Tag Archive for: chemotherapy

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

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Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

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What Are Advanced Prostate Cancer Treatment Options?

What Are Advanced Prostate Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

What is advanced prostate cancer and how is it treated? Expert Dr. Tanya Dorff explains advanced prostate cancer and discusses available treatment approaches, including clinical trial considerations.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.

 

Related Resources:

What Is Advanced Prostate Cancer?

What Questions Should Prostate Cancer Patients Ask About Clinical Trials


Transcript:

Katherine:

First, what does it mean to have advanced disease? 

Dr. Dorff:

Advanced prostate cancer signals cancer that’s come back after curative intention or has presented de novo in a way that means we don’t currently have a tool to cure it. That’s at least how I view advanced prostate cancer. You could take a broader definition and consider some high-risk localized patients who need multimodal therapy, but to me, it’s really signaling a shift from something we’re aiming to cure versus something we’re aiming to manage, so that can manifest just as a PSA that’s rising, what we call biochemical recurrence, or it can manifest as visible metastatic disease. 

Katherine:

What does “locally advanced mean? 

Dr. Dorff:

So, “locally advanced” means that it hasn’t metastasized, but it might be involving the local structures, like the seminal vesicles or the bladder or some of the regional lymph nodes, the pelvic lymph nodes. 

Katherine:

How is advanced prostate cancer treated? 

Dr. Dorff:

The cornerstone of treatment for advanced prostate cancer has really been hormone therapy. I think there’s a lot of negative stuff out there on the internet about hormone therapy that I think does a disservice to patients because hormone therapy is truly very, very effective and, for many men, can be quite livable. 

I have patients who live more than a decade on hormone therapy, and they’re running their businesses and they’re raising their grandkids, they’re traveling, they’re running 10Ks, they’re doing all the things that they might want to be doing. That’s not to say there aren’t side effects, but hormone therapy is an effective cornerstone, and I really hope people won’t dismiss it offhand because of the negative things they’ve heard or read about it. 

Katherine:

What about other treatment classes?  

Dr. Dorff:

Most of our other treatments are really layered on top of hormone therapy. We may get to a point – 10 years from now, I don’t know, sometime in the future – when we don’t start with the hormone therapy, so a lot of patients come in asking about the new radiopharmaceutical, the Lutetium-177-PSMA that got approved last year, or about whether chemotherapy can be used. They can be, but they’re really layered on top of hormone therapy, so the hormone therapy is the first treatment, it’s the most effective right now, and then it’s continued as we swap out – we add a novel hormonal agent like abiraterone (Zytiga), or enzalutamide (Xtandi), or one of the others. 

When that is no longer effective, we swap that out, we might use chemotherapy or the radiopharmaceutical. There’s also an immunotherapy that’s been around for more than a decade called sipuleucel-T, and now there’s the targeted therapies – the PARP inhibitors – as well for select patients. 

Katherine:

Where do clinical trials fit into treatment?  

Dr. Dorff:

That’s a great question. I’m so glad you asked. Clinical trials some people mistakenly believe are your last choice, like you’ve gone through every single treatment we have, and then you go to a clinical trial. That’s not the case. Some of the biggest advances in prostate cancer have been when we’ve taken drugs that work in a more advanced resistance setting, like a second- or third-line, and when we move them right up front, first-line, we dramatically amplify their benefit. We dramatically improve survival. 

So, if we don’t think about a clinical trial in the first line, we’re going to miss the opportunity to not only develop those new treatment paradigms, but actually participate in them ahead of when they become the new standard of care down the road. 

Another misconception that people have often about clinical trials is that they are always randomized, there’s always a flipping of the coin in assignment of different treatments, and that they may include a placebo. So, most of our clinical trials at this point do not include placebo. Because we have so many effective treatment options, we’re more and more frequently comparing either two drugs against one, so everyone’s getting at least one effective drug, or we’re not comparing at all, but everyone’s getting some new treatment or some combination of treatments when we’re working out dosing in that scenario, like a Phase II. 

So, clinical trials are really an option at any stage of prostate cancer, even at diagnosis for localized disease all the way through, and truly, I hope people would consider looking at those as options because that’s where some of the most innovative treatment options are going to become available to them. 

What Does Active Surveillance Mean for Prostate Cancer?

What Does Active Surveillance Mean for Prostate Cancer? from Patient Empowerment Network on Vimeo.

Prostate cancer care may include active surveillance, but what does it mean exactly? Expert Dr. Tanya Dorff explains this approach and how it is used to monitor patients with prostate cancer.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.

 

Related Resources:

How Is Early Stage Prostate Cancer Treated

What Are Advanced Prostate Cancer Treatment Options


Transcript:

Dr. Dorff:

Active surveillance is different than what some people think it is. So, some people think it means we’re not going to treat the cancer, that we’re just going to let it take its natural course. It’s actually quite active, as the name implies. We’re really trying to get to know a person’s cancer and understand whether it is a cancer that will ultimately need to be treated, in which case we will intervene with definitive treatment, whether that be radiation or surgery, but the goal is to find those patients whose cancer is not very aggressive and may never need to be treated so that they can avoid the possible risks that come from definitive local therapy. 

Katherine:

So it’s more like a watch-and-wait situation? 

Dr. Dorff:

But it’s…I, again, view it as a little bit different than that. Watch and wait is “let’s just let it do what it’s going to do.” Active surveillance is what I call a getting-to-know-you period. Let’s understand whether these clinical features that have signaled that your cancer may be low-risk, may not need treatment – let’s see if that really plays out, let’s make sure we haven’t missed anything, and if your cancer needs treatment, we’re going to treat it. 

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Thriving With Prostate Cancer | Tools for Navigating Care and Treatment

Thriving With Prostate Cancer | Tools for Navigating Care and Treatment from Patient Empowerment Network on Vimeo.

How can you thrive with prostate cancer? Dr. Tanya Dorff discusses prostate cancer treatment and developing research, side effect and symptom management, and shares advice and resources for coping with emotional issues.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff here.

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Download Resource Guide

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Understanding Advanced Prostate Cancer Treatment Approaches 

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Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is part of our Thrive series, and we’re going to discuss tools to help you navigate life with prostate cancer. Before we meet our guest, let’s review a few important details. The reminder email you’ve received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar.

At the end of this program, you’ll receive a link to a survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

Well, let’s meet our guest today. Joining me is Dr. Tanya Dorff. Dr. Dorff, welcome. Would you please introduce yourself?

Dr. Dorff:

Thank you. Hi, I’m Tanya Dorff. I’m a medical oncologist and section chief of the genitourinary cancer program at City of Hope, which is near Los Angeles, California.

Katherine:

Excellent. Thank you so much for taking the time to join us today.

Dr. Dorff:

My pleasure.

Katherine:

Like all of the webinars in our Thrive series, we start with the same question. In your experience, what do you think it means to thrive with prostate cancer?

Dr. Dorff:

Well, that’s a big question. As a medical oncologist, my job is to try to strike a balance between cancer control and quality of life, and I guess that’s how I would put thriving with prostate cancer. It’s not always just about what is the PSA doing, but it’s also about, ‘How are you getting around your day-to-day life activities, and are you able to do the things you enjoy?’ So, treatments can be very effective. They can also have significant side effects, and we spend a lot of time day in and day out trying to help men strike a good balance.

Katherine:

Thank you for that, Dr. Dorff. Let’s move on to how prostate cancer is treated. This webinar is mainly focused on advanced prostate cancer. But before we get into treatments for more advanced disease, let’s do a quick overview of early-stage prostate cancer options. First, some prostate cancer patients are often put in active surveillance. What does that mean?

Dr. Dorff:

Active surveillance is different than what some people think it is. So, some people think it means we’re not going to treat the cancer, that we’re just going to let it take its natural course. It’s actually quite active, as the name implies. We’re really trying to get to know a person’s cancer and understand whether it is a cancer that will ultimately need to be treated, in which case we will intervene with definitive treatment, whether that be radiation or surgery, but the goal is to find those patients whose cancer is not very aggressive and may never need to be treated so that they can avoid the possible risks that come from definitive local therapy.

Katherine:

So it’s more like a watch-and-wait situation?

Dr. Dorff:

But it’s…I, again, view it as a little bit different than that. Watch and wait is “let’s just let it do what it’s going to do.” Active surveillance is what I call a getting-to-know-you period. Let’s understand whether these clinical features that have signaled that your cancer may be low-risk, may not need treatment – let’s see if that really plays out, let’s make sure we haven’t missed anything, and if your cancer needs treatment, we’re going to treat it.

Katherine:

Okay, that’s good to know, thank you. When it is time to start treatment, what types of approaches are available for early-stage prostate cancer patients?

Dr. Dorff:

Localized prostate cancer or early-stage prostate cancer can be cured with either surgery or radiation, and we actually view these to be equally effective options. Sometimes people have the misconception that if they’re getting radiation to treat their localized prostate cancer, they’re being relegated to a noncurative or a less effective option. It’s actually not the case. We don’t have truly good, randomized, head-to-head studies.

You can find retrospective studies, people looking back at 2,000 patients treated at this institution or that institution, and you can find a study that pretty much says whatever you want it to. You can find some that say surgery’s better, some that say radiation’s better, but in sum, we sort of view them as being equally effective options. And so, they just have different side effect profiles, and so, we often counsel patients who are considering which local treatment to receive to look at what their current urinary function is, what their goals are for their long-term function, both urinary and sexual, and use that as a guide, as well as their age, their other health conditions, and those kinds of factors. 

Katherine:

Let’s turn now to how advanced prostate cancer is treated. First, what does it mean to have advanced disease?

Dr. Dorff:

Advanced prostate cancer signals cancer that’s come back after curative intention or has presented de novo in a way that means we don’t currently have a tool to cure it. That’s at least how I view advanced prostate cancer. You could take a broader definition and consider some high-risk localized patients who need multimodal therapy, but to me, it’s really signaling a shift from something we’re aiming to cure versus something we’re aiming to manage, so that can manifest just as a PSA that’s rising, what we call biochemical recurrence, or it can manifest as visible metastatic disease.

Katherine:

What does “locally advanced” mean?

Dr. Dorff:

So, “locally advanced” means that it hasn’t metastasized, but it might be involving the local structures, like the seminal vesicles or the bladder or some of the regional lymph nodes, the pelvic lymph nodes.

Katherine:

How is advanced prostate cancer treated?

Dr. Dorff:

The cornerstone of treatment for advanced prostate cancer has really been hormone therapy. I think there’s a lot of negative stuff out there on the internet about hormone therapy that I think does a disservice to patients because hormone therapy is truly very, very effective and, for many men, can be quite livable.

I have patients who live more than a decade on hormone therapy, and they’re running their businesses and they’re raising their grandkids, they’re traveling, they’re running 10Ks, they’re doing all the things that they might want to be doing. That’s not to say there aren’t side effects, but hormone therapy is an effective cornerstone, and I really hope people won’t dismiss it offhand because of the negative things they’ve heard or read about it.

Katherine:

What about other treatment classes?

Dr. Dorff:

Most of our other treatments are really layered on top of hormone therapy. We may get to a point – 10 years from now, I don’t know, sometime in the future – when we don’t start with the hormone therapy, so a lot of patients come in asking about the new radiopharmaceutical, the Lutetium-177-PSMA that got approved last year, or about whether chemotherapy can be used. They can be, but they’re really layered on top of hormone therapy, so the hormone therapy is the first treatment, it’s the most effective right now, and then it’s continued as we swap out – we add a novel hormonal agent like abiraterone (Zytiga), or enzalutamide (Xtandi), or one of the others.

When that is no longer effective, we swap that out, we might use chemotherapy or the radiopharmaceutical. There’s also an immunotherapy that’s been around for more than a decade called sipuleucel-T, and now there’s the targeted therapies – the PARP inhibitors – as well for select patients.

Katherine:

Where do clinical trials fit into treatment?

Dr. Dorff:

That’s a great question. I’m so glad you asked. Clinical trials some people mistakenly believe are your last choice, like you’ve gone through every single treatment we have, and then you go to a clinical trial. That’s not the case. Some of the biggest advances in prostate cancer have been when we’ve taken drugs that work in a more advanced resistance setting, like a second- or third-line, and when we move them right up front, first-line, we dramatically amplify their benefit. We dramatically improve survival.

So, if we don’t think about a clinical trial in the first line, we’re going to miss the opportunity to not only develop those new treatment paradigms, but actually participate in them ahead of when they become the new standard of care down the road.

Another misconception that people have often about clinical trials is that they are always randomized, there’s always a flipping of the coin in assignment of different treatments, and that they may include a placebo. So, most of our clinical trials at this point do not include placebo. Because we have so many effective treatment options, we’re more and more frequently comparing either two drugs against one, so everyone’s getting at least one effective drug, or we’re not comparing at all, but everyone’s getting some new treatment or some combination of treatments when we’re working out dosing in that scenario, like a Phase II.

So, clinical trials are really an option at any stage of prostate cancer, even at diagnosis for localized disease all the way through, and truly, I hope people would consider looking at those as options because that’s where some of the most innovative treatment options are going to become available to them.

Katherine:

Yeah. What sorts of questions should patients ask their doctors about clinical trials?

Dr. Dorff:

There are a few really basic things to ask about any clinical trial that you’re being presented as an option. One is is there a randomization? Is there a treatment assignment where some people get one treatment and some people get another treatment? Another one is is there a placebo? I think if we just get those questions up front, right away, then people may be more open to hearing what’s happening in the rest of the trial.

Our informed consent documents are reviewed by ethical consultants and are really meant to inform about risks more than benefits, so the other thing to really ask the provider is what’s the goal of the trial, because that’s often not clearly communicated in an informed consent. Why did the people who designed this trial think it was a good idea? Is there science behind it, is there clinical data behind it, and do you think this is something that, in the future, could end up being the new way that prostate cancer is treated?

What is it about me that you think makes me a good candidate for this trial? What’s been your experience? – even though it’s more anecdotal, but it’s often nice to hear from a physician “I have patients on this trial, they’re having these types of side effects, they’re having these types of benefits, and we can’t know what will happen for you, but at least I have a sense of how things are going on this trial.”

Katherine:

Yeah, those are great questions. What about cost? Is that a question that patients should ask about?

Dr. Dorff:

Patients often do ask about that. Costs are really complex in this medical care landscape that we have in the United States. Clinical trials – I think there’s a lot of misunderstanding about costs. Some people think that everything is paid for by the clinical trial, which is not true.

There is a system by which we assign things that will be paid for by the clinical trial – anything that’s novel and only being done as part of the trial versus things that would be done anyway if you were not in the trial and if you were just receiving regular care, such as your PSA test, your clinic visit, your CAT scan potential, or your bone scan.

So, there are some costs that are not covered, and in that case, if a patient has an insurance plan where they have copays for a clinic visit or for a CAT scan, those aspects that are not felt to be unique to the clinical trial and are getting billed to standard insurance – that means they’re still going to have those copays, but anything that is unique, if there’s an extra set of scans, if there are extra clinic visits, those get billed to the study, and the patient should have no extra cost on that basis.

Insurance companies should view clinical trials very favorably, because they’re often getting some clinical care paid for. They’re getting extra treatment at no cost, so anything that’s new on the treatment plan in the clinical trial is free to the insurance company on the patient, it’s paid for by the study, so it’s a good deal, generally speaking, and more importantly, there’s legislation that really seeks to ensure that regardless of your insurance, you should have access to clinical trials because they are felt to be often the best way to have your cancer treated.

Katherine:

Yeah. Dr. Dorff, are there emerging therapies that are showing promise?

Dr. Dorff:

There are a lot of emerging therapies. People all over the country and all over the world are working to find new and better ways to treat prostate cancer. So, the breakthrough radiopharmaceutical last year of the Leutetium-177-PSMA is the first, but not the last, I believe, in that field. There are other antigens we can target rather than PSMA, there are other particles we can use rather then Lutetium-177, and so, there are currently clinical trials looking at different constructs.

Take a winning strategy, and then tweak it a little bit to see if you can make it even better, right? Similarly, the PARP inhibitors, which are FDA-approved for prostate cancer, are being studied in different types of clinical trials to try to expand the number of patients who can benefit from them and amplify the benefit – so, moving them earlier, increasing the types of patients who are appropriate.

And there are additional targeted therapies, like the PI3-kinase AKT inhibitors, the CDK-46 inhibitors, that are being looked at in combination with our standard hormonal drugs that I think could end up being big advances depending how the results play out. There’s a novel class of drugs, the antigen receptor degraders, which also look tremendously promising in clinical trials and are in Phase III testing in some cases, and then, some additional ones are a little earlier in testing.

And then, there’s immunotherapy, which is at the heart of my research at City of Hope. Immunotherapy offers the promise of using your own immune system to control the cancer or eradicate the cancer, so we’re looking at different strategies, from oncolytic viruses, to bi-specific T-cell-engaging antibodies, to CAR-T cell therapies in hopes that we will find something that can really induce a big, deep, durable, long-lasting remission for patients.

Katherine:

That’s really promising. What about treating symptoms of the disease itself, like bone pain?

Dr. Dorff:

Bone metastases are the predominant pattern of spread, and so, what really drives the story for a lot of our prostate cancer patients during their journey with cancer has to do with bone complications – not always pain, but unfortunately, there can be pain pretty frequently.

So, we start by trying to protect the bones early on. We know that when we use our hormonal therapies, osteoporosis can develop, so we want to avoid that. I’ve had patients where their cancer was well-controlled, but they had an osteoporosis fracture that they were miserable from, so it starts at the beginning, at protecting the bones, checking a bone density scan and/or using a bone-supportive agent like zoledronic acid (Zometa) or denosumab (Xgeva), and then, in the metastatic setting, as the disease progresses, we intensify that use of bone-supportive agents.

We sometimes end up using radiation therapy, which is primarily external-beam traditional kind of radiation, but there is also the radiopharmaceutical Radium-223 (Xofigo), which delivers the radiation kind of more internally through the bloodstream to areas of the bone that are active from the prostate cancer, and sometimes we end up needing something even like surgery, but the bones are a major part of the story.

Katherine:

Yeah. What about sexual dysfunction? Are there approaches that can help?

Dr. Dorff:

So, this is generally an area that’s managed more by urology. There definitely are things that urologists do to help patients who have lost sexual function due to prostate cancer treatments. They can involve medicines, they can involve slightly more invasive things like a suppository or an intracavernosal injection. There are also more mechanical ways, like a pump device or a penile implant, but generally, anything beyond the first level, which is Viagra, will be handled more by a urologist than a medical oncologist.

Katherine:

What is palliative care, and how can it help men with prostate cancer?

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer.

So, more and more, we’re starting to integrate palliative care earlier in the disease.

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along.

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors.

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components.

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well.

Katherine:

Yeah. Well, that leads us perfectly into the next section, which is about emotional support. Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team?

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals.

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important.

Katherine:

Many prostate cancer community members are interested in learning more about their cancer and are hungry for information. For men who are newly diagnosed, are there educational resources that you recommend?

Dr. Dorff:

There are several good patient-focused or patient-facing educational resources for cancers generally. So, the American Society of Clinical Oncology, or ASCO, runs a patient-facing website called Cancer.net.

They also produce a lot of educational materials. So, for instance, we have some handouts in our clinic rooms produced by ASCO that really just help patients understand, okay, when you’re having diarrhea related to cancer treatment, here are some strategies. So, there’s lots of good information from them. There’s also a group specific for prostate cancer called Prostate Cancer Foundation.

So, they are an organization that works a lot in funding new research in prostate cancer, but they also put out some really helpful publications, again, that are aimed at prostate cancer patients, and really kind of covering the whole spectrum of disease, as well as more holistic aspects which are really important, things like diet and exercise and how that plays into overall wellbeing and health during prostate cancer treatment. So, we keep some of those little booklets in our rooms as well to hand out to patients, but they’re probably available by request online as well on one of the Prostate Cancer Foundation websites.

Katherine:

Yeah. What about resources for prostate cancer patients who are already really knowledgeable about their disease and want to stay up to date on the latest research and treatment? What’s available for them?

Dr. Dorff:

There are some conferences that seek to educate patients on a little higher level. It can be challenging because not every prostate cancer patient is at the same place, but they can look for some of those conferences. Frankly, they can follow Twitter or some of the other social media.

Sometimes prostate cancer support groups also will bring in speakers who try to provide updates about emerging treatments, or where the research is going, or where the field is going. So, most big cancer centers are gonna have a support group.

Obviously, it’s very variable, and sometimes they may focus more on the psychosocial aspects, but I do think a lot of them will include people like me, who are just trying to connect with the cancer patients on various levels about the latest and greatest.

Katherine:

We received some audience questions prior to today’s webinar, and I’d like to go through some of them with you. Bob asks, “Does androgen deprivation therapy cause cognitive issues?”

Dr. Dorff:

So, androgen deprivation therapy is another way of saying hormone therapy. We’re lowering testosterone, which is an androgen, and the question about cognitive issues is a good one. If you look in the literature, it’s not been well documented, and part of that is because our patients tend to have age and other comorbidities that can lead to changes in cognition happening at the same time as they’re being treated for prostate cancer, but also because the tools just haven’t been very good.

The tests where we measure how your brain is working have traditionally not been very good. There are some better tools that have been developed, and we’re hoping to be able to – with some ongoing studies – better define are there cognitive changes? If so, how severe are they, how common are they, are they more common with one drug versus another? Very basic questions.

I will say in my own practice, after 15 years of treating prostate cancer, I do believe that some patients experience cognitive changes during ADT. They can be mild, like taking longer to remember someone’s name or walking into a room and forgetting why you’re there, which, frankly, happens to all of us when we’re not having our best days, but obviously, I do see that a little bit more with prostate cancer patients who are receiving hormonal therapy.

For some of my really high-functioning patients, it can be helpful to use a drug that treats attention because some of the cognitive dysfunction actually ends up being an issue with attention. So, we use drugs like methylphenidate (Ritalin) or dextroamphetamine mixed salts (Adderall) to support patients who need to be really focused, and I’ve had many patients tell me that that has made a huge difference for them, so it’s not going to solve the overall changes that may happen in the brain on the basis of the hormonal deprivation, which we know happens from animal models, but it can help in the short term so that men can continue to function at a high cognitive level, despite ADT, when needed.

Katherine:

Yeah. George wants to know, “Are there any advances in imaging that patients should know about?”

Dr. Dorff:

Yes. So, the PSMA PET scans – so, these are a nuclear medicine imaging that looks for prostate cancer using a protein called PSMA, and there are several of them, there’s the F-18-based one called Pylarify, and then there are the Gallium-68 versions, Illuccix and Locametz, so those have been revolutionary. They can see prostate cancer in much smaller quantities, so we use them a lot for rising PSA after prostate surgery or radiation to see where is his small amount of cancer, and hopefully, we can treat it better by seeing it earlier.

They are also now being used to select patients for potential benefit from a treatment like Lutetium-177-PSMA, which obviously won’t work if the cancer doesn’t have that protein, so the imaging helps see who’s got the protein, who can benefit from the treatment. So, that’s the biggest imaging advance. There are some others, like using MRI fused to ultrasound for prostate biopsy at diagnosis. There’s also another kind of PET scan called a fluciclovine PET scan, which we still sometimes use because not 100 percent of prostate cancers have PSMAs, so sometimes we need something a little bit different.

Katherine:

Antonio had this question. “I heard that statins – cholesterol-lowering drugs – could help fight prostate cancer. Is that true?”

Dr. Dorff:

There’s been a lot of interest in the statins because in addition to having those positive effects against cholesterol, which are helpful when hormonal therapy that we use for prostate cancer disrupts our lipids, they have these anti-inflammatory properties that are being looked at in a number of different research avenues.

And then, there has also been a new, evolving understanding that they interfere with some hormone-binding compounds in the body, and so, could augment the effect of androgen deprivation therapy.

So, there has been interest in prospective studies because the literature we have right now is really retrospective, so we can’t really tell a patient which statin drug or what dose and for how long would be associated with a positive benefit, and we don’t really yet know how to use them proactively during someone’s treatment, but I will say if you’re starting on hormone therapy or ADT, having your lipids checked and getting on a statin if your lipids are not in a good range is really important anyway to just protect your cardiovascular health, and then, maybe we’ll find out that it does actually help your prostate cancer treatment be more successful as well, but I would say those data still need to be fleshed out a bit more.

Katherine:

Thank you for those answers, Dr. Dorff. I appreciate it. And please continue to send your questions to question@powerfulpatients.org, and we’ll work to get them answered on future programs. As we close out our conversation, Dr. Dorff, I wanted to get your thoughts on where we stand with research progress. Can patients truly thrive with advanced prostate cancer?

Dr. Dorff:

Absolutely. I would say in the 15 years I’ve been treating prostate cancer, I’ve really seen a transformation from a disease with a short lifespan and a lot of symptoms to a disease where people can actually thrive, living more than a decade even with advanced or metastatic prostate cancer, because the treatments have gotten so much better, and I think also potentially due to the increased awareness on the part of physicians about helping people stay healthy during their longer-term treatment. So, definitely, my patients today live longer and better than my patients did when I started treating prostate cancer.

Katherine:

Well, it seems like there’s a lot of progress and hope, then, for prostate cancer patients.

Dr. Dorff:

Absolutely.

Katherine:

Thank you so much for joining us today, Dr. Dorff. I really appreciate it.

Dr. Dorff:

Thank you. I hope people found it helpful.

Katherine:

And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

A Look at Lower Intensity Chemotherapy in Untreated AML

A Look at Lower Intensity Chemotherapy in Untreated AML from Patient Empowerment Network on Vimeo.

Dr. Naval Daver from the University of Texas MD Anderson Cancer Center discusses whether untreated acute myeloid leukemia (AML) can be treated with lower intensity chemotherapy.

[ACT]IVATION TIP from Dr. Daver: “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

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Transcript: 

Art:

Dr. Daver, what are we learning about patients with untreated AML who are ineligible for intensive chemotherapy? Will intensive chemotherapy, a thing of the past, in the near future?

Dr. Naval Daver:

There has been a major shift over the last four or five years towards using lower intensity combinations, such as azacitidine (Onureg or Vidaza) and venetoclax (Venclexta) and patients who are definitely about 75 and not fit for intensive induction. I don’t think anybody debates in that population, but even in patients 60 to 75 years away, you are borderline, and maybe we could give intensive induction chemotherapy and get patients to through it with support of care, antifungals, antibiotics by close monitoring, but we’re seeing similar remission rates with azacitidine (Vidaza), venetoclax (Venclexta), much less toxicity, less mortality, and especially the goal is to get a number of these patients to allogeneic stem cell transplant, which it is.

Then we feel that the lower intensity, better tolerated, smoother remission getting patients in a good condition an allogeneic transplant may be the way to go now, of course, to really make the standard of care, we have to look at this in a randomized fashion to make sure that what we believe is actually what the data is going to confirm, so there is an ongoing randomized study looking at the azacitidine and venetoclax intensity versus the traditional intensive chemotherapy called three plus seven in patients 18 to 65 years of age, and that…then you will, I think, give us a lot of information and data as for whether we can start for placing intensive chemotherapy for a large proportion or majority of AML patients, even those who are younger.

Today, I don’t think that in terms of chemotherapies are a thing of the past, I think those patients who are below 60 or even those who are 60 to 65, who are routinely doing intensive induction chemotherapy, one has to realize that the five-year survival for many molecular subsets are close to 50 to 60 percent with intensive induction chemotherapy, whereas with HMA venetoclax in the older unit, we’re looking at three to five-year survival rates of about 30 percent, so we have still not seen data and younger patients with Hamas to be convinced that this will replace intensive chemotherapy altogether, I think the signal suggests that there is a potential for it to do so, especially with the use of allergenic tensor as plan, which we’re using quite frequently and…or maintenance.

But that has not yet been established. So I would still say we do use intensive chemo in those who are young and fit, so my activation tip for this is that there has been a lot of progress in the lower intensity therapies over the last six or seven years. 

A decade ago would not even be asking whether there’s anything that can replace intensive chemo today we do have data with HMA venetoclax that suggest that it may be as good as intensive chemo looking at the response rates MRD negativity, and especially with three drug combinations where adding targeted therapies to HMA venetoclax, those response rates and depth of response looking as good, if not better, than intensive chemo there are randomized studies ongoing that are going to be looking at intensive chemotherapy versus HMA venetoclax and if those show equivalents or superiority for HMA venetoclax, I think in the next five, six years there will be a huge shift towards less use of intense and chemotherapy in the frontline setting, but we’re not there yet. 

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What Different AML Subtypes Are More Prevalent in Certain Demographics?

What Different AML Subtypes Are More Prevalent in Certain Demographics? from Patient Empowerment Network on Vimeo.

Are some acute myeloid leukemia (AML) subtypes more common in some demographic groups? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center discusses different forms of AML. Learn about the extent of knowledge about AML subtype demographics.

[ACT]IVATION TIP from Dr. Daver: “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.

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Transcript: 

Art:

Dr. Daver, what are the different subtypes of AML, are various subtypes more prevalent in certain demographics?

Dr. Naval Daver:

The main way we have classified AML has actually been changing, so when we talk about subtypes  there are actually two different classification systems like WHO and the ICC or ELM classification system. Traditionally, we have been using the ELM for prognostic classification of AML, this divides patients into three major buckets, what we call a favorable intermediate and adverse, and these are based on the underlying chromosome cytogenetics abnormalities and molecular or next-generation sequencing profile of the patients.

In general, in AML there has actually been limited data and publications regarding the demographic distribution, whether it’s regional or racial or cultural, one of the things that we do know, for example, in acute lymphoblastic leukemia is that in the Hispanic population, there seems to be higher frequency of things like FLT3-positive ALL. 

But in the AML population, there actually does not seem to be, at least based on published data, huge differences in the molecular or cytogenetic presentation. We have seen some data from different countries that there may be a difference in the prevalence of communications across different regions. For example, in Japan, we do see that the incidence of FLT3 and NPM1 appears to be lower than what has been reported in the United States.

Also, we see in Europe and United States, the incidence of these mutations with FLT3, NPM1 is similar, and then we are seeing in some of the larger academic centers in the U.S., there is an enrichment of referral of patients with TP53, which is very adverse and most difficult to treat mutation, and a lot of that we think is because patients with solid tumors and with other hematological malignancies are surviving longer with the CAR-T therapies, immunotherapies, and because it is over time, they have a risk of developing second AML, which is enriched for TP53 mutation, so we do see over the last two decades that from TP53, which used to be about 5 percent to 10 percent, is now up to 20 percent to 25 percent of AML and growing in proportion because it’s better survival and solid tumors and lymphomas.  

The activation tip related to this question is that in general, they don’t review discrepancies based on geography and race, and region in the molecular cytogenetics. However, we do see differences in patients who have received prior chemotherapy, radiation therapy, AML therapy for other solid tumors and lymphoma.

These patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers. 

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What Promising AML Treatments Are Available for Newly Diagnosed Patients?

What Promising AML Treatments Are Available for Newly Diagnosed Patients? from Patient Empowerment Network on Vimeo.

What do newly diagnosed acute myeloid leukemia (AML) patients have for promising treatment options? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center discusses progress in available treatments. Learn about therapies determined by key factors.

[ACT]IVATION TIP from Dr. Daver: “It’s very important to really consider all the available treatment options and if needed to seek consultation with an expert or academic center to get the most up-to-date treatments available for AML.

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Transcript: 

Art:

Dr. Daver, for newly diagnosed AML patients, what are the latest and most promising available therapies?

Dr. Daver:

For newly diagnosed AML at this time, the most promising agents include targeted therapies and BCL-2 inhibitor treatments, these are non-chemotherapeutic drugs, and we’ve seen great progress in the application of these as well as recent FDA approvals.

So one of these is an agent called venetoclax (Venclexta), which is a BCL-2 inhibitor and venetoclax in combination with hypomethylating agents such as azacitidine (Onureg or Vidaza) has shown a response to close to 75 percent. 

And the nice thing is that this regimen can be given and patients who are older than 70, 75 years of age, and even those who are having comorbidities are not fit for traditional intensive chemotherapy with similar response rates, so this has been approved in the last couple of years for the frontline treatment of AML, and we’ve been using this combination of venetoclax and azacitidine quite frequently with high efficacy in this patient population, the other new agents that have shown breakthroughs in AML are the targeted therapies, these include FLT3 inhibitors that target the FLT3 mutation and these have shown good activity, but the single agents with gilteritinib (Xospata) being approved in the relapsed refractory setting as a single agent where gilteritinib showed a response rate of about 50 percent as a single oral targeted therapy in relapsed FLT3-mutated AML, which is actually better than the response rate with high-dose combination more where the response rate is only about 25 to 30 percent.

So, gilteritinib is now approved, and it’s now moving and being evaluated in frontline setting other FLT3 inhibitors like lestaurtinib (CEP-701), actually just recently completed frontline studies showing improved outcome when lestaurtinib added to intensive chemo versus just intensive chemo in FLT3 in AML. And we hope and think there’s a good chance lestaurtinib will be approved in the near future.

And also IDH inhibitors have been approved both in the relapsed setting, frontline setting, and now we even have a third group of targeted therapy is called the menin inhibitors, they target MLL rearrangement and NPM1 mutations, which are seen in about 15 percent to 20 percent of the AML, so there’s been a lot of progress.

All of this in the last seven years, six, seven years with multiple targeted therapies, with multiple inhibitor-based treatments, showing progress in AML and then also recently, the concept of maintenance therapy, this is something we used for the last couple of decades in a acute lymphoblastic leukemia and multiple myeloma and in lymphoma.

But we had not had clear data in AML, but the recent study using oral formulation of a azacitidine in CC486 has shown the maintenance in patients who complete an induction consolidation and could not go to allogeneic stem cell transplant for one reason or the other was important and improve both overall survival and relapse-free survival, and so this is the first time now we have an FDA-approved and standard use of maintenance therapy after the traditional induction consolidation, so even changing the general paradigm of AML therapy.

So a lot has changed in the last seven to eight years in the treatment of acute myeloid leukemia, and this is very exciting.

And the activation tip related, this question is that there are multiple new targeted and low intensity therapeutic options available for patients with acute myeloid leukemia, and in our institution, in my opinion, even older patients are eligible for some form of therapy or the other…very few patients, if any, today, are being sent to hospitals or palliative care without treatment.

So it’s very important to really consider all the available treatment options and if needed to seek consultation with an expert or academic center to get the most up-to-date treatments available for AML. 

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Long-Term Effects Acute Myeloid Leukemia Patients Should Know

Long-Term Effects Acute Myeloid Leukemia Patients Should Know from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) need to know about potential long-term effects of treatment? Dr. Catherine Lai from Penn Medicine shares insight. Learn about medical considerations for monitoring and an activation tip to help patients ensure their optimal health for the long term.

[ACT]IVATION TIP from Dr. Lai: Make sure that you’re reporting all your symptoms, however small that they may be at your appointment, so it can be discussed in asking if it might be related to a late effect, and then also asking if there is a survivorship clinic or a program that you can be a part of.”

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Transcript: 

Art:

Dr. Lai, I was diagnosed with lots more than 20 years after my transplant, and there are the long-term effects that AML patients should be aware of. What are some of those effects?

Dr. Catherine Lai:

Yeah, so that’s an extremely important question and one that is often, often overlooked, unfortunately, even just from a time constraint perspective, but I would say it depends on the type of chemotherapy and the type of transplant, whether it was myeloablative you received radiation before your transplant, but, in general, I mean things to consider or just think about, it’s a big work, and so about your heart, your lungs, your thyroid, your kidneys, and also age-appropriate cancer screening as all things that need to be taken into consideration as late effects, if you are able to…if you’re able to find a cancer center with a survivorship clinic, I think that that’s an extremely valuable resource, because not only are they able to address these medical issues, but they’re also able to address the psychosocial component as well, and just overall general well-being.

And so I think just being aware of the fact that there are late effects and the activation tip being, is that to make sure that you’re reporting all your symptoms, however small that they may be at your appointment, so it can be discussed in asking if it might be related to a late effect, and then also asking if there is a survivorship clinic or a program that you can be a part of.  

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What Are the ASH 2022 Takeaways for AML Patients?

What Are the ASH 2022 Takeaways for AML Patients? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about ASH 2022 updates? Dr. Catherine Lai from Penn Medicine discusses updates presented at the conference. Learn about combination treatments and a study that examined the use of chemotherapy before transplant. 

[ACT]IVATION TIP from Dr. Lai: “There are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.”

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Transcript: 

Art:

Dr. Lai, I had a transplant almost 30 years ago for relapsed AML and was not given intensive chemotherapy to get me into remission before the transplant. What are the takeaways from the ASH 2022 meeting? Is less more when treating AML?

Dr. Catherine Lai:

Sorry, that’s a great question, and what I just like to say that it’s so great that you are doing so well, so many years after, as you know, transplant is the original form of immunotherapy and is still the only potential cure for AML. And so with that being said, with at ASH what was seen was, I think a handful of things, so what I would say is that different combinations of drugs being used, so things looking at either at novel doubles and or triplets. Meaning combinations of two or three different drugs and how toxicity is affected, there are other also novel immunotherapies that are out there, not have been as groundbreaking as transplant, and I think that there is some way to harness the immune system to make treatment more effective, we just haven’t found that. Right, chemotherapy.

And then specifically, there was a large study, a large European study that was presented as the plenary session at ASH that talked about the role of chemotherapy before transplant. And what I would say, just speaking in general, is that the new immune system that a patient gets when they get a transplant takes…the new immune system, when a patient gets a transplant, it takes some time to take over, and that new immune system is able to fight off the leukemia, and so if a patient has a slow-growing leukemia, they might not need as much chemotherapy before the transplant, because the rate at which the leukemia will grow and won’t overburden the body before the new immune system takes over.

So I think that study was very provocative and gave some insight, but I still don’t think we have the complete right answer as to what chemotherapy should be used before transplant, I think that’s really tailored to each individual patient.

And then whether or not patients need chemotherapy after transplant also depends on disease burden and status, and taking into account measurable residual disease as well. So I would say the activation tip from the ASH 2022 meeting was that there are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.

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What Is FLT3-Mutated Acute Myeloid Leukemia?

What Is FLT3-Mutated Acute Myeloid Leukemia? from Patient Empowerment Network on Vimeo.

Some acute myeloid leukemia (AML) patients may have an FLT3 mutation. Dr. Catherine Lai from Penn Medicine shares insight about the two types of FLT3 mutation, treatment options for FLT3-mutated AML, and progress in research

[ACT]IVATION TIP from Dr. Lai: Ask your oncologist, if your FLT3 mutation testing was done, ask which type of mutation they have, if it’s the ITD or TKD, if they are FLT3-positive and what the drug options are available for them.”

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Transcript: 

Art: 

Dr. Lai, what is FLT3 mutated AML and what treatment options do patients with FLT3 AML have?

Dr. Catherine Lai: 

Yeah, so FLT3, FLT3 mutations occur in about 25 percent to 30 percent of patients. There are two different types of FLT3 mutations. There’s a FLT3, the ITD mutation and the FLT3, the TKD mutation. They just are there, different parts of the mutation on different parts of the cell, and so how I think about that is, if you think of a leukemia cell and each leukemias has a different color-coded flag, and so the FLT3 mutation I think of is just having a specific color coding, and while a FLT3 mutation in general does predict for a worse prognosis for patients, we do have targeted treatments. In a newly diagnosed setting, we have midostaurin (Rydapt), which is added to intensive chemotherapy for those fit enough to tolerate it. 

And in the relapsed refractory setting, we have a medication called gilteritinib (Xospata), which is given as a single agent, so a chemo pill, and that was compared to all types of chemotherapy, both intensive and low intensive chemotherapy, and that pill alone and the refractory and relapsed setting was better than either of the chemotherapies alone, so we’ve made a lot of progress for the FLT3-mutated patients to the majority of those patients end up going to transplant if possible, and so there are studies that are looking at FLT3 inhibitors in the post-transplant setting to also help improve long-term survival and overall survival. So the activation tip from that standpoint, that is to ask your oncologist, if your FLT3 mutation testing was done, ask which type of mutation they have, if it’s the ITD or TKD, if they are FLT3-positive and what the drug options are available for them. 

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How Can You Access Personalized Medicine for Non-Small Cell Lung Cancer?

How Can You Access Personalized Medicine for Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

What is the right therapy for your non-small cell lung cancer? This animated video reviews treatment decision considerations, the importance of biomarker testing, and steps to engage in your non-small cell lung cancer care.

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Transcript:

No two people with lung cancer are the same, so finding the right treatment for each patient is critical.  

While receiving a non-small cell lung cancer diagnosis and choosing a therapy can be overwhelming, advancements in research are providing more options and more hope than ever. 

So, what should be considered when making a treatment decision? Physicians may consider factors such as: 

  • A patient’s age, overall health and any pre-existing conditions they have. 
  • As well as their type and stage of lung cancer. 
  • And their test results, including biomarker testing. 

Biomarker testing, also referred to as molecular testing, identifies key markers such as genes, proteins, or other molecules in a sample of tissue, blood, or other body fluid. Understanding the genetic makeup of the lung cancer helps your team better understand your disease and may influence treatment options – leading to more personalized care.  

For example, if the PD-L1 receptor is detected during biomarker testing, the patient may benefit from immunotherapy. Additionally, identification of an ALK mutation or an EGFR mutation may indicate that a patient will respond to a targeted therapy. 

So, how can you access personalized medicine? You can start by talking with your doctor about biomarker testing and ask if your cancer has been tested for all known biomarkers. Request to review the test results together and ask if there are any markers that affect your risk, prognosis, or treatment options.  

Before you choose a therapy, weigh the pros and cons of each option with your doctor. Ask about side effects and if any of your existing health conditions may impact your therapy choice. You should also discuss your treatment choices with a care partner, such as a friend or loved one – someone you trust.  

So, How Can You Take Action? 

  • Ask your doctor if you have had, or will receive, all essential testing, including biomarker testing. 
  • Seek a lung cancer specialist to guide your care. A second opinion consultation with a specialist can confirm your diagnosis and treatment approach. 
  • Partner with your doctor to determine a personalized treatment approach for YOUR lung cancer. 
  • Bring a friend or a loved one to your appointments to help you process and recall information. 
  • And finally, always speak up and ask questions. Remember, you have a voice in YOUR lung cancer care. 
  • To learn more about your non-small cell lung cancer and to access tools for self-advocacy, visit powerfulpatients.org/lungcancer.  

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

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

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

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

Katherine:

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

Dr. Chandra:

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

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

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

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

Katherine:

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

Dr. Chandra:

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

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

Advice for Accessing Financial Resources for Lung Cancer Care

Advice for Accessing Financial Resources for Lung Cancer Care from Patient Empowerment Network on Vimeo.

Is there financial assistance available for lung cancer patients? Lung cancer expert Dr. Jyoti Patel shares support resources and tips to help reduce the financial burden of treatment.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Related Resources:

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

Why Lung Cancer Patient Advocacy Is Essential

Personalized Medicine: Making Lung Cancer Treatment Decisions


Transcript:

Katherine:

Dr. Patel, we’d be remiss if we didn’t bring up financial concerns.  

Treatment and regular appointments can become quite expensive. So, understanding that everyone’s situation is different, where can patients turn to if they need resources for financial support?  

Dr. Patel:

When your team first talks to you about therapies, it’s important that they have transparency about what something may cost or the risks that you may incur by starting treatment. However, most of us have access to wonderful financial teams and financial counselors that can help you manage this.  

Many of our industry partners and friends are able to have assistance programs to provide oral drugs at discounted rates or to work, again, with organizations in which you may be able to have reduced rates for many of your drugs. Most of the infusional drugs, again, should be covered by insurance. But outside of drug costs, there are a lot of other costs.  

So, parking every time you come for a doctor’s appointment. Time off from work. Time that you’re hiring a babysitter to take care of your children when you’re at treatment. All of those add up. And so, again, perhaps talking to the social worker at your cancer center or talking to the financial counselor, there are often local programs that can help ease some of those burdens.