PEN Blog Archives

From Awareness to Advocacy: How Social Media Platforms Raise Cancer Awareness

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Social media is a powerful tool. While most of us use it casually or for entertainment purposes, it’s also a major resource for businesses and organizations.  

But, social media isn’t just a way for you to keep in touch with family and friends or to check out your favorite businesses. It can also be used as an incredible opportunity to spread awareness about important issues and causes – including cancer.  

Because of the community aspect of social media, it’s not only easy to spread awareness, but it’s possible to mobilize local communities across the world for advocacy.  

With that in mind, let’s look at how various social media platforms contribute to raising cancer awareness, and the impact they have on empowering individuals, advocacy groups, nonprofits, and more to become advocates for cancer-related causes.  

Recognizing the Power of Social Media 

Chances are, you’re on at least one social media platform. Many people are active on several. Almost everyone you know is probably involved with at least one, too. But, don’t just look to yourself or your inner circle to consider the power of these platforms. When you take a look at the numbers and start associating them with the spread of awareness, you’ll see just how powerful these platforms can be. Today’s top social media sites are:   

  • Instagram
  • YouTube
  • Facebook
  • Twitter
  • TikTok 
  • Pinterest 
  • Snapchat 
  • LinkedIn 

The interesting thing about these platforms is that they have different audiences. There’s some overlap, of course, and there is no age limit on who can use different social media sites. But, when you’re trying to spread awareness and boost advocacy, you have to consider who you’re talking to. For example, platforms like TikTok and Snapchat are going to feature a younger demographic.

That’s not a bad thing, it just might require you to adjust your message to different audiences. Your main goal, with any platform, should be to provide real, accurate information that builds trust. Unfortunately, there is so much misinformation out there nowadays, and every time it pops up on a social media platform, some people might believe it, setting back true awareness even further.  

Building Communities Through Social Media 

Interacting with your family and friends on social media is great, but if you’re trying to spread awareness about cancer, it’s important to branch out. Social media gives you the opportunity to connect with complete strangers and end up forming a community of friends – even if you’ve never met in person.   

There are plenty of online communities dedicated to awareness and advocacy, even from the American Cancer Society. Some of the largest organizations featured by the ACS include CaringBridge, Cancer Survivors Network (CSN), the National Cancer Information Center, (NCIC), and Reach to Recovery. Any of these options can help you find the support you deserve in an online setting, and while they each have their own website and/or app, they also have a strong social media presence that can help you connect with others who might be dealing with the same health issues.  

But, starting a grassroots community on social media can sometimes be more powerful. It’s honest and real without any hoops to jump through. People can invite their own friends and family, and it can continue to grow via word of mouth. It will give people the opportunity to speak freely, share their stories, and educate others along the way.   

While building a community is a great way to communicate with others, you can go further than that by connecting with caregivers or creating a safe place for caregivers to offer their services. You can create a community that fosters support throughout the diagnosis and treatment process. You could even provide regular information about cancer research and opportunities for treatment – if you’re willing to back up every claim with the help of healthcare providers.   

Your community could even be a source of comfort and inspiration for caregivers. They often need support and encouragement, even if it’s from a group of people online that understand what they’re dealing with every day.  

If you want your social media communities to grow, don’t hesitate to do a bit of marketing. Your goal should be to attract attention and get people talking. Once your community starts to grow, some of the most important rules for helping it to thrive include: 

  • Being responsive
  • Empowering followers to take action
  • Engaging with user-generated content 
  • Staying on-brand and being relatable

It’s also important for your community to feel safe and heard. It’s not always easy for people to open up online, and if you want nonprofit or advocacy groups to join you, they need assurance that their information and data will be kept safe. That’s especially true if they’re providing you with personal health stories or giving you financial information to boost awareness or grow your community.  

If you’re going to be in charge of an online community, be sure you understand the basics of cybersecurity. Things like installing risk-based management systems, utilizing advanced email security, and requiring multi-factor authentication to log in to certain back-end sites will help to keep you safe while protecting the information and data of your community.  

Taking Things Offline 

Building awareness via social media is only the first step. It’s an important one, and you could end up doing more for yourself and other people with cancer than you ever expected. It’s easy for some people with cancer to feel alone, or even hopeless. By fostering a community on social media, you can provide them with support, friendship, and understanding. You can connect them with others who might be in the same situation, or people who have beat the disease and are on the other side of it, enjoying life.  

But, at some point, it will be time to encourage the community you’ve built on social media to step out into the real world and take action.  

Advocacy in the real world takes many forms. It can be something as simple as volunteering for a support group, listening to and sharing personal stories, or even visiting those who have recently been diagnosed with cancer.   

When you’ve used social media to build a community, though, you can go even bigger with your advocacy efforts. Create events on your platforms designed to educate the public about cancer. They might include things like marches or gatherings, speaking at community centers, or attending events at schools or healthcare facilities to hand out accurate information and connect with others in person.  

You can also encourage your social media friends and followers to advocate on their own within their communities. The beauty of social media is that it spreads all over the world. People can help by:   

  • Participating in fundraisers
  • Donating money to a cancer relief group
  • Speaking with community groups
  • Communicating with local media 
  • Changing public policy

Again, social media is a powerful tool. While we might often view it as something fun, or even something we use to pass the time, it can be used for good – and even to change the world. Keep these ideas in mind to go from awareness to advocacy, and you could end up being a social media superhero.  

PODCAST: What Do You Need to Know About Emerging Endometrial Cancer Research?

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Endometrial cancer treatment and research is evolving quickly. Dr. Emily Ko provides an update on new and emerging approaches, explains how these therapies work to treat endometrial cancer, and shares tips for partnering with your team on key decisions.
 
Dr. Emily Ko is a gynecologic oncologist and Associate Professor of Obstetrics and Gynecology at the University of Pennsylvania. Learn more about Dr. Ko.

See More from Evolve Endometrial Cancer

Transcript:

Katherine:

Hello, and welcome. I’m your host, Katherine Banwell. Today’s program focuses on helping patients with endometrial cancer learn more about evolving research and treatments. We’re also going to discuss how patients can collaborate with their team on care decisions. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. 

At the end of the program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining us is Dr. Emily Ko. Dr. Ko, welcome. Would you please introduce yourself? 

Dr. Ko:

Surely. Thank you so much. My name is Dr. Emily Ko, and I am a gynecologic oncologist. Currently, I’m an associate professor at the University of Pennsylvania, and as part of my daily work, I see patients, I provide surgical and medical treatments for gynecologic cancers, and I also am a researcher involved particularly in endometrial cancer. 

Katherine:

Thank you so much for taking the time out of your schedule to join us today. 

Dr. Ko:

Thank you. 

Katherine:

Well, let’s start by learning about the latest research news. Just this June, endometrial cancer researchers from around the world met to discuss their findings at the annual American Society of Clinical Oncology meeting, or ASCO, in Chicago. Can you walk us through the highlights that patients should know about? 

Dr. Ko:

Sure. So, the ASCO meeting is a very big meeting that happens once a year in June, and really, it is a national – actually, international – meeting where the biggest breakthroughs in cancer therapy are really presented and discussed. 

So, within the field of gynecologic cancer and specifically endometrial cancer, we really saw a couple breakthrough clinical trial results, if you will. The two specific trials that have hit the spotlight – and, it was presented at ASCO; they were also previously presented at the Society of Gynecologic Oncology annual meeting in March of 2023. These two trials – one of them is called GY018, and the other one is called RUBY, and these two trials specifically were geared at patients with endometrial cancer of either advanced stage, meaning stage III or IV at diagnosis, or patients who have recurrent endometrial cancer.  

And, these both trials were very large, multisite, international trials enrolling a huge number of patients. They were randomized controlled trials, meaning that they were specifically testing what we call a standard therapy, Taxol-carboplatin, versus a standard therapy plus a newer agent, and that newer agent falls in the realm of an immunotherapy drug. 

So, with this kind of novel approach, where we’re combining standardly used chemotherapy plus a newer immunotherapy drug, the question was if you did this combination, would patients have a better outcome? And, in fact, the groundbreaking news was that yes, patients did have a better outcome with this new combination of therapy, and this was shown in various forms of results. 

One of the primary outcomes is always something called survival, and with the GY018, they looked at progression-free survival as a primary outcome, and it did show that patients on this new combination did better with progression-free survival. And the difference was about median of about three months. Now, that may not sound like a whole lot. However, in the realm of cancer therapy, when you take a very large group of patients, that was a meaningful difference that was statistically significant. 

And furthermore, as we’re moving forward with our therapy drugs, we are moving into this era of targeted therapy, precision medicine, where we’re really trying to hone into more the specifics of the biology of each person’s cancer, and not treating everyone the same. 

What’s interesting with these two trials is when they looked at different subpopulations of patients with advanced or recurrent endometrial cancer, whether they had a type of endometrial cancer that was considered MSI-high, or a microsatellite instable type of cancer, which basically refers to a certain biology of these endometrial cancers, it has to deal with how the cells – the cancer cells – behave, how they’re able to not follow the rules and be able to replicate themselves. 

The patients who are MSI-high particularly had a really great response with this chemotherapy, so it was even beyond just a three-month difference. With that being said, even in patients who are what we call microsatellite-stable, who didn’t have this unique signature, they still saw a benefit with this novel combination, and to add to that, the nice thing about it is the toxicities were not bad. Even this new combination was very well-tolerated. 

It was not a high rate of severe toxicities or side effects, if you will, and that actually, the great majority of patients were able to stay on this therapy and really get through – complete the therapy course. 

So, there are some sort of nuanced differences between the two trials I mentioned, GY018 versus the RUBY. And some of those details are with regards to the even specific subtype of endometrial cancer, which we haven’t talked about yet, for example, uterine carcinosarcoma versus uterine serous carcinoma, uterine clear cell, uterine endometrioid – these are all specific subtypes of endometrial cancer. So there are some nuances where the RUBY trial was able to include patients with uterine carcinosarcoma, whereas the GY018 did not. 

But suffice it to say, now we have enough data that virtually all endometrial cancer patients with advanced stage, regardless of what histology, there is essentially a trial that can apply to you where it demonstrated this added benefit to doing this novel combination, and that was found with microsatellite-stable patients as well as microsatellite-instable in both randomized controlled trials that I mentioned. 

Katherine:

Such exciting news! That’s great! Well, beyond ASCO, Dr. Ko, are there other research or treatment advances that patients should know about?  

Dr. Ko:

Certainly. Like I mentioned, we’re really moving towards the realm of treating with a targeted therapy approach, and within endometrial cancer, the prior paradigm was much simpler, but really not in the space of target therapy. So, for example, what does that mean? 

So, as we’re realizing that there are very unique biologic signatures to different patients’ endometrial cancer – there could be, for example, some cancers that are particularly receptive to hormonal therapy, meaning their specific cancer, when we send it for detailed – we call it genomic or somatic testing, we can discover, oh, they have estrogen-receptor-positive, progesterone-receptor-positive, and so, those type of cancers may be very responsive to hormonal-based therapy, and in that space, we have a standard available drugs, but we also have clinical trials that are trying newer drugs. 

If, for example, the standard aromatase inhibitor or the standard progesterone agent may be helpful, but there are even more in that space that this point – CDK inhibitors that you can combine with these aromatase inhibitors or hormonal agents that have been around for longer that have shown a lot of promise, a lot of data in breast cancer. But now we’re realizing, wow, there could be some efficacy in endometrial cancer as well, so that’s just one example. 

And there’s other unique biologic gene signatures, again, kind of a good list now out there, that are being studied in various clinical trials, whether they’re PARP inhibitors, whether they’re drugs that target CCNE1, whether they’re drugs that target ARID1A, so there are actually many more that are available. So, they’re really expanding the opportunity for treatment for endometrial cancer patients. 

Katherine:

Well, you just mentioned clinical trials, and I think it’s a good topic to cover a little bit. Why is it important for patients to actually consider enrolling? What are the benefits for them? 

Dr. Ko:

Sure.

So, while we certainly have a good armamentarium of standard-of-care therapies already, and I should mention that does include our classic chemotherapy drugs like paclitaxel (Abraxane), carboplatin (Paraplatin), and even doxorubicin (Adriamycin), if you will, or doxorubicin Hcl (Doxil), there are the immunotherapy drugs now that have become standard of care as well, like pembrolizumab (Keytruda), but sometimes, despite using those best available drugs, the cancer unfortunately either continues to grow or you had a good response, but somehow it shows up again – the cancer shows up again – and so, then, we’re looking for additional opportunities, additional therapies. 

And so, some of the best opportunities are actually to consider these clinical trials. The way that clinical trials are designed is that they always are going  to provide you at least a backbone of a standard available therapy, so you’re never going to get less than what would be considered standard of care. 

But, what they’re doing is they’re usually partnering another drug – a more novel therapy – or they’re basically testing a more novel therapy that could be more targeted, that could potentially have better efficacy than what’s already available standardly. And so, the value of that is that you could have an opportunity to have a therapy that could work even better.  

When you’ve tried something already, unfortunately, the cancer has grown, there is still opportunity, and while you’re on a clinical trial, I think one of the huge benefits is it’s very regulated. You are monitored so closely because at the base of all of this is safety. There is never going to be a drug or therapy that’s going to be administered to a patient without ensuring that there’s absolute safety for that patient, and so, that’s a way that you really have opportunity to get more treatment that could really help your cancer condition and do it in a very, very safe, formal fashion. 

Katherine:

And ultimately help others as well, in the future.  

Dr. Ko:

Exactly, absolutely, because as you’re participating in this process – and, of course, it’s a voluntary process to participate on a clinical trial, so we so appreciate all the patients who, in the past, have participated and are willing to participate in the future, but allows us also to really gather a lot of information to really inform cancer treatment for all the patients coming down the road, and those could be anyone. They could be our neighbors, our friends, our own family members, and that could really be so helpful to everyone that’s going through this type of thing. 

Katherine:

Absolutely, yeah. I’d like to back up a bit and talk about what endometrial cancer is. It’s often referred to as uterine cancer. So, are they the same thing? Are these terms interchangeable? 

Dr. Ko:

Sure, it’s a great question. So, endometrial cancer refers to cancer that starts in what I call the lining of the uterine cavity. So, inside the uterus, there’s a uterine cavity, and there’s a tissue that coats that cavity, and that’s called the endometrium. So, endometrial cancer is basically when cancer cells start growing from that tissue. And, of course, since that exists in the uterus, of course, it’s considered uterine cancer, and we’re just being a little bit more specific when we say endometrial cancer. But, of course, endometrial cancer is the most common form of uterine cancer by far, so in some ways, it’s almost – it’s synonymous.  

Katherine:

How is endometrial cancer staged? 

Dr. Ko:

So, the most classic, rigorous way to stage endometrial cancer is through a surgical procedure. So, what that usually involves is it does include a hysterectomy, removing the uterus and the cervix, usually also includes removing the fallopian tubes and the ovaries. 

And, at the same time, the surgeon will do a very thorough assessment of the abdominal pelvic cavity, basically looking around all those areas to see if there’s any signs of visible disease, anything they can see that looks like it could be tumor deposits in the abdominal cavity. If anything is seen, those deposits will be removed and biopsied, so that’s part of the staging procedure. 

And additionally, it’s important to try to assess the lymph nodes, typically. So, there are lymph nodes in the pelvic area, and then, higher up along the aortic area, and so, there are different surgical techniques that we can use to basically test or sample some of those lymph nodes, be able to remove them, send them to the pathologist, look under the microscope to see if there are any microscopic cancer cells that have traveled to those lymph nodes. 

So, that is all part of a surgical procedure, and with all the information collected from those tissue samples that are removed from the body and sent to the pathologist, but the pathologist then reviews all of that under a microscope, and then can issue a very thorough report describing where the cancer cells are located, and by definition, where the cancer cells are located then defines what the stage is of the cancer. 

Katherine:

Can you give me an example? 

Dr. Ko:

Of course. So, for example, if the cancer cells are located only in the uterus, and they’re not found anywhere else, then that is a stage I. If the cancer cells have traveled to the cervix area specifically, this we call a cervical stroma, that becomes a stage II. If the cancer cells have, for example, traveled to the fallopian tubes, or the ovaries, or the lymph nodes, then that becomes a stage III, and there are sort of substages within those categories as well. 

Katherine:

But stage III would be the highest or most severe? 

Dr. Ko:

So, there’s stage III, and then there’s actually stage IV. So, if the cancer cells have traveled outside of the pelvis into the abdominal area, then we consider that a stage IV. 

Katherine:

And that would be considered advanced endometrial cancer? 

Dr. Ko:

Right. So, by definition, “advanced” typically refers to stage III or IV. 

Katherine:

I see, okay. Now that we understand more about the disease itself, I’d like to talk about the treatments that are currently available. You mentioned chemotherapy, but what else is available for people? 

Dr. Ko:

Absolutely. So, treatment for endometrial cancer is usually some combination of surgery, and then it may be followed by possibly chemotherapy, as well as radiation, and sometimes, it may be a combination of all three treatments, or sometimes, it’s a combination of one or two of those, depending on the exact stage, depending on the exact cell type, and some of the other factors. 

Katherine:

Are hormonal therapies used as well, and targeted therapies? 

Dr. Ko:

Yes. 

Katherine:

I know they are in other cancers. 

Dr. Ko:

Yes. And so, I think the question is where do those come into play? So, I would say the usual algorithm most commonly would be that surgery is done first, as the most common first step, and then, based on the information obtained from surgery and the pathology report that comes from that, then there’s usually some type of a recommendation about should there be a second stepped treatment, and that frequently can be chemotherapy/radiation.  

Now, the areas where targeted therapy – for example, immunotherapy – where does that come in? So, that now has come into the – I would call it the second stage. We’re combining it with the classic chemotherapy drugs – Taxol-carboplatin, for example. That’s one example where it could come into play. Another example could come into play where a patient had gone through classic Taxol/paclitaxel and carboplatin, then had cancer come back, and so, that could be another instance where that pembrolizumab or pembro with lenvatinib (Lenvima) combination can be used in the setting of recurrence. 

Now, we could also say, hey, if your cancer type has those hormonal receptors present or is some type of what we call endometrioid histology, and we think that hormonal therapy may be more effective in that case, then that could also be used in a setting where the cancer has kind of grown again, the cancer has grown back, or actually, there are certain situations where patients, for example, may not undergo a hysterectomy. 

And, there are unique cases and those situations where patients are still trying to preserve their fertility, and therefore not wanting to undergo a hysterectomy, or they’re unable to undergo surgery safely. And so, in some unique situations, we may also use hormonal therapy as the mechanism to treat their cancer, and whether that is by way of a pill, whether that is by way of a progesterone intrauterine device, IUD, that is placed into the uterus, we also have situations where we tailor the therapy to the condition of the patient. 

Katherine:

How are patients monitored for a recurrence, and are there approaches to help prevent a recurrence? 

Dr. Ko:

Sure, absolutely. Great question. It is important to continue monitoring patients, even after they’ve gone through treatment. So, I think of it as a multifaceted approach. Usually, it includes office visits, including a physical exam. It includes a thorough intake of all of their symptoms. 

It also includes – depending on the scenario – in some circumstances, regular imaging studies, such as a CT scan or MRI, and sometimes, we also do things like PET scans, and I think that does have to be tailored to the unique patient’s endometrial cancer, unique case, stage, histology, and we kind of tailor which tests we choose to do. The interval of monitoring can vary, so I would say generally speaking, it could be anywhere from three- to six-month visits, and with potentially added scans, as we talked about, and sometimes, we also do certain blood tests in certain cases where we may choose to follow a CA125 blood tumor marker. 

But, I would say that there are different, definitely variants to how we choose to monitor, and there are certain resources we tend to use, such as the NCCN guidelines that providers may reference, and sometimes may even share with the patients to explain why and how we choose to do the monitoring. 

Katherine:

When treating more advanced endometrial cancer disease in general, are the treatment options different than if you were treating somebody who had stage I or stage II, for instance? 

Dr. Ko:

Sure, great question. So, for some patients with, say, stage I, surgery alone is enough. 

For some other patients, subcategories of stage I, where we call them more high/intermediate-risk patients, they’re stage I, but there are a few features about their pathology that might make them slightly higher risk for recurrence – in those cases, we might consider a little bit of radiation after surgery, what we call adjuvant radiation or what we call radiation vaginal brachytherapy. Just three short treatments of a little bit of radiation to the top of the vagina has been shown to possibly decrease chance of recurrence in that area with very minimal side effects. 

So, that would be more commonly in line with stage I. There are some subtypes that can still be what we call high-risk, even in stage I/stage II uterine serous carcinoma, uterine carcinosarcoma. In those cases, we might also recommend chemotherapy along with some vaginal brachytherapy following their hysterectomy, so that’s the early stage. 

And then, with the advanced stage, yes. So, frequently, it’d be surgery first to secure the diagnosis, followed by some type of – it might be primarily chemotherapy, or it could be combination chemotherapy with radiation. And over time, I would say our paradigm for what we use for chemotherapy and radiation has changed a little bit. 

If you go back a couple decades, I think radiation was used a lot – whole pelvic radiation, even just without any chemotherapy. And then, we then had more data from research clinical trials, GOG-258 or PORTEC-3, that then had given us evidence that perhaps doing chemotherapy with some combination of radiation is going to be beneficial, or even moving towards primarily radiation could be a very good option in terms of long-term benefit/long-term survival. 

And, of course, that brings us to the present day, those two trials that I mentioned from ASCO, the GY018 and the RUBY, now bringing in the immunotherapy component to the chemotherapy, so there has definitely been an evolution to managing advanced stage. 

Katherine:

Yes. Dr. Ko, what goes into determining a treatment approach for an individual patient? Is there key testing that helps guide a patient’s prognosis and treatment options? 

Dr. Ko:

Absolutely. So, I think the key pieces of information come from several sources. First, we do take the whole patient into account, like baseline health, baseline function, meaning every day, how active are you? Are there limitations to your daily activities? Looking at baseline health conditions, what we call comorbidities. Are there other health conditions, like diabetes, heart conditions, lung condition, kidney conditions, that could really impact a patient’s overall health and wellbeing? That is always part of it, number one. 

Then, we look specific to the cancer details. So, from all the pathology information, biopsies, followed by a surgical staging procedure, what exact stage, what exact substage, and we might even look at other unique features. Was there cells that got into the lymph vessels, the lymph nodes? Are there other just features from a pathology standpoint that are important, like the – I talked about microsatellite status, microsatellite instable versus microsatellite stable. 

Those are all information we can gather from the tumor tissue itself. That then kind of tailors our therapy. And then, like I was saying, now we’re going into this molecular era where we can actually take that tumor tissue and even do more expanded testing on it. 

So, I think it’s worthwhile to talk to your provider and say, “Hey, would it be worthwhile to send my tumor out for expanded testing, whether it’s done at your institution, at a specialized lab, or whether it’s sent out to a company that does expanded testing?” Because then, they might be able to test for 500 different genetic signatures, a much more broad panel, but that might open the door for opportunities to say, “Hey, you actually do have a very unique signature, and maybe it is worth tailoring your therapy even further.” 

So, I think these are very important questions to have with your provider, and these pieces of information can help guide the prognosis. I think we’re always asking what does this mean long-term, and I think when we have all these individual pieces of information, we can then give guidance on that.  

Katherine:

Well, that leads me into my next question. I wanted to get your point of view on why is it important for patients to engage in their care and their treatment decisions? 

Dr. Ko:

Right. I think that it is so important. Medical treatments, I think, do work the best for the patient when the patient is truly an active participant, and what I mean by that is I think we can really understand the patient if there’s a conversation, there’s a mutual discussion, and I think every patient has unique circumstances, has unique goals, has…whether it’s just the daily whatever responsibilities, or just either health or non-health concerns that they have, we want to be able to find a treatment that fits the patient, and we realize that one treatment doesn’t fit all. 

And so, the more, I think, that there is this mutual discussion, mutual understanding, then there’s a mutual decision treatment plan that is made, and there’s the more ability to modify that plan when – if you realize, oh, maybe we can tailor it, maybe we try one thing, and maybe we realize we got to change a little bit.  

And, I think that with a cancer condition, it is a journey. It is not just a one-time thing. It really is a journey, and I think that the more a patient can participate throughout that journey, I think the better the outcomes for the patient, and honestly, the better the treatment course will be for everyone participating. 

Katherine:

Why should a patient consider finding an endometrial cancer specialist? What are the benefits? 

Dr. Ko:

So, I think naturally, an endometrial cancer specialist is a provider who spends more time thinking about the disease, reading about it, looking at what’s the newest research studies that are coming out, what are the available clinical trials here, locally, regionally, or nationally, what are other support services available for the patient in the space. 

And, of course, probably the folks that do the most surgeries gear towards endometrial cancer patients, and so, I think just working in that space naturally then brings more resources and more opportunity for the patient to kind of really know what’s out there, what is the newest, and I think that really benefits the patient. 

Katherine:

Thank you for sharing all this information. I’d like to close with your thoughts on the future of endometrial cancer care. Are you hopeful? 

Dr. Ko:

Yes. I think that I’m especially hopeful, especially within these last even few years, of where our field is going. I want to say I think there’s so much more that needs to be done.  

I don’t think we’re ready to close the books on endometrial cancer. I think this is just a wonderful opening of a chapter where we’re seeing many more therapies come about. I do think that something that is concerning is that we are seeing more cases of endometrial cancer being diagnosed – yeah, so it is absolutely true. There is very robust data that is collected by our CDC and cancer registry in the country, and it is showing that there is actually a rising incidence, that the number of endometrial cancer cases in this country is actually increasing over time, and it has – 

Katherine:

Why is that? 

Dr. Ko:

It’s a great question. 

Katherine:

Nobody knows – the data doesn’t include that information? 

Dr. Ko:

I think there’s definitely some information, there is definitely information out there. I think some of it – and this is not all of it – I think some of it is related to the increase in obesity and the increase in average weight over time, and this metabolic condition to some degree, I think, does stimulate potential risk for endometrial cancer. 

However, that is not the only reason, and what is concerning is that what we’re seeing is there’s a specific rise in subtypes of endometrial cancer in certain populations, particularly the Black and Hispanic patient populations, and we’re seeing a rise in the most aggressive types of endometrial cancer in those patient populations. I think there’s a lot of research going on right now in that to try to understand why. Is it just because we’re picking it up more? I don’t think that’s the bottom line. 

And, I think what we’re also realizing as we’re studying these various tumor types of endometrial cancer, they are driven by different biology. So, I think to some extent, the ones that are more maybe related to obesity or hormones and all may be slightly different – not completely separate, but that there is underlying different genetic basis for some of these cancers developing, and whether that’s a combination of underlying genes, environment, exposure, or all of the numerous factors, we just know it is happening, and so, it really is critical in my mind that the awareness and the focus and attention on endometrial cancers is really there, that we really think about it, that we share the information as much as possible, and that we can really then come to better – have more opportunity for treatments, be able to diagnose it sooner, be able to have more opportunities to treat it, and honestly, have better survival and outcomes for our patients. 

Katherine:

Dr. Ko, thank you so much for joining us today. You’ve given us so much information. 

Dr. Ko:

Thank you. It was my pleasure. 

Katherine:

And thank you to all of our collaborators. 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 endometrial cancer and to access tools to help you become a proactive patient, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for joining us. 

Becoming an Empowered and [ACT]IVATED DLBCL Patient

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the diffuse large B-cell cancer (DLBCL) community. DLBCL treatment options are ever-increasing with research advancements in treatments and testing, and it’s essential for patients and families to educate themselves with health literacy tools and resources on the latest information in DLBCL care. With this goal in mind, PEN kicked off the [ACT]IVATED Diffuse Large B-Cell Lymphoma (DLBCL) program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in DLBCL care.

The [ACT]IVATED DLBCL program is aimed at newly diagnosed DLBCL patients, yet it can help patients at any stage of disease. The initiative aids patients and care partners stay abreast of the latest options for their DLBCL, provides patient activation tools to help overcome barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with cancer.

Diffuse Large B-Cell Lymphoma Disparities

Clinical trials are the primary way to forge DLBCL research and treatment advancements. Yet Black and Hispanic patients have been subject to clinical trial exclusion criteria at a higher rate than white patients. A recent DLBCL study showed that levels of lab test criteria of platelet count, hemoglobin, neutrophil count, bilirubin, and creatinine was responsible for the exclusion of 24 percent of patients who applied for clinical trial participation. And Hispanic and non-white DLBCL patients were more likely to be excluded from trials based on these lab test values – a clear disparity in DLBCL care.

Dr. Shah's [ACT]IVATION Tip

Access to specialized DLBCL care and clinical trials are important for all patients. Cancer patient Lisa Hatfield interviewed Dr. Nirav Shah, Associate Professor at the Medical College of Wisconsin. He explained about the barriers to care that some patients experience. “…I think that just simple geography is an issue that creates accessibility and impacts the type of care that a patient is able to get. I think beyond that, there are obviously economic factors that drive a patient’s ability to get specialized treatment. Do they have money to afford the gas to get to a larger center? Do they have the resources or the support system available to get a complex therapy where you would need those treatments, especially for relapsed disease? And then I think there are always going to be racial factors and accessibility issues that happen, where patients aren’t referred in time or patients aren’t getting necessarily the best care that they can.”

Solutions for Improved DLBCL Care 

Dr. Nirav Shah shared about the impact of clinical trial participation. “We wouldn’t have CAR T if hundreds of patients didn’t go on these clinical trials and be willing to be a subject and go through a treatment that was at the time undefined and without knowing how efficacious it was going to be.…clinical trials are important because without patients participating in clinical trials, how can we do better?”

In order to improve and refine DLBCL treatments, more research must be carried out. Dr. Nirav Shah shared where things stand with DLBCL types and how optimal treatments may be found in the future. “…there’s something called the germinal center phenotype. The other one is called the activated B-cell phenotype and prognostically, these sort of behave differently. Currently, we’re treating them the same, but we’re hoping that in the future, we’ll actually have algorithms that are more refined so that they are giving the best treatment for each subtype.” 

“So I know that in the world of diffuse large B-cell lymphoma, we have lots of great treatments, which is the exciting part for me. My biggest concern remains that not all of those treatments are accessible to all the patients that they need them, and I think we all need to do a better job of educating our community, of making people aware that these options are available, and then also facilitating patients who have less money, patients who have less resources to be able to provide them what they need to be able to get the treatments that are best for them.”

Healthcare providers are available to help DLBCL patients. Make sure to ask about a phone number for you or your loved one experiences concerning side effects. Dr. Nirav Shah explained the importance of staying in touch with the care team. “…call us. Let us know what’s going on. We can’t help you with your symptoms if we’re not aware, and we don’t mind those phone calls because we want to help patients through that journey.”

Dr. Shah also shared his perspective about DLBCL treatment advances and how hopeful he is about the future of DLBCL treatment. “…there have just been incredible advances, not just in chemotherapy, but immune therapy and targeted therapy, and so the goal is to keep getting better. I see a future where more and more patients with diffuse large B-cell lymphoma are cured in the front line, and more and more patients are cured in the second line.”

[ACT]IVATED DLBCL Program Resources

The [ACT]IVATED DLBCL program series takes a three-part approach to inform, empower, and engage both the overall DLBCL community and patient groups who experience health disparities. The series includes the following resources:

Though there are DLBCL disparities, patients and care partners can take action to educate themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to assist in your DLBCL care for yourself or for your loved one.

[ACT]IVATION Tip:

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a DLBCL cancer patient, or caring for someone who is living with it, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

PODCAST: MPN Specialized Care and Technology: Digital Health and Symptom Management

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Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Dr. Krisstina Gowin and Dr. AnaMaria Lopez discuss technological interventions in MPN symptom management, telemedicine limitations and the importance of connecting with an MPN specialist. 

See More from MPN TelemEDucation

Transcript:

Lisa Hatfield: 

Welcome to this Patient Empowerment Network Program, I’m your host Lisa Hatfield. In this unique program, we explore cancer care and technology, specifically the importance of specialized care in myeloproliferative neoplasms, MPNs for short, and the role of digital health in symptom management. Today, I’m joined by two incredible experts, Dr. Krisstina Gowin is a hematologist, oncologist treating MPNs. I’m gonna shorten that, simplify it, treating MPNs. Dr. Gowin is Assistant Professor of Medicine at the University of Arizona. And Dr. Gowin it’s such a pleasure to connect with you.

Dr. Krisstina Gowin: 

Oh, it’s such an honor to be on today and connect with you all. Thank you so much for having me.

Lisa Hatfield: 

Also joining us is respected oncologist, Dr AnaMaria Lopez, Professor of Medical Oncology at Sidney Kimmel Cancer Centre, Thomas Jefferson University. Dr Lopez is a telemedicine pioneer as the founding medical director of the Arizona Telemedicine Program. Welcome, Dr Lopez, thank you for being here.

Dr. AnaMaria Lopez: 

Thank you so much. So looking forward to the discussion.

Lisa Hatfield: Thank you. So, Dr Lopez, I’d like to start with you to talk about cancer care and technology and how far we’ve come with technology and cancer care. We’ve made a fair number of strides in cancer care as they relate to digital health. Can you speak to that a bit?

Dr. AnaMaria Lopez:

Sure. I always say that the COVID pandemic allowed us to advance telehealth in a couple of months what probably would have taken 70 years. So we went from maybe 10% of the visits being done through tele to 90% plus. So a huge, huge change, and a lot of lessons learned, both in the, how do we do it clinically as well as how do we integrate this? How do we integrate this into clinical trials and to move beyond? We really thought telemedicine and really thinking telehealth because there are so many technologies, so there could be monitors, there could be… A lot of us were doing work in patient-recorded outcomes, how do you integrate that? How do you make it easy for patients to use this? And maybe it’s not simply the patient, but it’s also the patient and the caregiver who can help with this reporting. What are really the implementation efforts that need to be done? I could go on and on because there are so many lessons learned and it really shook things up. So people are thinking of this as a new technological revolution. So technology plays a big role in care and certainly a very big role in cancer care.

Lisa Hatfield:

And just out of curiosity, Dr Lopez, do you have a lot of your patients who still continue to see you via digital health or telehealth, who prefer that?

Dr. Krisstina Gowin:

Yes. Yeah. For example, in some of the psychiatry literature, which I think is a little bit unexpected ’cause you think psychiatry is such an intimate interaction. Well a lot of patients actually feel safer when it’s digital, when it’s through tele. So yeah, I do. And we were talking earlier about doing integrative medicine, and almost all of my integrative medicine patients, we do at a distance. I really think of it as it’s a way to bring back the house call.

Lisa Hatfield:

Yes. Well, thank you for that overview, Dr Lopez. So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for Dr Gowin, can you give us an overview of the impact that Covid-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin:

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1500 MPN patients. And they asked questions like, how many of you are actually having telemedicine? And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.

Lisa Hatfield:

Thank you for that, Dr. Gowin. So you brought up a really good point, and this is a great segue to talk about integrative health. So I have multiple myeloma, and of course that comes with side effects from the different therapies and symptoms of their own. We have a great integrative health center at our cancer center here locally where I live, and I’ve used it for acupuncture for some of my symptom management. I’ve also watched you on different platforms, through webinars and patient support groups where you describe different integrative health techniques and that type of thing. So I’m wondering… Two questions. The first part is, what symptoms do MPN patients face the most? And then how can they use integrative health to do that, particularly as it relates to telemedicine? Are there telemedicine options for integrative health? I suppose things like acupuncture, maybe not, but other types of integrative health, and can they get a consult for integrative health? Can they even go as far as getting a consult? So if you can answer those questions, the symptoms they face, how to use integrative health, and if they can get a consult for integrative health, that would be great. We’d appreciate that.

Dr. Krisstina Gowin:

Yeah. Well, Lisa, I wanna take a moment just to validate your journey that you’re going through and to congratulate you for your self-advocacy to go look for those integrative therapies to support yourself. And for MPN patients, I will say that it’s a really unique group, and so all cancer patients experience symptoms, but in myeloproliferative neoplasms, it’s really kind of this heterogeneous what we call a symptom burden. And so most patients will experience fatigue about 80% of MPN patients. But then beyond that, there’s really a whole slew of different sequelae that can be associated with the disease, which you may or may not think about when you’re thinking about MPNs, such as psychosocial issues, sleep issues, sexual issues.

And then we have kind of the classical issues that happen with MPNs, such as dizziness, but we talked about the fatigue, bone pain, itching, abdominal discomfort from an enlarged spleen and early satiety, or feeling full quickly. It’s really a huge symptom complex, if you will. And we now have validated measurement tools to better understand those. It’s the MPN symptom assessment form, which has really, I think, revolutionized how we look at MPN. It’s no longer just treating the blood counts. We’re treating the patient as a whole, and even within our NCCN guidelines, kind of how we as oncologists go through the algorithms of how to change therapy and how we look at patients. We now have symptoms in there. So even if blood counts are controlled, we may change therapies or even do a bone marrow based on symptoms alone. So symptoms are a huge thing in MPN. So getting to your second question for integrative health.

So I think that MPN… The patients in the community are really early adopters for digital engagement, which is fantastic. Everyone’s very engaged and I’ve had the opportunity to work on meditation apps, yoga apps, a wellness based app here from the University of Arizona, and patients just really accrue fast. Everyone’s so excited. And most of these, though, were very small kind of pilot trials, looking at feasibility, can’t we really do these things? But most of them as well are showing some impacts on depression, anxiety, sleep, and total symptom burden. So I do think that these modalities through digital platforms certainly can make a difference on the symptoms. And we’ve seen that with meditation. We’ve seen it with yoga and we’ve seen it with a seven domain wellness app. And is it the digital engagement? I don’t think so.

I think it’s likely the integrative therapies that they’re receiving through that platform, right? We know meditation works, we know yoga works, perhaps not so well in MPNs. We need to build that evidence base, but other solid cancers, we know those interventions really work. But it’s wonderful to get that kind of early data, say it not only works, but it also works when you’re doing it at home, when you’re doing it on a digital platform. And so I would encourage all patients listening to this to, yes, look at what’s around you, what are the resources, what are the clinical trials? Looking at these different digital modalities for integrative medicine, but also to go get an integrative consultation.

And as Dr. Lopez already had mentioned, she does all of her integrative medicine via telemedicine now, which is fantastic. And so you, it’s really, it’s that you know, your fingertips. You now have access to wonderful oncologists like Dr. Lopez to guide you in this journey. And the journey is not only allopathic western medicine, but it’s treating you as a person, you as a whole symptom complex. And that’s really what integrative medicine aims to support you through.

Lisa Hatfield:

Thank you for that. Dr. Gowin. So you talked about an app that patients can use. Is this app accessible to any patient or is it just within a trial or a study that you’ve done?

Dr. Krisstina Gowin:

No, it is widely accessible. It is free, even better. [laughter], it’s called my Wellness Coach. And that’s…

Lisa Hatfield:

I’m writing that down. Okay. [laughter]

Dr. Krisstina Gowin:

Yeah. Yeah. It’s really wonderful. Many domains of wellness. It’s based on motivational interviewing and smart goals. It gives you little reminders of, hey, and you set your own goals, which is wonderful.

Lisa Hatfield:

And what types of interventions then does that contain? Does it have things like you said, meditation and does it have a yoga program for patients? Or what types of interventions?

Dr. Krisstina Gowin:

Not quite yet. I think that that’s what we aspire to is really this multidimensional intervention. It’s not really an intervention. It’s looking at your life. It’s saying, “what are you eating? What are your nutrition goals? How are you moving? What are your exercise goals?”

How is your resiliency? How is your spiritual health? How are your relationships? And so it’s asking all of these domains of what our wellness is and helps to identify where perhaps you would like to devote more time and energy to, and also gives some resources and education around each of those domains and why they’re so important. But you set your own goals and then…

Lisa Hatfield:

That’s great.

Dr. Krisstina Gowin:

You’re accountable for your goals.

Lisa Hatfield:

Great. Well, thank you so much for that information. And you mentioned that Dr. Lopez also does her integrative health via telemedicine. So I’m gonna ask Dr. Lopez, can you speak to that a little bit more? How do you do that with patients? Do they just contact you and set up an appointment for an integrative health consult or appointment? And do you conduct some of that yourself or do you send them to particular resources in the community?

Dr. AnaMaria Lopez:

Sure. So, yes, patients can make an integrative oncology appointment directly. I really like to do the consults through tele simply because I can… As I was mentioning, it’s like a virtual house call to really get a sense of the patient. Often a partner, significant other, caregiver might be present as well and as we know there’s the survivor and there’s the co-survivor. So including both can be very helpful to some people and I think the initial intake… Again as Dr. Gowin was saying it depends so much on what the person wants to do. So the first opportunity for coming together is simply, where are you? What are your goals? What’s important to you? And of the panoply of options, which might be the easiest or the one that you are most interested in.

And so depending on what it is we might work together, we might also bring in others if the person is really interested in making lifestyle changes, let’s say related to nutrition. The person might work closely with a nutritionist for some period of time and then come back and we’d come together and reassess. You mentioned the acupuncture and you can’t do acupuncture at a distance, but you can certainly teach people about the points and consider acupressure for certain points. So there’s so many ways to engage and interact, but yes, I think like a lot of medicine, it’s a team-based approach.

Lisa Hatfield:

Great, thank you. Dr. Lopez. I do have to say with acupuncture, one of the side effects of a lot of the cancer medications is neuropathy. And a lot of patients like myself try every option, every pharmacological option, whether it’s gabapentin or something else, and they don’t work an acupuncture for me anyway, personally. I had a significant reduction in the painful neuropathy… Not so much in the tingling, but a significant reduction that, so I am very strong advocate for integrative health. So thank you for explaining that a bit more and as long as we have you on Dr. Lopez, can you also speak more broadly to innovative telehealth tools that are making an impact on symptom management and overall cancer care?

Dr. AnaMaria Lopez:

Sure. So one of the things that we know, is that for example, people have appointments every three weeks, or they have appointments once a month with the oncologist, and a lot can happen in that time. So setting up systems that are assisted by technology, so that patients can report their symptoms in real time can be very helpful. And some of this may require… It may not be a common way where the person may be familiar going to a computer or going to their phone to kind of say, “This is how I’m feeling.” So that may require some engagement education, but often regardless of age, regardless of background, people find that really easy and find that so helpful to be able to say, “Oh, was it two weeks ago that I had that?” As opposed to just saying, “Hey, I just had this,” and then it can happen anytime day or night that the patient can report. And that way there’s… It’s just so helpful to have an intervention in real time.

The other part that’s good is that often some of these systems can kind of track. So we can look at it together and say, “You know what? Your fatigue tends to be a couple of weeks after therapy, so how can we either prepare for that?” Or just to have the reassurance that, “Yes you have that depth, but it gets better and you get through it.” So being able to look retrospectively and identify that can be helpful and I think also just the ease for people to be able to connect with multiple specialists, sometimes to have multidisciplinary visits where not only does the patient meet with everyone, but the patient can see that we are all meeting and interacting together. So all of those are incredible tools, one of my favorites though, one of my favorites is patients who are in the hospital and patients who are in the hospital a long time, on some occasions. So and even if a person’s not there a long time, it can feel like a long time, so to use the technology, not just to connect the patient, the healthcare team, but to use the technology to connect the patient with his or her family. And I think especially… I mean, a lot of people have smartphones, but it’s using your minutes, sometimes the internet may not be so strong. So to use the technology that would be used for the clinical piece to have that available in the inpatient setting so that patients can feel connected.

Lisa Hatfield:

Yeah, that’s a really great thought that you brought up, too. I know when the pandemic was in full swing, but patients were starting to go back into the office to see their provider. For me, I was not allowed to take my husband in with me, so I went in alone. I was far enough along in my journey. I didn’t necessarily need a care partner with me, but some patients do, maybe a newly diagnosed patient. So that is a really great point. Say, a patient has to come in by himself or herself, is that a technology they can use? Are you willing to let them use their phone to maybe FaceTime during that call or we had to use the actual physical landline because my phone did not connect, the signal wasn’t strong enough. But do you allow that during your appointments to have patients contact somebody?

Dr. AnaMaria Lopez:

Absolutely.

Lisa Hatfield:

Okay. That’s great. Yeah.

Dr. AnaMaria Lopez:

And also there’s pandemic, but there’s also… People live everywhere. So you could say their sun could be in California and I’m in Philadelphia and this way it’s okay, we’ll just beam them in.

Lisa Hatfield:

Yes. Well, thank you for that information. And some patients might be a little more reluctant to use telehealth or telemedicine. How can patients and their care partners feel more confident in voicing their concerns or communicating with their healthcare teams regarding any telemedicine options that are out there?

Dr. AnaMaria Lopez:

So you mentioned that I had been the founding medical director of the Arizona Telemedicine Program, and it was such a wonderful experience because skepticism and I really respected that. It was brand new and we had our system in the library. And the library, it was down in the basement, so it was very metaphorical. I would meet the new clinician at the entrance of the library. We would walk down the stairs together and often, the conversation was, “Okay, I’m doing this for you. I’m doing it one time. We’ll see how it goes.” And I was always so reassuring that if for some reason,’cause ultimately the clinician needs to feel comfortable, yes, this works, or no, it doesn’t. And if you have any doubt and you feel that you need to see the patient in person, you just need to say that, I need to see the patient in person. And inevitably as we’re walking up the stairs, “Oh, I know you called me because I was on call. Just call me anytime. Don’t call the on-call person”. This was great. I loved it.

So inevitably, people really like it and it’s good. You see the patient in their own environment, you can interact. You often get insights that you may not have gotten otherwise just because of where you are and how comfortable they feel in their own space. So I think, for me it’s the proofs in the pudding. Give people the opportunity, have the right supports and technology in place and often it’s a very positive experience.

Lisa Hatfield:

Great. Thank you Dr. Lopez. So Dr. Gowin, a couple of questions for you. Is technology playing a role in accelerating progress in MPN care?

Dr. Krisstina Gowin:

Oh, absolutely. And I think some of the ways that it really accelerates progress is pulling us together. So what we need to recognize is that myeloproliferative neoplasms truly is a rare disease and we just celebrated Rare Disease day. But there’s a lot of challenge in treating patients and progressing the field forward in rare diseases because you can’t do the big clinical trials. It’s hard to come together ’cause everything’s siloed and there’s just a couple patients here, a couple patients there in each practice. But with digital health and clinical trials that are offered on a digital platform, it pulls the nation together and even the world together. And we’ve seen that. I’ve done a international survey-based analysis and I had 858 MPN patients from 52 countries participate in that survey. And so that just shows how it pulls the world together. And for the web app that we just discussed, we had 93 patients say they were interested within three weeks, and within actually a week, we identified them all and then took three weeks to actually accrue them to the trial. So it really speaks to A, how MPN patients are digitally engaged and excited about these kinds of platforms. And then B, how effective it really can be to pull the groups together.

So yes, I think it’s… And that’s really how we’re gonna get progress is through these kind of interventions with a rare disease. And I hope it’s okay if we jump back to something you said, Dr. Lopez, which is, I think telemedicine is so so important to bring everyone together. And in particular, I see that on the transplant ward. And so in myelofibrosis, that’s the only curative therapy. And so many myelofibrosis patients actually go through allogeneic stem cell transplantation. And my goodness, that is a socially isolating experience. Patients are in the hospital, not uncommonly for at least 30 days and then have to be near their transplant center for three months, which often is away from home. So to pull in their support system, both through the acuity of the transplant themselves and then the couple of months after is so crucial to a successful transplantation. And I think through FaceTime and also the MPN support groups, which is very robust, the patient advocacy and the way the MPN network sticks together on a digital platform, I think is really unique and offers unique support.

Lisa Hatfield:

Thank you. And then what role does technology play in the disease symptom management, and in particular, in clinical trials too. What role does technology play with clinical trials?

Dr. Krisstina Gowin:

Well, I think it helps us through different, clinical trial accrual patterns, we can see who’s eligible where, so it helps us identify patients. It helps us to, understand the different kind of precision based medicine approaches so we can start to pool the data, say for, particular mutations… ASXL1 mutations. And so it helps us in the precision medicine aspect of clinical trials and now we’re looking at symptom management and how do we really integrate that. So large survivorship platforms like Carevive, if you’ve ever heard of Carevive, is now integrating our validated symptom assessment form into the Carevive platform. So now we can really collect that data and use that to mine it for potential kind of retrospective analysis. So it’s helpful for clinical trials as well as for our clinicians and clinics to really identify changes in symptom burden.

And just as Dr. Lopez was mentioning, that we can track these over time and it can flag and say, “Oh, your symptoms are changing, they’re increasing over time,” and maybe we need to be thinking about that. And so Carevive is really kind of a electronic medical record driven it’s really a healthcare driven platform, but now there’s patient ones too. And I just learned about this two weeks ago, I was at an MPN conference in Phoenix and learned about MPN Genie. And so MPN Genie apparently is tracking… Patients are putting their symptoms in and that’s shooting that information to the electronic medical record to their doctors. And so I think that’s fantastic, ’cause, we now get that information real time and we can change our clinical management, maybe bring that patient in sooner, maybe do a bone marrow earlier. We never would’ve identified that if it weren’t for those kind of digital engagements, so I think it’s a really exciting time. And I think we’re gonna see more and more of these new platforms and ways for different EMRs and smartphones to be communicating back and forth between patients and providers.

Lisa Hatfield:

Great. That MPN Genie is fascinating to me that we can have that real-time communication going back and forth as a patient, I would love that. So going back to clinical trials, I’m curious if you think that, technology has progressed enough, so in the past… Say I’m an MPN patient or a myeloma patient, I see a clinical trial or hear about one, I have to be onsite for that clinical trial for monitoring maybe for six months to a year. Do you think that technology has progressed enough that clinical trials might allow a patient to be at home, maybe in a more remote area and monitored remotely? Whereas in the past, that same clinical trial required them to be at the facility? Do you think that we’ve progressed to that point in some clinical trials?

Dr. Krisstina Gowin:

You bet. Yeah. I think COVID out of necessity has forced us to do that. And I have in my own clinical trials, even with pharmacologic clinical trials conducted telemedicine visits that were approved by the sponsor. So the paradigm is shifting, and particularly when it is oral therapeutics, I think that’s really accessible when they’re, IV subcutaneous, I think that has different challenges. Obviously you can’t do that as remote, but when they’re oral therapeutics are non-pharmacologic intervention, such as our integrative interventions, I think it really lands well to a more remote experience.

Lisa Hatfield:

Okay. And then would that require communication between the local oncologist and maybe someone like yourself, the investigator on that clinical trial to know what is going on with that particular patient? I assume that that communication would be ongoing?

Dr. Krisstina Gowin:

Absolutely. Always.

Lisa Hatfield:

Okay. Yeah. All right, great. Well, thank you for that information. So, Dr. Lopez, kind of a similar question for you. What are some examples of how technology is influencing cancer care right now?

Dr. AnaMaria Lopez:

Yeah, let me just add on the clinical trial question.

Lisa Hatfield:

Oh, Yes.

Dr. AnaMaria Lopez:

That there’s also the opportunity. Again, there were so many things that we thought, “Oh no, we just can’t be done.” But because of the necessity, necessity is the mother of invention, we do remote consent, so that was a big deal in the past. We can also do a tele visit ahead of the appointment, and screen for the cancer clinical trials, people travel large distances for studies and instead of traveling four or five hours, and then to be told, “Oh, actually you don’t meet the criteria.” To be able to do all of that at a distance, to get the records, to get the images, to review all that needs to be reviewed. And then to say yes, and not only yes, but we can also do your consent at a distance in some situations.

And then when you come, there’s actually the more substantive, perhaps even the treatment. There’s also a large, movement around hospital at home and that these patients that are eligible for that would be able… With digital support, be able to get hospital level care in some cases at home. So some of that may involve infusion, some of that… Again, but that visual connectivity and in the past you really had to kind of conceptualize it and it was kind of space aging to talk about it. But we now, we’ve all done FaceTime, so I think we all really can understand what it entails, so tremendous shifts and, we wanna try to keep that momentum going for our patients. So, I do think that, there’s so many ways that technology has impacted cancer care, even when we talk about the electronic record and patients accessing the electronic record and patients having the opportunity to go into a portal and to see their labs, to see their reports…

To be able to track their changes. All of that is really, really powerful. You know, patients with… The most common I think is patients with diabetes who track their blood sugar sometimes to the minute and they can say, “Oh, I ate that and now I see the impact.” So the opportunity for monitoring, the opportunity for also bringing in experts. So let’s say there’s a patient with a rare disease and the expert is elsewhere, there might be the opportunity to bring people together. We do tumor boards. That’s just part of what we do in cancer care. And also as many… There are health systems now so that it’s not one hospital, it’s multiple hospitals together where we can bring all of those folks together, bring in local expertise, regional expertise, national expertise, all for the patient’s benefit.

So there are so many ways that technology even something as simple as the note. Now this is something we experimented with and it’s still in experimentation phase, but there were these Google classes where you could interact with the patient and as I’m talking, the Google glass would record kind of the conversation and would come up with some sort of a structure for the note. So for what that encounter had been like. So there are lots of ways of how do you capture natural language in real time to really help the workflow, the documentation process. So I think there’s aspects to help the patient, to help the families, to help the clinical teams and to help everybody work together.

Lisa Hatfield:

Great. Thank you. And you talked about the patient portal and I’m one of those patients at fault of seeing a lab result before my doctor saw it and calling him or sending a message via MyChart saying, “Hey, this is going up. What’s wrong with this?” So I’m sure you don’t have to mention any names. I’m sure you’ve seen the challenges of, digital health too, are having that patient portable or portal accessible to patients. So anyway, just wanted to throw that out there that I’m sure that brings challenges to you. Also few little challenges here and there.

Dr. AnaMaria Lopez:

But at the same time, that’s so good, right? It’s so good that patients are engaged. It’s so good that you’re engaged. And I think as long as, we’re communicating that yes, you may see this before me, so you may have questions and then, we just get together and answer the questions.

Lisa Hatfield:

And thank you for saying that Dr. Lopez, because a lot of us patients who do that occasionally feel a little bit guilty for sending a note right away to our doctors. “We know you’re busy. We know you’ve already, you’ll look at those labs. If you’re concerned, you’ll call us or let us know”. And sometimes we jump the gun a little bit. So thank you for reassuring us that that’s okay, that that’s okay to do that. So we appreciate that. So Dr. Gowin, do you have anything to add on, how MPN care or just cancer care in general could change with different technologies? We didn’t touch a lot on things like artificial intelligence and that type of thing, and we can speak to that or, any other type of technology that you’re familiar with.

Dr. Krisstina Gowin:

Well, I think the artificial intelligence aspect is really going to change the paradigm again on how we’re designing, studies. And I think one of the biggest challenges that we have in myeloma and as well as myeloproliferative neoplasms, is to think about how do we optimally sequence our therapies to achieve best survival, right? And I think this is a wonderful problem to have. We have now not only one JAK inhibitor on the market, but several and more in the pipeline and several other therapeutic targets. And so now the question is which therapy and when do we employ it? So things like artificial intelligence will help us to answer that question with machine learning decision tree analysis, all of that is going to be answered through those kind of platforms. And so I think that is going to be a shift we will see in the next five years is many different machine-based learning algorithms to better understand those problems we cannot have tackled traditionally otherwise.

Sensors though is another one, right? And so a big thing in MPNs is not only addressing the blood counts and reducing risk of thrombosis, and to address symptom burden, but it’s really addressing lifestyle because it’s things like cardiovascular disease, stroke that really we’re worried about as some of the sequelae of having the disease and what we’re trying to prevent with therapeutics. And so even going back to this NCCN guidelines, it’s addressing cardiovascular risk factors as part of our core treatment goals. And so how do we really do that? And it’s really through lifestyle medicine and that’s where the sensors come in. And so now we have, these Fitbits and smartphones that connect to our Apple watches and we have Garmins and all these wonderful devices that are prompting us to move more, prompting us to be cognizant of our heart rate and stress response prompting us to meditate. And so I can envision those evolving over time and connecting to the EMR and being very seamlessly interwoven into our clinical trials. And we’re already doing that. In fact, we’re talking about doing one very soon in MPN patients. And so I think the sensors are gonna be another big way that we’re going to be integrating, into our clinical trials and symptom management tools.

Lisa Hatfield:

That’s fascinating. Thank you for that. And Dr. Lopez, do you have anything to add about other technologies and how they may affect cancer care in the future?

Dr. AnaMaria Lopez:

Sure. When Dr. Gowin mentioned the sensors, it just reminded me, we’re building this new building, patient care building and oncology will be there. And I did a tour recently, and we’re used to going to the doctor, you stop in, they get your blood pressure, they get your weight, et cetera. Here, you’ll walk in directly to your exam room and you check in at a kiosk, so you just kinda check in [chuckle] with a little robot kiosk, and then it’ll tell you where you’re going. You’ll go to Room 3, let’s say, and Room 3 will say, “Welcome, Lisa.” [chuckle] And so you know that you’re in the right place. And you’ll walk in, there’s your gown, you’ll sit in the exam chair, and the exam chair automatically is gonna take your vital signs. So it just seems, really these built-in aspects to the technology. And one of the things, again, what I just love about this work is that it’s a very interdisciplinary, multidisciplinary. And one of the projects that we were working on, which it ties into this, when I was in Arizona with the telemedicine program is we worked with the College of Architecture and with this concept of smart buildings.

So it’s kinda like that. Why should you do these different sensors that detect, but that it could also detect. You might walk into the room and you might be really nervous as you might be really cold, and it would detect that and it would warm the room for you. Or you might be coming in and be having hot flashes and it would just cool the room for you. So the technology has so much potential to really improve the patient experience.

Lisa Hatfield:

And that’s amazing to me. I think that would be incredible to walk into a building to have that experience, as long as it doesn’t take away the compassion and care I get from my providers. I am so fortunate to have extraordinary providers, so I don’t think it will ever take over that aspect of it, I think that is a fear people have, especially with artificial intelligence and that type of thing, I think it can only go so far. Can’t provide the humanness that’s required for patient care, so yeah.

Dr. AnaMaria Lopez:

Yeah. These are tools.

Lisa Hatfield:

Yes, that it. Great, well, thank you very much. Dr. Gowin, can you provide or share some examples of how telemedicine is influencing personalized medicine and MPN care, and how can MPN patients best advocate for themselves to get the latest in MPN care?

Dr. Krisstina Gowin:

Well, I think it’s going back to some of the conversations we’ve already had, is that now with telemedicine, you can really access academic centers no matter where you are. And so rural areas now can go to academic centers, very accessible without travel, and so what that lends to is more access to precision-based clinical trials, and very often now we’re doing next generation sequencing panels for patients with MPN. We’re looking at what are the genetic features of the disease and we may be accruing trials based on those genetic features. And so that kind of conversation really only happens at academic centers, and so I think it’s really allowing those that live far away, a few hours away, to really have those personalized and precision-based conversations. And then tying in again the aspect of integrative medicine. And then what is integrative medicine all about is personalizing your treatment plan, asking what are your goals, what is your lifestyle, what is your culture, and how do we really get you on a plan that makes sense for you, that is local for you and sustainable for you to really achieve your optimum wellness?

And so if I were counseling patients listening to this, I would say, start with the in-state academic centers and say, “What are the telemedicine services there? Is there an integrative medicine department there”? And then get a quarterback within that department and say, “Okay, this is the plan”, and then that quarterback can say, “Well, now let’s look local. What do you have? What are your resources there? Let me do some homework with you and hook you up with really evidence-based high quality providers to achieve your personalized needs in your local community”. And I think that’s how we’re really going to get all of our patients in a precision and personalized approach no matter where they live, and that’s again, the beauty of telemedicine and digital health.

Lisa Hatfield:

Great, thank you, Dr. Gowin. And I know we’ve spoken, both you and Dr. Lopez have spoken to all of the rewards of telehealth. Are there any risks or drawbacks that you see to telehealth or telemedicine for digital health?

Dr. AnaMaria Lopez:

The most important thing is to remember that the technology is a tool, and if the person feels that there’s a limitation, so for example, if the patient is seen and they say their heart is racing or skipping beats or something, now, there are ways, there are electronic stethoscope, so you can really do a full exam except for palpation through telemedicine. But not everybody has that even in a clinic, but certainly in our own home, we don’t have that technology. So if a patient is expressing a concern for which the clinician really feels that needs a closer evaluation, then that’s the right next step, so we’re not… The technology is a tool to help us care for people, and if it’s not all available right there, then we need to see the patient in person. So I think that’s the risk is just sometimes people may feel limited like, “Oh, well, I’m not really sure.” It’s okay, I’m not really sure I need to see you, or you need to go here or go there for the care.

And the other, which is a really big threat, is that part of the reason we did 70 years work in a couple months is because it was reimbursed and we’re reaching the end of the pandemic, the federal… And with that, the payers may go backwards. We all know that if that happens, we will go backwards in telemedicine. [chuckle] There will just be decreased, decrease use. And it may lead to people then going back to traveling four hours, waiting, only to be told, “Oh, you know what? There’s not this. This clinical trial doesn’t work for you.” So we don’t want to lose ground. And part of not losing ground is that we really need to continue to have advocacy around reimbursement.

Lisa Hatfield:

Thank you, Dr. Lopez. And I feel compelled, just to follow up with one more question regarding that, because I’m very passionate about this. With some of these rules and guidelines coming to an end, I know in my particular state that I will no longer be able to access my specialist. I see a myeloma specialist. We do not have any here locally. I can access a specialist via telemedicine. I will not have that opportunity. So as all of us know, there are disparities and there are financial disparities in cancer patients. There are racial disparities in cancer patients, there are socioeconomic disparities. Telemedicine has been a tremendous… Has had a tremendous impact on the care and the outcomes and the quality of life of so many patients. So as a patient and as an advocate, do you have any recommendations? Do I go to my doctor and say, “Okay, how can I move forward and still talk to my specialist, who’s out of state? Do I go to my state legislature? Do I talk to my insurance company? How can we get this to continue?” Because this has had such a significant impact on the quality of life and on the outcomes for patients, who otherwise, would not have been able to access that care.

Dr. AnaMaria Lopez:

Yeah, I mean, I think all of the above. Partnering with other advocates, the American Telemedicine Association has a map that kind of says where are all the shifting sands regarding the different rules and legislative changes. But I think it’s led us to a place, where we are all advocates and where physicians, nurses, patients, pharmacists, everybody in the same way that we do team-based care, that we do team-based advocacy and it’s all for our patients.

Lisa Hatfield:

Great. Thank you for that. Dr. Gowin, any last words that you may have about accessing specialists or telemedicine options?

Dr. Krisstina Gowin:

Well, I think we covered the basics, but I just wanna end with just how empowering the access to digital health interventions really is. And so I don’t think there is a one size fits all approach to every patient. So what I would encourage patients to do is just to really think, “How do I compliment my care? What am I missing? How do I achieve my best wellness? And how do I get those resources in my home to make them more convenient for me?” And to start doing some research and self-advocacy to really get those resources ’cause they are out there and in almost… In every domain, there is now a digital version that is accessible to you now.

Lisa Hatfield:

Thank you for that. So it is time to wrap up our program. I could ask you many more questions. From a patient perspective, it has been so refreshing to take a minute to understand how far we’ve come and to have a look at the exciting innovations ahead. As always, we appreciate all the new tools being added to the toolbox, and I am eternally grateful for Dr. Gowin and Dr. Lopez and all providers who are willing to come on these webinars and answer questions from patients. It is so empowering to us, and we’re so appreciative of your time and your energy and your expertise. So thank you so much for being here today. And just a reminder to all patients, to always consult with your medical team about what is right for you. Thank you again so much to Dr. Lopez and Dr. Gowin for joining us for this Patient Empowerment Network program. I’m Lisa Hatfield. Thank you.

Becoming an Empowered and [ACT]IVATED Lung Cancer Patient

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-expanding with new testing and treatments, and it’s vital for patients and families to educate themselves with health literacy tools and resources on up-to-date information in lung cancer care. With this goal in mind, PEN initiated the [ACT]IVATED Non-Small Cell Lung Cancer program, which targets to inform, empower, and engage patients to stay abreast of the latest in lung cancer care.

The [ACT]IVATED Non-Small Cell Lung Cancer program is geared to newly diagnosed lung cancer patients, yet it is beneficial at any stage of disease. [ACT]IVATED helps patients and care partners stay abreast of the latest options for their lung cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

How Can BIPOC NSCLC patients overcome discrepancies in the timelines of their diagnosis?

Lung Cancer Stigma and Disparities

Lung cancer is unique in comparison to other types of cancer. Overcoming the lung cancer stigma in the U.S. that was partially created by TV advertising campaigns to quit smoking. Cancer patient Lisa Hatfield spoke with Dr. Lecia Sequist from Massachusetts General Hospital. Dr. Sequist explained lung cancer stigma. “…it all comes together to make people think that those who get diagnosed with lung cancer did something wrong to deserve it, and that’s just not true. Nobody deserves to get cancer of any type. And lung cancer patients do suffer this unique blame that is not necessarily placed on other patients with other types of cancer, it’s really very unique to lung cancer. And it can be harmful for patients in many ways, it can be harmful in interpersonal interactions, but it also leads to policies and the whole way that our care system is set up that disadvantages lung cancer patients compared to other types of cancer patients.”

Though smoking can sometimes lead to lung cancer, this isn’t true for all lung cancer patients. Dr. Lecia Sequist shared some of the data about lung cancer risk and what’s still unknown about lung cancer risk. “…it’s true that cigarette smoking is one risk factor for lung cancer, but it’s not the only one. And we don’t fully understand what all the risk factors might be, but we know that there are people who have smoked a lot in their life and never get lung cancer. And on the flip side, we know that there’s people who have never smoked or who maybe quit 30, 40 years ago and will still get lung cancer. And how do we know who’s at risk?”

Access to lung cancer screening can also vary across the U.S. depending on what state you live in. Dr. Sequist shared about this key difference. “Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform…and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.”

Dr. Sequist also shares how BIPOC lung cancer patients or other underrepresented patients can guard against care disparities. “You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone.”

About Dr. Lecia Sequist

Solutions for Better Lung Cancer Care

Patient education and empowerment are key pieces to receiving informed and optimal care. These efforts can take many forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer.

Dr. Lecia Sequist shared about the importance of learning about lung cancer information from credible resources. “A lot of people get lost in the terminology, the medical terminology. Don’t be afraid to ask questions or go to a website that is recommended, that’s been vetted by doctors to really have good quality information to help you understand what these terms mean. There’s also a lot of misinformation on the websites, that’s why you have to go to a site that maybe your doctor or your patient network recommends to make sure you’re getting accurate information.” 

And lung cancer patients and patient advocates can help continue advancements in lung cancer screening and treatments. Dr. Lecia Sequist shared advice for how to take action on behalf of patients. 

“Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer. And we have to take the stigma away from this disease. Nobody deserves to have lung cancer. It’s not something that people cause to happen to themselves, and they certainly shouldn’t be blamed if they are finding themselves in a position where they have lung cancer. So just spreading the word, lung cancer can happen to anyone, anyone with lungs can get lung cancer, I think can help start to change the perceptions.”

The use of artificial intelligence (AI) has led to improvements in lung cancer screening. Dr. Lecia Sequist explained how AI has advanced the detection of  lung cancer. “The computer looks at a different type of pattern that human eyes and brains can’t really recognize and has learned the pattern, because we trained the computer with thousands and tens of thousands of scans where we knew this person went on to develop cancer and this one didn’t. And the computer learned the pattern of risk.”

Patient empowerment sometimes means that patients must advocate for their best care, and Dr. Sequist shared advice about testing. “…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

[ACT]IVATED Non-Small Cell Lung Cancer Program Resources

The [ACT]IVATED Non-Small Cell Lung Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

Though there are lung cancer disparities and disease stigma, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

[ACT]IVATION Tip: 

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a lung cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

PODCAST: Updates in Prostate Cancer Treatment and Research | What You Need to Know

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With research evolving quickly, it’s more important than ever that people with prostate cancer take an active role in their care. Dr. Channing Paller shares an update on recent prostate care treatment advances, discusses essential testing–including genetic testing–and provides advice for self-advocacy.

Channing Paller, MD is the Director of Prostate Cancer Clinical Research at Johns Hopkins Medicine. Learn more about Dr. Paller.

See More From INSIST! Prostate Cancer

Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell. Your host. Today’s program focuses on helping patients with advanced prostate cancer insist on better care. We’re going to discuss the latest research, current treatments, and how patients can collaborate with their healthcare team on key decisions.

Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar.

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

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

Dr. Paller:

Thank you, Katherine. I’m delighted to be here today. My name is Channing Paller. I’m Associate Professor of Oncology at Johns Hopkins and the director of Prostate Cancer Clinical Research.

Katherine:

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

Dr. Paller:

Thank you for having me.

Katherine:

Dr. Paller, in June, prostate cancer researchers from around the world met to discuss their findings at the annual American Society of Clinical Oncology, or ASCO meeting, in Chicago. Would you walk us through the highlights from that meeting that patients should know about?

Dr. Paller:

Absolutely. We’ve had a exciting time for prostate cancer in June. So, I’d say, the first thing I would bring up is, the PEACE-1 trial was discussed again, and more data came out from that trial. That trial originally supported what we found, the STAMPEDE trial, to say, yes, we should add abiraterone to androgen deprivation therapy and chemotherapy in helping de novo metastatic patients live longer and do better overall. And it also, this time around, showed us that combining abiraterone (Zytiga) with radiation, plus or minus chemo, had patients do better. So, they had a longer progression-free survival, or metastasis-free survival.

And also, the neat thing was, patients had fewer local symptoms in the long run. So, it prevented catheters being needed later, prevented blockages. It prevented local side effects from their cancer, which was really terrific to know, because that helps with patients’ quality of life.

That was one of the main, personally. Go ahead.

Katherine:

Yeah, I was just going to ask, anything else?

Dr. Paller:

Yes. So, the second big headline, which is one of my dear loves, is all of the PARP inhibitor data. So, there were a couple trials presented, and this month has been terrific in terms of, there have been two drug approvals. So, let me talk through a couple of those.

So, one of the big ones that was presented at ASCO was looking at talazoparib (Talzenna) and enzalutamide (Xtandi) in patients with metastatic castration-resistant prostate cancer, and it showed that the combination of those two drugs helped patients do better than enzalutamide alone, in that setting. What was also interesting is a subset of patients with DNA repair mutations did even better.

June 20th, the FDA approved that combination for patients with metastatic castration-resistant prostate cancer with DNA repair mutations.

We also had a drug approval for abiraterone (Zytiga) and olaparib (Lynparza) in the same space of metastatic castration-resistant prostate cancer for patients with BRCA mutations. That was a more narrow approval, but it was still very important.

And what’s exciting here is, we’re really learning more about targeted therapy, precision medicine, for our prostate cancer patients. When I started treating prostate cancer patients back in 2005, the main drug approved was chemotherapy, docetaxel (Taxotere), and hormone deprivation therapy. And in the last almost 20 years, or 18 years, we’ve had 10 drug approvals, and we’re really starting to have multiple drugs approved based on people’s genetics.

Katherine:

That’s such promising news. I mentioned at the top of the program that our focus for this webinar is advanced prostate cancer. So, I’d like you to define that. What is advanced prostate cancer? And is any of the research you mentioned focused on this stage of disease?

Dr. Paller:

Well, advanced prostate cancer includes any prostate cancer that was extended outside the prostate, really, that’s spread to the nodes, even to the lymph nodes, to the liver, to the lungs, to the bones. And so, we have a lot of new findings, looking at this space, and that was a lot of what they showed at the ASCO conference.

The other thing we’re learning is that we really want to get genetic testing on everybody. And so, in addition to your regular, “How do you feel?” “What do your labs show?” “What is your PSA doing?”

We also want to get imaging, right? So, we want to look at imaging, in terms of, what did your CT and bone scan show? And nowadays, we’re moving into PSMA, or prostate-specific membrane antigen, PET scans.

And so, that’s the new main way people look at where their prostate cancer has gone, and help them decide, what is the best treatment for me? Is it to get surgery locally, or has it advanced now, and I really need to do hormone therapy and radiation, or some other combination of systemic therapy, meaning more hormones, or more chemotherapy, with targeted therapies such as radiation?

Katherine:

Beyond ASCO, Dr. Paller, are there other research or treatment advances that patients should know about? Anything other than what you’ve mentioned already?

Dr. Paller:

Oh, yes. So, the other headline that I was really excited about at ASCO is watching medicine adopt the world of artificial intelligence. There was a great abstract, looking at how we can use artificial intelligence to look up pathology slides.

So, in the past, we would always want to go to a top academic center to have your pathology reviewed by a top expert and make sure we were treating the right cancer, and make sure we really understand your risk. What we’re finding is, we can create biomarkers, and we’re understanding not just genetic, genomic biomarkers, but also pathology biomarkers, and age, and PSA, and risk, and comorbidities, and we can combine them all together and use AI to help us better stratify patients.

And so, although it’s early, I think this is going to be an explosion in terms of helping us better define risk for patients in advanced prostate cancer, and help them figure out, do they need intensification of treatment, or can we de-intensify treatment? Can we not cause as much toxicity, and they’ll do just as well? And so, I was really excited to see that data as well.

Katherine:

How can patients stay up to date on evolving research?

Dr. Paller:

There are many ways to stay up to date. There are nice summaries at ASCO. There are nice summaries through the Prostate Cancer Foundation. There are good summaries at each of the institutions with whom you work.

One of my favorite ways to stay up to date on precision medicine is one of these registries that I am co-leading, which is called the PROMISE registry. This is a wonderful opportunity which was conceived in the pandemic.

And so, it’s pandemic friendly, and that is called the PROMISE registry. And what you can do is go to prostatecancerpromise.org and sign up if you have prostate cancer. And you say, “Hey, I have prostate cancer. This is my address. Please ship me a kit where I can do saliva testing of my genes.” And once you get your tests sent in, they’ll send you a kit, you send it back, you’ll get an email, and you can go over your results with a genetic counselor.

And then, once you get enrolled in this program, it is really just a free information source. And so, you can learn more about the clinical trials around the country for patients with different mutations. And so, I love that as, whether or not you have a mutation and you’re going to follow with us for 20 years, because we’re going to offer you opportunities and let you be the first to know about new drug approvals, you can still hear about all of the new research.

And I think that’s a wonderful, free resource that we’ve done for our patients to help them understand more about what’s out there. Another opportunity to learn more about prostate cancer is the prostate cancer clinical trial consortium. They have a nice website looking at germline genetics, looking at diversity, looking about clinical trial design. And so, there’s lots of different places to learn more about prostate cancer.

Katherine:                  

Dr. Paller, what about clinical trials? Why should patients consider enrolling, and what are the benefits for them?

Dr. Paller:                   

I like to tell my patients that once you have metastatic or advanced prostate cancer, we’re not doing placebo on you. If we’re doing placebo, it’s the standard of care plus a new drug, and we want to know if the new drug in combination with the old drug is better than the old drug alone.

And so, I find those patients heroes, in one sense, for the future, right? They’re helping to approve the new drugs of the future, and I also find, oftentimes, those are the patients that do best, because they’re getting to try all of the new drugs of the future before they’re approved. And so, I will have patients that are, I call them chronic trialists because they’ll go through all my new drugs before they’re even approved.

And I love it, and they love it, because they do better than the average, because they’re exploring all of the new therapies. And so, I find those patients heroes, and I really appreciate their efforts. I would say, the most important thing about clinical trials is learning about them, right? And being able to ask the questions. “Well, what phase is that trial?” So, Phase I is really testing safety, and finding the right dose for patients. And so, that’s usually a small number of patients, and looking exactly at, does this work? Do we have a biomarker to follow? What’s the best way to use this new drug?

Phase II starts to look at efficacy, as well as looking at side effects. And so, with Phase II, we really look at, what is the effect? Is it better than what we expected? Does it help these patients – is it better than some of the other drugs?

And then, Phase III are usually large trials that are looking at FDA approval. They’re looking for registration with the FDA, getting approval, and being the new standard of care that’s paid for by insurance companies.

Katherine:                  

I’d like to back up a bit and talk about the treatments that are currently available. Let’s start with surgery. What role does that play in treating advanced disease?

Dr. Paller:                   

Surgery is one of the key tools that we use when we’re trying to cure prostate cancer when it’s localized, or just starting to spread. But if it’s too advanced, meaning, spreading to the lymph nodes, we usually don’t recommend surgery. So, surgery is usually used for curative intents, although there is a trial ongoing now, looking at the same question of, is adding surgery to systemic therapy helpful in terms of long-term cure rate, in terms of decreased side effects later, and local symptoms later?

And so, we are asking that question. That is one of the ongoing clinical trials that we’re looking at right now, as a group.

Surgery is terrific. Radiation is terrific. Really working with your team to understand for you, what are the side effects that you would undergo? What are the risks and benefits of each modality that you would like to, or that you’re willing to tolerate? And so, I think the differences between surgery and radiation, for curing patients, are really something that you need to discuss with your provider. The risk of erectile dysfunction, the risk of the local symptoms from the radiation, the risk of having bleeding from your bladder, the risk of bowel problems. Those are all things that that you – urinary incontinence – that you need to discuss with your physician.

Katherine:                  

What are other options that are available now, for patients?

Dr. Paller:                   

For curative intent, the main two treatment options are surgery, radiation. Many people for very localized disease are trying other therapies, such as cryotherapy, and more focal therapies. But really, for curative, the standard is surgery or radiation. And as it gets more advanced, circling back to advanced prostate cancer, we are learning that combination therapy is better. So, adding pills like abiraterone, adding systemic therapies, help patients do better.

So, there’s a big, long list of therapies upfront that we use for metastatic hormone-sensitive prostate cancer. There’s abiraterone, there is apalutamide (Erleada), there’s enzalutamide, and now, darolutamide (Nubeqa).

And in fact, in fit patients that can tolerate chemotherapy for metastatic high-volume prostate cancer patients, we always recommend triple therapy, either with abiraterone, docetaxel, and ADT, or with darolutamide, docetaxel, and ADT, and these patients really seem to do better for longer. The other thing I would add is the PEACE-1 trial, which looked at abiraterone and docetaxel, found that patients would do best by adding growth factor support. And so, that is recommended.

The other thing I want to point out to patients is, I know we’re all eager to get started when we find out we have a diagnosis of metastatic prostate cancer, but sometimes, these therapies are quite tough on the system when you have a lot of cancer in your body, and my recommendation to everybody is, one thing at a time.

So, start the hormone therapy and wait at least 30 days, and in fact, in the PEACE-1 trial, they waited 45 days, right? That allows the testosterone levels to fall, it allows you to adjust to the side effects of hormone deprivation therapy, and it allows your body to be ready for the next line of therapy. And you can add the ADT to second line, such as abiraterone or daro during that time, but not adding the chemo all at once, that really makes a difference.

I find, unfortunately, when patients and their providers don’t follow those strict criteria, as they did in the trial, meaning they start chemo and abiraterone and ADT on day one, the levels of chemotherapy get higher in the bloodstream because testosterone regulates that, and we’ve published on that before. And they end up with terrible side effects from the chemotherapy, such as neutropenic fever, which means you end up in the hospital with a bloodstream infection and a fever, and more neuropathy, meaning numbness and tingling in your hands and feet.

And so, I really caution people to spread those therapies out over the first 90 days, and you’ll do better in terms of side effects, and just as well in terms of overall survival.

Katherine:

Where does hormonal therapy fit into the treatment options, and have there been any advances in hormonal therapy?

Dr. Paller:     

Yes. So, hormonal therapy is the mainstay of how we take care of prostate cancer patients, whether we do this with surgical castration, which is not done very often anymore, or we do it with an LHRH agonist, or we do it with an LHRH antagonist. So, that means that we can do it with medicines that block the signaling, but that tells your body to produce testosterone in various ways. What’s really neat is we’ve made advances, that there are now oral options for some of these therapies.

In particular, there’s a new therapy called Orgovyx, or relugolix, that is an oral LHRH antagonist that locks testosterone and allows us to stop prostate cancer growth. In addition, there are a variety of LHRH agonists that can be given as subcutaneous shots. 

Katherine:                  

Dr. Paller, let’s talk about what goes into deciding on a treatment path. First, what testing helps you understand the patient’s individual disease?

Dr. Paller:                   

Great question.

When I meet a patient, we talked about a few variables. First is, how do they feel? Are they in pain? Are they losing weight? Are they fatigued all the time? Are they able to do things that they enjoy, or not? So, that’s the most important, in terms of, how do they feel, and what are their symptoms?

The next thing we looked at is, what are their labs, right? We look at PSA, but we also look at, is the prostate cancer affecting their organs? Is it affecting their red blood cells, their platelets, their white blood cells? And very importantly, it tells us, by looking at their alkaline phosphatase, if it’s in their bones or not. And we also can look at their labs to see, is it affecting their liver or not. Another thing we monitor is their creatinine or kidney function. Is there a blockage of their important organs down there because the prostate cancer has grown? So, the labs tell me a lot about their body function, and making sure their body is still functioning well.

After we do how they feel, and what their labs are, we also look at imaging. And then, the previous years, we’ve always looked at a standard nuclear medicine bone scan, and also, a CAT scan. And nowadays, we’re really moving towards PSMA, or prostate specific membrane antigen, to help us really identify, at a much more sensitive level, where prostate cancer cells are expressed.

And after we do those main three key things, we start to look at diagnostic tests. We look at different ways of assessing what are their genes. So, one of the first things we do is looking at germline genetic testing to see, what were the genes they were born with? And can those genes help us learn more about their cancer, and how it might progress? And also, how we might treat it better if they have certain genes like BRCA.

The other nice thing about genetic testing, or germline genetic testing, is looking at, if they do have a genetic mutation, or a pathologic variant like BRCA, we are always, always telling families that they should get cascade testing for their familyright? So, if they have a mutation, we recommend that their family members get tested to make sure that they’re not at risk for a cancer. And so, we have them meet with a genetic counselor.

So, in addition to what you’re born with, we also want to know what your cancer has developed, because cancer cells are growing quickly, and they can develop a mutation. And so, we also test the cancer, get genomic testing of the cancer, to look for mutations that we can target with our multiple drugs that we’ve approved to target cancers in certain mutations. So, you have something called MSII, we have immunotherapy for you. If you have DNA repair mutations, we have PARP inhibitors for you, or even carboplatin (Paraplatin) can be added to target patients with DNA repair mutations as well.

And so, there’s a whole variety of tests out there by a multitude of providers, that help us really better understand your cancer.

Katherine:                  

And the treatment options, by the sounds of it.

Dr. Paller:                   

And the treatment options. Yes, there is. There’s a whole variety of it. Yeah.

Katherine:                  

So, what is personalized medicine, Dr. Paller? And how is it achieved?

Dr. Paller:            

Personalized medicine means many things to many different people. I find the most important thing is not forgetting the patient. The patient needs to be their own advocate, and have an advocate there with them, right? Because maybe the best treatment is chemotherapy, hormone therapy, radiation, etc., etc., but maybe you’re 92, and you’ve lived a good life, and you have heart disease, and you might not die of your prostate cancer. And so, overtreating people is just as dangerous as undertreating people.

And so, precision medicine is a whole variety of things, of looking at the whole person, looking at their genes, looking at biomarkers their cancers produce, and looking at what comorbidities they have, right? If you have really bad diabetes, maybe you don’t want me to add steroids to your regimen. If you have a seizure disorder, maybe you don’t want me to add insulin. I wouldn’t, because there’s a seizure risk. If you have various problems, we just need to take those into account and find the best therapy for each individual.

Katherine:                  

I think you’ve covered this, in a sense, but I’m going to ask you the question anyway. Why is it important that patients have a role in making decisions about their care?

Dr. Paller:                   

It is essential that patients have a role in their care so that they are taking ownership and being part of the team, to care for themselves, not to put extra weight or work on the patient, but really, so that they know they’ve made the right choice for them.

Understanding a patient’s priorities are essential. Some patients may not want the side effects of hormone therapy, and they may say, “Hey, I have oligometastatic disease, meaning I just have one spot to my bones, and I’m 80 years old. And Dr. Paller told me that the sub analysis of this triple therapy, new trial, showed that, I’m over 75, I may not benefit as much. And you know what? I don’t want to have the side effects of hormone therapy. I don’t want to lose muscle mass. I don’t want to have hot flashes. I don’t want to have erectile dysfunction.”

“I want to enjoy my life, even if it’s slightly shorter, and it might not be slightly shorter.” And so, I find, having a partnership with a patient to really understand their priorities makes life worth living more, right? So, maybe a patient’s priority is finding time with their grandchildren. Maybe a patient’s priority is getting a PhD. Whatever their patient’s priority is, it is important that we put that to the context of their whole being and helping them really find the best therapy for them, to help them do as well as they can, as long as they can.

Katherine:                  

I think this this leads us very nicely into the next topic, and that’s self-advocacy. While the goal of this program is to help patients insist on better care, there may be factors that impact their access. What common obstacles do patients face?

Dr. Paller:                   

The main obstacle for patients is insurance. Unfortunately, I find that it’s frustrating to not be able to provide patients with oral hormonal therapy if they can’t afford it, because they don’t have insurance, and it’s too expensive. But there are other challenges that patients face, right? If they’re young and don’t have childcare, if they have trouble getting time off their work. But I think one of the major problems is economics, and can they get the same care, and can they advocate for themselves, right? So, another problem is, if you are in a community practice, you might not have access to the top diagnostic testing.

And it’s really important that you advocate for yourself and get a second opinion at an academic center where you can get the best testing and figure out the best path for yourself. And sometimes, if patients are at sites where they’re seeing a generalist, they’re not going to get access to that, because that’s not standard at that hospital.

Katherine:                  

Yeah. Well, what is the medical community doing to help improve access?

Dr. Paller:                   

We are working hard on reaching out into the community. One of the other hats I wear is, I’m Associate Program Director for the Johns Hopkins Clinical Research Network for oncology. And one of my jobs is to find communities that want to open trials at community sites.

These aren’t our super complicated phase I trials. These are often simple Phase II or Phase III trials that patients can participate in, and really get access to new biomarker tests, get access to new treatments, and really be connected to the centralized knowledge that is available at academic centers.

And I think all of ASCO is doing this, I think all the Prostate Cancer Consortium is doing that, I think the PCF is doing this, and we really are – and I even think the drug companies are reaching out and educating primary care doctors, urologists, radiation oncologist patients.

There are a lot of programs we now do that are direct to patient education, so that we’re not dependent on whether or not the doctor has time to explain these things. And so, programs like this are really wonderful at keeping the patients educated and able to advocate for themselves.

Katherine:                  

What diversity in clinical trials? Is that an emphasis for the research community?

Dr. Paller:                   

Absolutely. I think that’s an emphasis across the board in society today.

We are eager to learn more about how patients with different genetic profiles, with different ethnicities, with different socioeconomic backgrounds, are reacting differently to different therapies. If you’re African American, do you respond differently to [treatment] with one study we looked at? If you have a different diet, are you going to respond differently to immunotherapy? And really understanding different demographics is really important to us at this time.

Katherine:                  

Are there resources that patients can turn to that would help them gain better access to healthcare?

Dr. Paller:                   

There are programs that are available either through your local community, or another one that has a nice patient centered education program is NCCN, or the National Comprehensive Cancer Network. They have summaries of your tumor type across the board, and how to best treat it.

They also have a list of experts that helped make those guidelines, so that you could reach out to those centers and know the main centers that are treating your cancer.

Katherine:                  

That’s great advice. Thank you. If a patient is feeling like they aren’t getting the best care, though, what steps should they take to change that?

Dr. Paller:                   

That’s a good question. So, being a self-advocate takes energy, when oftentimes, you’re tired and overwhelmed at your cancer diagnosis. And so, my heart goes out to all of those patients. Really, finding a second opinion, and finding an academic center or a large program that has a prostate cancer focused program, is helpful.

Or whatever your tumor or issue is, going to a center that is a specialist in that, for a second opinion, is often helpful, and can work with your local physician to help get you the care that you need.

Katherine:                  

That’s great information, Dr. Paller. Thank you. As we wrap up, I’d like to get your closing thoughts. How do you feel about the future of prostate cancer care? Are you hopeful? Encouraged?

Dr. Paller:                   

I am so hopeful and encouraged. We are exploding in the number of drugs we have. We are exploding in the number of opportunities and precision medicine drugs that we’re having. This is a wonderful time where we’re combining our understanding of genetics, and biomarkers, and AI, and pathology, and imaging, and I am thrilled.

I think we’re really going to be able to understand which patients should get which drugs without having so much toxicity. And such a high failure rate here, or how do I know who will get the best treatment?

“We’re just going to try it and see.” I don’t want to have to say that in five years. I want to say, “I know this will work, and I can control your symptoms and your side effects.”

And so, I am so excited about the future. I think we’re just making huge strides every day now, and I think this will be a whole new world in the next five years.

Katherine:                  

Dr. Paller, thank you so much for joining us today.

Dr. Paller:                   

Thank you so much, Katherine.

Katherine:                  

And thank you to all of our collaborators.

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 joining us. Thank you, Dr. Paller. Great information.

Navigating the Dual Nature of Social Media: A Patient Advocate’s Guide

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As an early adopter of social media, I readily embraced its power to amplify patient advocacy and connect with others with shared interests and goals.  From sharing stories online to building community and creating advocacy campaigns, I was an enthusiastic and passionate social media user.

However, as time has passed, I’ve seen a darker side to social media, giving me pause for thought. Online harassment, misinformation, and divisive behavior have become all too common. This harmful behavior can negatively impact both advocates and the causes we strive to support.

Even though I still use social media in my advocacy work and continue to teach and write about best practices, I now also warn against its downsides. The key to navigating the social media landscape successfully is knowing how to leverage the positives and stay vigilant about the negatives.

In this article, I will share ten tips to help you approach online interactions more mindfully and intentionally. By putting these suggestions into action, you can create a more meaningful and positive social media experience for yourself and others.

1. Become a trustworthy source of information

Help combat the spread of false information by being a reliable source of information. Double-check your sources and fact-check claims before including them in your online content. Take the time to research and verify any claims or statistics that you come across. Consult multiple sources and cross-reference the information to ensure its accuracy.

Transparency is also key when presenting information. Be clear about the sources you use, and provide proper attribution where necessary. Additionally, it’s equally important to educate your community about identifying and avoiding misinformation.  Equip them with the tools to critically evaluate content and sources before engaging or sharing it online.

2. Be mindful of privacy

Reviewing and managing your privacy settings is an important aspect of maintaining a safe and secure online presence. Before posting, think about the potential reach of your content and the implications it may have on your privacy. Regularly review and update your privacy settings on various platforms to ensure they align with your preferences. Take advantage of available tools and features that allow you to control who can access your information and adjust your privacy levels accordingly.

Protecting your privacy also extends to being considerate of others’ boundaries. Before sharing stories or experiences involving other people, obtain their consent. Respecting their privacy and honoring their wishes not only builds trust but also creates a respectful and trustworthy online environment.

3. Engage in respectful discussions and debates

Online conflicts can quickly escalate and derail meaningful discussions. Instead of engaging in heated debates, seek to de-escalate tensions and shift the focus back to the core issues. Refrain from responding impulsively to provocative comments or inflammatory posts. If conflicts arise, address them calmly and constructively. Privately reach out to the concerned parties to resolve issues, promoting a culture of problem-solving rather than public confrontation. Remind yourself and your community of the ultimate goal of your advocacy efforts. Keeping the focus on the cause itself, rather than personal conflicts or distractions, ensures that your message remains clear and impactful.

4. Cultivate digital empathy

Cultivating digital empathy means taking the time to understand and validate the experiences, emotions, and perspectives of others. It means engaging in respectful conversations, even when we disagree, and finding common ground where possible. Online platforms have become powerful tools for connecting individuals from all walks of life. However, the virtual nature of these spaces can sometimes lead to a lack of empathy and a disregard for the feelings and experiences of others. That’s why we must be intentional in our words and actions, always striving to create a safe and inclusive environment for everyone. By actively listening and showing compassion, we can bridge the gaps that exist and foster deeper connections within our digital communities.

5. Report harassment and hate speech

While it’s true that social media has brought people together in empowering ways, it’s equally the case that distance and anonymity have provided a breeding ground for cyberbullying and online harassment. Cyberbullying refers to harassment, intimidation, or harming others through digital platforms. This form of aggression can take various forms, such as spreading rumors, sending threatening messages, or sharing hurtful content. The distressing aspect of cyberbullying is that it can happen 24/7, even at home.

Take a stand against online harassment and hate speech. Report such instances to the platform administrators and encourage your community to do the same. Keep evidence of cyberbullying, such as screenshots or messages, to share when reporting the incidents to platform administrators.

6. Practice digital well-being

While online advocacy and engagement can be incredibly rewarding, it’s important to recognize the impact it may have on mental health.  Setting boundaries and defining your limits when it comes to social media usage is a vital aspect of self-care. One effective strategy is to schedule designated times for social media engagement. Set specific periods during the day or week when you will actively participate in online advocacy or engage with others on social platforms. By doing so, you can create a sense of structure and control over your digital interactions, preventing social media from becoming overwhelming or consuming excessive amounts of your time.

Taking regular breaks from social media is also crucial for maintaining a healthy balance. Unplugging from screens allows you to recharge, be present in the moment, and focus on other aspects of your life that bring you fulfillment. Dedicate time to engage in activities that bring you joy, whether it’s spending time with loved ones, engaging in hobbies, or immersing yourself in nature. By giving your mind and body a break from the digital realm, you can rejuvenate yourself and enhance your overall well-being.

Remember, self-care is not selfish; it’s an essential practice for maintaining mental and emotional health. Prioritizing your well-being allows you to be more effective in your online advocacy efforts and enables you to have a positive impact on others. So, while you continue to make a difference through online advocacy, make sure to also prioritize your own self-care and mental well-being.

7. Protect against cognitive overload

Every day we are bombarded with posts, articles, images, and videos on social media. In this saturated digital landscape, our brains are exposed to an unprecedented amount of information. And while it may seem beneficial to have access to endless content, there is a downside—a concept known as cognitive overload.  Moreover, the constant notifications and alerts from smartphones and other devices further contribute to this overload by interrupting our focus and diverting our attention.

To combat cognitive overload, it’s important to be mindful of our information consumption habits. Taking regular breaks from the constant stream of content can help give our brains time to rest and recharge. Setting boundaries and practicing digital detoxes can also be beneficial for our mental well-being. Additionally, focusing on quality over quantity when it comes to the content we consume can make a significant difference. Instead of mindlessly scrolling through social media feeds or getting lost in an endless loop of articles, taking a selective approach and seeking out high-quality, relevant, and reliable sources of information can help reduce cognitive overload. This way, we can ensure that we are engaging with content that is meaningful and valuable to us.

8. Guard against emotional contagion

The spread of emotions from one individual to another is called emotional contagion. It’s a fascinating aspect of human behavior that illustrates how we are wired to pick up on and mirror other people’s emotions, both in person and through our interactions on social media platforms. The celebratory moments, achievements, and acts of kindness shared on social media can evoke feelings of happiness, joy, and inspiration. On the other hand, the negative emotions that spread like wildfire on social media can have a profound impact on our emotional well-being. The constant barrage of bad news, heated arguments, and negativity circulating on various platforms can trigger feelings of sadness, frustration, or even anger.

When we are already feeling stressed or emotionally vulnerable, even a single post can evoke intense emotions within us. This immediate impact can leave us feeling overwhelmed or drained. Over time our emotional well-being may also be shaped by cumulative exposure to emotionally charged content on social media.

If you find yourself getting overwhelmed by the emotional content on social media, consider limiting your exposure. Set boundaries for yourself by allocating specific times of the day to check your accounts and then redirect your attention to other activities. Seeking out uplifting and positive content can help counterbalance the emotional experiences you encounter online. Follow accounts that promote kindness, motivation, and personal growth, and engage with content that resonates with your values and interests.

9. Nurture meaningful connections

Instead of focusing on accumulating a large number of followers, prioritize engaging in thoughtful discussions and meaningful interactions with others. Beyond just sharing content, offer support and encouragement to those in your online community. Acknowledge their achievements, lend a listening ear when they face challenges, and provide helpful advice when you can. Building these connections will not only enrich your online experience but also provide you with a support system that extends beyond the digital realm. These relationships can lead to collaborative opportunities, the exchange of ideas, and even friendships that can last a lifetime.

10. Foster inclusivity

While finding a community of like-minded individuals is appealing, it can also lead to exclusion for those who don’t quite fit the group dynamics. Experiencing such exclusionary dynamics on social media platforms can evoke feelings of loneliness, sadness, and a sense of not belonging. As responsible community leaders, it’s essential to be mindful of potential exclusion and seek ways to create more inclusive online spaces. Embracing diversity of thoughts, opinions, and experiences can enrich our online interactions and cultivate a more inclusive digital community. Whether it’s actively engaging with different perspectives, amplifying marginalized voices, or questioning our own biases, we can all contribute to making social media a more inclusive and welcoming space.

Conclusion

As advocates, we set the tone for the communities we work with. We can inspire and uplift others by cultivating an environment of respect, empathy, and support. Especially in a world that sometimes feels divided and polarized, cultivating kindness and understanding becomes even more important. Let’s work together to make the online world a better place, where compassion and understanding prevail, and where our collective efforts lead to meaningful change.

Managing Body Image Concerns During and After Cancer Treatments

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Experiencing changes to your body is typical for someone undergoing cancer treatment. Hair loss, surgery scars, weight loss or gain, struggles with movement and balance, sensitive skin, swelling, and changes in sexual drive are some of the most common changes people with cancer encounter in treatment.

We wish these bodily changes were simply a reminder of the strength and courage a person with cancer possesses as they undergo and complete treatment. But unfortunately, going through these changes can fuel body image issues.

Addressing any body image concerns you have is important because having confidence, high self-esteem, and a positive mindset are integral for getting through what is often a grueling treatment process.

The following tips will help you successfully manage your body image concerns and feel confident again as you navigate cancer treatments.

Feel Your Feelings

It’s difficult for many people to acknowledge their feelings and let them run their course, especially when they’re negative. But it’s essential to do so if you want to manage your body image concerns.

Ignoring how you feel and stuffing your emotions down only guarantees they’ll eventually come to the surface, most likely at a time you aren’t expecting them to. Instead, embrace what you’re feeling, whether it’s anger, confusion, or sadness.

When you’re aware of what you’re feeling and what triggers it, you can find more effective ways to cope. Also, when you ride an emotion out, you’ll see that each one does eventually pass. And you become stronger and more emotionally stable because of it.

Engage in Daily Self-Care

As mentioned above, you need a positive self-image to fuel self-worth and be as confident, healthy, and stress-free as possible. All of which help you better cope with what your body goes through during cancer treatments.

Another great way to gain this positive image of your body and self is to engage in daily self-care. Self-care requires you to learn about yourself and embrace your mind and body in every stage. You eventually learn to love yourself unconditionally and provide what you need to feel good about yourself and your life.

Daily self-care looks different for everyone. A patient undergoing cancer treatments will have to be creative in how they approach self-care. The bodily changes touched on above may limit what you can do physically. But don’t let that stop you.

Simple things like taking your medication every day, spending quality time with your family, writing in a journal, or getting the rest you need each night are forms of self-care. Create a routine that’s mindful of your limitations and represents who you are.

Eat Well and Exercise

Eating well and exercising can also be a part of your self-care routine. They can both be impactful in your quest to manage your body image concerns during and after cancer treatments.

Fueling your body with the right foods and prioritizing physical fitness each day can aid healthy insides. It also helps you get in good shape and create the physique that ignites your confidence and self-esteem.

A balanced diet of fruits, vegetables, proteins, dairy, and grains is ideal. However, you should always follow the diet plans your doctor develops. Be sure to also consult them about the exercises that are appropriate for you during and after your cancer treatments to be safe.

Start Going to Therapy

Sometimes, trying to navigate body image concerns and all that comes with treating cancer on your own isn’t effective. You may need to rely on the help of a professional to really dig into your body image issues, cancer’s role in how you’re feeling, and how to improve your situation.

You can expect the following in your first therapy session:

  • Answering questions about yourself and what you’re currently going through.
  • The therapist explaining what kind of therapy they do and how they think they can help.
  • An opportunity to be open about what’s on your mind and follow-up questions from the therapist.
  • A summary of the session and setting goals for future sessions.

Go into therapy with an open mind and a vision for what you want out of it to get the most out of your sessions.

Keep in mind that there are many different kinds of therapy, including cognitive behavioral therapy, yoga therapy, and dialectical behavioral therapy. You can also engage in individual or group therapy, with remote or in-person sessions available. So, tailoring your therapy process to your needs won’t be an issue.

Develop a Support System

As weird as this sounds, it’s a good thing that everyone doesn’t see you the way you see you. If you’re struggling with negative thoughts about your body and image, it’s nice to know that there are people around you who don’t see those negative things as you do.

Instead, they see your strength, beauty, courage, and joy, and remind you of it often. They lift you when you’re feeling down. They keep you focused on what you can control and are with you every step of your treatment process. That’s the power of a good support system.

Make sure you have the right people around you to help you keep your body image issues in check.

You have enough to worry about during and after cancer treatments. How you look shouldn’t be on this list. Because regardless of the changes your body is going through, you’re beautiful. Believe this wholeheartedly and show yourself immeasurable amounts of grace during this time.

Finding Your New Normal: 7 Steps To Navigating Life After Cancer

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 A cancer diagnosis can turn your life upside down, challenging you physically, emotionally, and mentally. It takes a lot of strength, resilience, and support to get through cancer treatment. However, reaching the end of your treatment doesn’t mean that you’ve reached the end of your journey. Instead, it marks the beginning of a whole new chapter.

After cancer, finding your “new normal” is often an important part of your recovery process, giving you the chance to rebuild your life, reclaim your identity and embrace a brighter future.

A new normal is the adjustment and change that occur after an event or circumstance that has a significant impact on a person’s life, such as a cancer diagnosis. It refers to various aspects of a person’s life that may have been impacted by the disease and its treatment.

There may be physical adjustments required, such as coping with side effects from treatment or adapting to a new lifestyle to maintain health and well-being. You may also have to adjust emotionally as you learn to cope with anxiety and fear of recurrence. Additionally, the new normal may involve reevaluating priorities, setting new goals, and incorporating self-care and support into your daily life.

In this article, we will explore seven essential steps to help you navigate the new reality after cancer. These steps are designed to support your emotional well-being, physical health, self-care, and personal growth.

1. Rebuild Your Physical Strength

One of the most significant aspects of reclaiming life after cancer is physical recovery. Engaging in regular exercise can help you restore stamina, improve your overall well-being, and reduce the risk of cancer recurrence. Whether it’s gentle walks, yoga, swimming, or strength training, find activities that suit your abilities and interests. Start slowly and listen to your body, gradually increasing your activity levels as you gain strength and endurance. Physical rehabilitation programs or working with a certified fitness professional can also provide guidance and support tailored to your specific needs. Focusing on rebuilding your physical strength will help you regain control over your body and enhance your quality of life moving forward.

2. Acknowledge Your Feelings

Equally important as rebuilding your physical strength is addressing the emotional and psychological aftermath of cancer. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit, or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD).

It’s common to go through a rollercoaster range of emotions when active cancer treatment ends, including fear, relief, gratitude, anxiety, and uncertainty about the future. The fear of recurrence can be overwhelming, and adjusting to the changes in your body and appearance can be a challenging process.

It’s important to acknowledge your feelings and give yourself permission to process them. Understand that what you are feeling is a natural response to the trauma you’ve faced. Allow yourself the time and space to grieve any losses, whether they be physical, emotional, or psychological.

Be compassionate to yourself and patient with the pace of recovery. Support from friends, family, and professional counselors can be immensely helpful. It can help you cope with your emotions and express your emotions in a safe environment. Joining support groups with other cancer survivors can also be helpful, as it allows you to connect with individuals who understand your experiences firsthand. These networks can offer emotional support, inspiration, and a sense of belonging that fosters resilience and personal growth.

3. Embrace Self-Care

Make self-care a top priority by engaging in activities that promote relaxation, reduce stress, and support your overall wellness. Carve out time for relaxation and engage in activities that bring you joy and promote a sense of well-being. This may include pursuing hobbies, spending time in nature, connecting with loved ones, or engaging in creative outlets. Activities such as meditation, deep breathing exercises, or journaling can help cultivate a sense of calm, inner peace, and self-reflection. These practices provide valuable moments for healing and self-discovery.

4. Take care of your diet

Your diet plays a crucial role in supporting your overall health. Adding fruits and vegetables to your diet can support your recovery. Vitamins, minerals, and antioxidants in these foods promote healing and boost your immune system. Get a range of nutrients by including a variety of colorful fruits and vegetables. Whole grains, such as whole wheat, oats, quinoa, and brown rice, are good sources of fiber, vitamins, and minerals. They can help maintain energy levels, support digestion, and provide sustained nourishment.

Proteins such as poultry, fish, legumes, and tofu are essential for tissue repair and regeneration. It is important to include adequate protein in your diet in order to help heal wounds, recover muscles, and maintain strength. Healthy fats, like those found in avocados, nuts, seeds, and olive oil, are important for brain health and nutrient absorption. Including these fats in moderation can contribute to a well-rounded and balanced diet.

Consulting with healthcare professionals or nutritionists who specialize in cancer survivorship can provide valuable guidance on tailoring your diet to meet your specific needs. They can take into account any dietary restrictions or sensitivities you may have and create a personalized nutrition plan that supports your recovery and long-term health goals.

5. Redefine Identity and Self-Image

Cancer can profoundly affect your identity and self-image. You may find yourself grappling with changes in your physical appearance, altered body functions, or a sense of loss. Finding ways to redefine your identity in a way that feels authentic and empowering is important as you navigate these changes.

You are not solely defined by your cancer experience. Explore the aspects of yourself beyond your diagnosis. Recognize and develop your unique strengths, talents, and interests. Engaging in activities that foster self-expression is an effective way to reconnect with yourself and discover what you’re passionate about. Writing, painting, photography, and participating in support programs can help you tap into your creativity and rediscover yourself beyond cancer.

6. Reassess Priorities and Life Goals

Beyond physical and emotional recovery, you may also find yourself questioning your priorities and reassessing your life goals.  Cancer often acts as a wake-up call, prompting us to live more intentionally and authentically. Take the time to reflect on your personal aspirations, dreams, and ambitions. Consider what truly matters to you and how you want to shape your future. This may involve exploring a new career path, nurturing relationships and connections with loved ones, or engaging in activities that bring you joy. Embrace this opportunity for personal growth and create a future filled with purpose and fulfillment.

7. Celebrating Your Milestones

As you navigate your journey toward the new normal, it’s important to honor every milestone, no matter how small it may seem. Every step forward is a victory worth celebrating. Take the time to acknowledge and celebrate the end of treatments, anniversaries of being cancer-free, or personal achievements that you accomplish along the way. Each of these milestones serves as a reminder of your strength, resilience, and progress. Make sure to surround yourself with loved ones who can share in your celebrations and provide support.

Conclusion

The process of finding your new normal after cancer requires patience, self-compassion, and time. Healing is a journey that will have its ups and downs.  Throughout your journey, remember to be kind to yourself and prioritize self-care in all its forms. Nurture your emotional well-being, tend to your physical health, and honor your individuality. Trust in your ability to adapt and grow.

May your journey be filled with healing, self-discovery, and a renewed sense of hope and purpose.

PODCAST: Accessing Personalized Myeloma Treatment | What Patients Should Know

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Myeloma experts Dr. Francesca Cottini and Dr. Ashley Rosko provide an overview of the latest advances in essential testing for myeloma and explain how results could affect care and treatment decisions. Drs. Cottini and Rosko also review available myeloma therapies and their hopes for the future of patient care.

Dr. Francesca Cottini is Assistant Professor in the Division of Hematology at the Ohio State University Comprehensive Cancer Center. Learn more about Dr. Cottini.

Dr. Ashley Rosko is Medical Director of the Oncogeriatric Program at the Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Rosko.

See More from INSIST! Myeloma

Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss how to access personalized care for your myeloma and why it’s vital to insist on essential testing.  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. Let’s meet our guests for today. I’ll start with Dr. Ashley Rosko. Dr. Rosko, welcome. Would you please introduce yourself? 

Dr. Rosko:

Hi everyone. My name is Ashley Rosko. I’m an associate professor at the division of hematology at The Ohio State University. 

I’m also the medical director of the oncogeriatric program here at The James and one of the myeloma physicians here at Ohio State. 

Katherine:

Thank you. Also with us is Dr. Francesca Cottini. Dr. Cottini, would you please introduce yourself to the audience? 

Dr. Cottini:

Sure. My name is Francesca Cottini. I am an assistant professor in the divisions of hematology at The Ohio State University. I see patients with multiple myeloma, and I also run my own lab where I focus on multiple myeloma basic research. 

Katherine:

Thank you both for taking the time out of your busy schedules to join us today.  

It’s no secret that it’s important for patients to take an active role in their care and treatment decisions, and I’m sure many viewers here today are doing just that. So, Dr. Rosko, let’s start with this question: Why do you think it’s essential that patients advocate for themselves and insist on better care?  

Dr. Rosko:

Yeah, so I think when it comes to uncommon diseases like multiple myeloma –  

Although we’re talking a lot about it here today, myeloma is an uncommon cancer, and when it comes to rare cancers, it’s really important for you to get care at either a comprehensive cancer center or a place where there is expertise specifically in multiple myeloma. 

And the reason why that’s so important, it’s recommended through the NCCN guidelines and other standing guidelines is because myeloma is a very – it’s a shifting and changing landscape when it comes to both treatment regimens, diagnosis, and there’s a lot of moving parts and pieces.

Such as, there is an uncommon cancer that when diagnosed, we do recommend that patients and with their caregivers and with their families and support be able to seek expertise care for these uncommon cancers. We work often in collaboration with our community team, but we would not be able to care for myeloma if it were not for our community partners. 

And so, it’s really, really important for patients oftentimes, when there’s been such a diagnosis, they can come to a comprehensive cancer center for a consultation or to be able to get a second opinion oftentimes. And then continue to get care locally. It really provides this overall guidance on the management and diagnosis of uncommon plasma cell disorders, and we’re happy to do that. 

Katherine:

Thank you for that. It’s helpful as we begin our discussion. Part of accessing more personalized care starts with test results. Dr. Cottini, what testing should take place following a myeloma diagnosis?  

Dr. Cottini:

So, once somebody is diagnosed with multiple myeloma, there are different types of tests that we need to get. Some are blood tests, some are urine tests, some are bone marrow tests, and others are just different types of imaging. So, the reason for all these tests is because multiple myeloma can kind of go everywhere and can cause the damage to different types of organs. 

So, if we look at blood tests, usually you would see that you get the complete blood count, so we can count the number of red blood cells, white blood cells, and platelets. And then we’ll look at kidney function, through a chemistry profile, calcium levels, multiple myeloma can affect bone cells can affect kidneys. And then, you will see some more sophisticated tests that are really important for the diagnosis of multiple myeloma but also for monitoring and seeing if you’re actually responding to the treatment or you are progressing. 

These two tests that you can see are kind of difficult to say, but very important and needs to be remembered. So, one is called serum protein electrophoresis with immunofixation. And the other one is free light chain assays. 

And the practicum with these two tests is we can identify the specific marker of the multiple myeloma cells and it is either something monoclonal protein or M-protein or kappa light chain numbers. And as I said before, these numbers can be monitored. So, in response to the treatment, they should go down. And then, unfortunately, if we see progression, they might go up again. 

And then, urine tests can also give the same type of numbers. Usually, we have our patient keep the urine for 24 hours, for a day, and we can see if there’s monoclonal proteins or light chains there, too. Then there is a least favorite test of all of them that is the bone marrow testing. So, this is very important for us, because it’s where most of the myeloma cells stay. So, we need to have a look at the bone marrow.  

We need like a piece of the bone and some of the liquid tissue to look at specific characteristics of the myeloma. And then, I said before, the myeloma can go to bones, so we need to kind of get some imaging of the bones. These are usually a set of X-rays – it’s called skeletal survey – to see if there is any area that is abnormal or at risk of fractures.   

Then, we are also looking at PET scan, which is a more sophisticated test that is based on sugar consumption. We know that myeloma cells and all cancers enjoy sugar, so with the PET scan, we can see visually where the myeloma cells are in the body.

Katherine:

What is cytogenetics? 

Dr. Cottini:

So, this is a really interesting question. So, cytogenetics, or FISH tests, are tests that practical tests allow us to look at the chromosomes of the multiple myeloma. 

So, everybody has 46 chromosomes, right? Multiple myeloma cells can have more of them or less of them. So, they can have – some myeloma cells have 17 chromosomes instead of 46. So, cytogenetics in the karyotype counts how many chromosomes there are. And then, there is another type of test that is called FISH test, or fluorescence in situ hybridization – I get all the difficult names – that practically look at specific area of chromosome. It can tell us if some areas of chromosomes are lost. That’s what you can read as deletions, or practically missing pieces of chromosomes.  

Or there are extra pieces of chromosomes. These are the amplification gains. Or if there are different pieces of chromosomes that stick together. And these are the translocational chromosomes. And all of these data are important for deciding for knowing how aggressive or difficult to treat the myeloma. 

Katherine:

Dr. Rosko, in many other cancers, we’ve been hearing about targeted therapies and immunotherapies. In some cases, a specific mutation or chromosomal abnormality may indicate that a particular treatment may be effective. Are we there yet in multiple myeloma care? 

Dr. Rosko:

Yeah, so, myeloma care is always a little bit different. So, myeloma, being a blood cancer, is different than other solid tumors and how we treat it is also a bit different. So, unlike solid tumors, in which we look at the size of a cancer and then if it’s in different places in the body. In multiple myeloma, it being a blood cancer, just by definition it’s throughout the body. So, we have to be able to estimate or stage cancers differently or stage myeloma differently. And it is based upon the cytogenetics that Dr. Cottini just outlined to you.  

So, to get back to your question, Katherine, I didn’t forget about, how do we define treatment, how are some of these therapies being defined specifically and personalized for persons with multiple myeloma? And we do do that. And it is based a lot upon the DNA of those cancer cells and whether or not they’ve acquired what I would call a standard-risk changes or whether or not they’ve acquired a biology that makes them tend to act more aggressively. Now, again, these DNA differences – not all cancers follow the book, and not all therapies are unique to these. 

But what it does help us to do as clinicians to say, “Well, we have standard risk mutations within these cancer cells, and then we can define oftentimes how many drugs a patient gets when they’re newly diagnosed. Just like many other cancers, our treatments for multiple myeloma can be a combination of pills or shots. And then, if patients carry mutations that tend to act more aggressively, we tend to be very aggressive with their upfront therapy. For many patients, we’d receive three medications. Patients with more aggressive disease biology may receive four medications. 

And it’s very unique upon many characteristics. It’s not only based upon the cancer cells’ DNA but also the health of the patient. The health of the patient really defines also the ability to tolerate treatment. So, many patients are – myeloma has a lot of heterogeneity to it, where some patients with myeloma can’t believe that they could possibly have this cancer. 

You know, it’s really kind of picked up subtly, with blood abnormalities. And then some patients with myeloma come into the hospital very very sick, with having kidney damage or having infection. And it runs the gambit between being asymptomatic really and having patients coming in quite unwell. That also influences our treatment decisions. So, when we think about the question about whether we have different immunotherapies or targeted therapies based upon the genetic changes within the myeloma cancer cells, the answer is yes, we do shape therapy that’s tailored around the type of abnormalities within the cancer cells. 

But unlike some cancers, where if the cancer cells carry a specific marker, we give a specific drug, that’s not quite where we’re at with multiple myeloma, in terms that providing therapy is saying, “If you carry this mutation, this is what you should get.” 

So, it’s a very long answer to say to you that we do personalize therapy based upon changes within the DNA, but we also base it upon how fit the patient is and how their health was prior to developing cancer. 

Katherine:

Thank you for that. Dr. Cottini, what mutations or abnormalities are you looking for? 

Dr. Cottini:

So, as Dr. Rosko said, and as I quickly previously mentioned, so there are different types of DNA tests that we can do. One is this FISH test, and that’s a standard test. It’s usually done practically everywhere. And it practically tells us if there are specific deletions or changes. 

And we don’t really have yet a specific medication that we know works for specific abnormalities. But all this information is important to decide, as Dr. Rosko said, number of drugs, and maybe that can be helpful in the future when hopefully thanks to the research, we will be able to say, “Based on this abnormality, you would benefit more from this type of treatment.”  

There are other types of tests. One is called DNA testing, so we look at the mutation. So, really to point to small changes of a particular gene. This is done not routinely, but I think it can still give lots of good information. And there are lots of genes that are normally myeloma, that has potential drugs that have been studied, those with multiple myeloma and any other type of cancer. 

Katherine:

Yeah. Dr. Rosko, what do the results of these tests tell you about prognosis? 

Dr. Rosko:

Yeah, I think this is a really important question. And, in my experience, when we encounter a patient newly diagnosed with myeloma, it is like drinking from a firehose in terms of the amount of information that we are reviewing and the amount of information that we are discussing with the patient and with their family. And oftentimes, we talk about this piece of these cytogenetic abnormalities, and we talk about – but I really encourage your patients and anyone who is listening in today to really take a deeper dive. 

Because sometimes it’s helpful as, one, you’re navigating a new cancer diagnosis, but that’s challenging in and of itself. And then, two, talking about a cancer, multiple myeloma, that is – most people don’t know so much about multiple myeloma, unlike breast or colon or lung cancer, and so I really encourage patients and their caregivers. And a lot of times this happens, where we’ll go over all the cytogenetic abnormalities, we’ll talk about how it plays a role in their overall treatment trajectory, and their prognosis, but also good just to circle back and say. 

Settling into what this diagnosis is, oftentimes, people on first time treatment. And then even sometimes months or even years into their diagnosis, they stop and they come back and they say, “Can we talk about this FISH data? Can we talk about what changes that I had within the DNA? What does this mean?” And that’s not uncommon at all.  

So, I really feel like for many people that are on the call here today, I think it’s important to say it’s okay to go back to your physician and say, “I’m learning more about this, now that I’m more familiar with what this diagnosis is, can we talk about these FISH changes, or can we talk about the stage of my cancer?” Because I think it’s oftentimes an overwhelming period of time to have a new cancer diagnosis. And I also want to just give permission to everyone on the call that it’s okay to go back and ask questions, even if it’s been months or years.  

So, having high-risk mutation can upstage a cancer and in the absence of high-risk mutations can downstage a cancer. So, what that really means is saying, “These biologic changes that are happening in the cancer cells give a sense of what we anticipate that the trajectory is going to be when someone is diagnosed.” 

Now, it’s imperfect. I feel like cancer just generally is unpredictable and there are many things that we try as clinicians. And especially with the experience that we have, to say, “This is what we anticipate the course will be like you, in terms of response, in terms of the cancer being quiet.” As you all know, multiple myeloma is not a curable cancer right now. And for all patients, when they’re diagnosed, they’re often able to get disease control and be able for that cancer to be put in remission. And we do focus on remission. 

I think that’s also something that I talk to my patients about. Even though we can’t cure it, we can certainly control it, and that’s a big part of what we do. So, when we get good disease control, we’ll talk more about next therapies, but that is how Dr. Cottini – Dr. Cottini is a wonderful scientific investigator and knows all of the latest and greatest when it comes to different mutations that are identified within cancer cells. We partner very closely with her in terms of  scientific investigation and how the mutations that were newly identified, too, play a role in terms of response to treatment, and how we’re able to best treat them.  

Katherine:

Thank you for that. Dr. Cottini, do you have anything to add as far as what type of questions patients should ask their healthcare team about test results?  

Dr. Cottini:

I mean, I think Dr. Rosko already pointed out the most important things. So, multiple myeloma is a rare disease, and it’s not as intuitive to understand as breast cancer, lung cancer, prostate cancer. 

So, it’s really important as a patient to understand which tests are we ordering. Why are we ordering? How do we monitor the disease? Because that’s one of the most important questions the patient asks, because for different types of solid tumor, we get imaging, and we know that the tumor is growing or not. Where, for us, we look at the markers I had described previously. And sometimes, we maybe see small changes in the markers that are very concerning and worrisome for the patient, but sometimes they are not. So, I think asking questions about the testing and how we treat them and monitor the disease is a very important part of being a good applique for itself. 

Katherine:

Thank you. Dr. Rosko, I’d like to move on to treatment. We know that multiple myeloma patients have a number of options and that many available therapies are used in combination. 

So, I’d like you to walk us through the options that are available. 

Dr. Rosko:

So, I’m going to start by how the best way that I can frame out when we talk about newly diagnosed versus patients when they have relapse. So, there are therapies that are available for patients that are FDA-approved when they are newly diagnosed with the cancer, and there are therapies that are approved only when a cancer has acted up again or relapsed. 

So, I’ll kind of frame it from patients who are newly diagnosed. And then, I also will talk more about relapsed therapies and what we’re able to offer to patients. So, in first, when we talk about treatment options, we frame treatment based on a couple things. So, one is, we talk extensively about the disease biology. So, that plays an important role in how we decide which treatment the patient should get.  

And then, the second part about how – I would probably say there’s about four main parts. And so, disease biology is one, and another thing has to do with the patient characteristics. In terms of the patient’s overall health prior to developing cancer, and also how the cancer has impacted their health in terms of everyday activities. Whether or not a person has really slowed down quickly, whether they’ve been in the hospital, and how it’s impacting their organs. Because that plays a role in terms of what we’re able to give patients.  

If a patient has advanced kidney failure, which can sometimes happen, or if you have to focus more on protecting their bones and if there’s concern about fractures and things like that. And then independent of patient characteristics in terms of overall health, the last part I talk to patients about is their own preferences. It’s a hard thing to talk about, shared decision-making in a cancer that most people have never heard about, but there is certainly – when we talk about options and there are, it’s important to talk about shared decision-making in terms of what’s most important to them and where they – and most patients will say, “Well, I just want the best medicine.” 

And I say to them, “Well, you know, we have lots of options, and that’s the best thing about it, but we also want to be cognizant of the real world, of giving best options,” and for example, Many of my patients – so, I’m at The Ohio State University, I’m here. And a lot of patients travel. I have a lot of older patients that I care for, and they’re very independent with travel. And I want to make sure that whatever therapies we’re getting for them, that we can do this in such a way that maintains their lifestyle.  

So, the beginning part of a treatment, it is broadly described as – when we talk about someone who was diagnosed with this, it’s this thing called induction. So, induction is when we give anywhere from two to four medications to be able to control their cancer and put it into remission. And we know that the cancer is in remission because, like we started out the conversation with Dr. Cottini, myeloma makes proteins. Oftentimes, it makes proteins, those proteins are not nutrition proteins but are cancer proteins that we can track in the blood. 

So, we can check them every month and to make sure that the patients are having a really good response, and as such, we’re able to define that they’re responding to their treatment. Because they have a beginning stage in induction, which they’re given treatment, and then the goal is to put patients put in remission. 

Depending on the overall health of the patient, a standard of care for most patients diagnosed with multiple myeloma is to undergo an autologous stem cell transplant. An autologous stem cell transplant is not a transplant in which you’re getting cells from your brother or sister and they’re being donated to you. They are your own stem cells. We get them out of you when your bone marrow is free of disease, and then we would admit you to the hospital for a more intensive therapy and give them back.  

That is often the standard of care for patients newly diagnosed with multiple myeloma and it is recommended for most patients. Some patients get – I like to think of it as a stem cell transplant not at the time of their initial diagnosis, but later on at the time of relapse or some patients are not candidates for a transplant or elect not to have a transplant. And all of these options are very personalized to the patient. It’s very hard to say that this is exactly what we do. 

Because it’s a strategy where it requires a lot of shared decision-making to make sure that we’re getting good disease control, good quality of life, and deep, deep remissions for our patients. So, then, if a patient gets a transplant, there’s a period of recovery, and then patients go on a pill most often, a maintenance pill that they stay on for indefinitely. 

Myeloma is also a cancer which has perpetual therapy. Very different than many other cancers, where there’s a beginning and an end, myeloma for the most part is perpetual therapy, where you get some form of therapy at higher dosages versus lower dosages over a period of time.  

So, I’m going to talk broadly about the classes of drugs that we have and how we use them to be able to define therapy. 

So, the first class of drugs are called proteasome inhibitors. Just like many other cancers, we use different types of drugs to be able to target different aspects of a cancer cell’s growth cycle.  

So, very similar to how we do other drugs, these are very specific to the cancer cell, and they’re very targeted. So, unlike some of our other kind of classic chemotherapies, many of these medicines that I’m going to talk about are very targeted at the cancer cells without causing too many other problems. 

So, proteasome inhibitors include drugs like bortezomib (Velcade), which is given as a shot, carfilzomib (Kyprolis), which is given as an IV, or ixazomib (Ninlaro), which is given as a pill. They have different indications, but they’re the same class of drugs.  

The next class of drugs is called immunomodulatory drugs, or iMiDs. This includes things like lenalidomide (Revlimid), pomalidomide (Pomalyst). Those are the most common, and then we sometimes use the drug that the original iMiD drug, which is called thalidomide (Contergan). 

These are all pills that patients take, and so that’s oftentimes very nice for patients to be able to provide therapy at home, very well-tolerated. The next class of drugs are called monoclonal antibodies. On a cancerous cell, there is a marker. 

And so, we use monoclonal antibodies to be able to target the marker on the cancer cell. What that means is very specific. To that cancer cell, so, the most common target is the CD38, that’s a marker on one of the cancer cells. And we use a drug called daratumumab (Darzalex), that can be given as an IV or a subcutaneous agent, or another drug called isatuximab (Sarclisa). We also have other markers on the plasma cell. There’s a marker called SLAMF7, which we have other drugs called elotuzumab (Empliciti), which is often used for patients more in the relapse setting.  

Katherine:

Dr. Cottini, I’m wondering if you could briefly go over CAR T-cell therapy and bispecific antibodies. 

Dr. Cottini:

Yes, of course. So, these are all our new therapeutic approaches for patients. And these are types of treatments that are given to patients that already went through their induction, they went into remission, maybe they had a bone marrow transplant. And then, after a couple of years or months, unfortunately the disease came back, and they need the new and different treatment options. So, these two strategies, CAR T and bispecific antibodies, really rely on the T-cells, on the immune cells of the patient.  

And they all focus and target a specific marker on the plasma cells, but they work a little bit differently. So, the bispecific antibodies – and we have different antibodies.  

Some are approved by the FDA, some are just in clinical trials trials. They practically recognize something that is on the plasma cells, on the myeloma cells, that can be BCMA, GPRC5D, or other targets. So, at the same time that I am able to get close by the T cells, the immune cells, and in this way, practically there is both the antibodies and also the immune cells which is activating and getting rid of the cancer cells. 

So, these are infusions. Often, they’re done initially in the hospital and then in the outpatient setting. Sometimes it’s even every week, every other week or so.  

CAR T are different strategies, and it’s a very smart way of trying to get rid of the cancer cells. So, practically, these are T cells.  

So, these are immune cells from you, from the patient. And they are practically taken and then brought to a very specific and clean facilities where these T cells are modified in order to be able to recognize the cancer cells.  

And then these cancer cells are sent back to us and then practically they are given into the veins to patient, and then there is this kind of reaction of these T cells, which are very peppy and aggressive to be able to kill all the remaining cancer cells. So, these are all the new strategies. 

Obviously, we are kind of like in the early process, but these are very promising therapies I think we’ll be maybe moved up front even with diagnosis in the next 10, 20 years, we don’t know. 

Katherine:

I want to thank you both so much for your thoughtful responses. And as we close out the program, I’d like to get a final comment from each of you. What are you excited about in myeloma research, and why should patients be hopeful? Dr. Cottini?  

Dr. Cottini:

So, I think that especially if we look back especially at where myeloma was 20 or 30 years, I think we have made so many progresses, and there is really hope for our patients. I’m very passionate about research. That’s what I do. That’s why I read paper, I publish paper, and I think that it’s the heterogeneity of our disease is huge, and it’s difficult to tackle. But we as researchers, as physicians are the ones that can look at these changes, and find new therapies for our patients. So, I think that research is the way to go to be able to finally cure our patients. 

Katherine:

Dr. Rosko? 

Dr. Rosko:

Yeah, I mean I go Dr. Cottini’s sentiments. The multiplying therapies for myeloma really provides our ability to prescribe and make myeloma more of a chronic illness for our patients. I think it’s really important to allow patients to get really good targeted therapy personalized to them. Of course, we all are looking forward here to deep remissions. We want to be able to do that in such a way where we have good quality life for our patients. 

I think, importantly, as part of this program does here, we have to create access. So, most of myeloma is treated in the community, and most myeloma is diagnosed in older adults. And I really think how important it is, we talk about clinical trials, and being able to get our patients on to clinical trials, and to be able to get more knowledge about the disease process of pathogenesis, which I think is just really pivotal. 

So, I’m excited about personalizing therapy to the individual’s health and really being able to increase access to all of these novel therapies that we have. For patients, often at specialized cancer centers, but I’m really interested in how we can increase reach and access for all of these advances in myeloma research to every patient no matter where they’re at. 

Katherine:

Well, thank you both for joining us today. And thank you to all of our partners. To learn more about myeloma and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us.  

 

June 2023 Digital Health Round Up

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With the help of technology, this month cancer patients and scientists are making strides in the fight against cancer. A new artificial intelligence chatbot is available to ease cancer patient’s anxiety by answering questions 24 hours a day. Researchers have discovered that turning off a particular gene in T cells can fight cancer. Scientists have found that injecting particular bacteria directly into a cancerous tumor can fight cancer.

New AI ‘Cancer Chatbot’ Provides Patients and Families with 24/7 Support: ‘Empathetic Approach’

Cancer patients looking for quick answers or support between their appointments can now turn to “Dave”, an artificial intelligence chatbot trained to discuss all things related to oncology reports Fox News. The patient’s questions are mostly about potential treatments and the side effects that can be expected. The chatbot provides answers anytime, day or night, to reduce the patient’s anxiety. The AI is designed to respond with empathy and uses seven years of patient and doctor interactions. These interactions are drawn from a social and professional cancer app. To date, over 10,000 cancer patients have used this chatbot. The chatbot also informs patients of the latest technological advances. “Dave” can provide all kinds of information, however if more specific information is needed, patients are directed to call their doctor. Click here for more information.

Knocking Out Gene Triggers Powerful Anti-Cancer Response

Researchers at Baylor College of Medicine have made what they believe is a groundbreaking discovery in the field of cancer research. Their study, published in the Proceedings of the National Academy of Sciences, reveals the importance of a specific gene, SRC-3, in regulating the immune response against cancer reports Science Blog. With the help of gene editing technology, scientists eliminated the SRC-3 gene in T cells. Eliminating this gene caused a lifelong anti-cancer response in animal testing for breast and prostate cancer. Tumors were eliminated without the side effects typically caused by cancer treatments such as chemotherapy. Researchers are doing further testing to use for possible treatment of cancer in humans. In this study, they found that not only were the tumors gone after the injection of the altered T cells, but the tumors did not reoccur over time. Scientists are very hopeful that this research can be used to make better cancer treatments in the future. Click here for more information.

Intratumoral Bacteria as an Injectable Ant-Cancer Treatment

Scientists at the Japan Advanced Institute of Science and Technology in Ishikawa, Japan have developed an anti-cancer treatment that consists of bacteria that are naturally found inside some tumors reports Medgadget. With the help of technology, scientists can separate the bacteria and inject it into the tumor. The bacteria inside the tumor then causes an immune

response to destroy the tumor without any genetic engineering or advanced methods of drug delivery, making it less costly. This method causes less adverse side effects outside the area of the tumor, unlike other treatments. Tumors by nature, have a lower oxygen environment, which makes an ideal environment for bacteria to grow. These intratumoral bacteria get injected into the core of the tumor to cause an immune response. Mouse models using this method show promising results. Click here for more information.

Becoming an Empowered and [ACT]IVATED After a Renal Medullary Cancer Diagnosis

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the renal medullary carcinoma (RMC) community. Renal medullary carcinoma data around prevention, treatment and research is ever-expanding and it’s important for patients and families to educate themselves with health literacy tools and resources on updated information in RMC care. With this goal in mind, PEN initiated the [ACT]IVATED Renal Medullary Carcinoma (RMC) program, which aims to inform, empower, and engage patients to stay updated about the latest in RMC care.

The [ACT]IVATED Renal Medullary Carcinoma program can benefit all RMC patients, sickle cell trait patients, and patient advocates. [ACT]IVATED helps patients and care partners stay updated on the latest treatment options for their RMC, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer. 

Renal medullary carcinoma is a rare kidney cancer, and it’s essential that patients with sickle cell trait stay alert for symptoms of RMC. Flank pain and blood in the urine are warning signs that should be checked out immediately. Some research also recommends that individuals with sickle cell trait should also try to take precautions against extreme intense exercise due to a possible link to RMC.

RMC [ACT]IVATED Tip

Renal Medullary Carcinoma Disparities

PEN is fortunate to have an experienced RMC patient advocate Cora Connor  as part of the team. Cora serves as the RMC Empowerment Lead. Cora’s brother Herman’s RMC diagnosis led her to found the advocacy organization R.M.C. Inc. when she decided she wanted to help raise awareness for other patients and families. She is so grateful that Herman’s RMC is now cured after successful treatment and hopes more effective therapies for RMC will be developed. 

Cora interviewed expert Dr. Nizar Tannir from MD Anderson Cancer Center in several RMC programs. There are many Black, Indigenous, and People of Color (BIPOC) groups who experience healthcare disparities as RMC patients. Dr. Tannir explained how he’s cared for many Black, Hispanic, and other people of color patients who have experienced healthcare disparities and a lack of insurance coverage and access to quality treatments. “We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now, even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.”

Lack of health insurance is a common barrier to care for RMC patients. Dr. Tannir shared about this issue. “Unfortunately, there is another side of that story that is common to patients with RMC because they are young and many of them are either students or they’re working at different jobs, they don’t have…many of them do not have health insurance unless they serve in the military.”

RMC [ACT]IVATED Tip 2

Solutions for Improved Renal Medullary Carcinoma Care

Clinical trial participation is one approach that can improve care for RMC patients. It’s also key for patients to learn more from credible resources, asking questions to ensure your best care, and helping to educate others about renal medullary carcinoma for education and empowerment of the RMC community.

Clinical trial participation by diverse populations is important to develop new and refined treatments –- as well as toward a potential RMC cure. Dr. Tannir explained how treatments need to advance past chemo. “…we can’t stop with just chemotherapy, we can’t just have chemotherapy. We need more effective drugs, we need more drugs, because, unfortunately, not every single patient with RMC will respond to chemotherapy like Herman did and be cured and alive and are living well 10 years, 11 years and beyond.”

Dr. Tannir further explained about clinical trial participation and learning about the benefits and risks – and also expressed his hopes for an RMC cure. “…you should not be afraid of trials, you should embrace them and you should participate in them. But, of course, you know the role of the physician is to explain the rationale and the potential benefits and potential toxicity, because everything has a price. Unfortunately, there are some drugs that could cause side effects, but hopefully it’ll be worthwhile to achieve to break the barrier of cure.”

Raising awareness about a lack of insurance coverage for RMC patients is another key to improving care. Dr. Tannir shared advice for others to advocate for RMC patients and to raise awareness. …“work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them. I hope before I retire that I will see this achieved. Because that’s really, I think if the number one on my list of things to do is this…is have equal healthcare access to everybody with an RMC diagnosis, so that they get the best care they deserve.”

RMC [ACT]IVATED Tip 3

[ACT]IVATED Renal Medullary Carcinoma Program Resources

The [ACT]IVATED Renal Medullary Carcinoma program series takes a three-part approach to inform, empower, and engage both the overall RMC community and patient groups who experience health disparities. The series includes the following resources:

Though renal medullary carcinoma needs more research and treatment advances, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your RMC care for yourself or for your loved one.

[ACT]IVATION Tip:

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re facing a renal medullary carcinoma diagnosis, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.

PODCAST: Thriving With Breast Cancer | Tools for Navigating Care and Treatment

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How can patients live well with breast cancer? Dr. Bhuvaneswari Ramaswamy reviews current and emerging breast cancer treatments, discusses the importance of emotional support, and shares advice and resources for engaging in care decisions.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More from the Empowered! Podcast

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 the tools to help you navigate breast cancer care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to 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, joining me today is Dr. Ramaswamy. Welcome. It’s so good to have you here. Would you mind introducing yourself?  

Dr. Ramaswamy:

Oh, no, of course not. Thank you so much, Katherine. And well, I’m Dr. Ramaswamy. I’m a professor at the Ohio State University. I’ve been here for about 20 years as faculty. My focus of interest, what I see in the clinic is primarily breast cancer patients. And my research is also focused on breast cancer itself, both treatment as well as prevention. I do both. I have a lab, and so I work on that to understand some of the mechanisms and biology of drug resistance as well as prevention.  

Why does like lack of breastfeeding or obesity, why does that increase the risk of breast cancer? I study that in the clinic. I am primarily interested in clinical research, so putting patients on clinical trials, both therapeutic and non-therapeutic, collecting tissues, collecting data to understand, again, biology that’s happening in the patients and what works and improving care and identifying new novel therapies. That’s what I do. 

Katherine:

Excellent. 

Well, thank you for taking the time out of your schedule to join us today. 

Dr. Ramaswamy:

Anytime. 

Katherine:

I’d like to start – we start all of our Thrive Series with the same question. In your experience, what does it mean to thrive with breast cancer? 

Dr. Ramaswamy:

That’s a great question. I think it’s an important one because we always talk about surviving breast cancer, and that’s obviously the most important thing. We all want to survive, but we all also want more than that. We don’t want to just live, we want quality of life. 

And I think one thing that to remember is as soon as the breast cancer diagnosis is done, it’s in part – it’s difficult to say that you can thrive immediately. So, your focus is on really getting through the treatments and making sure it’s all done. So, at that time, managing the toxicities and getting through the stresses of going through the treatments and surgery, radiation, et cetera takes over everything else. But as you finish that off you, you want to focus on what are the ways you can try to get back to the life that you had prior to breast cancer.  

Now it’s difficult and it’s almost impossible to forget the big C word in your life. So, that’s going to hang and that’s going to kind of make anything you look at your perspective as slightly different. I mean, every pain could be worrisome because could it be a reference? Has the cancer spread? Or every bad news about another person could you, could transport that about yourself and then kind of worry about what could happen to you. 

Every visit to the doctor, and particularly your oncologist, is going to bring back memories. So, there are certain things that you can’t take away, but time can heal those. But what we talk about thriving is that you looking at factors that is going to make you and your body healthy. That is going to be exercise, being engaged in whether your work or your family work and being joyful and seek what brings you joy, whether it’s friends, your work or your family.  

And make sure you make time for that. And also eating right and diet is an important aspect of that. Not doing inflammatory diets such as highly fatty diets or meat-containing diet, but really kind of looking at your diet and your weight and your exercise. And trying to also discuss with your team about what are the symptoms you are having and how we can support you to mitigate those symptoms. And really having conversations and somebody you can confide with to both manage your physical aspects as well as the emotional aspects.  

And really kind of thriving and becoming an advocate for yourself as well as for others who have breast cancer is what I would say is truly thriving with breast – with the diagnosis of breast cancer.   

Katherine: 

Yeah. And we are going to go into a more in-depth discussion later as the interview goes on, but thank you so much for your perspective. Let’s start with an essential piece that helps people thrive, understanding their breast cancer. First, what are the types of breast cancer? 

Dr. Ramaswamy:

Yeah, and I think that’s extremely critical. Empowering you, the patient, with the knowledge of the type of breast cancers and what’s the outcomes and why they’re getting some treatments, and what to look for is probably one of the most important things to do. And part of it lies primarily with the providers to ensure that education empowerment. But part of it also lies on the part of the patient to make sure they ask the right questions and learn about their breast cancer.  

So, the type of breast cancers you have that are hormone receptor-sensitive breast cancer, that means your tumor would be positive for estrogen and or progesterone receptors. And it depends on estrogen and or progesterone for its growth and wellbeing. And then there is a HER2-positive breast cancer, which means the HER2 protein is high in your tumors and that drives the cancer cells.  

And so, it’s important to understand that subtype and why we have certain treatments to improve the outcomes. And then the last one is when all those three are not there, ER, PR, and HER2. So, hence the word triple-negative breast cancers. These are the large subtypes of breast cancers that are based on these biomarkers, which are proteins that drive the growth of breast, the cancer cells. There is of course different types of breast cancer based on histology that is invasive ductal cancer, that’s very most common. The less, slightly less common is the invasive lobular cancer, about 10 to 15 percent.  

But then there are also very less than 3 percent called metaplastic breast cancers and other types of breast cancers that could also be histological different subtypes.  

And it’s important for you to know what type of subtype of histological or how does it look under the microscope is important for you to know as well. So, these I would say are the most important understanding of our breast cancer subtypes, at least this much to definitely educate the patient and patient having the understanding of their cancer. 

Katherine: 

What biomarker testing is standard following a breast cancer diagnosis? 

Dr. Ramaswamy:

So, the three biomarkers that we definitely test for at this point are the estrogen receptor for strong receptors and the HER2. And, of course, there’s also the grade that your pathologist would grade your tumor. And grade is different from stage. And that is looking at how quickly your cells are growing. And these are the basic understanding that you should have about your cancer at this point. 

Katherine: 

Dr. Ramasamy, how is breast cancer staged? 

Dr. Ramaswamy:

The breast cancer is usually staged by using couple of things. One is clinical staging. So, when you come in with the initial you feel a lump and you get a mammogram. So, we will stage you by understanding the size of your tumor in your breast as well as whether we are able to palpate your lymph nodes. Second, we, you know, the imaging. What we feel as a size is usually a little bit overestimated when we look at the mammograms or the MRIs that you have. And then we’ll see whether in the – in those imagings whether your lymph nodes are looking abnormal. So, we use these initially to do clinical staging. But then when we go to surgery, that’s when we do the correct pathological staging because now, we know exactly your tumor size. Then they do what’s called a sentinel lymph node biopsy.  

We don’t need to take all the lymph nodes to stage your nodal status anymore. We just use this methodology in the surgery, in this – during surgery to just pick out those nodes that is draining your tumor back. And whether they’re positive or not. In general, as long as you don’t have a very locally advanced cancer, we don’t need to do staging scans to stage you for breast cancer. But in case you are unlucky enough to have cancer spread in those, and we do scans and you have cancer either in your bone or liver or lung, then that is a higher staging, and that’s what’s called the stage IV cancer. 

Katherine: 

Okay. Another key component of thriving is finding a treatment that is right for your disease. What are the considerations that guide a treatment decision? 

Dr. Ramaswamy:

Yeah, great question. So, what we just talked about, the two things that are very important for us to make a decision, and that’s where we have come far in the last 20, 25 years, is because we are not just taking the staging.  

That is anatomical staging, meaning what’s the size of your tumor and the lymph node involvement. We use those. That is important for us because that obviously changes the risk. The higher the stage, the higher risk of recurrence. The higher the risk, we have to do more treatment to get a benefit, right? So, that’s one side. But what we have come to understand is biomarkers are very important. That is biology of your tumor.  

So, the grade, how quickly it’s proliferating although it’s not a biomarker, but it tells us a lot. And then the three important biomarkers we talked about ER, PR, and HER2. Those all are important for us to make a decision. In addition to that, we do something called a genomic testing called Oncotype DX assay. There is also another test called MammaPrint. These are genomic testing.  

That is, we look at some of the genes that are up or downregulated in your tumor to decide whether you are going to benefit for something called chemotherapy or maybe just targeted therapies enough. So, these are some of the factors that we use to make a decision.  

Now, do we use age and your performance status? Meaning how well you are? Do you have comorbidities? Do you have bad diabetes? Do you have heart disease? Yes, they all go into that whole treatment decision, but the primary is made out of biomarkers and genomic testing and anatomic, and the rest are additional factors that go into our decision-making.  

Katherine: 

Yeah. What about metastatic disease? Are the considerations different when it comes to treatment? 

Dr. Ramaswamy:

It is a little bit different because the first thing that we have to understand is when we are seeing them in stage I, stage II, stage III, which is stage IV is metastatic, stage II – we – our goal is a curator. We are trying to really throw the kitchen sink, although that’s really not what we do. We are trying to still be tailored therapy, but we are trying to do everything we can to prevent a recurrence.  

But now when you have a stage IV disease that is the cancer has spread, that is the horses have left the barn in the breast and has gone and settled in distant organs and gone, our goal is to try to contain the disease. So, prevent further progression, prolong the life and survival, and also improve quality of life. So, there are those consideration.  

The biomarkers still go into consideration. We ensure we biopsy the metastatic site and look for those biomarkers. We do the genomic testing, gene sequencing of this. That will also help with our decision-making. We, of course, look for clinical trials because new novel therapies are always more important, but these are the other factors. And, of course, performance status that is how well you are, how well your organs are functioning, and what’s your age, and how that affects your morbidity. All of those are also important. 

Katherine:

What questions should patients ask about their treatment options?  

Dr. Ramaswamy:

I think the most important thing is to understand what you have first. So, kind of the doctor will talk to you about what type, histological type of breast cancer you have. They’ll also talk to you about what biomarkers you have. And they will also talk to you about the treatment options, which could be chemotherapy versus target therapies, and what are the outcomes from those using clinical trials. So, I think the questions that you have to ask them is that, what do you feel like you would is right for your body, right? That’s important. That what you have some of the preconceived notions that we all carry. That bias and preconceived notions is just a normal natural way of learning. And so ask about those fears, ask about those hopes that you have. And if your hope is, “Hey, can I do as well without chemotherapy?” Ask that question. So, and it’s important to understand the side effects and the outcomes of each therapy.   

It may also be important for you if you do – you really don’t want to have treatments to understand if you don’t get treatment, what are your outcome changes? So, those are, I think, the important thing. And then what that does mean to you? What do you want out of your life? Longevity, quality of life? How long will your quality of life be affected? And how does that impact your understanding of what you want out of your life? I think those are important for you to ask and make sure you have a friend or a relative with you so that not everything is going to go in at the first or the second visit, so you have someone else who’s taking notes. 

Katherine: 

Yeah, good idea. Are there emerging therapies that are showing promise? 

Dr. Ramaswamy:

Oh, my God. There’s just tremendous emerging therapies that are showing extraordinary progress. And I talk about this to my patients all the time. I mean, I tell them like two years ago say in a patient with – patient with metastatic disease, I’ll say, last year this drug wasn’t approved.  

This drug is now approved for you to be given, and it shows extraordinary effect. So, every year we have new drugs getting approved, and we are also trying to get it used to be a little bit of a richness on the HER2-positive disease. And now we are seeing definitely a lot of richness on hormone receptor- positive disease. And I think we’re starting to see some new particular immunotherapy and other targeted therapies showing some response in triple- negative breast cancer.  

Now, I know that’s a place that we still need to see more newer therapies, but overall, in the stage IV setting, we have really many options to keep them in good quality of life and longer. But people will ask, “Really, why do I even need to get to stage IV?” Really look at me and improve the curative setting. And that again, we are able to pick the higher risk patients, what me – what it means to have higher risk disease, how do we target them, newer drugs to target them. So, I think in so many ways we are doing better. And we are also getting to a place can we detect higher-risk patients, not just by their initial diagnosis and response, but follow them sequentially by circulating tumor cells?  

And we are getting to that place where we can actually do circulating tumor DNA, so just isolate the DNA, and we know what will belong to the tumor. And then circulating tumor cells seemingly even after your curative therapy. And so that is something that’s getting approved. And so we are not only seeing treatment, but we are also trying to see better detection of that reference. So, I think we are in so many ways, improving. And I am – I’ve been in this for 20 years, some of the things that thought was a dream is coming true. So, truly just keep living well and keep thriving. There are options. 

Katherine: 

Yeah. That’s, it’s positive. 

Dr. Ramaswamy:

Yes. 

Katherine: 

Dr. Ramaswamy, along with treatment can also come side effects. What are some common side effects of breast cancer treatment? 

Dr. Ramaswamy:

Yeah, great question. Again, an important question for you all to consider. So, let’s divide our treatment to targeted therapy and chemotherapy. The targeted therapy could be the estrogen receptors and then the HER2 because the HER2, again, remember that biomarker. And then the chemotherapy that any patient with breast cancer could get, including, of course, the triple-negative. And then we’ll touch base a little bit later on with the immunotherapy. So, when we look at the targeted therapy with estrogen receptor, anti-estrogen receptors, of course, it’s like putting you into menopause again. It’s like so you could have hot flashes, you could have some emotional liability and you could have vaginal dryness and sexual libido could be lower.  

And also you could have joint aches and pains and your bone density could go down and cause osteopenia and osteoporosis and fractures. So, those are some of the – and we can address all of those that we’ll come to later. With the HER2-targeted therapies, one of the main things will be the heart. These can affect the heart because there are some receptors that are present there that these HER2 therapies can affect the myocardial function. So, they don’t cause increase in heart attacks, but just the pumping action of your heart could go down. We keep checking your heart function to help with that. And then with the chemotherapies, other than your blood counts going down, these are acute events. Those blood counts could go down, which could put you at higher risk for infections. Again, some of the heart chemotherapies can affect the heart. So, we’ll keep an eye on that.  

And, of course, fatigue that comes with all of these treatments that can happen. But some of those chronic things that can happen is also neuropathy. So, tingling, numbness in your hands and feet, even sometimes pain in your hands and feet. And then this can stay on for a little bit longer and can cause some trouble buttoning your shirt or playing the piano or putting your earrings. So, it can affect your daily quality of life and cause pain. The other important thing, which we do have now an option is also hair loss. I know that is something hard for age. It’s so hard for women to lose hair and the consequence of being identified differently and not having that – when you look at the mirror, it’s a constant reminder.  

So, we do have something called a scalp cooling that you could take an option and discuss with your doctors whether that how helpful that’ll be for your type of chemotherapy and whether you could use it and you can – but 60 percent of the time not lose all your hair and need a wig. So, that is something that you can address. So, broadly, these are the issues that can happen. Again, this is very broad. Depending on your treatment, you still need to talk to your doctors. 

Katherine: 

How can some of these side effects be managed? 

Dr. Ramaswamy:

So, the key thing is to be first thing that I want to advise all our patients is that be vocal about your side effects. Okay? Sometimes we all think, okay, they did tell me I’m supposed to have all the side effects. I just need to keep quiet about it. That’s not what is important. And I think I did miss mentioning the GI tract changes like nausea, vomiting, or diarrhea. Again you think, oh, this is our part of all chemotherapy, I just need to keep quiet. No, that’s not the case because we actually give you anti-nausea medications before the chemotherapy. So, if it’s not effective, you need to have to tell your doctors, “Okay, this time I had a couple of sensations of nausea, but no vomiting.” 

Or “No, I was vomiting a lot.” Whatever it is. Even if  you had just nausea, it’s important to tell your doctors. If it’s diarrhea, you need to tell them. We do give you some medications, but if it’s not working, you need to tell them. And again, we always underplay the issues with sexual side effects because you don’t want to talk about that. I mean, it’s not important. No, it is important.  

It’s important for your intimacy, it’s important for your life, and it’s important for you to speak because there are supportive care therapies that we can provide. Neuropathy, again, I think your doctors will always ask you, but being vocal about it, being honest about it, and talking about it is important. So, again, fatigue.  

They are going talk to you about exercise, because exercise does overcome that fatigue. But if you’re not able to do it again, it’s honest to say, “No, but I didn’t do what you said last time.” So don’t feel bad about it. And there could be other ways we can improve your fatigue too. So, again, sharing those side effects is important and we can. We can address all of these side effects. Now, I’m not saying the minute we address these side effects it’s all going to go away completely, but they can get better. And it’s important for you to talk about it and get those supportive care measures. 

Katherine: 

Yeah, thank you for that. It’s really helpful. And it actually leads us into the next topic. Coping with emotions that come along with a breast cancer diagnosis such as anxiety and depression can be challenging. Why is it important to share emotional concerns with your healthcare team? 

Dr. Ramaswamy:

Yeah, so I think one of the things that the breast cancer patients, I mean, I would say all cancer patients, I’ll be honest, or any kind of chronic illness, fearful illness. And I think most what they – I think what hurts them most is the how isolating the journey is because despite having very close family and they might have full trust in their providers. At the end of the day, those fears, those sorrow of potential mortality and all the side effects has to be gone through them. They’ve got to go through that. And then validating their anxiety, validating their fears, validating their symptoms is so important. So, that’s why telling your patient I understand. Whatever it is, you’re going through an isolating journey, it’s hard, and I validate all your concerns that you have.  

We can’t really compare apples to apples here like patient to patient because you – we all have an inherent approach to a critical problem. And this is a critical problem that comes into your life and whatever that approach is of what – how you’re going to approach this. So, there’s no right or wrong and how she copes and you cope. And sometimes family does that and sometimes your own friends do that. Like, oh, it’s okay, but see she did well and she and you know and see how she’s coping. It doesn’t help. I think so educating the family as well to say or the spouse particularly validate their concerns, give validation and acknowledge their concerns and then say something positive to help them move forward. And I think these are important. And I think what I tell my patients is that I will never know what you’re going through if you don’t share it with me.  

And this would be both emotional and your physical and okay, I can pick some of it with your in a body language, but I can’t really pick the depth of the problems and we can address how to find solutions. The third point that’s important is there are solutions for this. It’s not like they’re going to get better completely, but we can help you. We can help you whether it’s emotional anxiety symptoms, we can find peer group that could help. We can find psychosocial counseling that can help. We can also help with actual treatment and medications that helps with depression and anxiety that we can manage better. And we can help you with your sleep because sleep is so important. And when you’re sleeping is when you start worrying about many things.  

And the same way with all your other physical side effects, there are some things that we can do. We are never going to say, “Well, put up with this. You just have to go through this to get better.” We never say that. We will try to address it in some way. Now, I do understand the limitations of what we can do and it doesn’t always get better to everybody, but if you don’t tell us, we can’t even try.  

So, it’s so important to share and sometimes sharing all this reduces the burden on you. So, and I think that’s important as well, so. 

Katherine: 

Dr. Ramaswamy, before we move on to answering questions from our breast cancer community, I’d like to touch upon the concept of shared decision- making. In your mind, what does that mean? 

Dr. Ramaswamy:

So, it is a concept that has come more lately in our lives. Even as I started, we didn’t – not that we didn’t do it, we didn’t give it a name. And I think now giving it a name always helps because we always think about it and make sure we are doing it. I think the shared decision-making is important on two levels. Sometimes we do have treatment options that are very similar as far as outcomes, so.  

It is important to understand what are the goals of the patient. Is it that even if it’s a 0.5 percent increasing their cure rate, is that their goal? Or really looking at the benefits versus the risks and versus side effects and trying to reduce the side effects and quality of life. So, I think this – those kinds of things, this will never be addressed if you don’t understand our patient and give them an opportunity to speak out what they want.  

So, I think in – and this happens in every aspect of their journey, right? So, it is important even if they say sometimes they’ll talk about sexual side effects and we talk about it and we offer some clinics. And they might say, you know what? At this point, I think I know you’ve shared with me certain ways. Let me try it and then I’ll tell you when. So, everything is the shared decision-making because that’s when we have the highest sense of compliance and to feel a sense of feeling that they’re being heard, and we are in this together. And if we are not in this together, it is almost impossible to get the best outcomes both from quality of life and also survival. So – 

Katherine: 

Yeah. 

Dr. Ramaswamy:

– that’s where the shared decision-making comes to. So, understanding the patient better and the patient understanding their outcomes better. 

Katherine: 

Yeah. Well, let’s get to a few audience questions that we received before the program. Rebecca writes, “I have skin itching as a side effect of my treatment. Is there anything that could be done to help?” 

Dr. Ramaswamy:

So, it depends on what she’s on and I’m going to assume maybe possibly like trastuzumab (Herceptin), pertuzumab (Perjeta) which are anti-HER2 therapies. They are – they can cause skin itching because they also get it for a year. So, I think the most important thing is of course discussing with your provider because is it one of these drugs that you’re on? Sometimes if it doesn’t get better with some of the – first things that we do is make sure you don’t have dry skin, that you’re ensuring that you’re putting a lot of moisturizers and addressing those. Where is your skin itching? Is there a rash associated with it.  

And so we kind of look at all of that and we can also give you some anti-itch medications if your itching is more at night when we all go to sleep. So, we can do that. And if it’s still there, then your provider can look at the pros and cons of is this drug causing it and is it worth pursuing it despite your itching, or taking it off so that it can improve quality of life. So, I think the most important thing is to make sure you talk to your doctor. And then they look at all of the others, the extent of their itching, the timing of their itching, and is there a rash, and then see whether the drug is causing and decide about holding or not holding the drug. 

Katherine: 

Okay. Good advice. Susan wants to know, have there been any advances in imaging or screening for a recurrence? And can anything be done to help prevent a recurrence? 

Dr. Ramaswamy:

So, let me answer the first question. So, we did – we have done clinical trials where patients got imaging that meaning CT scans even if they don’t have symptoms every four months, as opposed to the other group had only scans when they got symptoms. And we looked at two outcomes. One is, are they surviving longer? Because that is, of course, our primary goal. But actually, the secondary goal was, is their quality of life better? 

Katherine: 

No. 

Dr. Ramaswamy:

Many of us knew that survival is not going to improve because we understand this disease. So, you did not. The two groups do not have any difference in survival, but we were very surprised to see even the quality of life was not improved. That’s because every time you have a scan, there’s a lot of anxiety what you’re going to say. And then if there is some somewhere that could be nothing at all, now they say, I’m not sure whether it’s inflammatory or metastatic. Now you have to go and biopsy. Now the biopsy can lead to some side, I mean, some complications, or sometimes we’ll say, no, we can’t biopsy it. We’re going to watch it closely.  

Now it’s easy for me to say, and then I’ll walk out and go and see the next patient. But you are going to carry this heavy burden in your mind and think about, oh, my God, four months I’m going to wait. What if it’s grown? So, there’s a lot of anxiety that induces that we are not able to address. So, that’s why we don’t do routine imaging for all patients. But we have a very low threshold to do the imaging if you have symptoms that we are concerned about.  

And I generally educate my patients any persistent progressive symptoms. So, two-piece persistent progressive symptom. Please call, don’t even wait for the next appointment, and then we’ll move forward from that. So, as far as imaging, I can’t say that we have a better tool to identify those little mats and do something better. But like I had said before in this particular meeting, we are now looking to see whether we can find that circulating tumor cells or circulating in tumor DNA.  

And if that proves out to be good, we have some late FDA approval of a test. But if it is going to impact patients’ lives by doing this on a routine basis and we think we can start the treatment earlier and impact their outcomes, you are going to have another test that we can do, which is even simpler, which is just a blood draw test.  

So, I think we are going in that direction and we’ll know a little bit more soon. Now, your second question was, can we prevent a recurrence? So, everything that we are doing is to prevent a recurrence, right? Because if you think about it, your tumor is going to be removed by surgery, and so it’s out. And we are going to do additional radiation, which to just kind of pick those little cells if they’re left. And in certain circumstances, I would say in most circumstances we would do radiation. But we are also doing all these treatments that we talked about, chemotherapy, antiestrogen therapy. We are doing it longer. We are doing anti-HER2 therapy. We’re trying to pick those high-risk patients who didn’t respond so well. We are giving them more treatments to treat. They’re all to prevent a recurrence.  

That’s what we are doing. But the – I’m – we did talk about two other things as well. Exercising, eating right, making sure you’re not gaining weight, and making sure you’re engaged because your reduced stress and lack of – increased happiness improves good cells in your body, less inflammation in your body, all of this will help. Okay? And no doubt all of this to is to help your – reduce your recurrence. But the thing is what we are not able to say to a patient is that, okay, we’ve done all this, 100 percent you’re not going to have a recurrence. We don’t have that level of confidence in what we do. We can say you reduced your risk of recurrence, but we can’t just say you have zero chance of recurrence. That’s where we still can improve and we’ll continue to do better, so. 

Katherine: 

Thank you for those responses, Dr. Ramaswamy, and please continue to send in your questions to powerful to question@powerfulpatients.org, and we’ll work to get them answered on future programs.  

Well, to close out our conversation, Dr. Ramaswamy, I’d like to get your thoughts on where we stand with research progress. Are you hopeful? 

Dr. Ramaswamy:

Extraordinarily hopeful. I mean, and I say this like I even said before, some of the things I was skeptical about. I have to pull back my skepticism, which I’m very, very happy about. The role of immunotherapy starting to come into breast cancer, newer drugs, oh my god, therapeutics has improved our understanding of how to prevent these cancers. Picking up those high-risk patients, looking at these liquid biopsies, our understanding of genomics and precision oncology, I just have so much hopes. Management of brain mats with radiation treatments that are so targeted, improving, reducing, or mitigating the side effects with the treat – with the less treatments for those patients who have less risk. I mean, in every possible way, we are improving the way – what we are doing. Can we do better? Particularly in some areas I do want to bring it out. I think we still lag behind in health equity.  

I think still a in African American patients with the breast cancer has a higher risk of dying from breast cancer. We haven’t really impacted it as well as we can do. I think understanding the ancestry, understanding the risk, understanding the lifestyle behaviors that increases the risk of these aggressive cancers, say in African American women and in –and those are very, very important. Prevention is so much better than cure, right? So, I think a little bit better of our understanding on prevention and the liquidity. Both access and understanding the biology and treatment. Improving our clinical trial approvals. We still only even in the best cancer centers, we only approve 25 percent of our patients, 15 to 25 percent of our patients into cancer clinical trials. And look at the changes we’ve had.   

But imagine if we can put 50 percent of our patients on clinical trials, we’ll double the progress because without those clinical trials, none of these drugs can be approved. 

Katherine: 

Yeah.  

Dr. Ramaswamy:

So, what is today in a clinical trial is what is a tomorrow-approved drug. So, our understanding and talking about that becomes very, very important for us. And then I think lastly, there are some breast cancer like invasive lobular cancers that are only 15 percent that we still don’t understand as well. And so there are some more little pockets that I think we still need to understand. Male breast cancers are slightly starting to increase. We need to improve. So, there are areas we can do better, but overall, it’s absolute promising and very, very happy today. Our research is going really well, so, and it’s impacting patients’ outcomes.  

Katherine: 

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

Dr. Ramaswamy:

Thank you so much for taking this to the patients. I appreciate you. So, thank you. 

Katherine: 

And thank you to all of our partners. If you’d 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 breast 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. 

Empowering Patients: The Advantages of Remote Symptom Monitoring – Let’s AceCancer

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As we continue to see advancements in telemedicine and virtual care, remote patient symptom monitoring is becoming increasingly crucial.  It is important to highlight the significance of remote patient symptom monitoring and how it can benefit both you and your healthcare team.  

Remote patient symptom monitoring involves using technology such as digital health apps to monitor your health status, symptoms, and medical history remotely. While it’s commonly used for patients with chronic conditions, it’s also been shown to be beneficial for cancer patients receiving active care.  

Remote patient monitoring is important because it allows your medical team to detect and respond to changes in your health status in real-time, which can lead to early intervention and the prevention of complications. This can ultimately lead to improved health outcomes, reduce hospitalizations, lower healthcare costs, and improved quality of life.  

In addition, remote patient monitoring allows you to be more involved in your own care and also enhances your knowledge to make informed decisions about your health. For example, Celeste Jones, a 68-year-old woman, was recently diagnosed with breast cancer. She just finished her first round of chemotherapy and is experiencing side effects such as nausea, fatigue, and difficulty sleeping. Her nurse navigator at her community oncology center recommended a digital health app to help her manage her symptoms. She now uses her app to track her symptoms each day. She can quickly record how she is feeling, capture the severity of her symptoms, and make brief notes about any triggers that may have caused her symptoms.   

Lastly, remote patient monitoring can help you reduce your healthcare costs by preventing costly medical interventions and reducing hospitalizations and emergency room visits. Celeste can now manage her symptoms more effectively so that she doesn’t suffer in silence. She can also communicate with her medical team with better detail which can improve her overall quality of life. After using the app for more than 3 cycles of chemo she feels more empowered and in control of her cancer journey. By utilizing digital health apps, you can enhance communication with your healthcare team and take charge of your well-being. These apps facilitate interactive virtual communication between you and your care team, empowering you to improve your health outcomes.  

At Acellus, we are thrilled to collaborate with the Patient Empowerment Network’s digital sherpa®  program. Through this partnership, we can visit healthcare institutions and provide guided knowledge to older adults regarding the significance of acquiring basic internet, social media, and digital health skills. Acellus Health and Patient Empowerment Network are dedicated to empowering patients and emphasizing the power of knowledge.    

In conclusion, remote patient symptom monitoring is absolutely essential in today’s healthcare environment. With technology continuing to advance, remote monitoring will become even more relevant in healthcare delivery, allowing your healthcare providers to provide you with high-quality care no matter where you are. So, don’t wait any longer—activate it today!  

PODCAST: Managing Life With an MPN | What You Need to Know

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MPN expert Dr. Raajit Rampal shares advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr. Rampal also reviews tips and tools for managing symptoms and side effects and provides an update on new and emerging MPN therapies.
 
Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.

See More from the Empowered! Podcast

Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is a continuation of our Thrive series. And we’re going to discuss how to manage life with an MPN.  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.  

Let’s meet our guest today. Joining me is Dr. Raajit Rampal. Dr. Rampal, welcome. Would you please introduce yourself.    

Dr. Raajit Rampal:

Hi. Thank you so much for having me. I’m Raajit Rampal from Memorial Sloan Kettering Cancer Center where I focus on myeloproliferative neoplasms. 

Katherine Banwell:

Thank you so much for being with us today. 

Dr. Raajit Rampal:

My pleasure.  

Katherine Banwell:

As we do with each of the webinars in our Thrive series, let’s start with this question. In your experience, what do you think it means to thrive with an MPN? 

Dr. Raajit Rampal:

It’s a great question, right. I think taking a step back, when we think about our patients with MPNs, one of the questions I always have for patients are what are your goals. And inevitably and invariably, people want two things. They want to live longer and they want to live better. And so, I think that thinking about thriving with an MPN to me is about how do we minimize the impact of an MPN in someone’s life. And that means a couple of things. One that means how do we deal with symptoms or things that are causing medical problems. 

But two, how do we deal with the anxiety of a diagnosis? In many cases in my experience, that can be just as detrimental to somebody’s well-being as the actual physical symptoms of the disease.  

Katherine Banwell:

When it comes to choosing therapy for polycythemia vera essential thrombocythemia, or myelofibrosis, it’s important to work with your healthcare team to identify what is going to work best for you. So, to begin, would you define shared decision making and why is this critical to properly managing life with an MPN? 

Dr. Raajit Rampal:

Yeah. Shared decision-making, to me, is really about the physician or whoever is on the healthcare team providing the patient all of the information needed to make a good decision. That means what are we trying to do? What is the medication or invention going to accomplish? What are the side effects because there are always side effects.  

And what do we think that’s going to do or how is that going to impact the patient’s life? Where things get nuanced is that patients come to us because we have expertise. There are two extremes. One extreme is that the physician says this is the medication you should take. End of discussion. The other extreme though is also not helpful, which is to say to a patient here are five choices. Here are the side effects. You pick one. Our job is to lay out those side effects and the benefits but then, also help guide a decision. 

Katherine Banwell:

What are treatment goals and how are they determined?  

Dr. Raajit Rampal:

It depends on the disease to a large extent. Now, when we’re dealing with ET and PV, the primary goal of our interventions is to reduce the risk of a clotting event or bleeding event. And that usually involves controlling the blood counts in some cases, not in all patients with ET. 

Sometimes aspirin is all we do. Myelofibrosis is a little bit more complicated because it depends on what the problem is. Not all myelofibrosis patients have the same challenges. Some have anemia that needs treatment. Some have a big spleen. Some have symptoms and some have nothing and they just need observation. So, it’s a bigger list with MF patients. But I think the first part of the discussion always is defining what the goal needs to be. 

Katherine Banwell:

What factors are considered when choosing therapy for ET, PV, and MF? 

Dr. Raajit Rampal:

I think a couple of things. One is what medication we think is going to benefit the patient best. That has to take into account the individual, their willingness to take certain medications, for example, pills versus interferon injection. Some people have an aversion to self-injection, which we have to take that into account. What are the other medical conditions that the patient is dealing with? 

And the reality is, in some cases, it’s cost because these medications, depending on a patient’s insurance, can have quite a different spread in terms of cost. Unfortunately, that is something we have to take into account. 

Katherine Banwell:

Let’s talk about what sort of tests should be done following an MPN diagnosis. Can you tell me about those? 

Dr. Raajit Rampal:

Yeah. Fundamental to the MPN itself, the things that we really want to know is, in most cases, a bone marrow examination is needed because that will tell us really what the disease is that we’re dealing with. It will tell us about the genetics. I strongly believe we have to be comprehensive in our genetic assessments because that does prognosticate and sometimes gives us an opportunity in terms of treatment. Chromosomal analysis. These are the basic bread and butter hematology tests we want to do from the bone marrow to really understand what the patient’s disease is. 

Beyond that, I think that particularly in patients with PV and ET, it’s important that we partner with their primary care physicians to make sure that they’ve had, for example, testing for diabetes, a recent lipid profile, any cardiovascular tests, particularly measurements of blood pressure because these things are all important in terms of an ET or PV patient’s risk of having a blood clot. So, there are, again, things that are within hematology realm but then, there are other general health things that become really important in somebody who is diagnosed with PV or ET. 

Katherine Banwell:

How often should lab tests of blood work be done? 

Dr. Raajit Rampal:

It really depends on the patient. For some patients with PV, for example, they need to have their blood checked every three weeks because they’re having frequent phlebotomies. Whereas some patients with ET could probably go forward to six months between blood tests.  

So, it depends on the individual. 

Katherine Banwell:

How can results of biomarker testing affect treatment choices for patients with MPNs? 

Dr. Raajit Rampal:

 question. The genetics are becoming increasingly important in our treatment decisions. So, let’s take a simple example, which is patients with ET. Calreticulin and JAK2 and MPL are the three most common mutations that we see. But they have very different invocation. So, somebody could have a calreticulin-mutated ET and based on them having that calreticulin mutation and no other factors like no history of clotting, that patient may never need to go on a medication aside from aspirin. And even early on, it’s debatable whether or not some of these patients really need aspirin at all. 

Whereas somebody who had a JAK-2 mutant ET, our guidelines and data suggests that that person, once they reach a certain age, should probably be on medication. So, that’s kind of perhaps one of our more clearcut examples of a genetic biomarker telling us how to approach treatment. 

And then, it gets more nuanced from that and more exciting and interesting in the sense that there are mutations, for example, that occur in myelofibrosis and in patients whose disease is progressing towards leukemia, such as IDH mutations. And these are things that are now targetable with FDA-approved drugs.  

And there are now clinical trials combining JAK inhibitors and IDH inhibitors for patients who have more advanced disease who have these IDH mutations. So, you go from on one end, these genomic markers being of prognostic significance and now, on the other hand, we’re getting to a point where, in some cases, they might tell us how to best treat a patient. 

Katherine Banwell:

Dr. Rampal, should all patients diagnosed with MPN’s undergo molecular testing? 

Dr. Raajit Rampal:

I strongly believe that. I think that we’ve learned so much that these tests have prognostic value. 

And in some cases, it may suggest a slightly different diagnosis. I definitely think that should be the case. 

Katherine Banwell:

What should patients be asking once they have the results? 

Dr. Raajit Rampal:

What does it mean? That’s the most basic and fundamental question. It’s one thing to get a list of mutations. But the real bread and butter question is what does this mean to the disease and my prognosis and my treatment?  Those are the key questions.  

Katherine Banwell:

So, what are the types of treatments available for MPNs?  And let’s start with myelofibrosis or MF. 

Dr. Raajit Rampal:

If we had had this discussion five years ago, it would be pretty simple, and it would take a minute or two. And that’s completely changing and that’s amazing, and it’s good for all of our patients.  

Right now, for patients with MF, it depends on what the issue is. If the issue is symptoms or spleen, JAK inhibitors are our first line of therapy. Three approved JAK inhibitors are currently available, two on the first side ruxolitinib (Jakafi) and fedratinib (Inrebic). And pacritinib (Vonjo) can be used for patients with really low platelet counts.   

There is a fourth JAK inhibitor that we expect to be, hopefully, approved in June of this year, momelotinib. So, the landscape is about to complete broaden in terms of just JAK inhibitors.  

But beyond the JAK inhibitors themselves, there are a number of late stage clinical trials that are combining JAK inhibitors with agents that work through a different mechanism that don’t work through inhibition of the JAK pathway. So far, these drugs have all shown promise in early phase trials. Now, the definitive Phase III trials are being done. We have to wait and see what the data tells us. But if these are positive trials, this could completely alter the landscape of MPN. 

Katherine Banwell:

There’s also transplants available, right? 

Dr. Raajit Rampal:

Correct. Transplants for more advanced patients, which comes with some major risks. And so, that has to be thought of very carefully in terms of the risks and benefit. But it is a potentially curative strategy.  

Katherine Banwell:

Let’s turn to polycythemia vera or PV. What types of treatments are available? 

Dr. Raajit Rampal:

It’s really quite a range. So, there are things like phlebotomy and aspirin, which has been the mainstay of therapy for many years. There are drugs like hydroxyurea (Hydrea), interferons, JAK inhibitors. So, ruxolitinib is approved in certain settings for treating polycythemia vera. So, the landscape is broad. There are a lot of questions going on right now with polycythemia vera with regards to how it should best be treated. Is the mainstay of phlebotomy and aspirin really what we should be doing or should we be giving patients treatment earlier on. 

And there is some data to suggest that. There is this drug called ropeginterferon (Besremi) that’s FDA-approved for polycythemia, which was compared in the study to phlebotomy and aspirin.  

And at least the data suggests that there may be better control of the disease and less progression possibly, and it’s a small number of patients, by treating patients earlier. Whereas we would have just given phlebotomy and aspirin. So, it’s something to consider. There are drugs in clinical trials as well that look promising one of which is called rusfertide, which actually works by changing the way iron is used by the body. 

Iron is a key component to hemoglobin and it is, of course, a key component to polycythemia in the sense that we phlebotomize patients to make them iron deficient and that’s how we control the disease. But this is a pharmacological way to do that. So, that drug is now in Phase III trials. So, that may also alter the landscape of treatment of PV in the near future. 

Katherine Banwell:

Finally, how is essential thrombocythemia treated? 

Dr. Raajit Rampal:

So, in some cases, with absolutely nothing as we had talked about a moment ago. There is some thought that in really, really low-risk patients. Maybe you don’t need to do anything except observe them. Whereas most patients are on an aspirin. And beyond that, we have drugs like interferon, pegylated interferon, and hydroxyurea and anagrelide, all of which can be utilized. It’s not entirely clear if there is one distinct first line treatment that is the best but these drugs are all active. JAK inhibitors have been studied in this setting. And to date, the data hasn’t led to their approval but, certainly, people have studied it.  

Katherine Banwell:

Dr. Rampal, how can you tell if a treatment is effective? Are there signs that you look for? 

Dr. Raajit Rampal:

Well, I think it’s a couple of things.  

One, are we meeting the treatment goals in terms of are we controlling blood counts with ET or PV? That’s one of the first principles in management. And with regards to MF, the same thing. Are patients’ symptoms being controlled? Is the spleen being adequately controlled? And then, there’s the symptom burden because just because the blood counts are being controlled, patients may still have symptoms, in which case, they are not being adequately treated. And then, we have to do our best to try to find a treatment strategy that does control their blood counts but also does control their symptoms. 

So, there is the blood count perspective but there is the symptom perspective as well. 

Katherine Banwell:

How do you know when it’s time to change treatments? 

Dr. Raajit Rampal:

Well, I think really two things. One is if we aren’t meeting our goals like we just talked about. But the other aspect of that is if we are incurring toxicities that are just not tolerable to the patient and that’s a reason to change therapy always. 

Katherine Banwell:

Many patients, of course, worry about disease progression. Are there key predictors or tests for progression that patients should know about? 

Dr. Raajit Rampal:

This is a key area of investigation currently. I think one of the things that patients say to us so often when we meet them is what’s going to happen to me. And right now, we don’t have great prediction tools. We can say on a population level well, there is X percent of chance of progression at 15 years. That’s useful if you’re talking about a population. That’s not really useful if you’re talking to an individual. Because if I say to somebody there’s a 20 percent chance of your disease progressing to leukemia, it doesn’t really make a difference. That’s a meaningless statement because if you’re in the 20 percent who progress, it’s not a relevant statistic anymore.  

It’s sort of a binary thing. We’ve got to do better at developing this. This is something that the MPN Research Foundation is really heavily invested in in trying to identify predictive biomarkers. 

If we can do that, then perhaps what we can do is say to a patient this is really what we think your actual risk is. And then, the next step is asking the question if we intervene early, can we prevent that progression from occurring. So, that’s where I think we need to go. We aren’t there yet. 

Katherine Banwell:

What signs or symptoms do you look for that may indicate that the disease is progressing? 

Dr. Raajit Rampal:

The blood counts are often the canary in the coal mine regardless of the disease. They can tell us if ET or PV is progressing into MF or whether MF is progressing to more of a leukemic phase. Changes in symptoms sometimes can be a harbinger of disease progression. So, Patient 2, for example, is doing really well and now, he’s having drenching sweats and losing weight. So, those types of symptoms are a sign that physical findings is the size of the spleen if it’s increasing. 

All of those things together give us a hint about progression.  

Katherine Banwell:

Well, is there any way to prevent progression?  

Dr. Raajit Rampal:

That is the million dollar question. Again, that’s where we ultimately need to be. We want to be able to intervene to a point where patients don’t get that sick. It would be amazing if we’d come to the point where we can intervene early and nobody progresses to late stage MF. Nobody gets leukemia. And I think that’s a worthy goal. That’s not something that we should think is too lofty of a goal. That should be our ultimate goal here. And a number of groups are investigating this exact question. It’s complicated and it’s going to take time. But I think that’s a worthwhile investment. 

Katherine Banwell:

Let’s talk about MPN symptoms and treatment side effects. Here’s a question we received from a viewer before the program. How common is peripheral neuropathy in primary myelofibrosis? 

And what is the best treatment for it? 

Dr. Raajit Rampal:

Well, by itself, it’s not a very common symptom of MF by itself. Can it be a symptom? Sure. But there are also a number of things that can cause peripheral neuropathy. So, I’m not sure there’s a best treatment.   

But what needs to be done is a thorough investigation. There can be a number of causes. It could be nerve injury. It could be a deficiency in vitamins like B12. There are a lot of things that could cause it. So, that type of a symptom needs to be thought of in a broad way in terms of diagnosis.  

Katherine Banwell:

Jeff sent in this question. How could I manage the itching? Are there new treatments or strategies to live with itching? 

Dr. Raajit Rampal:

Very common thing. And it’s an interesting thing explaining to when we teach our trainees about this symptom, we have to impress on them the fact that itching is not the itching that everybody else experiences. 

This is a very profoundly different symptom. It’s debilitating for so many people. I have patients who go to the Emergency Room for that. That’s how terrible it could be. There are a lot of things that could be tried. JAK inhibitors, in my experience, work very well for itching but not in everybody. We use sometimes antihistamines that can work well. Sometimes, antidepressants can work well, not because they’re treating depression but because of other properties that they have. And sometimes, UV light therapy can be useful tool here, too. A lot of patients swear by it. 

 Katherine Banwell:

Another common side effect is fatigue. Do you have any advice for managing this symptom? 

Dr. Raajit Rampal:

Fatigue is the most common symptom across MPNs. And it is also one of the most difficult things to treat. Part of the issue is trying to figure out what does fatigue mean to the patient.  

When someone says they’re tired, does that mean they’re sleeping all of the time? Does that mean they don’t have get up and go? The first step is always understanding what does fatigue mean to the patient? And then, the second is trying to dissect that. In some cases, it’s related to anemia, in some cases, it’s not related to anemia and it’s just the disease itself.  

And in some cases, you have to think outside of the box about general medical issues like thyroid dysfunction that could be at play here. So, there isn’t one best fit. 

But the first test is always to dig deep. When someone says they have fatigue to dig deeper and try to figure out what is that really. 

Katherine Banwell: 

What other common symptoms do you hear about from patients? And what can be done about those?  

Dr. Raajit Rampal:

There are a lot of different things. It’s a spectrum. So, I think that itching and fatigue are very common. Feeling full early is, that’s a big thing, particularly in myelofibrosis patients.  

Bone pain, that’s another big one, particularly in myelofibrosis. There is not one therapy that is best for all. I think the JAK inhibitors, certainly, benefit many of these symptoms. But they don’t benefit everybody and not to the extent that makes it tolerable for everybody. So, often times, we struggle with this and try a lot of different things. But, again, I think one of the things to always remember is we don’t always want to say that this must be because of the MPN. Sometimes, symptom is arising because of another medical condition that’s going on concurrently. 

Katherine Banwell:

That’s good advice. Thank you. Let’s answer a few more audience questions we received. This one is from Calvin, “If your hematologist says you’re stable and responding well to Hydrea, should you still seek out a second opinion?” 

Dr. Raajit Rampal:

It’s never wrong to seek out a second opinion. I strongly believe that, especially when you’re dealing with a disease that’s rare like this. 

And even seeking out a second opinion, even if you’re under the care of an expert in the field is never a wrong thing. I think that no one person knows everything. And sometimes, people’s experience and perspective is different. So, I don’t think that’s a bad thing ever.  

Katherine Banwell:

As a follow-up to Calvin’s question, is it sufficient to just look at what the blood tests reveal? Or does having  bone marrow biopsy dictate what treatment you should follow? 

Dr. Raajit Rampal:

I think the bone marrow is important, particularly at initial diagnosis or when there is a change. The blood counts are the canary in the coal mine. So, they tell us is there something else going on that we’re not thinking about. And that’s when the bone marrow becomes important. So, I definitely think bone marrow is important at certain points in the disease.  

Katherine Banwell:

Sandra has this question, “Are there new treatments for polycythemia vera being researched beyond interferon?” 

Dr. Raajit Rampal:

Yeah. So, we talked about rusfertide as an example of this. And there are, certainly, other drugs that have been evaluated in this space. So, there is a lot of work going on for this disease, which is really encouraging. 

Katherine Banwell:

Carolyn sent in this question, “Is there a possibility of bone marrow fibrosis reversal in myelofibrosis without a stem cell transplant?” 

Dr. Raajit Rampal:

The answer is yes. So, even with JAK inhibitors, we see that about a third of patients will have a reduction in bone marrow fibrosis. And this is a key question being investigated with some of the newer therapies that are being introduced into the treatment of myelofibrosis. And, certainly, we’ve seen data to date that suggests that the fibrosis can be reduced if not potentially eliminated in some cases.  

Katherine Banwell:

Dr. Rampal, should all patients diagnosed with MPNs undergo molecular testing? 

Dr. Raajit Rampal:

I strongly believe that. I think that we’ve learned so much that these tests are prognostic value. 

And in some cases, it may suggest a slightly different diagnosis. I definitely think that should be the case. 

Katherine Banwell:

What should patients be asking once they have the results? 

Dr. Raajit Rampal:

What does it mean? That’s the most basic and fundamental question. It’s one thing to get a list of mutations. But the real bread and butter question is what does this mean to the disease and my prognosis and my treatment?  Those are the key questions. 

Katherine Banwell:

Andrew wants to know does Jakafi cause other mutations to develop? 

Dr. Raajit Rampal:

That’s a really good question. Right now, we don’t think the answer is necessarily yes. We have seen that in some patients where the disease has progressed on Jakafi, mutations have emerged. 

But the problem is that genetic testing has limits of detection. In other words, the mutation appears, it may not have just appeared or been caused by the drug but that it may have been below our limits of detection and actually grew while the patient was on therapy, which does not mean that the drug caused the mutation but that it was allowed to emerge during treatment with the specific drug. So, that is an area of investigation.  

Katherine Banwell:

Well, thank you, Dr. Rampal. And please continue to send in your questions to question@powerfulpatients.org and we’ll work to get them answered on future webinars.  

You mentioned earlier clinical trials. And I’d like to dig a little bit deeper. Where do these fit into the treatment plan? 

Dr. Raajit Rampal:

I think they should always be considered. None of the therapies that we have do we consider curative. And in many cases, standard therapy is fine given a patient’s clinical situation. In a case where standard therapy is not working or where we think that a patient’s prognosis is particularly challenging, or if they have mutations that may confer resistance to current therapies. 

I think in those scenarios, a trial should always be considered. 

Katherine Banwell:

So, if a patient is interested in possibly participating in a clinical trial, what kinds of questions should they be asking their healthcare team? 

Dr. Raajit Rampal:

All of these trials are different. I think the first thing is to discuss what’s the risk, what’s the benefit of any given trial or drug. What stage and development is it? What’s the evidence to support it? And what can I expect from it?   

Katherine Banwell:

What about cost? 

Dr. Raajit Rampal:

So, trials, in general, have two components. One is what we call standard of care meaning that things we would do normally for in the course of a patient’s treatment would be billed to a patient’s insurance as if they weren’t on a trial. 

Almost all trials, the study drug or any tests that are being done specifically with regards to the study drug are all covered by whoever is sponsoring the trial.  

Katherine Banwell:

How do patients find out about where the clinical trials are taking place? 

Dr. Raajit Rampal:

Usually, their physician should either, if they’re in a specialized center, they’ll have access there. But if they’re interested in trials and they’re being seen, for example, by a physician in the community who doesn’t necessarily specialize, asking for a referral to a major center where that MPN expertise is not an unreasonable approach to that. There is also clinicaltrials.gov where patients can go look for ongoing trials for their particular diagnosis.  

Katherine Banwell:

So, if patients want to learn more about MPNs, what sort of resources would you recommend? 

Dr. Raajit Rampal:

The thing I always say to patients is the internet is a very dangerous place for a variety of reasons. We have to, I think, do a good job of communicating to patients what are the resources. And the ones that I always point patients to are, for example, the MPN Advocacy International, the MPN Research Foundation, The Leukemia & Lymphoma Society, and the American Cancer Society. Those are sources of information that are vetted by physicians. 

Some of that information is specifically for patients. Those, to me, are good sources for patients to read.  

Katherine Banwell:

Dr. Rampal, as we close out our conversation, I wanted to get your thoughts on where we stand with progress and MPN care. Are there advances in research and treatment that make you hopeful? 

Dr. Raajit Rampal:

Without a doubt. I think I’ve seen more progress in the last three years than I’ve seen in the last 10 years. And we have so many new drugs coming forward, new questions that we’re trying to answer, tough questions as you alluded to. The question about prognosis but also intervening early to prevent progression of disease. These are things that are difficult questions that we are trying to dig into now. So, I think we should be optimistic. We are seeing so many excellent developments. We’ll have to see how far they’re going to take us. I don’t think we know the answer to that. But this is an exciting time.  

Katherine Banwell:

Dr. Rampal, thank you so much for joining us. 

Dr. Raajit Rampal:

My pleasure.  

Katherine Banwell:

And thank you to all of our partners. To learn more about MPNs and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.