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AML Treatment Approaches | Factors That Impact Options

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AML Treatment Approaches | Factors That Impact Options from Patient Empowerment Network on Vimeo.

What factors are considered when choosing an AML treatment approach? Dr. Ann-Kathrin Eisfeld explains how shared decision-making comes into play when deciding on a therapy and reviews the options available to treat AML.

Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.

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Transcript:

Katherine Banwell:

With all the new tools that are available, what other factors do you consider when working with an AML patient to choose a treatment approach for them?  

Dr. Eisfeld:

The most important aspects are what we call – and this is – I’m glad that you bring this question up because I feel you have to think of – and that was what we’ve been talking about – called disease-associated factors. This is everything in the leukemic cell. They – how does a leukemia looks like? How does the blast look like? What changes are there?  

That’s the biggest part of what I would call patient-associated factors: the patient age, the patient performance status, actually the patient. In every – because I think, sometimes, we forget about it. But we just look at all the molecular testing.  

But even if – for example, there would be a patient with a very good risk leukemia, where I think, “Oh, this leukemia should respond very well to an intensive chemotherapy.” 

If the patient cannot tolerate chemotherapy or – and I see it more often than I would wish for patients who are young who have a great performance status, but they just cannot – they – their family reasons. Small children sometimes – they just cannot be away for so long. This all comes into consideration. So, it’s really important because we all work together as a team. And the right treatment for the leukemia might not be the right treatment for the patient.  

And for most cases, however, I think, it will only work if one stands with a whole heart with both physicians, and patients, and family. Because it’s a long journey behind the care that’s being given. And so, this is a joint decision-making, and there are different options that can be done. Of course, I would not advise something where I would think there are no chances of success.  

And so, this has to be an open discussion. But this is – it’s very often a very tough treatment to communicate that and see what are the goals of each patient? That will be most important for treatment and decision-making.     

Katherine Banwell:

What types of AML treatment classes are currently available?  

Dr. Eisfeld:

This is a very good question. The most classic treatment class is intensive chemotherapy. This is just because people might have heard the names. It is called 3 + 7 or 7 + 3, which refers to one weeklong impatient chemotherapy treatment. But you get one chemotherapy for seven days. And the first three days, you get a second treatment as well.  

That’s why it’s called three in seven in here, but it’s a total of seven days. So, we have intensive chemotherapy. And there are different flavors of it. But this is usually the backbone. The second class is what I would call a targeted inhibitor. And here we can look at two different aspects. We have targeted inhibitors for a specific DNA mutation that are found. And specifically, one are called IDH or FLT3 mutations.  

And these are pill forms that I usually by now combined with a third drop class which is called hypomethylating agents. And I will go through in a moment.  

But these are pills that really only work in patients and carry that genetic change. They have very, very low toxicity and very high chances of working. So, that’s why this testing is so important to see if one is one of the 15 percent of AML patients carrying an IDH mutation – 15 percent isn’t low. And a similar rate carries a FLT3 mutation.  

And then there is also going to target inhibitors. That is targeted because it is against what I would call a pathway. The gene that is commonly activated in acute leukemia – and this is called BCL-2 and the drug is called venetoclax (Venclexta).  

This is now stormed through the acute myeloid leukemia world in just a few years ago and has been approved as a front-line treatment option for several patients, especially for those who are older. And we know that even patients who respond usually favorably to chemotherapy, some of those also respond well to venetoclax the Bcl-2 inhibitor. The benefit is that this treatment in many cases if it works, can be done as an outpatient in here and has very often lower complications.  

It is actually has so good results that I – sometimes it seems too easy. So, we actually advise patients to still try to get – the first time they get the treatment, do it at a center where it’s done more commonly. Because it sometimes – don’t underestimated the power of a pill. And it’s still a very, very powerful drug. So, doing it in a controlled setting – because if cancer cells break down, they break down and can create all sorts of trouble.  

So, that is really something – for several leukemias, it can be concerning. And again, now the treatment group would be called hypomethylating agents. The names are azacitidine (Vidaza) and decitabine (Dacogen). And they act in a very different way. They try to change the epigenetics like methylation patterns. And often, if it is an untargeted way of the tumor cells and they can be used alone.  

Or very often by now in combination with the targeted inhibitors that I was just mentioning. These are infusions that can be done either over five, seven, or 10 days depending on the combination treatment. And for patients, as I mentioned before, that don’t respond well to many other options to those patients with a complex karyotype. This is, for example, a scenario where patients can just receive this as their only therapy.          

Katherine Banwell:

What about stem cell transplant? You didn’t mention that.   

Dr. Eisfeld:

Yes. That would be the next one. So, stem cell transplant always comes as an option, which I would call as a maintenance therapy. Again, two aspects. We have two different end goals.  

First is get rid of some leukemia. Second is to make sure it stays away. And as soon as the leukemia is in complete remission, depending on the performance status – the agent. Again, in multiple different things. It’s not an easy decision. 

At that time, there has to be a conversation. And that always involves a leukemia physician and a transplant physician very often. These are different providers that goes for the risks and benefits. Where the question is if I only continue to do chemotherapy – because it’s never only once. You would always have to repeat your chemotherapy. What is the likelihood that the leukemia comes back, and does it outweigh the risks that comes with the stem cell or bone marrow transplant that comes in here. But for many leukemias, especially for young patients and for patients with higher risks, this is the only chance of a cure. That is the most curative and only curative attempt for many leukemia attempts.  

Katherine Banwell:

Where do clinical trials fit into the treatment plan? 

Dr. Eisfeld:

That is the absolute backbone. We always have to think about that. 

Everything – all the treatment options that I mentioned – have been clinical trials, just very, very short time – very few years ago. So, every patient that comes to a leukemia or a cancer center, clinical trials will be discussed if they’re available. Because they will provide a special opportunity to have even more fine-tuned treatments – either newer agents. And I think what is very important to mention is that all clinical trials that are available would give the option of the best standard of care.  

And then the hope that a patient wouldn’t be getting any of the best standard of care options that are approved. The hope is that the new agent or added agent in many cases would even do better.  

It’s also important that there’s a lot of additional monitoring during the trial. I think it can be seen in two ways as two parts of a coin. In one way, it may be additional visits to the hospital or additional blood draws that are necessary to be sure that the medications are safe, and that researchers and conditions can learn about it. But on the other hand, it also gives you this extra bit of being looked after and really getting checked in and out, making sure that all organs are functioning that everything is just going fine. And many patients appreciate this a lot. And they have this pair of extra eyes on them all the time.  

Katherine Banwell:

Dr. Eisfeld, what therapies are available for AML patients who relapse or don’t respond to initial therapy? And is this treatment approach different from those who are newly diagnosed?  

Dr. Eisfeld:

Most of the time, the treatments available at relapse are the same available at the first diagnosis. Just because we know now that, for example, if you have a molecular marker that, for example, is available, it would act with also relatively high chance of relapse upset. However, at relapse, the most important thing I personally would do is consider a clinical trial even stronger than in the first mindset. 

 Because it means that the leukemia outsmarted current treatments very often. So, usually what we would be doing is see if there is a targeted inhibitor or a cell mutation FLT3 or IDH, which I would personally always prefer to go in MLL rearrangement now for the new menin inhibitors where one would go with the same option as if it would have been their diagnosis. But if not to really consider clinical trials is a strong urge. 

Katherine Banwell:

Should patients or should relapsed patients undergo genetic testing again? Is it necessary?  

Dr. Eisfeld:

Yes. At any time. Yes. Because we know that the leukemia changes. And you just can think about it in the way is that the cells that are surviving treatment, they’ve become smart. There was so much poison. There was so much treatment put on them. 

And the ones that survive might have a quiet additional chromosome change as additional gene changes. And even if a genetic change has not been present at time of diagnosis, the reason the cell has survived might have been that it has now one of these changes that came up on a later time during treatment or while the cell is hiding somewhere to come back. 

Tools for Choosing Myeloma Therapy

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Tools for Choosing Myeloma Therapy from Patient Empowerment Network on Vimeo.

When faced with choosing a myeloma treatment, what should be considered? This animated video reviews factors that impact treatment decisions, provides a list of questions to ask your healthcare team about therapy and advice for engaging in your myeloma care.

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Transcript:

Whether a patient is newly diagnosed with myeloma or is facing a relapse, choosing a treatment approach can feel overwhelming.   

Shared decision-making is a process where patients and healthcare providers communicate and collaborate to make care decisions. This approach encourages patients to take a more active role in their care and treatment and can help them feel more confident when choosing a therapy. 

So, what can impact myeloma treatment decisions? 

  • There are patient-related factors, such as a patient’s age, fitness level, and pre-existing conditions. 
  • And, disease-related factors, including the aggressiveness of the patient’s disease and its location in the body. 
  • And, treatment-related factors, such as past treatments a patient has received or if they are refractory to medicines. 

How can you play a role in making treatment decisions?  

You can start by making a list of questions in advance of your appointment. This can help you to organize your thoughts before you meet with your healthcare team.  

And, when working with your doctor to choose a treatment, consider asking the following questions: 

  • What type of myeloma do I have?  
  • Are there test results that may impact my treatment choices? 
  • What are the risks and benefits of each treatment option? 
  • What approach do you recommend and why?  
  • How is the treatment administered, and what side effects might I expect? 
  • What are my options if this treatment stops working? 
  • Are there newer treatment options available to me, including immunotherapy?  
  • And, is there a clinical trial that might be right for me?  

It’s also a good idea to bring a friend or loved one to your appointment for support to take notes and help you recall information. Afterwards, discuss the appointment together – you can use this time to talk about your care plan and do your own research to learn more about your options.   

The patient portal is another useful tool in your care. You can use it to view lab and test results. And you can use the messaging feature to communicate with your healthcare team when you have more urgent questions to address before your next visit. 

Now that you know more about how to make myeloma treatment decisions, how can you take action? 

  • First, consider a second opinion or a consult with a specialist. 
  • Then, ensure you have had all relevant myeloma testing. 
  • Next, understand and participate in treatment decisions. This includes learning about your options, so you can weigh the pros and cons of each approach. And be sure to speak up and share your personal preferences and goals with your care team. 
  • Communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And finally, bring a friend or loved one to appointments and always write down any questions or concerns in advance. 

Visit powerfulpatients.org/myeloma to learn more about myeloma and access tools for self-advocacy. 

How Can You Thrive With an MPN? Advice for Navigating Care.

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How Can You Thrive With an MPN? Advice for Navigating Care. from Patient Empowerment Network on Vimeo.

How can you thrive with an MPN? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss how to make informed decisions about your care and live a full life with an MPN.

 

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How Can Patients Navigate Care and Thrive with an MPN?


Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! Many years ago, I was diagnosed with a condition called myelofibrosis. At first, it was a scary to learn that I had cancer, but once I found the right treatment option for me, I’ve been living a full life.  

Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care 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. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF. 

As Brian mentioned, with the right treatment, it is possible to live a full life and to thrive with an MPN. 

Brian: 

It’s so true. Navigating my care has been much easier because I partner with my healthcare team – participating in decisions makes me feel like an important member of the team. 

Dr. Liu: 

That’s right, Brian. When considering treatment, it’s important to weigh all of your options.  

While your healthcare team is the expert when it comes to the clinical side of your disease, you as the patient, are the expert on how treatment will impact YOU and your lifestyle.  

Brian: 

And as someone who knows my needs well, my wife is another key member of my team.  She comes with me to appointments and takes notes during visits, and when it is time to make decisions about my care, we both feel well-informed about the options. 

So, Dr. Liu – what factors should be considered when choosing an MPN treatment?  

Dr. Liu: 

Well, it’s important to note that everyone’s MPN is different so what may work for one person, may not work for another. In general, we consider certain factors,1 such as: 

  • The type of MPN, whether it is ET, PV, or MF. 
  • The patient’s age and overall health. 
  • Test results, including blood work or any genetic testing that has taken place. 
  • The symptom burden, which basically means how much the disease symptoms are interfering with a patient’s quality of life. 
  • Any pre-existing health issues. 
  • Finally, and most importantly, the patient’s preference.  

Brian: 

And I like to make informed decisions. So, when considering therapy, I also did some research on my own, and then discussed the information with my healthcare team. It helped my wife and me understand what we’d learned, and confirmed our decision. 

Dr. Liu, what sort of questions should patients ask their doctor when considering a treatment plan? 

Dr. Liu: 

Great question. When choosing therapy, patients should ask: 

  • How is the treatment administered, and how often will I need treatment? 
  • What are the potential side effects of the treatment? 
  • How will the effectiveness of the treatment be monitored? 
  • And, what are options if this treatment doesn’t work for me? 

Brian: 

That’s great advice. Once you’ve begun treatment, it’s important to continue to share how you are feeling with your healthcare team – be sure to mention any side effects or symptoms you may be having with your team. 

Dr. Liu: 

That’s right, Brian. If you speak up about what’s bothering you, we can usually find a way to manage the issue. 

It’s also important point to tell your doctor if you’ve missed a dose of your medication. Many of the newer MPN therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, what steps should you take to thrive in your life with an MPN? 

Brian: 

  • First, understand and participate in treatment decisions. Be sure to share your personal preferences. 
  • Then, communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And, utilize your whole team – nurses, nurse practitioners, and others, are all there to help you. 
  • Use your patient portal. You can view lab work and test results, or even use the messaging feature to communicate with your team. 
  • Bring a friend or loved one to appointments and always write down any questions or concerns in advance.  

Dr. Liu: 

And, most importantly, remember you are at the center of your care. Advocate for yourself! 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

Finding an MPN Treatment Approach That Is Right for You

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Finding an MPN Treatment Approach That Is Right for You  from Patient Empowerment Network on Vimeo.

Appropriate and effective treatment is an essential part of thriving with an MPN. Dr. Joseph Scandura reviews the goals of MPN treatment and factors that should be considered when choosing a therapy.

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

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How Should You Participate in MPN Care and Treatment Decisions?


Transcript:

Katherine Banwell:

One part of thriving with an MPN is finding a treatment approach that manages your disease, the symptoms of your MPN, and that fits with your lifestyle. So, what are the factors that are considered when choosing treatment for patients with ET, PV, and MF?  

Dr. Scandura:

Certainly, the goals of the therapy. So, is the therapy one that I would be looking to maybe delay progression or for long-term potential benefits, or is it something I need now to control short-term risks such as blood clots? The goals of the patient because some therapies may be more suitable to the goals of one patient than another.  

And the other – you know, there’s clinical features that may kind of push towards one approach versus another. Certainly, in a 20-year-old patient, I’m thinking about fertility. I’m thinking about a normal life expectancy. In a 90-year-old patient, I have a different set of concerns, multiple medications – what am I going to do that might be affecting their other comorbid conditions? 

Katherine:

Right. Right. 

Dr. Scandura:

I think about what are my near-term and long-term goals? So, obviously, age becomes a factor there. If I’m 95 years old, no matter what I do that person is not going to live 20 years. If that person’s 20 years old and they’re not living 30, 40, 50, 60 years, that’s a real shame. That’s a huge loss of life. So, that helps kind of point me in one direction or another.  

And, then, there’s different types of therapy. There are injectable agents. There are pills. There are drugs that have been used for a long time but don’t really have an FDA approval. There are drugs that are approved for certain indications.  

And, as physicians, we can sometimes stretch that based upon clinical judgment. So, I think a lot of that goes into the discussion I have with patients about therapy.

And that’s always – you know, I present to them what the options are, what I think the benefits might be, what the potential toxicities are, and then we discuss. 

Tools for Choosing the Right Prostate Cancer Treatment Approach

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Tools for Choosing the Right Prostate Cancer Treatment Approach from Patient Empowerment Network on Vimeo.

Dr. Rana McKay discusses the factors that impact advanced prostate cancer treatment decisions. Dr. McKay reviews potential treatment side effects and explains how patients in treatment are monitored.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

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Transcript:

Katherine Banwell:

Since prostate cancer affects men differently, let’s review what factors could impact which treatment is right for their individual disease. How about we start with symptoms? 

Dr. Rana McKay:

So, yeah. I mean absolutely. I think symptoms are definitely something that plays into effect. Sometimes when patients are first diagnosed, they may not have symptoms. But, you know, boney pain, symptoms of urinary obstruction. You know, there’s specific treatments and strategies that we can deploy to help with those kinds of things. You know other factors that I think I – we take into account when we’re making decisions about which agent should any one patient receive is where are their sites of metastases? Is there disease just in the bones and lymph nodes or are there other organs involved? What’s the genomic make-up of the tumor? There are certain treatments that we would utilize if someone had a certain specific you know, genetic make-up for their tumor. You know, other things that are really important are what kind of drugs has the patient seen before or has that tumor been exposed to? Because that also helps us strategize for what to give them in the future.  

Katherine Banwell:

Do you take into consideration the patient’s comorbidities and their age and overall health? Things like that?  

Dr. Rana McKay:

Absolutely. Yeah. I think we need to absolute take that in account. I think – I think age is one thing. But I think functional status is just as – as important as the actual number itself because people are very different regarding the things that they can do at various age limits and so, that absolutely takes into account weighing the side effects of any given therapy and how that may interact with someone’s existing comorbidities and it may be something that we have to work with a team of other doctors to basically make sure that there is comprehensive, well-rounded care for any one patient.   

For example, some therapies may increase the risk of hyper-tension or increase the risk of volume overload. And so, if somebody has issues with that already we may have them see a cardiologist so we can make sure that, you know, we’re kind of addressing the totality of the patient experience. 

Katherine Banwell:

What do you mean by volume overload? 

Dr. Rana McKay:

Volume overload, I mean if they’ve got too much fluid on board. So, maybe if they have heart failure or something like that, and we have a therapy that’s going to cause them to retain fluid. And so then, we would have to work with a cardiologist to make sure that they don’t run into issues 

Katherine Banwell:

Mm-hmm. Once a man is undergoing treatment for advanced prostate cancer, how are they monitored to see if it’s actually working? 

Dr. Rana McKay:

So, a lot of ways. So, one is by just, you know, visiting with the patient. Making sure that their symptoms are in check. Making sure that they’re not developing new aches or pains that are worrisome. It’s by checking their labs in addition to their organ and bone marrow function. We would check their PSA. And PSA isn’t the whole story. But it is one factor that contributes to us determining whether treatment may or may not be working. It’s also doing intermittent scannings. So, you know, CT scans of the organs, of the lymph nodes. Bone scan and now we actually have PSMA based imaging, which can be integrated to help assess where the disease is and not yet being utilized to assess whether something is working, because we haven’t really defined the criteria there. But, it can be utilized as well.  

Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer

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Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

Dr. David Carbone debunks common misconceptions about non-small cell lung cancer, including treatment effectiveness, age and lung cancer, and patient’s quality of life after treatment.

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

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Transcript:

Katherine:                  

A lung cancer diagnosis often has a certain stigma associated with it, but the majority of that is not based in fact. So, I’d like to play a little game with you called Fact or Fiction. All right? All right, first one. Fact or fiction: Lung cancer is a disease of the older population.

Dr. Carbone:              

If you have lungs, you can get lung cancer. That’s it. I’ve seen 20-year-old lung cancer patients. So, I think it can happen to anybody, and unfortunately, things like the CT screening programs are limited to people over the age of 50, but I’ve had many patients in their 30s and 40s. So, if you have lungs, you can have lung cancer.

Katherine:                  

Okay. Next one, fact or fiction: Quality of life is greatly diminished after undergoing treatment for lung cancer.

Dr. Carbone:              

I completely – fiction. I actually tell people often their quality of life is dramatically improved after starting treatments, and that’s my goal.

And with the new treatments, that’s often true. People will tell me within a week that they feel so much better on the treatment than they did before. So, that’s our goal. Our goal is not to make you feel worse. Our goal is to make you feel better.

Katherine:                  

Of course. All right, last one. Fact or fiction: There are no effective treatments for advanced lung cancer.

Dr. Carbone:              

So, the average survival for lung cancer years ago was four to six months from the time of diagnosis to death. That’s bad. And now, we are seeing in these subsets of patients years and years of survival with simple even pill-type treatments or immunotherapies. And even with the immunotherapies, sometimes you get treatments for a year or two, and then we stop; and we have patients who are years later, off of all treatments for metastatic lung cancer, still with no evidence of disease.

So, that is definitely fiction. We have highly effective treatments for lung cancer. But unfortunately, like everything else, and like I’ve said multiple times, it’s not true for everyone. Our treatments aren’t ideal. Sometimes for a particular patient we can’t find a matching treatment, the standard treatments don’t work, and nothing we can find makes a difference. But I would say you never know that until you try, and for the vast majority of patients, we can definitely give them prolonged, good-quality life. And so, I think that that’s definitely fiction.

What Are the Goals of DLBCL Treatment?

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What Are the Goals of DLBCL Treatment? from Patient Empowerment Network on Vimeo.

A diffuse large B-cell lymphoma (DLBCL) treatment plan may have different goals depending on the patient. Expert Dr. Loretta Nastoupil provides an overview of factors that play into treatment decisions and shares information about current and emerging DLBCL treatments.

Dr. Loretta Nastoupil is Director of the Lymphoma Outcomes Database in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Nastoupil, here.

See More From The Pro-Active DLBCL Patient Toolkit


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Transcript:

Katherine:

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 going to 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 CHOP 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. 

How to Make an Informed Myeloma Treatment Decision

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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.

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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!

How to Make an Informed MPN Treatment Decision

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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!

Myeloma Treatment Decisions: What Should Be Considered?

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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.