Tag Archive for: bruising
Empowering Providers to Enhance CLL Patient Care
Empowering patients is at the core of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for chronic lymphocytic leukemia (CLL), the Empowering CLL Providers to Empower Patients (EPEP) initiative. The program multiplies PEN’s reach to healthcare professionals with the aim to improve physician-patient communication; shared decision-making; and the role that CLL patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.
The EPEP CLL initiative includes the following resources:
- Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
- EPEP Roundtables with CLL experts Dr. Jennifer Brown, Dr. Callie Coombs, Dr. Daniel Ermann, and Dr. Andres Chang as they discuss a range of topics including how to help your CLL patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the CLL health care team, and ins and outs of clinical trials and communication about clinical trials.
- EPEP Resources includes the resource guide, infographics, blog, and other resources to improve patient care.
- EPEP Peer Insights with PEN’s Vice President of Programs Aïcha Diallo breaks down the differences between cultural competence versus cultural humility and barriers that HCPs may encounter and ways to overcome cultural humility barriers.
- EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.
Key Takeaways for CLL Patient Care
PEN had the opportunity to interview CLL experts Dr. Jennifer Brown from Dana-Farber Cancer Institute, Dr. Callie Coombs from the University of California, Irvine, Dr. Daniel Ermann from Huntsman Cancer Institute, and Dr. Andres Chang from Emory University School of Medicine to learn about some of their expertise. They shared their views about essential ways that they work with patients to help empower them and to educate them about CLL mutations and side effect management.
A team-based approach is the ideal model for taking optimal care of CLL patients. Dr. Callie Coombs stressed the key roles that pharmacists, oncology nurses, and nurse practitioners play in CLL patient care. “…I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these if perhaps I missed it or didn’t ask the patient about a supplement, et cetera.”
The advances in CLL treatment have expanded tremendously over the past several years leading to refined treatments. Expert Dr. Callie Coombs shared her perspective about how patient care has changed. “…CLL is a chronic disease that affects our primarily elderly patients, and so it’s a marathon, not a sprint. However, with all of the advances that we’ve had in excellent drug therapies, despite these resistance mutations, patients can attain many, many, many years of high quality of life. But it’s incumbent upon us as their providers to help ensure that quality of life through effective management of side effects that may be encountered over the course of their time on therapy for the patients that do need therapy.”
Switching treatments can be an effective method for resolving side effects in some patients. Dr. Callie Coombs discussed some changes she’s seen in some of her patients. “…I’ve had patients with chronic long-standing toxicities to ibrutinib (Imbruvica) that perhaps went underrecognized where I say, ‘Hey, I’ve notice your blood pressure has gone up a lot…Let’s switch you over to acalabrutinib,” or other patients, “Oh, you’ve had issues with atrial fibrillation…let’s try switching you to zanubrutinib.’..Because the rates are a lot lower and a lot of patients can have improvement or just complete resolution of the prior side effect. And so I hope that that emphasizes this is something that we think about every day, and switching is appropriate in the setting of intolerance.”
CLL Mutations and Side Effect Management
Although CLL is not defined by any specific mutation, CLL care providers see a large number of different mutations at low percentages. Dr. Jennifer Brown discussed how mutations can come into play with CLL treatment. “So at baseline, the most common mutations, which are somewhere in the 10 to 20 percent range of patients, although less than that if you have very early stage patients, affect the p53 gene, NOTCH1, SF3B1, and ATM. P53 is the most important because that one does influence our thinking about the patients and our choice of therapy in some cases.”
TP53 aberrations are especially vital in relation to chemotherapy. Dr. Callie Coombs explained the impact of these specific mutations. “…when patients have TP53 aberrations, whether that’s 17P or a TP53 mutation or both, given that they can occur in isolation or together, these patients should never get chemotherapy, because they have extremely terrible responses to chemo, and that should not be part of the therapies offered to these patients.”
Warning CLL patients ahead of time about common treatment side effects is recommended to help prepare them for treatment. Dr. Jennifer Brown explained some common side effects with her patients. “…headaches often happen early on when you initiate acalabrutinib (Calquence) but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient…With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this.”
Dose adjustments to CLL treatment may prove to be a highly effective method of side effect management for some patients. Dr. Daniel Ermann shared his perspective about dose adjustments. “…I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.”
Dr. Andres Chang also shared his perspective on dose escalation and dose reduction in CLL patient care. “…whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.”
Even though CLL treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion in empowering CLL patients. How do we improve care of patients? And how do we work with dose adjustments and side effect management in patient care? We hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward optimal and equitable treatment for all CLL patients.
HCP Roundtable: Fine-Tuning CLL Dose Modification and Side Effect Management Strategies
HCP Roundtable: Fine-Tuning CLL Dose Modification and Side Effect Management Strategies from Patient Empowerment Network on Vimeo.
What is the rationale and evidence behind dose optimization approaches in CLL treatment? What role does patient education play in recognizing and managing CLL treatment-related side effects? Dr. Andres Chang of Emory Healthcare and Dr. Daniel Ermann of Huntsman Cancer Institute discuss optimizing CLL care and the importance of empowering your CLL patients during their treatment journey.
Download Resource Guide | Descargar guía de recursos
Related Resources:
How Can CLL HCPs Gain More Understanding of Mutation Profiles? |
CLL Expert Updates on Diagnostic Tool and Technology Advances |
|
Transcript:
Dr. Nicole Rochester:
Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m your host, Dr. Nicole Rochester. EPEP is a Patient Empowerment Network program that serves as a secure space for health care providers to learn techniques for improving physician-patient communication and overcome practice barriers. In this CLL roundtable, we are exploring fine-tuning CLL dose modification and side effect management strategies.
As the chronic lymphocytic leukemia treatment landscape evolves, we’re going to talk about the rationale and evidence behind dose optimization approaches in CLL treatment for those who may need therapy. We’ll also discuss strategies for dose modifications to mitigate adverse events while maintaining treatment efficacy, as well as approaches that are transforming CLL side effect management.
It is my honor and privilege to be joined by Dr. Andres Chang, Instructor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Dr. Chang specializes in treating patients with hematological malignancies including leukemia and lymphoma. Thank you so much for joining us, Dr. Chang.
Dr. Andres Chang:
Thank you so much for having me.
Dr. Nicole Rochester:
It is also my pleasure to be joined by Dr. Daniel Ermann, Assistant Professor in the Division of Hematology and Hematologic Malignancies at the Huntsman Cancer Institute. Dr. Ermann specializes in the treatment of patients with chronic lymphocytic leukemia and other forms of Hodgkin’s and non-Hodgkin’s lymphoma, and he is passionate about working towards a cure. Thank you so much for joining us, Dr. Ermann.
Dr. Daniel Ermann:
Great to be here. Thank you so much for having me.
Dr. Nicole Rochester:
So let’s start the conversation with dose modification, and I’m going to start with you, Dr. Chang. As the treatment landscape evolves for CLL, for some patient populations that need therapy, what is the rationale and evidence behind both dose escalation and dose reduction?
Dr. Andres Chang:
Well, so I think that the question of whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.
In all of these patients and in all of these cases, we do take into account the patient’s comorbidities. In the case of venetoclax, for instance, we think of whether patients have kidney dysfunction, and in the case of BTK inhibitors whether they have concomitant heart disease, hypertension, whether they are on anticoagulation, and also we take into account what other medications they have, in particular whether they have medications that affect their cytochrome P450 system.
Dr. Nicole Rochester:
Awesome. Thank you so much, Dr. Chang. Is there anything specific that you think healthcare providers need to know with regard to dose escalation and dose reduction?
Dr. Andres Chang:
So dose escalation in terms of venetoclax initiation is, we already have a pretty well-established protocol that is on the label of the medication, and this is really mainly to mitigate the risk of tumor lysis syndrome. And in terms of dose reduction, I think it really depends again on which therapy we are talking about and also on which particular side effect we’re talking about. And so I really encourage all the providers to really inquire and look into what potential side effects the patient might have so that you can adequately address this, because each side effect can be addressed or should be addressed with a different kind of strategy.
Dr. Nicole Rochester:
Wonderful. Thank you, Dr. Chang. Dr. Ermann, I’m going to come to you. How do CLL healthcare providers better understand dosing, particularly with the emergence of novel CLL therapies?
Dr. Daniel Ermann:
Yeah. Thank you so much for the question. So I think nowadays, most of us in the CLL community, we’re really no longer using chemotherapy. We’re using, like Dr. Chang said, we’re sticking to these novel agents, BCL-2 inhibitors, BTK inhibitors in the frontline setting. All of these medications have been studied to the optimal dose in their respective trials. And for the most part, we start every patient, except for the venetoclax ramp-up, we start all patients at the optimal dose for what we think for them is the maximum tolerated dose in the studies, which is the dose seen in the FDA package inserts and the recommended starting dose.
So I think for most patients, generally we start at what dose that is recommended. And then the only time we really begin to dose-reduce is as Dr. Chang mentioned, if we’re seeing side effects or intolerance. So these are things that I always start looking at very early when I start patients on treatments. I check in with my patients within the first two weeks of them starting a BTK inhibitor. And then during the venetoclax ramp-up with BCL-2 inhibitors, I keep a very close eye on them.
So I think though these novel therapies are extremely effective at treating CLL, they do come with some toxicities. And it’s important to be aware of the toxicities, to keep an eye on the patients when you start them and know what the dose reductions are and how to effectively manage them.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. And I just want to acknowledge and thank both of you for highlighting the importance of partnering with patients, particularly in an Empowering Providers to Empower Patients program. We understand that this is a partnership between the healthcare providers and the patients. And so I appreciate both of you really highlighting the importance of engaging with the patients and then making necessary adjustments.
So, Dr. Chang, can you speak to any unforeseen or outdated practice-related barriers that may actually hinder your work and that of your colleagues as it relates to understanding CLL dosing?
Dr. Andres Chang:
Yeah, even though most of us in the CLL community have already moved to these novel targeted therapies, we do occasionally still see patients are referred to our centers who have undergone frontline chemo-immunotherapy, which for the vast majority of the patients nowadays, there really shouldn’t be an indication for that sort of treatment anymore. And so I think one of the main limitations is that we are using or at least some providers are using frontline chemo-immunotherapy and by doing so, they negate the great benefits that these novel targeted therapies have, particularly again in frontline setting.
Other unforeseen or outdated practices might be related to how patients, how we optimally mitigate the tumor lysis risks. And also occasionally, we might see some referrals from community practice physicians with patients who have CLL, and they have recurrent cytopenias or persistent cytopenias while in therapy, and they attribute it to toxicity of the therapy. Where in reality, if you do a bone marrow biopsy, they might be having a lot in the bone marrow, and that might be the answer for this particular so-called toxicity, but in reality it’s actually disease progression.
Dr. Nicole Rochester:
Thank you, Dr. Chang. So, Dr. Ermann, based on what Dr. Chang just shared and some of these, sounds like maybe knowledge or practice gaps, what are some solutions? How can we begin to bridge these gaps so that patients are receiving the best of the best with regard to therapy?
Dr. Daniel Ermann:
So there’s a little bit of, I would say that there can be a little bit of delay in certain providers changing their practice to the current academic approach. I think that from what I’ve seen, the best way to manage it is when patients are seen in the community by providers, I personally have quite a good relationship with many community providers in the community setting. And I encourage those providers if they get a new patient diagnosed with CLL, to recommend a CLL consultation.
And I would advocate that the patients also look into their disease and see whether or not a CLL consultation with an expert in the field of lymphoma or CLL may be good for them. And in those ways I’ve seen, personally I co-manage many patients across the Western United States. They’re still able to be seen by their local oncologist and also be seen for consideration of clinical trials in the CLL space when indicated for their more rare disease.
So I do think it comes from both providers and patients, but I think empowering your patients, letting them know that there are other doctors who may specialize in a condition that they have is really important. And when patients do that, not only are they happy, their local oncologist is happy. It makes it kind of better for everyone.
Dr. Nicole Rochester:
Absolutely. Thank you, Dr. Ermann. I love that idea of a team-based approach. Thank you so much. Well, let’s move into talking about side effects. And you all have already alluded to the importance of dose modification with regard to side effects and minimizing toxicity. So I’m going to go to you, Dr. Ermann. What techniques do you use in your practice for optimizing treatment efficacy while minimizing toxicity? And feel free, if you’d like, to share a specific example.
Dr. Daniel Ermann:
Yeah. Great question. So in CLL, there are a lot of unique toxicities with our CLL-directed therapies. I’ll take, for example, BTK inhibitors. So BTK inhibitors have certain off-target effects. The way these medications work is they turn off BTK, and that’s like flipping a switch that decreases the growth of the CLL cells and eventually causes them to die. However, some of the unique toxicities we see are things like atrial fibrillation, bleeding, bruising, infections, to name a few.
So, for example, you would like to start a patient optimally on the maximum dose, which is the kind of recommended starting dose. However, let’s say a patient gets a side effect such as bleeding or atrial fibrillation, I usually will follow the package insert pretty closely. In most cases, the recommended management is to hold the drug until a side effect resolves and then resume at the same dose. In my practice, I found that with many of our novel therapies, there are some cases where you can continue the same dose, but oftentimes you’ll need to dose-reduce.
And I will say from my personal experience, I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. What about you, Dr. Chang? How do you approach dose adjustments for CLL patients, particularly those who may be experiencing severe side effects? And what factors influence your decision-making process?
Dr. Andres Chang:
Yeah, so first of all, I agree with Dr. Ermann that I think trying to mitigate side effects and oftentimes following the package insert is really, really helpful. One of the things that I want to add, though, is I do spend quite a bit of time before starting any medication, educating patients and trying to teach them about what potential side effects, what to look for. And importantly, if there are mechanisms to mitigate or prevent those side effects, I will spend quite a bit of time talking about that. And these can be things such as taking caffeine to prevent an acalabrutinib-induced (Calquence) headaches, for example, maintaining adequate fluid intake and hydration to minimize the risk of tumor lysis, and so forth.
I find that by spending that time with patients ahead of starting therapy, that oftentimes it allows patients to identify the side effect and also start addressing it even before needing to come back to the clinic. My team, in addition to myself, also spends quite a bit of time, and we perform phone calls, follow-up phone calls, and things like that, that are conducted by my pharmacist or by my nurse. And together, I find that oftentimes just by talking through these potential issues, patients will feel a lot better.
Now, depending on how severe an adverse event is, or a side effect is, I tend to potentially dose-reduce somewhat quicker. Or if there’s an alternative, like in the case of BTK inhibitors, I will be a little bit more prone to switching from one BTK inhibitor to another, because there is data suggesting that if you don’t tolerate one BTK inhibitor, you can tolerate a second one.
And that’s particularly true if we are seeing some of these side effects that arise in the long term, particularly with ibrutinib (Imbruvica), and switching them to acalabrutinib or zanubrutinib (Brukinsa), oftentimes resolve those kinds of side effects. And I’ve seen that particularly true in cases where I see hypertension induced by ibrutinib (Imbruvica). I have a couple of patients where they are four or five years into ibrutinib therapy, came in with uncontrolled hypertension, I switched them to another BTK inhibitor, and the hypertension gets better controlled.
Dr. Nicole Rochester:
Thank you, Dr. Chang. I just really appreciate again how both of you are continuing to highlight the importance of a multidisciplinary team. So the importance of involving the patients, educating the patients, both ahead of time and as you’re beginning treatment. And also, you mentioned bringing in the pharmacists and bringing in your nurses and all of the other members of the support team. So I really, I really appreciate that. And speaking of patient education, Dr. Ermann, I’d love for you to share if you can have any ideas around the role that patient education plays in recognizing and managing treatment-related side effects.
Dr. Daniel Ermann:
Yeah, absolutely. So I’m a big advocate on educating patients, and I completely agree with what Dr. Chang mentioned. I think prevention is the key. I think the more work you can do up front to improve the outcomes down the road, the better. So in my experience, what I do for my patients in the clinic when it comes to education is I actually, I do quite a bit of, quite a few things. So I not only do I myself personally educate the patient on the drug, I also have my pharmacist meet with the patient either in person or over the phone depending on where things are at. I also print out handouts, because occasionally we hear a lot of things and as patients, sometimes it can be overwhelming, even as doctors, it can be overwhelming hearing a lot of things at once.
So I like to print things out for my patients, whether it be from UpToDate pages, whether it be from things like the websites that have drug information like Chemocare, etcetera etcetera. And I also utilize kind of these free sheets that you can find throughout…from many different organizations such as, like Lymphoma Research Foundation or others that have drug information, safety information.
And then I also recommend them easy ways to contact us, whether it be through like a messaging app or calling our office with questions. I think that educating your patients on what to expect with these drugs is really important. Fortunately in CLL, a lot of our medications, though there are some unique toxicities, are overwhelmingly much better tolerated than many other therapies for other cancers. So that is one good thing. So you want to give them enough information, but you don’t want to scare them to thinking that they’re going to have the worst of every situation, but I think it’s very important, especially up front, and then most patients will see how different drugs affect them.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. I love that you’re offering multiple different ways, because like you said, some people may be auditory learners. Many of the patients, when they’re hearing this information for the first time, as you alluded to, they’re going to be overwhelmed. They’re not going to remember. So I love the idea of also leaving them with something in writing that they can refer to later. What about you, Dr. Chang? You’ve been doing this for a while now. Are there any specific strategies or something that works really well for you, a particular tactic as it relates to educating your patients about side effects?
Dr. Andres Chang:
Yeah, I couldn’t agree more with Dr. Ermann. I spend quite a bit of time, again, speaking directly to my patients, having my team speak to my patients, and I follow many of the similar strategies that Dr. Ermann has already mentioned. In particular, places like Leukemia & Lymphoma Society, Leukemia Lymphoma Research Foundation, the CLL Society, all those societies have a wealth of information about the different treatments and approaches that we normally use for CLL. And I find it very useful that as part of our discharge paperwork from clinic, we do include links to those societies so that they can find additional information.
And aside from that, I think once you have a good rapport with a patient and your team has a good rapport with a patient, as long as there’s good communication either through the patient portal, through phone calls, through return visits, I find that once patients are very well-educated, then they are actually very comfortable starting therapy and pretty much know exactly what to expect at each step in the therapy. Whether it is a dose escalation week for venetoclax, for example, or what happens when we have to hold a medication for a procedure, when to restart, and those sorts of things.
Dr. Nicole Rochester:
Wonderful. Thank you both. Well, we’ve talked about the importance of educating patients. We’re going to circle back to our healthcare providers. And, Dr. Chang, I’m going to stay with you for a moment. Can you share any successful strategies for healthcare provider to healthcare provider education, any innovative approaches with regard to side effect management in CLL?
Dr. Andres Chang:
Yeah, I think that as important as educating patients, educating other healthcare providers is as critical. And as such, I think one of the missions that we have at academic institutions is that we should also offer some educational aspect to our consultant physicians across the community or nurse practitioners or nursing staff.
And so one of the things that I commonly do is that my notes tend to have a couple of paragraphs that explain my rationale behind the recommendations with sources, primary sources of information if they want to look up any particular data where I’m basing my decision on. And that happens both in terms of picking this treatment versus this other treatment, what is the efficacy data, but also for side effect and adverse events data.
I also, as part of the Winship Cancer Institute, we have a big outreach program to our community. And I’m sure Dr. Ermann has [this] too over at Utah, where we have outreach programs and reach out to other community oncologists, trying to give them information about the newest and latest therapies. We do symposia. And we also have an app where community oncologists can actually look us up directly and give us a call or something that, in case they run into problems.
And then we are happy to talk to them and help guide the management of their particular patients. I find that this kind of verbal communication and live direct provider-to-provider contact has been very useful. And I think that the community oncologists have really appreciated that.
Dr. Nicole Rochester:
I’m sure that they do. That is amazing. That’s awesome. What about you, Dr. Ermann? Do you have anything to add in terms of what you all are doing at your institution to communicate with other healthcare providers?
Dr. Daniel Ermann:
I just have to say Dr. Chang and I were on the same page. I completely agree with everything he said. I think that he is…it’s we’re super imposable at this point. I do the exact same things as he does, which is great, I think. I think that that’s fantastic. A couple other things I would just say as well is that I agree 100 percent. Communication is the biggest thing. Communication is not only one of the most important things, but it also can be a big barrier. So I think fostering communication between, a lot of what I do is deal with local oncologists as the academics. So I may only see patients a couple times a year, whereas the local oncologist may see them a couple times a month.
And so having an open line of communication, whether it be cell phone, like occasionally I’ll be texting local providers, calling them, having their phone number is very helpful, emailing back and forth. And then after I see patients, similar to Dr. Chang, I document well in my notes. And I also have my team send the note to them through fax or other means. So things like that, I think are very valuable and important and I think are game-changers when it comes to excellent patient care, because the communication barrier can sometimes be one of the biggest ones.
Dr. Nicole Rochester:
Absolutely. Thank you for that. Before we wrap up, we know that social media is often leveraged in healthcare among providers. And I think you mentioned, Dr. Chang, an app. So are there any other digital tools or are there ways that either of you leverage social media in order to manage side effects, either with education to providers or to patients? And, Dr. Ermann, I’ll start with you on this one.
Dr. Daniel Ermann:
Sure. So social media is a tricky one, because not everyone uses it. Also in CLL in particular, our median patient age is around 70 years of age, and not too many of my 70-year-old patients are on, but they can be. So I think as a provider, there are a couple of things. I’ll be honest, Twitter is actually, can be a great resource. If you follow certain providers in the field, you’ll get some updated information before anyone else, including especially during our annual ASH meeting, there’s an ASH app. And if you could attend the meeting, you’ll see that most updated data. And you can see that on Twitter and/or X as well. Other than that, we also have a Huntsman app similar to Emory. But I think that that’s about as far as social media goes for me. What about you, Dr. Chang?
Dr. Andres Chang:
I agree with Dr. Ermann that places like X and LinkedIn, if you follow the right people, you can get very useful information. And I think that that’s particularly true for people within the academic community and healthcare providers. But for patients per se, I think that this could be a little bit more tricky. And so I try to steer them away from that, in fact, and I try to kind of keep them within the main resources.
And if they have any questions or they have…or they’re confused about something, I always tell them, feel free to send me a message, and we’re happy to discuss whatever you read. And so I find that patients really appreciate the openness of discussing data because sometimes the data might be not very accurate. And by having that trust, they find it comfortable talking about things that might not be as conventional as we might think so.
Dr. Nicole Rochester:
Wonderful. Fully understood. There are certainly some risks associated with getting information from social media. So I appreciate you all providing that balance. Well, it’s time to wrap up our roundtable. And, as always, this has been an incredibly enlightening conversation. So as we close, I’d love to get closing thoughts from each of you. And I’ll start with you, Dr. Chang. What is the most important takeaway that you want to leave with those healthcare providers who are listening and watching this program?
Dr. Andres Chang:
Yeah, I think that the most important takeaways are actually two things, I think. One is really, really important to educate patients about their disease, about their treatment, about the potential side effects, and also to try to anticipate and mitigate those potential side effects so that patients know exactly what they’re expecting.
And then the second thing is really essential to have a great team around you because practicing medicine, particularly oncology, is not a solo practice. We really need a village to take care of our patients. And so having well-trained nurses, having excellent clinical pharmacists, all of them are essential members of the team that will help with patient care.
Dr. Nicole Rochester:
Wonderful, Dr. Chang. Thank you. And, Dr. Ermann, what are some closing thoughts you’d like to leave with our audience today?
Dr. Daniel Ermann:
I would say is that I would say don’t be afraid. In medicine, there’s often this thought that reducing treatment doses or things like that is a bad thing and you shouldn’t do it. I would say I would empower providers to not be afraid to dose-reduce, especially to mitigate very undesirable toxicities. So I’d say don’t be afraid to dose-reduce. There’s a lot of, at least in some of our medications, good efficacy data showing that dose reductions can have similar, if not the same, efficacy profile while mitigating toxicity. So I would say don’t be afraid to dose reduce, especially if the toxicities are not improving. Don’t be afraid to dose-hold.
And when it comes to empowering our patients more, I’m a big advocate on empowering patients. Particularly diseases like CLL, where two-thirds of patients at diagnosis don’t require treatment, and they’re told that they have cancer, and then all of a sudden they’re told that they don’t need treatment can be very scary. And I think that’s when patients feel like they have their disease understood and that they’re doing the best that they can for their own disease, it makes it better for everyone involved.
So I think empowering both providers and patients is kind of the optimal way to do things. And those are the best patients. When you deal with someone who knows their cancer, knows what’s going on, sometimes I get patients they know as much or more than me and I’m like, wow, this is incredible. Those are the best.
Dr. Nicole Rochester:
That is such a perfect way to end this program. An empowered patient is the best patient. Thank you so much, Dr. Chang. Thank you so much, Dr. Ermann, for this amazing discussion about managing side effects and managing dose modifications and educating patients and educating providers with regard to CLL. Thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Have an amazing day.
Share Your Feedback
Why Does Bruising Occur in Chronic Lymphocytic Leukemia?
Why Does Bruising Occur in Chronic Lymphocytic Leukemia? from Patient Empowerment Network on Vimeo.
Bruising is a chronic lymphocytic leukemia (CLL) side effect in some patients, but why does it happen? Expert Dr. Ryan Jacobs explains different reasons that bruising may occur more easily in CLL patients.
Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.
Related Programs:
|
Why Is Early Stage Chronic Lymphocytic Leukemia Treatment Delayed? |
|
Transcript:
Lisa Hatfield:
What causes persistent bruising? Are there more side effects from vaccines that have been discovered recently that were not discovered initially?
Dr. Jacobs:
Yeah. So there are a lot of different things that can cause bruising in a CLL patient. I think one thing that’s just worth noting is that we bruise easier as we get older. Our skin tends to thin, and often older patients are on medicines that interfere with platelet aggregation, and maybe even they’re on blood thinners. So, of course, all those things can contribute to bruising. CLL is a cancer of the aging patient population, average age 70, 71.
So these are patients that are going to be noting more easy bruising in general. But what are the CLL-specific factors that can lead to increased bruising? I would highlight, if patients are having decreasing platelet counts because of bone marrow involvement. And then the…what the second part of this question addresses is the use of Bruton tyrosine kinase inhibitors, specifically and the covalent Bruton tyrosine kinase inhibitors like ibrutinib (Imbruvica), acalabrutinib (Calquence), and zanubrutinib (Brukinsa). They all in varying ways, have been shown to lead to increased bruising and potentially bleeding. And they do tend to interact with the platelets in a way that leads to some dysregulation in platelet aggregation.
Share Your Feedback
Create your own user feedback survey
Is It Aging or My CLL?
Is It Aging or My CLL? from Patient Empowerment Network on Vimeo.
How can chronic lymphocytic leukemia (CLL) patients tell the difference between treatment side effects and normal aging issues? Expert Dr. Ryan Jacobs explains his perspective when fatigue is the only issue for the patient versus patients having multiple symptoms.
Dr. Ryan Jacobs is a hematologist/oncologist specializing in Chronic Lymphocytic Leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.
Download Resource Guide | Descargar Guía en Español
Related Programs:
How Can I Ensure My CLL Doesn’t Progress to Richter’s Transformation? |
|
CLL Genetic Markers: What Should I Ask About Prognostic Factors? |
Transcript:
Lisa Hatfield:
A patient had asked, and I love this question because I often wonder myself when I get up in the morning, my bones are creaking and popping, “How do you know the difference between,” this patient’s talking about fatigue. How does a patient discern, “Well, this is fatigue from my cancer or my treatment,” versus just normal aging? Whether it’s fatigue or bruising or any side effect.
Dr. Ryan Jacobs:
Yeah. Fatigue is a really…I had an attending physician when I was in my training that said, “Treating fatigue makes me fatigued.” But it’s hard. If it’s really the only problem the CLL patient is having, it can be…all those other problems I had mentioned earlier, the low red cells, the low platelets, the painful nodes, the night sweats, I with close to 100 percent certainty know I can fix those with treatment.
Fatigue, I’m not as confident when that’s the only issue that a patient’s having. I try to differentiate between fatigue from other causes and old age, and specifically to CLL. They try to put it as a metric and say, if you’re having to spend half the day or more just lying around and you’re not able to do your normal activities of daily living, like that’s a severe level of fatigue and treatment should be considered. I’m looking for somewhat of a precipitous decline, not necessarily just kind of the gradual fatigue that you might more relate to aging.
The problem with treating fatigue is you’ll look, if you look at the possible side effects of all of these medicines I talked about, fatigue will be a potential side effect. So you’re sometimes trading one problem and getting another, or maybe the fatigue does get better, but then the patient has some different side effect that’s even worse than the fatigue. So it’s hard to really help when fatigue’s the only issue. But certainly, I have helped some patients with fatigue. We don’t have a test that we can do to know for sure is the fatigue coming from the cancer, or is it coming from something else.
Share Your Feedback
Create your own user feedback survey
What To Expect When Starting MPN Inhibitor Therapy
What To Expect When Starting MPN Inhibitor Therapy from Patient Empowerment Network on Vimeo.
Changing a treatment approach for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF) can be intimidating. Dr. John Mascarenhas, a myeloproliferative neoplasm (MPN) specialist, shares tips and advice for beginning a new therapy.
Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Leader of Clinical Investigation within the Myeloproliferative Disorders Program at Mount Sinai. Learn more about Dr. Mascarenhas, here.
Related Programs
|
Why You Should Speak Up About MPN Symptoms and Treatment Side Effects |
|
Transcript
Katherine Banwell:
And we have another question from Craig that we received earlier. “I’m currently receiving regular phlebotomies for PV, but my doctor is considering switching me to inhibitor therapy. What can I expect, and are there side effects that I should be concerned about?”
Dr. Mascarenhas:
So, for some patients, therapeutic phlebotomy is all that they need, and they do very well with it, and they don’t need to take a therapeutic like a JAK inhibitor or hydroxyurea, which is a non-specific treatment.
But some patients do. So, some patients where if their risk score is higher and their risk for thrombosis, that may be an appropriate indication. And some patients have a lot of symptoms with their PV. So, not all PV patients present and behave the same way. Some patients have a very low symptom burden. Some patients have a very significant symptom burden. Itching, for example can be a very annoying and very troublesome symptom for patients with PV.
And, if you don’t have PV or you don’t know someone with PV, you may not understand or realize the negative impact of having intractable itching, often associated with taking a shower or warm water.
And, that can really detract from quality-of-life and cause a lot of anxiety. So, that’s an example of where sometimes a JAK inhibitor like ruxolitinib can be really lifesaving in terms of restoring quality-of-life and functionality to a patient.
Usually, drugs like ruxolitinib are very well-tolerated too, which we’re fortunate about. There’s not a lot of toxicity associated with them. So, for example, nausea, vomiting, diarrhea, hair falling out with chemotherapeutics, you really don’t see with ruxolitinib or Jakafi. Easy bruising, headaches and some dizziness up front sometimes may be seen. They’re usually low-grade and they’re usually fleeting. And usually, the benefit, the feel-good aspect of it outweighs toxicity that can be seen with the drugs. They are immunomodulatory drugs. So, ruxolitinib or Jakafi may increase, to some small extent, but likely, real extent, infectious complications like shingles, urinary tract infections, upper respiratory infections. So, sometimes there is this increased risk. It’s often outweighed by the benefit of the drug.
But there are risks that are associated, and of course the results are not guaranteed. So, I always warn patients, be careful when you look at the package inserts or talk to the physicians. Risks are risks. They’re not guaranteed. So, most patients don’t have these toxicities, but one is at risk for toxicity whenever they take any medication.
Fact or Fiction? AML Causes & Symptoms
Dr. Daniel Pollyea, an AML specialist, dispels common myths around the causes and symptoms of AML and shares advice so that you can identify credible resources for information. Download the Program Guide here.
Dr. Daniel A. Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center.
See More From the Fact or Fiction? AML Series
Related Resources
|
|
|
Transcript:
Ross:
I’m Ross Reynolds. Today we’re gonna be debunking some common misconceptions about the causes and symptoms of AML.
And joining me is Dr. Daniel Pollyea. Dr. Pollyea, could you introduce yourself?
Dr. Pollyea:
Yeah. Hi. Good morning, everyone. I’m Dan Pollyea. I’m an Associate Professor of Medicine here at the University of Colorado, where I am the Clinical Director of Leukemia Service.
Ross:
I wanna emphasize to you that this program is not a substitute for medical advice, so be sure to consult your healthcare team when it comes to solid information about it. But you will get some background that I think you’re gonna find useful. And you might have some questions as we go along.
Dr. Pollyea, let’s start out with the basics. What are the causes of AML?
Dr. Pollyea:
Yeah. So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.
And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.
And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.
And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.
Ross:
What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?
Dr. Pollyea:
Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.
So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.
We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.
Ross:
Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?
Dr. Pollyea:
Yeah.
So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.
So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.
So, that’s the challenging balance.
Ross:
Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?
Dr. Pollyea:
I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.
We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.
So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.
I know that’s not a satisfying answer, but at the moment that’s the best answer we have.
Ross:
Is formaldehyde exposure another risk factor for AML?
Dr. Pollyea:
Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.
Ross:
What’s the difference between a risk factor for AML and a cause of AML?
Dr. Pollyea:
Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.
Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determinations
Ross:
Is there a genetic component to this? Can this run in a family?
Dr. Pollyea:
Yeah. So, this is a disease of the genome.
So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?
For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.
But the vast majority of people with this disease did not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.
Ross:
You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML?
Dr. Pollyea:
Yeah. Yeah. That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.
And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”
These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.
And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML.
Dr. Pollyea:
Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.
But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.
We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.
Ross:
Autoimmune diseases, such as arthritis, can they increase the risk of AML?
Dr. Pollyea:
Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.
It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.
But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.
Ross:
How easy is it to diagnose AML?
Dr. Pollyea:
Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.
So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.
In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.
Ross:
This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?
Dr. Pollyea:
Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.
So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.
Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.
Ross:
You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?
Dr. Pollyea:
That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.
Ross:
How important is early diagnosis?
Dr. Pollyea:
Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.
I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.
So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.
Ross:
What are the best ways to manage those symptoms?
Dr. Pollyea:
Right. So, I mean, at presentation, all those symptoms, the best way to manage those are to start treatment as quickly as possible. So, impacting the underlying cause of this disease is the most important and critical factor to getting a person feeling better because all of these problems stem from the disease in the bone marrow, and so everything else that you do to sort of help a person’s symptoms are Band-Aids when you’re not talking about getting to the root cause.
So, that’s at presentation. Now once we start treatment, there are many potential side effects to any number of treatments. And it all is dependent on what treatment you’re getting and other things about you that will make this a significant problem in some cases. And in that setting, we do have ways that we can aggressively manage a person’s side effects.
Ross:
Can you manage all of the symptoms? Or can people still be experiencing symptoms even after they’re in treatment?
Dr. Pollyea:
Absolutely. So, a person with this disease, depending on how long they’ve had it and some of the features, may not be feeling back to their baseline self for potentially weeks or months after treatment starts in the best-case scenario. So, that can be very frustrating, but a person needs to sort of be able to continue to have a good outlook and stay positive.
Because we are able in many cases to make a big impact on this disease and return a person to their pre-disease quality of life.
Ross:
What are some of the myths that you hear, Dr. Pollyea, about the treatment? Some things that people come in to you saying they think that it helps, but there’s no science to back that up?
Dr. Pollyea:
So, myths about treatment, so many people have a lot of preconceived notions about the intensity of a therapy that they’re going to be asked to withstand. And although sometimes we do treat this disease very intensively, that’s not always the case, and now we have some very effective lower-intensity regimens that can be used in a variety of different scenarios.
There are a lot of people who have a lot of preconceived notions about a stem-cell transplant or a bone-marrow transplant and whether or not they would be eligible for this based on maybe what they’ve heard from friends or family, or what they’ve seen in the internet.
And those are often incorrect. And so, keeping an open mind about treatment options, and discussing those in detail with your doctor are really, really important.
Ross:
You mentioned sometimes it presents in young people, sometimes in older people. What’s sort of typical?
Dr. Pollyea:
This is a disease of predominantly older patients, so the median age of presentation is 68. So, that means that over half of the patients are over 68 years old at diagnosis. So, while this does happen, can happen in younger patients, that’s really an unusual situation. This disease is, like I said, it is predominantly a disease of older patients.
Ross:
There are some patients who I understand think that supplements can deal with the symptoms of AML. Is that accurate?
Dr. Pollyea:
You know, I mean, I think the supplement question is always a challenge. A lot of these supplements, or most of these supplements have never been tested with the rigor of treatments that we’re accustomed to in the medical establishment.
That being said, I won’t deny that some of the supplements can help patients based on what patients’ experiences are and what they tell me. I think what’s really important is just be very open and honest with your doctor about the supplements that you’re taking or want to take to ensure that there are no sort of unanticipated interactions with treatments.
Because I think most doctors are very open to having their patients care for themselves in the ways that they’ve become accustomed to, and they know their bodies very well, and we’re very open to that. But there are sometimes that a drug or a supplement might have a bad interaction with the treatment.
And so, a good example in my practice is antioxidants. So, there’s a lot of literature, a lot of interest in antioxidants as cancer-prevention treatment.
And a lot of that is not well-established, but still I don’t see much harm. But when it comes time to treating a cancer, that’s a very different situation. When we give a patient treatment to try to kill the cancer cells, many times we’re trying to provoke oxidation. That’s part of how these drugs and these treatments work.
So, if you’re taking those treatments, but also at the same time taking antioxidants, there’s the potential you could sort of be cutting your therapy off at the knees, fighting it with one hand behind your back. So, for the period of time when my patients are getting an active treatment, I ask that they don’t take it antioxidant.
And they can resume that in the future in the hopes of preventing another cancer. But the time to prevent with an antioxidant isn’t appropriate when you’re dealing with an active cancer. So, that’s just one example.
Ross:
Fatigue could be a symptom of AML, but there are a lot of causes of fatigue.
How do you differentiate between something that really could be AML and something that isn’t?
Dr. Pollyea:
Yeah. That’s a challenge because I think these are, as I said, older patients. And older patients have a lot of other medical problems. And older people get fatigued, just that’s unfortunately part of the normal aging process. So, we would usually make an assumption that a person’s fatigue and diagnosis is due to the leukemia, the anemia as a result of the leukemia.
But as we successfully treat a patient if they are responding based on their numbers and other objective criteria, but the fatigue is not improving then I think that’s where we would start to look at other contributing factors, and there can be many, so having an open mind at that point is important.
But at the beginning, this is such a monster of a disease, it’s so overwhelming, I think the focus is usually on assumption that the fatigue is due to the disease or to a treatment associated with this disease.
Ross:
This question: is loss of appetite a symptom of AML?
Dr. Pollyea:
Yeah. I definitely see that, hear that, so sometimes people come in and they say that. Sometimes it may not be a loss of appetite, but an extreme weight loss, so a lot of different types of cancer, including AML, can cause that, just basically unintentional weight loss.
A person’s not trying to lose weight. They’re eating what they think is their normal amount and they’re losing tremendous amounts of weight. So, those are both potential presenting symptoms with AML. And loss of appetite, unfortunately, can be associated with some of the treatments for this disease. And taste changes, things not tasting good, can all contribute to that as well, so those are all challenges that our patients face.
Ross:
How important is to get a second opinion? I mean, are all doctors like you pretty much on the same page when it comes to symptoms and treatment?
Dr. Pollyea:
So, this is a challenge. So, the answer to the second question first is unfortunately, no. A lot of this hasn’t quite been standardized. And some doctors, oncologists, cancer doctors, they’ll predominantly be treating the things that are common: colon cancer, breast cancer, prostate cancer. And they will probably only have a few cases of acute leukemia a year.
And so, their approach to this is going to be different than somebody who spends all day seeing patients with AML and thinking about AML.
So, a second opinion is a very nice thing to be able to do. The problem with this disease is that most times it doesn’t afford that opportunity. So, with other conditions you have some time to go out, read about it, talk to some different doctors, get a good plan together.
With AML, often that’s not a possibility. A person is so urgently sick that you have to sorta deal with the resources where you are. The best recommendation I have there, if you do find yourself in a situation where there’s not a lot of expertise is to ask your doctor to just call somebody in the region or email somebody in the region who may have that expertise.
And most doctors all over the country have that sort of resource or partner that they will go to and talk the case through with them, and maybe a transfer to one of those high-volume centers is appropriate.
And maybe that’s not a possibility or appropriate, but maybe you would benefit from just talking… Maybe your doctor would benefit from talking this through. But in cases where it’s not such a dramatic presentation, then yeah, for sure, I think a second opinion can be appropriate. But this isn’t something that can be sort of drawn out for long period of time.
Ross:
You know, when you find out something like this, your tendency might be to jump on the web and start searching for AML. How do you vet those sources that you look at? How do you figure out that their – what would be a sign that they’re bogus sources?
Dr. Pollyea:
Yeah. I mean, I think this field is so rapidly changing and the treatment that we have, that I would, for the most part, assume that what you’re finding on the web is not relevant and is not an up-to-date resource. So, the resources that I listed, the NCCN, UpToDate, the Leukemia & Lymphoma Society, I should mention.
A very important resource that has up-to-date information, and they have even phone numbers for patients and their families to call to get connected with the proper people in a particular city, so that is a really important resource. But I’d be really, really cautious about what you find on the internet because things are changing so fast in this field. There’s a lot of outdated and misinformation on the internet.
Ross:
Well, then there’s outright scams. One of the things you mentioned before we went on is be cautious if someone’s asking you to put money upfront, or if it’s a nonmedical facility. What are some things that people should watch out for?
Dr. Pollyea:
Yeah. So, one of the things that is so important in our area is clinical trials and participating in clinical trials. Patients who opt to do this and receive experimental therapies can sometimes get the treatment of the future, get a drug that’s not currently available through the FDA, but may have a lot of promise.
And this is the way that we fight this disease. We’ve recently had an onslaught of approvals for AML and that’s because the patients being willing to participate in sanctioned clinical trials. So, participating in a sanctioned clinical trial is crucial, and it’s always a recommendation of all leukemia doctors.
When you participate in a conventional clinical trial, you’re asked to sign a consent form that explains what you’re doing and why. There is a confirmation that this has been vetted by an institution’s regulatory board that is prioritizing the safety and well-being of you, the patient. This has been approved by the FDA as a clinical trial. Nobody would ever ask you to pay money. That’s not ethical to participate in a clinical trial. Insurance covers whatever standard of care. And the clinical trial covers anything that isn’t.
So, if you find yourself in a situation where you’re not being asked to sign a consent form, where a clinical trial has not been reviewed by a regulatory board, where your doctor is not a leukemia specialist, where the FDA has not sanctioned the treatment, all of those are alarm signs.
Because there are people out there that are preying on patients in a desperate situation, a very difficult time in their life, and giving them sort of false hope and leading them down paths that are not legitimate.
One easy thing to do to sorta check to see if a clinical trial is legitimate is to go onto clinicaltrials.gov.
This is a resource set up by our national healthcare system that now feeds in every legitimate clinical trial from all over the world, needs to be registered on clinicaltrials.gov. So, if you can’t find your clinical trial on clinicaltrials.gov, I would have a lot skepticism and caution about that.
Ross:
Like what advice do you have for people when they’re first diagnosed? What are the first things they should try to do?
Dr. Pollyea:
Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.
And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.
I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.
We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.
All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.
Ross:
It sounds like you’re hopeful about new treatments for the disease. How about a cure? What’s the science? What’s the medical science say about that? Are we getting any closer to that?
Dr. Pollyea:
We are getting closer to curing this in more cases. So, like I mentioned before, as bad as this is, we can already cure some subsets of patients. There’s one type of Acute Myeloid Leukemia called Acute Promyelocytic Leukemia, APL. It’s an uncommon form of AML, less than 10 percent.
But we can cure close to 99 percent of people with APL. And APL, 15 years ago, was universally the worst form of acute leukemia to get. So, that dramatic 180 that we’ve seen in APL, we are hoping to translate into other forms of AML.
Some other forms of AML have cure rates as high as 50 percent, 60 percent, 70 percent in the right setting. Sometimes we can cure patients with a stem cell transplant fairly reliably. So, we are very, very hopeful about our ability to continue to make progress and cure more and more and more of these patients. That’s the future that we see.
Ross:
Dr. Pollyea, thank you so much. And thank you so much for ending on such a positive note. We really appreciate it. And thank you for joining us for this program today.
To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Ross Reynolds. Thanks for joining us.
