Tag Archive for: age

Understanding Prostate Cancer Treatment Options and Care Goals

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Understanding Prostate Cancer Treatment Options and Care Goals from Patient Empowerment Network on Vimeo.

How do prostate cancer treatment options and goals vary from patient to patient? Expert Dr. Rana McKay discusses standard approaches to treating advanced prostate cancer and factors that may impact care decisions.

Dr. Rana McKay is an associate clinical professor of medicine at Moores Cancer Center at UC San Diego Health. Learn more about Dr. McKay.

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See More from Evolve Prostate Cancer

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When Should Prostate Cancer Patients Consider a Clinical Trial?

Transcript:

Katherine:

So, before we move onto understanding current treatment options, Dr. McKay, what are the goals of advanced prostate cancer treatment? And how do they vary by patient? 

Dr. McKay:

Yeah. I do think the goals can vary. I think in my mind, a lot of times, it’s making people live longer, making them feel better. Those are the two salient goals and if our therapies are not achieving one or other of those two goals then we need to rethink the strategy. But different people are different, and they may weigh the risks and benefits of any given therapy, or the slated benefit with the slated risk through a different lens. And I think it’s critically important to ensure that you’re having those communications with your doctor about the things that matter to you and the things that are really important to you. 

Especially, for people who have advanced prostate cancer. So, I think that can help your clinician strategize, “Okay, is this an individual who wants the kitchen sink everything that I can do even if that means more toxicity that I’m going to offer this thing? Or is this a situation where, you know what, unless there’s data that the kitchen sink is going to work, I really kind of want to temper things and try an approach that’s going to be effective, but maybe not associated with that degree of toxicity.” So, those kinds of conversations absolutely need to be happening.  

 Katherine:

With all the recent advances in treatment, is there a standard approach now to treating someone with advanced disease? And if so, what is it?   

Dr. McKay:

Yeah. There absolutely is a standard approach. There’s guidelines that are based off of the FDA-approved regimens of the different agents that can be utilized. There’s data regarding sequencing though, I think there’s more data that needs to be had on sequencing. There are guidelines on when to do germline testing, when to do tumor profiling, when to integrate PSMA PET imaging, the standard hormonal agents, who to use them. So, I do think that there are – there’s a set framework of appropriate management and treatment. But there’s a lot of personalization that is overlaid on top of that rubric. And I think that’s the art of medicine.  

Katherine:

Right. Is there testing to understand if a patient’s disease is more aggressive? Or maybe will respond to a certain type of therapy before you begin it?  

Dr. McKay:

Yeah. A very good question. And I think predictive biomarkers, as you described them, there are several for men with prostate cancer, but there’s not a ton of them. So, we know that homologous recombination repair alterations, HRR, gene alterations, particularly BRCA 1, 2, probably 2, we know that those are biomarkers of response to PARP inhibitors. We know that patients who have high tumor mutation burden, or have a mismatch repair, that those are markers of response to immunotherapy. We know that if people have a certain level of PSMA PET vividity on their PET scan, that that’s a biomarker for receiving lutetium PSMA.   

Those are the main biomarkers that are actually in use in the clinic to date. But I think there’s a lot more that I think are being explored from mutations in the androgen receptor, or amplifications in the androgen receptor, being potentially predictors of response to different degraders, different kind of hormonal agents. There’s certain tumor suppressor gene mutations that may predict that patients may do a little bit better with chemotherapy. So, there’s other markers that are being looked at, but they don’t have the same robustness as the BRCA 1, 2, and other ones that I talked about. 

Katherine:

Yeah. How does a patient’s health and lifestyle impact what treatment approach is right for them?  

Dr. McKay:

I mean, health and lifestyle, diet, and exercise, nutrition, sleep are so important. I think that one of the backbones of treatment for hormonal therapy is androgen deprivation therapy. There can be negative consequences with regards to muscle mass, bone mass, other things related to that therapy. So, I think it’s critically important for patients to maintain a healthy diet, making sure they’re getting appropriate exercise, weight-bearing, resistance training.  

And I think, too, this helps people with their functionality, with their ability, their reserve, and ability to tolerate treatment or tolerate more aggressive treatment. So, half of my clinic is talking about diet and exercise, and how to optimize individual health when people are on therapy. 

Katherine:

Yeah. Mentally, a good diet and sleep –  

Dr. McKay:

Yes.  

Katherine:

And exercise is going to be helpful.  

Dr. McKay:

Yes.  

Katherine:

As well. What about comorbidities? Do they play a role?  

Dr. McKay:

They absolutely do play a role. I think comorbidities like cardiovascular disease, diabetes absolutely can play a role. The hormone therapies, patients can have a propensity to gain weight, they can have a propensity to have worsened cholesterol being on hormone therapy, which can then affect somebody’s cardiovascular health. And so, some of the drugs cause increased hypertension. So, I think understanding the different comorbidities that any individual may have is important in selecting the best therapy, “Well, actually, if you’ve got X, Y, Z going on, maybe I’m going to shy away from this, but lean more towards that.”  

I think making sure that your physician knows about that and knows about changes that happen along the way. Sometimes, people with prostate cancer, many a times they have a long, natural history where they’re seeing the physician caring for them for their prostate cancer over many, many years.

And somebody’s medical history, when they first saw that individual, it’s going to change and evolve over time as different things happen. And so, I think keeping your clinician that’s caring for you for your prostate cancer informed of all the other non-cancer things that are happening I think is a really good idea.  

If you had a fracture, that’s actually a really important thing for somebody who’s got prostate cancer. Or “Gosh, my primary care just started me on Metformin because they think my blood sugar is a little bit off.” These are important things, I think, for clinicians to know about.  

Katherine:

Yeah. It’s all about communication, isn’t it?  

Dr. McKay:

Absolutely. Yeah.  

Katherine:

Don’t worry about over-sharing.  

Dr. McKay:

Yeah. 

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

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Head and Neck Cancer | Key Factors Affecting Treatment Decisions from Patient Empowerment Network on Vimeo.

What are key factors that impact head and neck cancer treatment decisions? Expert Dr. Ezra Cohen discusses the role of imaging tests, individual patient factors, and cancer characteristics in making treatment decisions. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

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Transcript:

Katherine:

How is a path decided then or determined for an individual patient? Is there key lab testing that can impact prognosis and treatment options? 

Dr. Cohen:

Once a patient comes to the attention of the team, and that will usually be accompanied by some sort of biopsy, some sort of pathological diagnosis to confirm that indeed, we’re dealing with let’s say, squamous cell carcinoma. Then the next thing we want to do is we want to stage the disease. And what that means is basically we want to know as much as possible, or accurately as possible, where the cancer is and how big it is.  

So, that would almost always involve scans, usually CT scans, sometimes a PET scan. And we can talk about the advantages and disadvantages of each. Sometimes an MRI in certain situations. But suffice it to say some sort of scan. Some sort of imaging that can tell us where the cancer is, how big it is, if there are any lymph nodes involved and if that cancer has spread beyond the head and neck area.

Once we stage the disease, most patients, and I think certainly most patients should be discussed, their pace, that is, should be discussed at a multidisciplinary tumor board. Where, again, all the specialists convene at the same time, and really go over all the data that are available on that individual and come up with a treatment recommendation.  

That treatment recommendation can be a single modality. So, some small tumors can just be addressed by surgery alone, or radiation therapy alone. But, for more advanced tumors, it is often all three modalities: surgery, radiation, and chemotherapy. And the way they’re sequenced, the way they’re implemented, should be individualized for that specific patient. Again, with those two goals in mind: to cure the cancer and to preserve function.   

Katherine:

What else could guide a treatment decision? For instance, a patient’s co-morbidity, their age, things like that? 

Dr. Cohen:

All of those things. 

Katherine:

Yeah. 

Dr. Cohen:

So, beyond – and those are things of course that we would consider in the discussion, not only at the tumor board but of course with the patient. We know that the therapy that we often recommend is quite aggressive and toxic.  

Now, the justification for that is that we’re going to try to cure the cancer. And, so we think, and of course we discuss this with the patient, that putting the patient through this course of treatment is worthwhile, makes sense, because at the end of it, the goal is for the cancer to be gone. Now, not all patients will agree with that and of course, we, based on comorbidities and age and something we call performance status, we also want to make sure that the patient can get through this aggressive treatment.

Let me just go on a bit of a tangent and describe the therapy for a patient with local advanced head and neck cancer. It would involve about six to seven weeks of radiation, given Monday to Friday. Usually either weekly, or every three-week chemotherapy depending on the chemotherapy chosen.  

And possibly even surgery either before or after the combined chemotherapy and radiation. And so, we’re talking about at least a three-month course of treatment going from the start to recovery. Another three months of side effects that are less intense but still there. And it’s a lot for patients to go through. Patients and their caregivers.

And so, if we feel that there’s a serious comorbidity that would not allow the patient to do that, we sometimes have to alter treatment so that obviously, we don’t want to harm the patient with our treatment. Certainly we don’t want to put them in a life-threatening situation. So, we do have to take those things into account. The good thing about all this – or I guess the silver lining, if you will, is that these toxicities get better.   

Patients recover. So, what I tell patients is we’re going to put you through hell, but at the end of it, I want to be sitting across from you and saying the cancer is gone, and you’re swallowing, and you’re talking normally. 

How Is AML Care Impacted by Bone Marrow Biopsy Results? 

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How Is AML Care Impacted by Bone Marrow Biopsy Results? from Patient Empowerment Network on Vimeo.

What is the impact of bone marrow biopsy results on AML care? Expert Dr. Sara Taveras Alam from UTHealth Houston shares how test results are weighed along with patient factors to set a treatment plan and discusses additional patient monitoring, relapse, and how treatment journeys may vary.

Download Resource Guide | Descargar guía de recursos

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Transcript: 

Lisa Hatfield:

Dr. Taveras, how does the information gathered from a bone marrow biopsy influence treatment decisions for AML care?

Dr. Sara Taveras Alam:

The information gathered from bone marrow biopsies is crucial to decide on the optimal treatment for our patients. We do take into consideration patient factors such as age, comorbidities, and fitness to decide on the treatment that the patient benefits from; however, they are leukemia specific factors, mainly the driving forces behind that leukemia and mutations that may prompt us to use one treatment or another,  so that initial diagnostic bone marrow biopsy is crucial to get the patient started on a treatment course, and then typically, three to four weeks after starting treatment, patients would require what is called a post-induction bone marrow biopsy, so that we can assess the response to treatment, so at that second biopsy, what we’re hoping to see is a patient in a remission, whereas the initial biopsy for an AML patient may have had more than 20 percent blasts or immature cancer cells of AML. 

Our goal is that at this end of induction, three to four weeks after starting chemo, the bone marrow shows less than 5 percent blasts, and then we would call that a morphologic remission. In addition, we would be obtaining the chromosome analysis and mutation testing again on those marrows after treatment, because we would love to achieve the highest response possible where we not only eliminate the bad cells, but we are eliminating the driving forces of these bad cells.

So in an ideal situation where our induction treatment does lead into a remission, AML patients still need to undergo what we call consolidation chemotherapy to maintain a remission. Unfortunately, we know that if we stop treatment, our patients with AML will relapse, and the maintenance treatments depending on the regimen, we may have a stop day at four months or six months, depending on the regimen used, and at different time points during the treatment, a bone marrow biopsy may be repeated.

I think the most crucial time for bone marrow biopsies are at the diagnosis and after induction, if we have achieved our goal to achieve remission, then the bone marrow biopsy may be repeated monthly, depending on the institution that the patient is going to.

However, that part is negotiable depending on the patient’s goals and wishes. If the patient were planned for a stem cell transplant because of the characteristics of their leukemia…if it’s a more aggressive type of acute myeloid leukemia, what we call intermediate or poor risk acute myeloid leukemia, a stem cell transplant is recommended, and before proceeding with a stem cell transplant, we must confirm that the patient continues to be in a remission, so that’s another crucial time point to repeat the bone marrow biopsy in addition to the beginning of induction, so they’re getting a diagnosis and the end of that first induction treatment.

The time points between those two are kind of negotiable, especially in patients that have a lot of trouble with the biopsies, but may be very beneficial to confirm that we are keeping the patient into remission and carry the prognosis of the patient.

Of course, if there’s any concern that there’s a relapse, that would be another reason to repeat a bone marrow biopsy, and while confirmed that there has been a relapse and see what characteristics of the AML has changed, and what treatment would be appropriate at that time frame. Once a patient has been in remission, completed their maintenance treatment potentially received a stem cell transplant if it was appropriate for them, usually patients are surveillance clinic followed up, and a bone marrow biopsy is advisable for their first few years, about every three months to confirm that we’re maintaining a remission and that no further action is needed.

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Collaborate | Being an Empowered Myeloma Patient

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Collaborate | Being an Empowered Myeloma Patient from Patient Empowerment Network on Vimeo.

When facing a myeloma diagnosis, how can you actively engage in your care? This animated video shares tips and advice for becoming empowered in your care, including understanding and setting treatment goals and educating yourself about myeloma.

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Transcript:

Bianca: 

Hi! I’m Bianca, and I’m a nurse specializing in myeloma. And this is Suzanne, who is living with myeloma.  

Together, we’re going to guide you through a series of videos to help you learn more about your myeloma and we’ll share tips to help you play an active role in your care and treatment decisions. 

Suzanne, I must say, you’re a great example of an empowered patient.  

Suzanne: 

Thank you, Bianca! It wasn’t always the case, but I’ve had some expert guidance from my healthcare team – including you!  

Bianca, what does it mean to be an empowered patient, exactly?  

Bianca: 

We can start with the World Health Organization’s definition of patient empowerment, which is: “a process through which people gain greater control over decisions and actions affecting their health.” 

Suzanne: 

That sounds right to me—as I’ve become more engaged in my care, I’ve definitely felt more confident and in control of decisions.  But when I was first diagnosed with myeloma, I was overwhelmed…and so was my family. Once we took proactive steps to learn more about my diagnosis and find the right healthcare team, I was able to access better overall care and to feel confident about my role in decisions.  

Bianca: 

Exactly, Suzanne. Let’s walk through some keys steps to becoming empowered, starting with diagnosis and education: 

  • When considering your care team, it’s a good idea to seek a second opinion with a myeloma specialist.  
  • A specialist can confirm your diagnosis, help you define your treatment goals, and provide peace of mind about your decisions.  
  • And, you should also educate yourself about your myeloma. If you’re watching this video on the Patient Empowerment Network website, you’ve already taken this step! 
  • In addition, there are a number of other advocacy groups specific to myeloma that provide a wealth of resources and support. You can ask your healthcare team for recommendations for learning about myeloma.  

Suzanne: 

That’s right, Bianca. And, it’s useful to access to your online patient portal, if available. You can use the portal to view medical records and test results and to communicate with your healthcare team.  

And as I’ve learned, it’s also important to actively participate in your care. This means speaking up and asking questions, which is not always easy. Bianca, what advice do you have for better communication with your healthcare team? 

Bianca: 

  • First, always prepare for appointments by writing down a list of questions in advance. You can use the Notes app on your smart phone or download one of the Office Visit Planners on the Patient Empowerment Network website to help you organize your thoughts.   
  • And, try to bring a friend or loved one to appointments to help you remember information and to take notes. 
  • Finally, it’s essential to realize that your doctor wants to know how you are doing and is there to help you. If you are hesitant about a treatment option or a side effect is bothering you, let someone on your healthcare team know. You can even send a message through your patient portal. 

Suzanne: 

That’s great advice, Bianca! I like the convenience of communicating through the patient portal, particularly if questions come up after my office visit. Remember, you have a voice in your care decisions, so speak up and ask questions.   

Bianca: 

That’s right! And, visit powerfulpatients.org/myeloma to view more videos with Suzanne and me.   

Thanks for joining us!  

Factors to Consider When Choosing a Gastric Cancer Treatment Approach

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Factors to Consider When Choosing a Gastric Cancer Treatment Approach from Patient Empowerment Network on Vimeo.

What factors should be considered when choosing a gastric cancer treatment approach? Dr. Yelena Janjigian outlines key considerations that help determine the best treatment for an individual patient.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

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Transcript:

Katherine:

Are there other decision factors involved in deciding on treatment options? You mentioned age, comorbidities. What else do you look at? 

Dr. Janjigian:

Yeah, the other important factor as I said is nutrition. Being able to stay fit and stay independent is very important. Some of my patients ask me, and then they feel like what they eat is so important that as soon as they get their diagnosis, they restrict their diet. And then they start losing weight. And that’s not good. The number one negative prognostic factor is if you lose more than 10 percent of your body weight within the first few months of the diagnosis – because you get really weak, and then you can’t tolerate the chemotherapy. So, I tell the patients, “Your body will take from you whatever it wants. The cancer will take from you, from your body. So, you need to support yourself nutritionally.” So, if you don’t feel like eating a salad, but you are craving a cookie, it’s okay.  

Have that cookie; just don’t lose weight. And I think that’s the number one. And also, the other factor is how do you communicate your diagnosis and your prognosis to your family and your friends? Because then everybody’s asking and making you in some ways anxious, your job. And what I tell patients is, “It’s on need-to-know basis.” If you find love and support, then you can tell people.

Otherwise, you can just loosely kind of mention that you need some help, and you’re going through treatment without specific details. And the great part about these combination immunotherapies is that a lot of our functional patients actually continue to work through this. And so, we fill out whatever forms they need for their jobs and so forth. But we have lawyers that are continuing to work, teachers, and sometimes even construction workers. So, really, I would say make decisions as they come up.

Don’t run too far ahead and sort of assume that you’re going to not be well. But if you want to take some time off, that’s okay too. And so, I think the treatment paradigm for this disease has evolved so much that there’s a lot of misconceptions. And I think the job of a good oncologist is to let the patient live their life in as normal a fashion as possible.

So, we work the chemo schedules around their schedule. Some of these immunotherapies you can give once a month. So, I have patients who will fly into see me, for example, get the dose, and then go back home. So, I think don’t be afraid to ask for what you need. 

Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects

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Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects from Patient Empowerment Network on Vimeo.

How are MPN symptoms and treatment side effect managed? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss the importance of clear communication with your healthcare team, the process for assessing common issues, and advice for advocating for yourself.

 

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Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! I’ve been living with a condition called myelofibrosis for many years. While there have certainly been ups and downs, I’ve been able to navigate care for my condition and to live a full life.  

So how have I been able to do that? First and foremost, I have a great relationship with my care team, whom I communicate with regularly. Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist and a specialist in myeloproliferative neoplasms or MPNs. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF.  This group of blood cancers is characterized by the bone marrow overproducing a certain type of cell.  

Maintaining a good relationship with your healthcare team, coupled with finding a treatment approach that works for you, can help you live a full life and to thrive with an MPN. 

Brian: 

Exactly, Dr. Liu. Over the years, I’ve experienced periodic issues with my condition. I’ve had symptoms and treatment side effects that have been bothersome and interfered with my life. But, communication with my team has been essential to feeling well.  

Dr. Liu: 

That’s right, Brian. When symptoms or treatment side effects are bothering you, it’s important to let your healthcare provide know how you are feeling. 

Brian: 

For example, recently I felt tired beyond general sleepiness. And when I shared this with Dr. Liu, we discussed potential causes of the fatigue, and we talked in-depth about my options to manage it, including changing therapy and some simple changes to my diet and lifestyle.1 Over time, my energy levels improved, but having the open dialogue with Dr. Liu was essential to tackling this symptom head-on. 

Dr. Liu: 

That’s a great example. When I first hear from a patient that they are having an issue, we go through several steps to find a solution.2  

We start by ensuring that the disease is well-controlled, so we check blood counts. Next, we try to determine if it is a symptom of the MPN or a side effect of the treatment. Once we’ve done those steps, we come up with potential solutions which may include, but are not limited to: 

  • A dose reduction or a treatment holiday. 
  • Changing therapy to find something that is more well-tolerated. 

Other considerations are dependent upon the specific symptoms and side effects but may include: 

  • Supportive care options, including diet and exercise. 
  • A visit to your primary care doctor to see if there is something else going on physically. 

Brian: 

That’s good to know, Dr. Liu. Something you brought up with me, which I feel is important to mention, is mental health. Often, emotional symptoms can take a toll on the body, causing fatigue or other issues. 

Dr. Liu: 

Great point, Brian. Seeking care for your mental health is crucial, particularly if you are in active treatment. 

Brian: 

Of course, we know that the symptoms and treatment side effects for MPNs can vary widely, so what advice do you have for patients who may be afraid to speak up? 

Dr. Liu: 

The most important thing to remember is that we have options to help you, no matter what you are going through. It’s your body and if you don’t let your provider know what you’re going through, they can’t help you. 

Brian: 

So true. It’s also a good idea to bring a care partner along to appointments, sometimes a spouse or friend can you help you communicate what’s going on. 

Dr. Liu: 

That’s great advice, Brian. Bringing someone along to take notes is a great idea. Also, be sure to write down any questions or concerns you have in advance to make the most of your appointment. 

Brian: 

OK, Dr. Liu, let’s recap your advice for MPN symptom management: 

Dr. Liu: 

Good idea! First, remember that everyone’s MPN is different, so managing symptoms and side effects can be tricky. Communicating with your healthcare team is critical to your overall care – report any and all concerns to your team immediately. 

And, do your part. Make sure you see your primary care physician regularly and do your best to maintain a healthy lifestyle. 

Brian 

And, most importantly, remember you are at the center of your care. Never hesitate to share your opinion and to advocate for yourself. 

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

AML Treatment Decisions | Understanding Factors That Impact Your Options

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AML Treatment Decisions | Understanding Factors That Impact Your Options from Patient Empowerment Network on Vimeo.

An acute myeloid leukemia (AML) diagnosis can be different for each individual patient, so how is a treatment approach determined? AML specialist Dr. Jacqueline Garcia provides an overview of factors taken into consideration when choosing therapy, including age, overall health, and the patient’s preference. 

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

See More from Thrive AML

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Transcript:

Katherine Banwell:

With all the treatment options available, how do you decide who gets what? Tell us what is considered when choosing treatment for a patient. 

Dr. Jacqueline Garcia:

When I – this is a complicated question, because it’s not like you follow any particular algorithm. But when I meet a patient, I make a decision on what’s important to the patient and what’s  their goal. If I know – I need to understand their overall health to get a sense of are there ongoing competing risk factors that are active and more likely to impede with response, ability to deliver chemo, ability to get to transplant, something that tells me that’s not a possibility, or is their age too advanced – meaning greater than 75 – where we know that some of the treatments are not safe to deliver in that setting?   

So, I take a look at a patient’s overall health and age to make a decision. I take a look at bone marrow biopsy and lab findings to understand the flavor of their leukemia, from chromosomes to mutations. And because I am familiar with the data to give me a sense of what’s safe, what’s tolerable, and importantly what types of diseases, or subtypes of AML, would respond to one therapy over another, that’s how I formulate a recommendation.  

And based on all of that, all together, I’ll talk to them about treating the AML in steps. The first step is getting them into a remission, which can be done regardless of therapy type. That means to get their bone marrow under control, blood counts to recover. The second step, which is a more involved conversation that I often give a little bit of a hint of, but I go into greater detail over time, because we will see each other quite a lot, whether in the hospital or in clinic, is how to keep them in remission.  

And that’s where details about things like transplant come into play. I do my best to not overwhelm them, because when a patient hears the word transplant – and that’s often what they hear from family and friends because that’s what you can Google – they don’t know that there are many things, or many weeks of therapy, that have to happen in advance of transplant even being considered or happening. And transplant can’t even happen until someone’s in remission.  

But that is always on the forefront of a leukemia doctor’s mind, “Can I bring this patient to a transplantation? How successful will I be and what else do I need to give them to get them there sooner, safer, with a deeper response?” So, that way transplant could be successful. Transplant, by the way, is when we give a patient someone else’s stem cells that match their HLA typing, or their white blood cell signature.  

And it helps us to use someone else’s immune system to completely irradicate any microscopic leftover leukemia in a patient. But that is only successful when patients have good disease control or remissions. And that is only also successful if we have a donor for the patient, both of which  require at least several weeks to a couple of months of therapy. But that process is always initiated and ongoing in the background. And so, we often do this in piecemeal, because getting a diagnosis is already overwhelming. Learning about treatment is overwhelming.  

Learning about the frequency of labs, transfusions, being hospitalized, and then details about what a transplant would entail can be also overwhelming. But a lot of family and friends like to ask, because they feel like that is one way they might be able to help a patient. So, I know that they often eagerly ask the patient, “Well, what about this? How can I help?”  

Katherine Banwell:

Right. I can imagine that patient preference is also considered. But what kind of questions should patients ask about their treatment regimen?  

Dr. Jacqueline Garcia:

I always tell patients that I care very much about things like travel, hotels, all that jazz. But I always tell them let’s first talk about their health, what treatment I would recommend based on the available options and what their disease would mostly respond to, because I want it to be successful. And I always tell them let’s reserve questions on how it’s going to be done for last. I call that the logistics. I will never bring up or recommend something that could never be possible. But that being said, I try not to let the commute determine the decision.  

Whether or not there needs to be a hospitalization versus a hotel stay. I always consider then the background, but that financial decision should not drive the best treatment choice for a patient. Very fortunately, we’re in a country where patients have the ability – often, not always – to seek second opinions or to travel to academic centers.  

And because AML is an emergent or life-threatening disease, many insurance providers allow patients to come up to a big center to be treated, which I think is more than appropriate. So, we get into details of logistics last, because that’s the one thing that we can often overcome by providing additional resources and support. In terms of patient preference, if that’s what you mean with that, I would say I leave logistics to last, but we always consider and we do our best to accommodate.  

And that might be where we inform them we will look into getting a local partner to help us with additional therapies after the first month or upon discharge. So, it totally depends on the scenario for a patient, whether or not they have a local provider and a local hospital that could accommodate acute leukemia. I always tell patients ideally you don’t want to go to a place that only sees this once per year. You want to go to a place where everyone has seen it multiple times, including the nurses on the floors.  

So, that way, when there’s a complication, everyone knows what to do. We don’t want any “surprises” when it’s really just run-of-the-mill standard stuff for us every day. In terms of what patients desire, we always keep that in the conversation of their level of support. Can they swallow pills? Are they able to cope with being in and out of the hospital? All that stuff gets considered, but I think if they hear about the plan, about what’s required, when my expectation would be for a response, when the frequency of trips to a big city would decrease, how I could get a local partner to help with some of the lab or transfusion burden.  

Many of those preferences that they thought they had diminished, because they recognize that we found a way to make it work.  

Katherine Banwell:

Dr. Garcia, you mentioned earlier the fact that some therapies can cause a lot of side effects, like nausea. And certainly, speaking up and telling your healthcare team how you’re feeling and what some of the symptoms and side effects are, that’s really essential. What is the impetus for someone to consider changing treatment if something is just absolutely not agreeing with them?  

Dr. Jacqueline Garcia:

So, there are many reasons to change a treatment. One is a patient doesn’t tolerate it. It depends on what the issue is. Is it something that’s serious, like a liver or enzyme abnormality that is very abnormal, or a new cardiac problem where it would warrant a change or a dose reduction? That makes sense. There is definitely – often, there’s a lot of guidance in the package inserts or within a clinical trial and how to manage that. But if patient has some intolerabilities that could be overcome with standard supportive care methods, I would make sure we’ve done that.   

So, I would make sure you give you medical team the chance to fix any nausea. We have so many great antinausea drugs. I would want to make sure – or if constipation or diarrhea. It’s often a GI issue that patients get really bothered by.  

I would try to delineate whether or not the side effect was really from the chemo or is from the leukemia that is not yet under control. Or is it another medical condition or a drug-drug interaction that was missed. So, I would do my best to make sure there wasn’t something that was fixable or something else that should be addressed. We otherwise would recommend changing therapy for an extreme intolerability if there was another equivalent better option. And if someone’s disease does not respond to treatment, then we would consider another therapy, too.  

Advances in the Treatment of Relapsed/Refractory Acute Myeloid Leukemia (AML)

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Advances in the Treatment of Relapsed/Refractory Acute Myeloid Leukemia (AML) from Patient Empowerment Network on Vimeo.

AML expert Dr. Omer Jamy discusses his approach when considering treatment for patients with relapsed or refractory AML, including transplant eligibility, molecular markers, and whether clinical trials may be an appropriate option.

Dr. Omer Jamy is a Leukemia and Bone Marrow Transplant Physician and Assistant Professor at the University of Alabama at Birmingham. Learn more about Dr. Omer Jamy.

See More From INSIST! AML

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Essential Testing Optimizing AML Care with Personalized Medicine

Transcript:

Katherine Banwell:

Dr. Jamy, are there any recent advances that may affect the care of patients with relapsed or refractory AML? 

Dr. Omer Jamy:

Yeah, that’s a good question. So, patients with relapse refractory AML, of course, carry a poor prognosis. That means that chemotherapy was working and has stopped working or chemotherapy didn’t work from the get-go, right?  

So, in my practice I try to divide patients into two different buckets. One is that I need to get them into remission, and they’re fit for a transplant, so I take them to transplant.  

So, then my treatment approach is a little different for those patients. As opposed to someone who’s elderly or too frail, that they may go into remission, but they may not be able to proceed to stem cell transplantation after that.  

So, what happened in the relapsed/refractory setting also depends on what the patient received in the upfront setting. Ideally, I would recommend a clinical trial enrollment for patients with relapse refractory AML if they have access to it. At the time of relapsed/refractory AML, it is very important to again profile the leukemia to see if there are any mutations that were present at diagnosis or if there are any new mutations for which there may be targeted therapy. Some of those mutations for which we have targeted therapy include FLT3-ITD for which there is a drug called gilteritnib (Xospata), which is FDA-approved in the relapsed/refractory setting. 

We spoke about IDH 1 which is ivosidenib, IDH 2 which is enasidenib (Idhifa) is also approved for patients with relapsed/refractory AML. And then more recently the FDA approved another IDH1 compound called olutasidenib (Rezlidhia) which is also for patients with relapse refractory acute myeloid leukemia with an IDH1 mutation. I think these are target therapies which have shown to get people into a second remission and beyond. And these have been approved in the last few years. And I think it is very important to basically test whether the person harbors these mutations so that we can target them accordingly.  

For patients who don’t have any mutations we would generally, outside of a clinical trial, probably use the combination of some of the approved agents that may be venetoclax (Venclexta) with azacitidine (Vidaza) or decitabine (Dacogen). Patients who may have received this venetoclax or a hypomethylating agents frontline and may still be eligible for intensive chemotherapy.  

You could offer them intensive chemotherapy in the relapsed/refractory setting, but I would say that at this point being at a center where there’s opportunities to enroll in a clinical trial would be really helpful as well. 

When Should AML Patients Consider Joining a Clinical Trial?

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When Should AML Patients Consider Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

With AML research advancing quickly, clinical trials are an important consideration when making a treatment decision. AML expert and researcher Dr. Omer Jamy discusses when joining a clinical trial may be appropriate. 

Dr. Omer Jamy is a Leukemia and Bone Marrow Transplant Physician and Assistant Professor at the University of Alabama at Birmingham. Learn more about Dr. Omer Jamy.

See More from Thrive AML

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Transcript:

Katherine Banwell:

Dr. Jamy, when should AML patients consider joining a clinical trial? 

Dr. Omer Jamy:

Yeah, that’s a very interesting question. No, I have my personal thoughts on that which I share. So, I feel like clinical trials are of different flavors. They range from early phase to late phase trials. I think being at a center where there’s opportunities to enroll in clinical trials is really helpful. Now if you have a newly diagnosed patient with AML, there is good standard of care treatment. Of course, they can be improved upon.  

I would probably improve upon them in the setting of a Phase III where they get standard of care plus an additional agent versus placebo where at minimum, they’re getting standard of care, right? So, it will be very challenging unless it’s a very novel concept to enroll someone who has not seen any standard therapy on an earlier phase study. Let’s put it this way. Whereas it changes completely when they’ve relapsed meaning they’ve gone through options which are pretty standard. At that point, enrolling in the clinical trial is most likely in their best interest. I think because once leukemia relapses, we have limited options.  

I think we’ve been lucky over the past five years that we’ve had several drugs approved. But there’s still probably less than 10. And out of those, not everybody is a candidate for each of those drugs. They’re targeting specific mutations. So, the relapse refractory setting I think enrolling in a clinical trial is really helpful. Up front I just take more interest in the clinical trial design and the consent form before agreeing to participate. 

How Can You Thrive With AML? Advice for Navigating Care.

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

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

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Transcript:

Raquel: 

Hi, I’m Raquel. Nice to meet you! I am living with acute myeloid leukemia, or AML. When I was first diagnosed, my husband and I were very overwhelmed by a cancer diagnosis. But once I found the right care team and learned more about my disease and treatment options, I’ve been living a full life.   

Meet, Dr. Shaw – my doctor. 

Dr. Shaw: 

Hi! I’m Dr. Shaw, and I’m a hematologist specializing in the care of people with AML.   

AML is a cancer of the blood and bone marrow, and it is the most common acute leukemia in adults in the United States. Because this is an acute leukemia, it progresses quickly and should be treated immediately.   

There are typically two phases of therapy:  

  • Induction therapy is the first line of treatment and is meant to induce remission.  
  • The second phase is consolidation therapy which is meant to maintain the remission.  

As Raquel mentioned, with the right team and care plan, it is possible to live a full life and to thrive with AML. 

Raquel: 

It’s so true. Navigating my care has been much easier, because I partner with my healthcare team – it makes me feel involved and confident in decisions. 

Dr. Shaw: 

That’s right, Raquel. 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.  

Raquel: 

And as someone who knows my needs well, my husband is another key member of my team.  He 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. Shaw – what factors should be considered when choosing an AML treatment? 

Dr. Shaw: 

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

  • The patient’s age and overall health. 
  • Any pre-existing health issues. 
  • Test results, including any mutational testing results. 
  • Finally, and most importantly, the patient’s treatment goals and preference. 

Raquel: 

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 husband and me understand what we’d learned, and confirmed our decision. 

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

Dr. Shaw: 

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? 
  • Is there a clinical trial that might be right for me? 

Raquel: 

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. 

Dr. Shaw: 

That’s right, Raquel. 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 AML therapies are self-administered, and it’s important to let us know so we can adjust the plan if necessary. 

So, Raquel, can you share advice for thriving with AML?  

Raquel: 

  • First, understand and participate in treatment decisions. Be sure to educate yourself about AML and share your personal preferences when choosing therapy. 
  • 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. Shaw: 

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

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

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.

See More From Thrive MPNs

 

Related Programs:

 
Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

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

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

 How Should You Participate in MPN Care and Treatment Decisions?

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.
 
 

Related Resources:

What Is Personalized Prostate Cancer Medicine?

Tools for Partnering in Your Prostate Cancer Care

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.