphoma is in the body, it could cause other symptoms as well.

Next, it’s important to understand how DLBCL is typically treated.

Because it is fast-growing, treatment usually begins quickly to help control the disease and its symptoms. The standard of treatment is a regimen called R-CHOP, which combines chemotherapy and a monoclonal antibody. This approach can lead to disease remission in many patients.

If a patient doesn’t respond to initial chemotherapy treatment or relapses, then several other types of treatment are considered, such as:

  • Alternative chemotherapy
  • Stem cell transplant
  • Targeted treatment
  • CAR T-cell therapy
  • And clinical trials

When making treatment decisions, factors such as where the disease is in your body, and lab test results can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration.

In addition to understanding your disease and treatment options, it’s vital to be an active partner in your care. So, how can you take steps to be an empowered patient?

  • Educate yourself about DLBCL.
  • Consider a second opinion or consult with a DLBCL specialist immediately following a diagnosis.
  • Write down your questions before and during your appointments. Visit powerfulpatients.org/dlbcl to access office visit planners to help you organize your notes.
  • Understand the goals of treatment and ask whether a clinical trial might be right for you.
  • Bring a friend or loved one to your appointments to help you recall information and to keep track of important details.
  • Finally, remember that you have a voice in your care decisions. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate.

DLBCL Treatment Decisions: What’s Right for You?

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

When considering therapy for diffuse large b-cell lymphoma (DLBCL), what determines the best treatment for YOU? Lymphoma expert Dr. Loretta Nastoupil shares key decision-making factors, emerging research, and tools for partnering with your healthcare team.

Dr. Loretta Nastoupil is the Director of the Lymphoma Outcomes Database and Section Chief of New Drug Development in the Department of Lymphoma/Myeloma, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil here.

Download Program Guide

See More From The Pro-Active DLBCL Patient Toolkit


Related Programs:

DLBCL Patient First Office Visit


Transcript:

Katherine:

All right. Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss how you can be proactive in your DLBCL care and work with your healthcare team to find the best treatment path for you.

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 this 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.

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.

All right. Let’s find out who we’re talking to today. Joining me is Dr. Loretta Nastoupil. Thank you so much for coming on the show with us. Would you please introduce yourself?

Dr. Nastoupil:

Sure. Thanks, Katherine. I’m Loretta Nastoupil. I’m in the Department of Lymphoma and Myeloma at the University of Texas MD Anderson Cancer Center. I’ve been here since 2013, and I currently lead our new drug development team in our lymphoma section.

Katherine:

Thank you so much for taking time out of your busy schedule to join us. So, let’s start with a basic question, what is diffuse large B-cell lymphoma or DLBCL?

Dr. Nastoupil:

That’s a really important question. And I spend a lot of time when I first meet patients explaining to them there are a lot of different terms that are thrown around in lymphoma. Particularly, non-Hodgkin lymphoma is a term many patients will hear and even use. And I remind them that that is sort of an umbrella term that describes essentially every lymphoma that’s not Hodgkin lymphoma.

So, it’s really important to recognize that there are unique types of large cell lymphoma. And almost everything that we care about in terms of what the treatment will look like, whether or not we’re aiming to cure someone, or just maintain adequate disease control is primarily focused on the type of lymphoma someone has.

So, diffuse large B-cell lymphoma is the most common lymphoma subtype. Just in terms of its descriptive name, it is a B-cell cancer. And it is comprised of large cells that are essentially effacing or replacing the architecture of a lymph node.

There are different types, which I’m sure we’ll discuss. But, again, diffuse large B-cell lymphoma is our most frequent lymphoma we encounter.

Katherine:

What is B cell? What does that mean?

Dr. Nastoupil:

Sure. So, stepping back a little bit, I think most people when they know or have known someone with cancer, it is described as the organ it originates in. So, breast cancer’s a great example. That usually is breast tissue that is abnormal. It has malignant potential. And if it spreads beyond its capsule and specifically goes to a lymph node or another organ, generally that’s bad news.

Lymphoma is a cancer of the immune system. And there are various types of immune cells. B cells – they mature on and become plasma cells when they’re behaving normally. And their job is to generate antibodies so that we can develop immunity from exposures or infections we’ve had and we’ve recovered from.

So, if you develop a cancer in the B cell, depending what stage of development – if it’s a stem cell, for instance, that can lead to acute leukemia. If it’s an immature B cell, meaning it has not developed into a plasma cell, that’s, generally, where diffuse large B-cell lymphoma arises. So, these cells tend to live or spend most of their time in lymph nodes because they’re trying to mimic the behavior of a normal B cell where they’re waiting there for that exposure to happen.

So, these are generally not cancers that we try to cut out before they spread. They’re not spreading cancers in terms of how we generally think of those, meaning you’re not going to use surgery to treat it. And, oftentimes, there are malignant B cells kind of dispersed throughout the body because if you think about how your immune system should work, it should be able to fight off an infection anywhere and everywhere.

So, I think those are key things to keep in mind because oftentimes patients will have widespread involvement or lymph node involvement or bone involvement, and that’s just the nature of the disease and not necessarily something that is so far progressed we didn’t catch it early enough.

Katherine:

I see. Are there subtypes of DLBCL?

Dr. Nastoupil:

Yes, absolutely. So, again, stepping back, over the last 20 years, we have tried to understand why we’re able to cure about 60 percent of patients. But for the 40 percent that were not cured with standard treatment, their outcomes were generally poor, meaning most of those patients died as a result of their lymphoma.

And we’ve approached all of them the same. So, that would imply to us that there’s something inherently different about the large cell lymphoma cases that don’t respond to standard treatment. So, an attempt to try and define who those patients are before we initiate treatment, as technology has evolved, we’ve interrogated some of those biopsy samples to try and understand is there an underlying biologic rationale as to why some patients would have very, very disparate outcomes?

So, what we’ve learned is there are genes that are differentiated between different subtypes of large cell lymphoma. And we’ve described those subtypes based off those gene expression patterns. So, there is a germinal center type of large cell lymphoma. There’s a non-germinal center or activated B-cell type.

And then it gets much more complicated meaning there’s probably far more than just two subtypes. Right now, we’re describing at least five different subtypes. I think what’s important for patients to know is that we view this in terms of being able to predict who’s not going to have the typical course. And if we can define who they are, we might pursue something different, including potentially a clinical trial.

So, the subtypes I care the most about right now in terms of defining are the double hit or double expressors, those with other features that might lend itself to targeted therapy.

So, this is an evolving field and will continue I’m sure – that will have more subtypes defined over time.

Katherine:

Let’s look into testing for a moment. What tests are essential when making a diagnosis?

Dr. Nastoupil:

So, at the beginning, we clearly have to have tissue. I always say, “Tissue is the issue.” So, we may have features that are suggestive of lymphoma. And even sometimes radiologists will describe a CT scan or an x-ray and say, “This looks very suspicious for lymphoma.” But unless we actually have a biopsy that confirms lymphoma, we won’t go as far as to render a diagnosis in the absence of a biopsy.

Now our biopsy approaches have evolved over the last few years. The gold standard or what I would consider to be the best approach currently is to actually have an incisional biopsy meaning we find a lymph node that looks suspicious.

And we either remove the entire lymph node or a large section of that lymph node to render a diagnosis because there’s various things we need to do to that lymph node.

So, generally, we do what’s called immunohistochemistry staining. So, we stain either surface markers of those cells or markers within the cell because cancer is defined as having an abnormal clone or a population of cells that all have the same features. And they’re able to survive even if the host is not thriving.

So, that’s, essentially, what we’re trying to define. Are there cells in this lymph node that are all the same? And what features do they share in common? And then we will also do something called flow cytometry where we’ll take these cells and essentially sort them according to those surface markers. And that will also tell us – is this a B-cell clone, a T-cell clone, and what features would distinguish one lymphoma from another?

And the last thing that we need tissue for are what we call molecular studies, where we may learn about either genes that are rearranged or mutated within those cells that, again, may help us further classify the lymphoma and, again, group them into higher or potentially lower risk groups.

Katherine:

What do the results of these tests tell us about prognosis and treatment choices?

Dr. Nastoupil:

So, again, everything kind of hinges on what type of lymphoma we’re facing. So, for instance, diffuse large B-cell lymphoma is what we call an aggressive lymphoma. So, what does that mean? It can grow very quickly. It can take over the patient in terms of resources. So, generally, patients will have weight loss and sometimes even constitutional symptoms or B symptoms, such as night sweats and fevers, fatigue.

In the absence of treatment, it is universally fatal. Now, that timeline can vary from one person to another. But, generally, within a year, if we don’t treat large cell lymphoma, generally, that’s not survivable.

But as I’ve also mentioned for at least 60 percent of patients and potentially even more, we can cure it with standard treatment. There are other types of lymphoma, such as indolent B-cell lymphomas where actually the goal is not cure, but patients may actually have a normal life expectancy meaning they will face multiple treatment courses over their lifetime. But at the end of the day, they should live just as long as someone their same age and sex who doesn’t have lymphoma.

So, again, that’s gonna be a vastly different treatment course and outcome. So, sometimes, when you’re sitting in the waiting room and you’re sharing your journey with others, you have to keep in mind that you may all be using the same term, non-Hodgkin lymphoma. But our expectations in terms of to and outcomes might be vastly different.

Katherine:

From person to person. What are the stages of DLBCL?

Dr. Nastoupil:

So, we currently use what’s called the Ann Arbor staging system. And, again, this is very different from the staging applied in solid tumors.

And so, the way we define stage is based off where the tumor is in relationship to the diaphragm. So, if you have the disease just in lymph nodes and it’s all confined to one side of the diaphragm, it’s either gonna be stage one or two. And how we distinguish between one or two is just really not are they in close proximity and something that we would fit in one radiation field.

If you have disease that’s above and below the diaphragm, that’s generally at least Stage 3. Stage 4 is generally when it’s now outside of the lymph node. So, what we call extranodal location. So, those are generally organs, lung, liver, skin, bone, etcetera.

It can be very complicated in that you could have just one extranodal site. So, say you just have stomach involvement, or you just have one area of the bone. That could be a 1E.

So, it’s important to recognize every patient has a stage. What that means is whether or not we would give a full course of therapy in terms of systemic treatment that goes through the vein or maybe a shortened course in radiation is dependent on that stage.

Katherine:

Now that we understand a bit more about DLBCL and how it’s staged, let’s move on to treatment options. Many factors come in to play when making a treatment decision, including a patient’s age and overall health. So, let’s walk through some of these considerations. Let’s start with treatment goals. What does this mean exactly? And what are the goals of treatment for DLBCL?

Dr. Nastoupil:

Great questions. For diffuse large B-cell lymphoma, my goal was that I want to eradicate this disease with one course of therapy. Now one course of therapy, again, may mean six cycles of treatment, or it may mean three to four plus/minus radiation. And that kind of gets back to the discussion we just had with stage. But the goal is to make it go away and never come back. Now, oncologists are eternal optimists.

And I saw this because we would not be oncologists if we weren’t always focused and hoping for the best outcomes for our patients.

Katherine:

Sure.

Dr. Nastoupil:

So, we, generally, when we’re counseling patients tend to keep the focus on what is the chance that I can cure this, and we use words like cure oftentimes. But there’s always those caveats. And those caveats are – we can’t really look into our crystal ball and predict the future for every given patient. So, we use tools to help us risk stratify patients, meaning if we took 100 people like a given person, we could predict the outcome for the majority of those patients.

So, with diffuse large B-cell lymphoma with no high-risk features – so, that gets back to the molecular subtype. Do they have double hit features – yes or no? The stage and something we call IPI, International Prognostic Index, that takes into account some clinical features. As you mentioned, patient specific factors, their age, their stage, some lab values, whether or not they have more than one extranodal variable. Then we can generally predict.

Again, if I have 100 patients with good risk IPI, 80 percent of them are likely to be cured and alive and well five to 10 years later. If I have someone with poor risk features that may not change exactly what I do for that patient, but that may help them and me in terms of should I be pursuing a trial to potentially have access to something that’s better than this standard option? Or how does this impact their planning?

Some people are close to retirement. Some people have specific life goals, such as a wedding or an anniversary that sometimes we use those sorts of calculators to best predict the future to inform some of that treatment. So, those are what we call sort of the characteristics coming into treatment.

There are comorbidities or sort of concomitant medical problems, such as heart disease, sometimes diabetes. But, generally, more often than not, it’s how healthy your heart is because my objective with treatment is to cure this.

Cure generally results from chemotherapy. And we can spend some time talking about why have we not moved away from chemotherapy in this disease? But, generally, that does involve chemo because that’s generally how I can eradicate this tumor.

But there are certain situations where that chemo may not be beneficial to a given a patient. It usually has to do with how healthy their heart function is at baseline. So, again, we look at all of these factors. What is their risk with the disease? What is their risk from the toxicity of treatment? And am I able to achieve that goal, which is to eradicate the disease?

Katherine: Well, let’s talk about chemotherapy. Why is that still part of the regimen in a treatment plan?

Dr. Nastoupil:

Yes, I’m gonna borrow an analogy that one of my colleagues Jason Westin uses all the time. The CHOP chemotherapy that is the backbone of our treatment for diffuse large B-cell lymphoma was developed in 1976.

There is no other technology that we would commonly use in our day to day. You wouldn’t still be driving your car you had in 1976. Clearly, our methods of communication in regards to phones have changed dramatically. So, why are we still using chemotherapy that was developed in 1976?

Katherine:

True.

Dr. Nastoupil:

Well, it’s not for lack of trying. Over the last four or five decades, we have been trying to improve upon this. And it works. It works for at least 60 percent of patients. When we tack on targeted therapy, such as immune therapy where we use an antibody that will stick to the surface of a marker on that lymphoma cell and then use the immune system to do some of the heavy lifting, we can probably improve those cure rates from 60 percent to potentially as high as 80 percent. That’s really been the only substantial improvement we’ve made.

Now, there is one caveat. So, just recently, we heard a press release of the POLARIX study, which is the first trial in the last four decades that could potentially replace R-CHOP as the standard of care.

We don’t have the full results yet. It’s essentially utilizing a drug called polatuzumab, which is an antibody drug conjugate. It’s essentially chemo on a stick. But we’re delivering chemo specifically to (CD)79b, which is a target on B cell lymphomas and modifying the CHOPs. We’re not getting rid of chemo altogether. We’re dropping one of the chemotherapy agents and replacing it with this targeted agent. So, it’s essentially CHP plus rituximab and polatuzumab might be the new standard.

But, again, that’s based off many, many efforts to try and replace CHOP. And we’re making slow incremental improvements, but we’re still keeping the therapies that tend to work.

Katherine:

And that makes sense. What about biomarker testing results?

Dr. Nastoupil:

So, in a perfect world, we would be able to take a patient’s specific tumor, sequence it, and provide a recipe or a solution to solve the problem. And that’s what a biomarker is.

It’s something that’s unique to the patient’s given tumor that then would inform what is the best treatment. So, we’re lacking in some ways a perfect scenario. What we do have, as what I’ve mentioned, some molecular studies where we can look for specific genes or rearrangements in the genes that may help us predict the future.

And in diffuse large B-cell lymphoma, one of the most common examples of this is what we call double hit where we’re looking for two genes – MYC, which is M-Y-C, and either BCL2 or BCL6. These are genes that we all have. It’s just the lymphoma has moved these genes into sort of more of a prime real estate location that makes it a little bit more resistant to standard treatments.

So, if you move those genes in that tumor DNA, we call that our rearrangement. And we pick that up based off a FISH study. And if both of those features or all three of those features are there, we call it a double or triple hit.

That’s a potential biomarker that may suggest that particularly R-CHOP or standard treatment may not be the best strategy. There’s some limitations to that conclusion in that that’s not true for every patient. For about 20 percent to 30 percent of patients with double hit features, they’re gonna do really well with R-CHOP.

So, that’s why we are lacking in how effective these biomarkers are. And it would be great if we had additional biomarkers that were more precise or could tell us more than just that the standard may not be optimal.

So, that’s where we’re spending a great deal of time and effort in our research efforts just trying to identify biomarkers that may tell us what’s the best approach for a given patient or what we like to call personalized medicine.

Katherine:

Exactly. Does treatment typically start right away?

Dr. Nastoupil:

Hopefully. So, what I mean by that is everyone has to have a diagnosis. And a common story that I hear is that patients generally know when they’re not doing well. They may not be able to pinpoint I have lymphoma.

But they usually will see a primary care doctor or depending on the location of a lymph node if it’s palpable. Oftentimes, men when they’re shaving will pick up a lymph node in the neck. Or women if they’re having a mammogram will pick up a lymph node in the axillae or under the arm. So, that may lead to further investigation based off the location of a lymph node.

Or it may just be those constitutional symptoms where people aren’t feeling well, and a primary care doctor is their first stop. Lymphoma is rare. So, usually it’s a diagnosis of exclusion or something that we eventually get around to. That is important, but it’s not that important.

So, what I mean by that is I hope patients don’t have any guilt or regret if they’ve been sitting on symptoms for a while or even if their primary care doctor missed signs and symptoms of lymphoma because, again, it’s not very specific. There are a lot of things that can cause similar presentations.

But once we have imaging that is suggestive of lymphoma and then we have a diagnosis that’s rendered, again, followed by a biopsy, generally, then it is important that they seek care.

And they get that care in a timely fashion. What’s kind of interesting is the longer time from diagnosis to the initiation of treatment in diffuse large B-cell lymphoma is usually associated with a better prognosis. So, that’s sort of counterintuitive.

One would think that the sooner you get started on treatment, the better your outcome will be. I think the challenge with interpreting that data is that the longer time from diagnosis to initiation of treatment usually means that that patient’s disease is one that lends itself to the affordability of time to be seen by specialists, have all of your staging studies completed, have a return visit to go over all those results and have a shared decision-making process in terms of deciding what’s the best treatment for you, and then getting started on that treatment.

So, those patients where that is agreeable and acceptable, they’re probably gonna do very well.

For the patients who are really sick and they need to get started on treatment sooner rather later as a result of their disease putting them at risk, either as a result of organs not functioning well or substantial symptom burden as a result of their disease, then they need to get started. So, that’s usually why their course from diagnosis to treatment is generally shorter.

So, again, it all kind of depends on a given situation. But with diffuse large B-cell lymphoma, I tell patients usually within three months of knowing you have lymphoma, we need to get you on treatment, or you’re gonna be sick.

Katherine:

I can imagine. You touched on this a few moments ago. But what do you feel is the patient’s role in this whole decision?

Dr. Nastoupil:

So, I’ve actually been a patient myself, and I have mixed feelings about it. I think oftentimes as an oncologist, we share decision-making when we don’t know the exact path forward, meaning if there’s something controversial or you have more than one option, generally, we kind of put out all the information to the patient, and we want you to be part of that decision-making.

And I think that’s important because we’re all humans, and we all want liberties. And we want our patient rights to be acknowledged and respected. And that’s important. I think sometimes though that also burdens patients with making decisions when they may feel they don’t have all of the information to make an informed decision.

But your role as the patient is you know your body better than anyone. And, generally, if there’s something that just doesn’t fit well or sit well with you, be vocal about it. So, I’ve been in a situation where I felt like I had to speak up a few times, and not that I have all the answers. And I am an oncologist. So, I generally have more insight than others.

But, generally, I was right in that, again, I think we know our own bodies. And when you feel that something is being missed or maybe not given the time and attention it deserves, speak up. You also have a role in making sure that the diagnosis is correct.

So, I generally advise all patients because everything hinges on the diagnosis in lymphoma, more so than the staging, more so than sometimes even the treatment itself.

Getting a second opinion can be incredibly valuable because you have another pathologist that will lay eyes on this biopsy. And lymphoma is rare. So, a second opinion can be incredibly valuable, and that’s usually something driven by a patient more so than an oncologist. Though some oncologists – and I would say the majority – are open to an opinion because they too would like information or confirmation that they’re on the right path.

Katherine:

Certainly.

Dr. Nastoupil:

The other thing that I think patients can have role is exploring what trial options are out there and available to them. I think that is sometimes a tough subject to discuss. Clinical trials are not only for patients who have failed all the standard treatments.

And it’s usually not an option of hospice versus a clinical trial. That’s absolutely an inappropriate time to consider a clinical trial. And, generally, there are trials at any point in a patient’s journey where there is some controversy as to the best path forward.

Again, I’ve been discussing the last 40 years of trying to improve upon R-CHOP is because 60 percent of patients were cured, but 40 percent were not. There is always a scenario where we could do better. And, generally, the only way we will improve upon outcomes is to conduct important rational clinical trials.

So, sometimes, it’s as simple as reaching out, participating in programs such as this, reaching out to the Lymphoma & Leukemia society or the Lymphoma Research Foundation to just explore what are your trial options. They may not be appropriate for you right now but at least understanding where there is an opportunity to participate in a trial is worth exploring.

Dr. Nastoupil:

Dr. Nastoupil, now that we’ve discussed factors that go into the treatment choices, can you walk us through the currently available DLBCL treatment approaches and who they might be right for?

Dr. Nastoupil:

Absolutely. So, again, this is changing, and that’s good news. So, up until recently, R-CHOP or rituximab in combination with CHOP, which is an acronym for four different drugs, cyclophosphamide, doxorubicin, vincristine, and prednisone, has been our standard.

Again, what would potentially challenge that is the POLARIX study where we exchange vincristine for polatuzumab. We don’t know the results of that study yet. All we know is that it met its primary endpoint, meaning it met what it set out to do in terms of improving upon some of the outcomes achieved with R-CHOP.

We need to see the details to know if that means now every newly diagnosed diffuse large B-cell lymphoma patient will be offered the polatuzumab in combination with R-CHP study or whether or not there will still be some patients appropriate for R-CHOP.

But that is generally our first approach. Whether you get six cycles or a shortened course plus/minus radiation depends on your state. Once patients have completed therapy, generally, then we pursue what’s called surveillance.

So, we’re monitoring for any signs that the lymphoma has recurred or has not gone away. That’s a controversial topic in terms of how to conduct surveillance and one that I suspect will change over time. But for most patients, if the lymphoma is going to recur, it generally recurs within the first two years.

So, assessing patients either in the form of a CT scan, a PET CT, or a physical exam with labs every four to six months for the first two years is what most practices will pursue. I’m not saying that there is no chance that you would relapse beyond two years. It’s just that the majority of patients, at least 90 percent, if the lymphoma comes back, it usually does so within two years.

And the relapses that occur beyond two years are less predictable. They could happen at three years. They could happen at 10 years, as it’s hard to know how to do surveillance beyond two years.

If the lymphoma recurs, the first thing we need to do is biopsy it because there are many things that can mimic lymphoma on a scan – infection, inflammation, other tumor types. So, if there is ever a question about whether or not the lymphoma has recurred, I generally advise for all patients they undergo a biopsy to ensure that we know what we’re treating.

Depending on when the lymphoma recurs, if it happens within 12 months, this is another area that we are shifting our practice. In the past, for all patients who had relapsed large cell lymphoma, we would pursue what we call salvage or second-line chemotherapy. So, we mix up the chemo. We keep, generally, the rituximab, but we alter the chemotherapy agents. We wouldn’t give CHOP again.

And then we give a shortened course where we give two to three cycles. We repeat the scan. And for patients who’ve achieved what we call chemo-sensitive disease – so, that’s generally a complete response on scan – we would then move forward with high-dose therapy and an autologous stem cell transplant. So, essentially giving different but more intense chemo and rescuing patients from that maneuver with their own stem cells that will go back to the bone marrow and start making white blood cells, red cells, and platelets again.

What has shifted in the last six months is we now know that CAR T-cell therapy is superior to that approach, at least with two CAR Ts for patients whose lymphoma came back within 12 months. Again, we’re eagerly awaiting the full results of those randomized studies. But three trials were conducted. Two of the three suggest CAR T is better than second chemo and transplant for those patients who relapse within 12 months.

So, currently, we think that you’ll have a CHOP-like therapy with plus rituximab frontline. If you progress within 12 months, you potentially would be a candidate for CAR T-cell therapy. If the CAR T-cell therapy fails, which is true for about half of patients, or if you’re deemed to not be a candidate for CAR T, we have several other new options that didn’t exist a year ago, including targeted or non-chemotherapy options.

So, there are at least four options in that setting now that are therapies that target the lymphoma cells, either by targeting CD19, which is another surface marker, augmenting that either with an antibody drug conjugate, such as Lonca, or with an immune therapy, such as lenalidomide and tafasitamab. Polatuzumab is available in that third line or later space combined with bendamustine and rituximab. There’s an oral agent called Selinexor.

So, a lot of that is not to burden patients with information but to let them know they’ve got lots of options. And many of these can be sequenced. So, if we can’t achieve cure with R-CHOP and/or CAR T, there are still very good outcomes in that third line or later space.

Katherine:

We’ve covered a lot of information here so far. And just a reminder that the resource guide I mentioned earlier contains definitions and resources for what we’re discussing today. So, be sure to click on that link if you haven’t already.

Dr. Nastoupil, I’m wondering how patients can feel confident in speaking up and becoming a partner in their care.

Dr. Nastoupil:

So, it’s important to recognize, and I reflect on this all the time. Generally, once patients have been rendered a diagnosis of cancer, that’s a life-altering event. And even if I spend a lot of time trying to reassure patients that outcomes for lymphoma patients are very good, generally we’re aiming for cure, that’s not true for everyone.

And you can’t help but be concerned that you will succumb to this disease or that the toxicity of therapy is gonna be life-altering and impact your quality of life in such a way that it’s no longer the life that you were happy to live.

And so, I recognize that we are partners in this. My job is to choose the most effective therapy that will try and accomplish the goals we set out to achieve. However, sometimes, oncologists make assumptions about what the goal of a given patient is.

We’re assuming that longevity or living is the most important goal. Whereas sometimes, people might care more about the quality of life, or they may need more reassurances about what the options are or their realistic outcomes with therapy. Because, again, I’ve mentioned before, oncologists are generally eternal optimists. We tend to sugarcoat things a little bit.
So, it’s important for patients to recognize that they will have a shared decision responsibility, meaning oftentimes we will provide all the information that we have access to in terms of a given treatment.
What is the likelihood of success, what is the potential risk in terms of toxicity, and what we’re leaning towards one therapy over another, particularly if you have more than one option.
But, ultimately, we need patients to share with us what their goals are in terms of outcome of that treatment so that we can then potentially refine our treatment selection. So, again, being informed, participating in programs like this so that you understand what makes one lymphoma different from another. Why would one oncologist offer one treatment and another discuss something else?

So, understanding what the different lymphomas are, how they might be approached differently, what the new therapies are. I struggle to keep up with just the lymphoma literature and changes. I can’t imagine what it must be like for an oncologist that treats every cancer type. So, again, understanding that new drugs are approved almost every couple of months in lymphoma may provide an opportunity for patients to share new information with their oncologists as well. So, information is key.

Katherine:

Dr. Nastoupil, thank you so much for taking the time to join us today.

Dr. Nastoupil:

Well, I appreciate your time as well.

Katherine:

And thank you to all of our partners.

If you would like to watch this webinar again, there will be a replay available soon. You’ll receive 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 DLBCL and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.

How to Make an Informed Myeloma Treatment Decision

How to Make an Informed Myeloma Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several treatment options, how can you decide on the best therapy for your myeloma? In this explainer video, Sandra and her doctor walk through important considerations when choosing a plan, and provide advice for partnering with your healthcare team.

Download our Myeloma Office Visit Planner to help you have productive conversations with your healthcare team, here.

See More From Engage Myeloma


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Transcript:

Sandra:

Hi, I’m Sandra. Nice to meet you!

Several years ago, I was diagnosed with multiple myeloma. I had bone pain and felt very tried so I went to see my doctor – my bloodwork indicated that it may be multiple myeloma and I was referred to a hematologist.

After a series of tests, my diagnosis was confirmed. I was overwhelmed when I learned that I had a blood cancer, but my hematologist, Dr. Reynolds, told me more about the condition and how it’s managed.

Here’s Dr. Reynolds – she can explain it further.

Dr. Reynolds:

Hi! I’m Dr. Reynolds, and I’m a hematologist specializing in the care and treatment of people with myeloma. The different types of myeloma are:

Monoclonal gammopathy of undetermined significance or MGUS (pronounced em-gus or M-Gus). MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine.

And, smoldering myeloma, which is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly.

Last is multiple myeloma. Multiple myeloma is a buildup of plasma cells in the bone marrow that crowds out healthy cells, causing symptoms and other problems in the body.

Sandra:

As part of my diagnosis, Dr. Reynolds ordered a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.

Dr. Reynolds:

That’s right. We also did additional testing to identify any specific chromosomal or DNA abnormalities to get a better understanding of the genetic nature of the myeloma cells. The results of these tests helped us learn more about the extent of Sandra’s myeloma, her prognosis, and which treatment plan could be most effective.

Sandra:

After I was diagnosed and we had all of my test results, I met with Dr. Reynolds, and she walked me through the goals of treatment for my myeloma.

Dr. Reynolds:

Right! First, we talked about the clinical goals of treatment, which are to slow the progression of the disease and to induce remission.

And, it’s important to note that because each person’s myeloma is different, they are treated differently – be sure to discuss the specific goals of YOUR myeloma with your doctor.

Sandra and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her myeloma.

Sandra:

Next, we talked about another key treatment goal: symptom management. Dr. Reynolds asked me to let her know about any symptoms that I experience.

Dr. Reynolds:

Exactly, Sandra. A significant change in symptoms can indicate that it may be time to adjust treatment, if the symptoms are due to the prescribed medication, or that the disease might be changing.

Common symptoms may include fatigue or weakness, loss of appetite, excessive thirst, and weight loss, among others. This is why it’s important to not only have lab work and regular visits with your hematologist, but it’s essential to share about any symptoms you may be having, even if you don’t think it’s related to your myeloma.

And, last but not least, we discussed the most important treatment goal: Sandra’s goals. Sandra let me know that she’s very social and enjoys traveling and spending time with her family – we wanted to make sure she could continue doing the activities she loves.

Sandra:

Then, Dr. Reynolds reviewed each of the treatment approaches with me, including potential side effects and how it may impact my lifestyle. We discussed the pros and cons of each option, and we went over what our next steps would be if the treatment plan needed to be adjusted.

Dr. Reynolds:

Exactly! When deciding on therapy, you and your doctor may also consider:

  • Your age and overall health,
  • Any presence or history of other medical problems, and
  • The financial impact of a treatment plan.

Sandra:

In addition to asking questions, my sister, Beth, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching myeloma and bringing a list of questions to each appointment.

Beth found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Reynolds:

As you can see, Sandra and her sister were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with a myeloma specialist to help you feel confident in your care decisions.

Sandra:

Dr. Reynolds let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Beth and I feel included in the decision-making process, as if it were a collaboration.

Dr. Reynolds:

That’s right! This is a partnership. So, what steps can you take to be more engaged in your care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Ask about relevant myeloma testing.
  • Learn about your options and weigh the pros and cons of each approach.
  • And, consider a second opinion or a consult with a specialist.

Sandra:

That’s great advice, Dr. Reynolds. To learn more, visit powerfulpatients.org/myeloma to access a library of tools.

Thanks for joining us!

Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF?

Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF? from Patient Empowerment Network on Vimeo.

What are essential thrombocythemia (ET) , polycythemia vera (PV), and myelofibrosis (MF) exactly? Dr. Naveen Pemmaraju explains how each of these blood disorders manifests along with the symptoms observed in these MPN patients.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

See More from Engage

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What Are the Considerations When Choosing Myelofibrosis Therapy?


Transcript:

Katherine Banwell:    

Can you help us understand the differences between ET, PV, and MF?

Dr. Pemmaraju:         

Yeah, this is very important because we toss these words around as if there’s some big definition that was given, and oftentimes, that never happens. So, let’s pause to do that. So, this goes back to the 1950s when William Damashek, who really postulated the modern MPDs at that time as they were known – myeloproliferative disorders – really thought that there were four diseases that were similar at some level and then presented differently. So, that’s polycythemia vera, essential thrombocytosis, myelofibrosis, and CML, chronic myeloid leukemia.

Then, as the modern era comes in, CML is divided off because of the Philadelphia chromosome, BCR-ABL, which is present in 100 percent of those patients.

So, now we know CML is its own thing. And now we have the big three, sort of non-Philadelphia chromosome MPNs, as they’re now known, because neoplasm – cancer – instead of disorder. Within the subtype, and this is important, the subtypes that you mentioned are the most common.

So, polycythemia vera – poly meaning many, cythemia, cells, vera is Latin for true.

This is the designation for the patient who has a higher than expected blood red cell mass or hematocrit. And it actually, interestingly, Katherine, most patients with P vera have an increase in all three of their blood lines, so the red cells, hemoglobin, hematocrit, platelets, and white count. Those patients with PV are especially at risk for both bleeding and clotting, transformation to myelofibrosis, and even transformation to acute leukemia in maybe 5 to 7 percent of patients.

So, the usual treatment there, Katherine, is to bring off the blood mass. That’s the phlebotomy.

And then in the patient who is above the age of 60 or has a prior blood clot, to give some form of chemotherapy, hydroxyurea (Hydrea), or interferon, for example.

Now, the second grouping is ET, essential thrombocytosis. Again, this word vera or essential, meaning not reactive, not benign, not from a regular cause like a surgery or a trauma or an inflammation. So, it means a cancerous cause, an autonomous cause, something that’s coming on its own.

Thrombocythemia or thrombocytosis, meaning too many platelets. So, usually, patients with ET have too many platelets as their predominant manifestation. But again, as with P vera, patients can get into problems with that. Very, very high platelets, usually a million-and-a-half or higher, can actually lead to bleeding. Not necessarily clotting, but extra bleeding. And then patients with any platelet levels, because the platelet level doesn’t exactly correlate, can have either bleeding or clotting. So, that’s usually the predominant factor. And again, the underlying problem with these MPNs is that they can transform to the other ones – PV, MF, even acute leukemia.

And then, finally, myelofibrosis, which we could spend the whole hour on just by itself, is the more advanced state out of these.

So, it can either arise out of the PV or ET or stand alone. And really here, this is an advanced bone marrow failure state with bone marrow scarring or fibrosis. And now, usually, most patients, their blood counts, rather than high are now low because the bone marrow is unable to produce enough cells. And then, therefore, the sequela of the disease – anemia, thrombocytopenia. So, low blood, low platelets.

Then you need transfusions. The liver and the spleen get larger because they remember how to make blood cells. People can have a wasting away appearance. And then here, more than the PV or ET, this is more of an acute disease for many where if you have intermediate to high stage, these patients can transform more readily to leukemia and have a decreased overall survival.

How to Make an Informed MPN Treatment Decision

How to Make an Informed MPN Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several options, how can you decide on the best therapy for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)? In this explainer video, Katrina and her doctor walk through important considerations when choosing treatment and provide advice for partnering with your healthcare team.

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Transcript:

Katrina:

Hi, I’m Katrina. Nice to meet you!

Several years ago, I started having headaches and felt very tired. After a trip to the doctor and undergoing bloodwork, I was diagnosed with polycythemia vera, or PV, which is a rare blood cancer that causes my body to produce too many blood cells. It was overwhelming at the time to learn that I had a blood cancer, but my hematologist, Dr. Liu, told me more about the condition and how it’s managed.

Here’s Dr. Liu–she can explain it further.

Dr. Liu:

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care and treatment of people with myeloproliferative neoplasms or MPNs. MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. Katrina was diagnosed with PV, which is one of the three MPNs. The three types of MPNs are:

Essential thrombocythemia, or ET, which means that the body is producing too many platelets. The second is polycythemia vera or PV. PV is characterized by the overproduction of red blood cells, and, in some cases, elevated white blood cells and platelets. And the third is myelofibrosis or MF, which causes scarring in the bone marrow that disrupts the normal production of blood cells.

When a patient is diagnosed with any of these conditions, there is a chance they could progress from one condition to the next.

Those that have been diagnosed with ET, PV or MF, should have regular visits with their hematologist to monitor their condition and find the most appropriate treatment to manage their MPN.

Katrina:

After I was diagnosed, I met with Dr. Liu and she walked me through the goals of treatment for PV.

Dr. Liu:

Right! First, we talked about the clinical goals of treatment for PV, which are to reduce the risk of a blood clot and ease or eliminate any symptoms.

And, it’s important to note that because each of the MPNs is different, they are treated differently – be sure to discuss the specific goals of YOUR MPN with your doctor.

Katrina and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her PV. Then, we went over what our next steps would be if the treatment plan needed to be adjusted.

Katrina:

Next, we talked about another key treatment goal: symptom management. Dr. Liu let me know that I should make her aware of any symptoms that I may be having, even if I don’t think it’s related to my PV.

Dr. Liu:

Exactly, Katrina. A significant change in symptoms can indicate that it may be time to switch treatments or that the disease might be changing. Those symptoms may include enlarged spleen, fever, itching, fatigue and anemia, among others. This is why it’s always important to not only have blood counts checked regularly, but it’s essential to tell your doctor or nurse about any symptoms you may be having, even if you don’t think it’s related to your MPN.

And, last but not least, we discussed the most important treatment goal: Katrina’s goals. Katrina let me know that she’s very social and enjoys playing golf and tennis with her friends – we wanted to make sure she could continue doing the activities she loves.

Katrina:

Dr. Liu reviewed each of the treatment approaches with me, including potential side effects for every therapy and how it could impact my lifestyle. We discussed the pros and cons of each option, together.

Dr. Liu:

Exactly! When deciding on therapy, you and your doctor may also consider:

Your age and overall health, any presence or history of other medical problems, and the financial impact of a treatment plan.

Katrina:

In addition to asking questions, my daughter, Sarah, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching PV and bringing a list of questions to each appointment.

Sarah found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Liu:

As you can see, Katrina and her daughter were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with an MPN specialist to help you feel confident in your care decisions.

Katrina:

Dr. Liu let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Sarah and I feel included in the decision-making process, as if it were a collaboration.

Dr. Liu:

That’s right. This is a partnership. So, what steps can you take to be more engaged in your MPN care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Learn about your options and weigh the pros and cons of each approach.
  • Consider a second opinion or a consult with a specialist.

Katrina:

That’s great advice, Dr. Liu. To learn more, visit powerfulpatients.org/MPN to access a library of tools.

Thanks for joining us!

Is the COVID-19 Vaccine Safe for Myeloma Patients?

Is the COVID-19 Vaccine Safe for Myeloma Patients? from Patient Empowerment Network on Vimeo.

 Should myeloma patients get the COVID-19 Vaccine? Dr. Joshua Richter encourages all patients to get the vaccine but notes important considerations around treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Transcript:

Katherine:

Is the COVID-19 vaccine safe for patients with myeloma?

Dr. Richter:

Absolutely, 100 percent yes. Everybody with myeloma should absolutely get the vaccine. What’s a little more complicated is the timing of it. So, one is in relation to stem cell transplant or CAR T-cell therapy. If you’ve had one of these, obviously, consult with your provider. But the general recommendation is to wait about 60 to 90 days after a high-dose therapy like that. And it’s not a question of safety, it’s a question of efficacy. Vaccines are like vegetables, seeds, you have to put them in the ground to grow. If you give yourself a vaccine right after a stem cell transplant, well, your bone marrow is not ready to work with it. It’s like planting a seed in the desert.

You want to make sure your immune system can take in that vaccine and give you immunity. So, you have to wait at least 60 to 90 days. The other question is, what happens if you’re getting continual therapy? And we don’t know the answer for most of these drugs, but one of the things is dexamethasone (Decadron), which is a steroid. Almost all myeloma therapy comes with some steroids. And we like to separate the vaccine from the steroid dose by a little bit if we can. Again, always important to talk with your care team as to risk/benefit about holding certain treatments.

Myeloma Treatment Decisions: What Should Be Considered?

Myeloma Treatment Decisions: What Should Be Considered? from Patient Empowerment Network on Vimeo.

When deciding on a myeloma treatment, what factors affect your choice? Dr. Joshua Richter shares key considerations, the patient role in making decisions, as well as key questions to ask about treatment

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Transcript:

Katherine:

Dr. Richter, would you please start by introducing yourself?

Dr. Richter:

Sure, my name is Dr. Joshua Richter. I’m an Assistant Professor of Medicine at the Tisch Cancer Institute Icon School of Medicine at Mount Sinai and the Director of Myeloma at The Blavatnik Family Medical Center at Chelsea at Mount Sinai.

Katherine:

Great. Thank you. When making a treatment choice, what are three key considerations for myeloma patients?

Dr. Richter:

Absolutely. So, whenever we decide on treatment options, we consider three main topics: patient-related factors, disease-related factors, and treatment-related factors. So, patient-related factors are easy. How old or young are you? How fit or frail? Do you have any comorbidities, meaning other medical problems like heart disease or diabetes?

Disease-related factors are another important one. How aggressive is your disease? Is it rising up very quickly? Is it very slowly? Do you have something that we call extramedullary disease which means myeloma outside the bone marrow in the mass that we call a plasmacytoma? And that influences how we treat things.

And the last is treatment-related factors. What treatments have you, previously, had, how did you respond to them, and what side effects did you have?

If you developed a lot of neuropathy with one drug, we may not want to choose a drug that continues to have that type of side effect profile.

Katherine:

What’s the role as a patient in making treatment decisions?

Dr. Richter:

The role, from my standpoint of the patient, is honesty. You don’t get extra points for being in pain. I want to hear from you. I want you to tell me what your concerns are, short-term, long-term. I want you to tell me about little problems that you don’t – it’s not that you don’t want to bother your care team, we want to know.

Because something little may mean something big to us. So, all we want is for your well-being. And the better we keep those lines of communication open, the better.

Katherine:

Are there questions that patients should consider asking about their treatment plans?

Dr. Richter:

Absolutely. I think in a day and age where there’s so many different options, I think it’s always important to ask the care provider, what are the alternatives to this? Or why did you select this treatment for me? Because many times, there are alternative answers. So, in myeloma, there are a lot of options that may be good for someone. And the physician team may say we recommend this drug, and the patient may have trouble getting back and forth to clinic for logistical reasons. And there may be an all-oral alternative that if you don’t ask, we may not know that that’s going to be your preference. So, really that dialog is crucial.

What is Multiple Myeloma?

 

What is Multiple Myeloma? from Patient Empowerment Network on Vimeo.

What is multiple myeloma exactly? Dr. Peter Forsberg defines myeloma, explaining how it affects bone marrow, and shares details about myeloma statistics and treatment in the U.S.

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

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Transcript:

Dr. Forsberg:             

So, multiple myeloma is a blood cancer. It comes from cells that live in your bone marrow called plasma cells. They’re part of your immune system. And when they do their job, they help protect you from infections.

They’re antibody producing cells. In myeloma, unfortunately something changes in those cells and they begin to grow and live beyond what they normally would. So, myeloma is a disease that results from that and when myeloma is diagnosed, it’s usually because those plasma cells or the antibody they produce has started to cause problems, to cause destructive changes or symptoms. So, that’s multiple myeloma.

And it’s maybe a little more common than people sometimes think. It’s got an unusual name, so most folks haven’t really heard of myeloma when they’re diagnosed with it. But it is the 14th most common cancer and there are about 30,000 cases diagnosed each year in the U.S. and at this point, more than 150,000 people living with myeloma. And that’s because more and more people are living with myeloma all the time. Advancements in treatment have made people live longer and live better with myeloma.

What Is CLL and How Is It Diagnosed?

What Is CLL and How Is It Diagnosed? from Patient Empowerment Network on Vimeo.

What exactly is chronic lymphocytic leukemia (CLL), and what factors help determine a diagnosis? Dr. Jennifer Woyach explains how CLL originates and transforms, the tests involved in diagnosis, and shares a common misconception about CLL.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

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Transcript:

Katherine:                  

Well, Dr. Woyach, let’s start by understanding CLL. Would you briefly walk us through what CLL actually is?

Dr. Woyach:               

Sure. CLL is a cancer of the blood, the lymph nodes, and the bone marrow.

And it happens when a particular type of white blood cell called a B lymphocyte acquires genetic mutations and transforms into a cancer cell. And then, over time, those cancer cells continue to grow and divide. And they can cause symptoms such as enlarged lymph nodes if the cells get stuck in the lymph nodes and continue to grow there. It can cause a high white blood cell count, which usually doesn’t cause any symptoms but is one of the things that we see often in CLL. And then, it can also cause the bone marrow to not be able to produce normal cells because it can get so infiltrated or so full of CLL cells.

And this can cause things like anemia, which is lowering of the red blood cell count and thrombocytopenia, which is lowering of your platelet count.

Katherine:                  

What are the steps involved in reaching a diagnosis?

Dr. Woyach:               

CLL is an interesting disease because it’s one of the only cancers that does not require a biopsy of something for a diagnosis.

So, we can, actually, make the diagnosis of CLL based on the peripheral blood. So, just a blood draw in somebody’s doctor’s office. Usually, CLL is diagnosed in the asymptomatic stage. So, somebody goes to their primary care doctor, has blood drawn usually for another reason, and is found to have a high white blood cell count or sometimes even a fairly normal white blood cell count but a high percentage of lymphocytes. That certain type of cancerous white blood cell. So, the next step in the diagnosis then is something called peripheral blood flow cytometry, which is a specialized test where we look at the markers or antigens on the surface of white blood cells.

So, there is kind of a code of these markers on the surface of all of your blood cells that can tell what type of cells they are. So, for CLL in particular, we’ll see that the cells express some of the normal markers we would see on a normal B lymphocyte.

Things like CD19, CD20, CD23. But they also express a marker called CD5, which is found on normal T lymphocytes but shouldn’t be found on B lymphocytes.

And so, this collection of surface markers can make the diagnosis of CLL. Sometimes, we do need to do extra studies like a bone marrow biopsy or a lymph node biopsy. But often times, those are not necessary at the time of diagnosis.

Katherine:                  

When you meet with patients, Dr. Woyach, what are some common misconceptions that you hear about?

Dr. Woyach:               

I think the biggest thing that I hear, and granted I see a lot of patients after they’ve been diagnosed by someone, gone to see an oncologist and then, come to me after, but one of the common things that I hear is that somebody has told them along the way that they have the good type of cancer, which I think is not a very helpful thing to hear as a patient because, of course, no cancer is a good type of cancer.

I think it’s important to note that CLL is one that has a lot of treatment options and usually extended survival. But I think that’s one of the most common misconceptions that I hear.

An MPN Care Partner Shares Why He’s Optimistic About the Future

An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

 

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Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

Could an MPN Clinical Trial Be Right for You?

Could an MPN Clinical Trial Be Right for You? from Patient Empowerment Network on Vimeo.

Is a clinical trial your best MPN treatment option? Dr. Ruben Mesa explains the clinical trial process and how patients may benefit from participating.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

There is much exciting research in myeloproliferative neoplasms. First, research trying to understand, why do people develop MPNs, and why do they progress. This is crucial research, and that this basic research to better understand the diseases will help us asses whether our treatments are having an impact slowing down the progression of the disease, and help us better design therapies that, hopefully, can cure these diseases.

Be reassured  that our goal as a scientific community is to cure the MPNs. Now, until we’re able to do that, we want to be able to best control them as best we can. So, the next level of research is really in new therapies; primarily drug-based therapies, but future therapies using the immune system; potentially using vaccine therapy to try to better control the disease to make the disease as neutral in your life as possible.

Our goal, short of curing the disease is to make the disease as invisible in your life as possible. Hopefully, minimal side effects, minimal symptoms, protected against risk of blood clots or bleeding, ideally, decreasing the risk of progression, and hopefully without any significant side effects from the medication your receiving.

So, that really is our goal.

 Clinical trials are a crucial way for us to improve the treatments that we have for any diseases. And in particular, in areas like myeloproliferative neoplasms where we have therapies, but we don’t have cures, clinical trials are crucial. Clinical trials are a structured way for you to be able to receive a new treatment. That treatment is closely monitored, and starts with a strong belief that that treatment is going to be beneficial for you.

Being on a clinical trial has many steps, but you are in the driver seat in each of them. So, you’re able to enroll in a study, and you’re able to decide at any point whether or not you’d like to continue on in that study. You are made clearly aware of what you’re receiving; what dose; what to expect at each and every step of that therapy.

It’s a treatment just like any other, but we use them because we are hoping that it will be better than the treatments that we have, and we do it on a clinical trial so that we can learn from that experience. If that drug is better, then we should probably expand its use and give it to other people, and have it be approved and used around the world. Or for whatever reason that therapy is not as helpful as we would like, then we learn from that, as well.

Why was it not helpful? Was it the wrong therapy? Was it targeting the wrong aspect of the disease? Were there side effects that made the therapy not beneficial? So, we learn a lot about it in either direction. Hopefully, individuals who participate in clinical trials will have a direct benefit themselves by being able to experience a new therapy that is, hopefully, better. But also, they do have the ability to help other patients now and in the future that will be facing the same disease they have.

How Does Genetic Testing Impact Your MPN Treatment Options?

How Does Genetic Testing Impact Your MPN Treatment Options? from Patient Empowerment Network on Vimeo.

How can genetic testing results impact your treatment and treatment response? Dr. Ruben Mesa provides an overview of common mutations associated with essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) and how identification of these mutations are moving research forward.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

We are learning much more about the genetics of Myeloproliferative Neoplasm, as we truly are about the genetics of many diseases. First, when I speak of genetics, these are not the genes we think of of inherited genes that are passed from mother and father, to son or daughter. These are the genes in ourselves that potentially can change over the course of our lives, and those changes or mutations can be associated with diseases.

So, what we have learned is that the genetic changes that are associated with myeloproliferative neoplasms are important, both in terms of predicting how the diseases might behave, and also, potentially in terms of therapies. The genetic changes fall into two different groups.

There’s a first group of the most common mutations that we think are important in driving the disease. The most common is the mutation in a protein called JAK2. That’s a mutation in about half of the patients with ET, half with PV – or half with myelofibrosis, and the majority with polycythemia vera. There is mutations in calreticulin. That’s about in a third of patients with ET, and a third with MF. And then, there’s mutations in MPL, which are present in a handful of patients with ET and with MF.

But in addition to those three mutations that tend to be mutually exclusive; patients tend to only have one of those, and there’s a small group of patients that do not have any of those three. But there’s another group of mutations that we have learned about.

That we are able to obtain on panels of sometimes anywhere from 40 to 100 genes that may or may not be changed or mutated in diseases like MPNs and the implications of what those pattern of changes in those mutations have for those patients.