PEN Blog Archives

PODCAST: CLL Patient Expert Q&A: Dr. Danielle Brander

November 15, 2023/in CLL Podcasts ND, CLL Podcasts TC, Empowered! Podcast, PEN Blog /by Kara Rayburn

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Transcript:

Lisa Hatfield:

Welcome to this START HERE, Patient Empowerment Network program. This program bridges the CLL expert and patient voices, enabling patients and care partners to feel comfortable asking questions of their healthcare team. Joining me is Dr. Danielle Brander, a CLL specialist serving as assistant professor in the Division of Hematologic Malignancies and Cellular Therapy at Duke University Medical Center. Dr. Brander directs the chronic lymphocytic leukemia or CLL and lymphoma program and serves as primary investigator for CLL focus clinical trials. Thank you so much for joining us, Dr. Brander.

Dr. Danielle Brander:

Thanks for having me, Lisa.

Lisa Hatfield:

The world can be complicated, but understanding your chronic lymphocytic leukemia diagnosis and treatment options doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of CLL treatment and survivorship. Before we get started, please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. So let’s get started. Dr. Brander, I’d like to talk about what’s on the CLL treatment radar. There’s a lot going on in terms of emerging treatment options, clinical trial data, and other learnings from the CLL community. Before we jump into a detailed discussion, can you provide an explanation of what CLL is?

Dr. Danielle Brander:

Absolutely. So CLL, or chronic lymphocytic leukemia, we generally think of as blood cancer. But often as you hear the ending of that, the name leukemia, we also think of it as a lymphoma, meaning patients can have the spectrum of an elevated white count like you might think of in terms of a leukemia. They can also, like a lymphoma though, have enlarged lymph nodes or spleen. And often patients are diagnosed incidentally and that just means that they’re…in seeing their physician or their medical team for other reasons. And they might have had a blood test, and their white counts elevated.

Or they might notice they have a tiny enlarged lymph node or found on screening for other cancers, for example. And so the takeaway there is that many patients don’t necessarily have symptoms and certainly often many patients don’t have reasons to need to start treatment at the time they’re diagnosed. So in terms of what it is today, I think more and more patients are being diagnosed both because it is something that comes about as patients get older, but also because it’s found during routine other visits. And so more and more patients I think are found incidentally that way.

Lisa Hatfield:

Okay, thank you. So just a follow-up question to that, if a patient goes into their primary care provider and finds something unusual that might indicate CLL, will they be referred to a hematologist right away at that point? Usually?

Dr. Danielle Brander:

So that is a great question. Often they are, for example, if they’re noted to have a high white count or, specifically a type of white cell called lymphocytes. However, there are many things that can cause that or cause a small lymph node. And so, some primary care appropriately, if those changes are small and they could be due to other things like an infection, for example, then their primary care might want to follow up first. And if things go away, it may not be related to a cancer at all.

But if it’s something that persists or it seems very out of range, or primary care, who, you know, are specialists and seeing kind of changes all the time, and may say this seems a little bit out of range, then even before something’s diagnosed, patients might be referred to a hematologist or an oncologist to help with that workup. But often because primary care is so astute in seeing these things, they may counsel patients to say, let’s send this test or this test to get things going while we’re speaking to a hematologist or oncologist.

Lisa Hatfield:

We have CLL patients and care partners who are newly diagnosed in active treatment, watch and wait, and also living well with their disease. Joining this program no matter where you are in your CLL journey, START HERE provides easy-to-understand, reliable, and digestible information to help you make informed decisions. So, Dr. Brander, we’re going to get into a more detailed discussion now of CLL. Can you talk a little bit about the novel pathways and targets that are currently under investigation in CLL, and what are the most important highlights from those for patients and their families and care partners?

Dr. Danielle Brander:

Yes. So over the last decade or even the last five years, for patients diagnosed with CLL, there’s been a very encouraging and marked change in the available treatments that is, you know, not that many years ago we generally only had chemotherapy or chemotherapy combined with these antibody targeted treatments that we call immunotherapy sometimes.

But in the last 5 to 10 years we’ve seen quite a remarkable change in treatments that target, meaning often they go after pathways or ways that the CLL cells have learned to grow or have learned to not die the way that normal cells should, die after certain time points. The two main categories of treatments that are approved for CLL treatment, either for patients as a first treatment or patients that have had treatment before including prior chemo or other agents are called BTK inhibitors or BCL-2 inhibitors.

BTK is something inside the leukemia cells. It’s also in some of our other cells. But in the CLL cells particularly, they’re very sensitive in needing that protein. So in targeting that BTK inhibitors keep the cells from getting the normal signals that they need to stay alive, and so the lymph nodes that are big get smaller, a spleen that might be big get smaller, white count eventually comes back down, for example. And those BTK inhibitors have also already encouragingly changed over recent years.

So there was…you’ll hear people say first generation, these were the first inhibitors that came out, that was a drug called ibrutinib (Imbruvica), which is still around. And then there are second generation that are approved that have come out as first treatment or treatment for previously patients that receive treatment.

Those second-generation BTK inhibitors are called zanubrutinib (Brukinsa) and acalabrutinib (Calquence) that are approved. The main other approved category of these targeted treatments I mentioned is venetoclax based treatment. And that targets something different, that targets a set of proteins inside the cell that tell the cell to stay alive too long. And so you have this accumulation and venetoclax targets that pathway. And the last thing I’ll mention about the BTK inhibitors that’s emerging is now there are trials of what are called non-covalent BTK inhibitors.

So they work in a different way, they go after BTK and so that they can work. The non-covalent, even for patients where the first and second-generation, traditional covalent BTK inhibitors I mentioned stop working, those are not yet approved officially for CLL, though they’re approved in mantle cell lymphoma. That’s a drug called pirtobrutinib (Jaypirca), that’s a non-covalent BTK. And the reason that emerging set of treatment, as I mentioned, is important is because it can work for patients where the first or second-generation covalent BTK inhibitors stop working. The venetoclax (Venclexta), as I mentioned, works by a different mechanism. So patients, of course, where the BTK stopped working, in many cases venetoclax can be helpful as well.

Lisa Hatfield:

Great. Thank you so much. So I read a little bit, I did a little research on trials that you’re involved in, and there is a trial the EVOLVE CLL trial, and I wonder if you can talk about that a little bit because I think it is exciting for patients to hear that there might be an option for earlier intervention. And I’m not sure if you’re allowed to talk about any results yet, but if you can speak to results, that would be great to hear about those results too.

Dr. Danielle Brander:

Well, yes and no, thank you for bringing this up because this is very important. As you mentioned, it’s called the EVOLVE study. It’s led by a national cooperative group called SWOG, meaning there are lots of places that it’s available, not just larger centers, but smaller oncology centers as well. And this is to look at what’s called early intervention, meaning as we spoke about before, most patients with CLL don’t need treatment at the time that they’re diagnosed. The reasons for treatment are, we call those treatment indications are based on three main categories that I’ll just review. For some patients, it’s new or progressive symptoms like weight loss or, very symptomatic limiting life day-to-day activities like night sweats or fatigue, for example, that’s the first category of reasons some patients might need treatment is unmanageable side effects.

The second main category is if the lymph nodes get very large or impacting on organ function, or the same for the spleen, it’s getting very large to a certain size, or it’s affecting your ability to eat regular meals or losing weight. And then the last category of treatment indications that we generally wait to start treatment for are if it’s affecting the normal blood count.

So there’s not one magic white count where patients need to start treatment, but almost like weeds in a garden, if those CLL cells are crowding out the red blood cells, so the hemoglobin’s falling or it’s crowding out the platelets, so the platelets are crowding and can’t grow and reach a certain threshold, then we recommend treatment. Of course, there are scattered other reasons, but those are the main three categories. And the reason of waiting to start until those are met is because historically trials have been done to look at waiting for those indications versus treating around the time of diagnosis.

Those trials so far have included chemotherapy by itself or chemotherapy in combination. And most recently there was a trial looking at first-generation ibrutinib that was given continuously. And so far there’s been no survival. So no life expectancy benefit to early treatment versus waiting for those indications. And the other reason generally not treating all patients is because some patients never require treatment, about a quarter of patients. So if we offer treatment to everybody, at the time of diagnosis, there are patients that would get treatment that would be exposed to side effects and never needed. But what the EVOLVE study is uniquely looking at is randomizing. And randomizing means some patients will get treatment and some patients will wait until those traditional reasons to need treatment. But for those randomized to receive therapy, it’s that venetoclax based treatment combined with this antibody called obinutuzumab (Gazyva).

And the way that treatment is given for patients, is the same way it’s given for patients who outside of the trial need treatment, meaning they get the antibody infusion, then they get the venetoclax pill, but it’s for a fixed duration, meaning a total of one year of treatment. The trial is also only for patients with higher-risk CLL. So as I mentioned, some patients never need treatment, some patients do, some patients need it quicker. So rather than looking at this trial and saying all patients, including those with CLL, that’s likely to be slower-growing. The EVOLVE trial is only for patients who are more likely to need treatment in the next couple of years. And the way that’s determined is a score called the CLL-IPI score, and CLL-IPI tries to identify patients more likely to need treatment in the next couple of years by a couple of key factors.

Stage at the time of diagnosis, it looks at age, and it looks at key factors of the leukemia itself, including something called deletion 17P or TP53, because that marker in the cells is a high risk of eventually needing treatment. So to answer your question, what EVOLVE is looking at is taking higher-risk patients, so patients rather than all patients more likely to need treatment anyway, and around the time of diagnosis, randomizing to either be treated or to follow the traditional, sometimes called watch and wait or dynamic monitoring until they reach traditional markers. And ultimately, and it’ll likely take many years to look at, ultimately the question is looking at if that helps prolong patient survival by having higher-risk patients receive that fixed-duration treatment earlier in time. We don’t yet have any results or any results to share, because the study is still enrolling.

But again, I think it’s something for patients to be aware of, because it does look at the higher risk patients. But around a year, it has to be within a year of diagnosis. So patients who are newly diagnosed, the question to ask your oncology team is “Do I qualify?” if it’s something you’re interested for, and they’ll help walk you through that. If you haven’t had markers checked, for example, it might be a good time to ask about that, to see if this is something would be available, even if not available though, it does create a time to talk to your team about the markers, because those can inform regardless of trial or not maybe what to expect in coming years and likelihood of treatment.

Lisa Hatfield:

Great, thank you for that. So as a cancer patient, one of the biggest questions I had when I was diagnosed, you hear the word “cancer” or in this case “CLL leukemia.”Two questions. One of them, is there a cure for CLL? And if not, are any of the…are there any trials looking at a cure for CLL?

Dr. Danielle Brander:

Yes. Excellent. An understandable question. Traditionally, we say that CLL or others slower-growing, or sometimes you’ll hear the term indolent lymphomas, do tend to be slower-growing. Some patients don’t need treatment. But the flip side of that is we generally think of them as not curable, that they’re a chronic condition and that treatment, the goal of treatment is to knock it down and relieve whatever symptoms or indications or reasons you’re starting treatment are.

But at some level, we historically think of CLL as either eventually coming back or sticking around, so to speak. However, I think most oncologists, most those in the field, feel that some of the treatments that are around or in combination, that we’re going to have some patients that have maybe what a term might be functional cure or individual, cure-like condition.

Meaning if our newer treatments for some patients can knock down the CLL so much that it either doesn’t come back or take so long to even show itself again, in a way that serves as what the purpose of cure, really is, which is to get it down to levels that it’s not causing problems or not coming back, for the lifetime of the patient. Bone marrow transplant is the only therapy historically that has been cured, has offered a cure for some patients. The downside and the reason that most patients aren’t referred to for bone marrow transplant is the risk side of it. Meaning, unfortunately, a bone marrow or stem cell transplant has such a high risk of directly causing side effects.

That could be life-limiting or chronic side effects from the transplant itself versus the agents available now that we aren’t using or referring to bone marrow transplant nearly as much, but I think it’s really encouraging what we’re seeing in responses. So we talked already about those main categories of BTK inhibitors or venetoclax, I didn’t yet talk about, but there are many trials that have looked at those in combination, or CAR T, for example, or bispecific antibodies that are knocking down the CLL to such low levels. But the hope is that serves as a way of functional cure. But it’s going to take time to see if that’s the case. But we’re all very encouraged and really believe that that’s on the horizon.

Lisa Hatfield:

Great. Thank you so much. And even a functional cure sounds really hopeful, so I’m happy to hear that term. Thank you. And I want to be cognizant of your time and the time of everybody watching. So we are going to move into some of the questions that we’ve received from you watching this, patients. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care and always consult with your own medical team. So, Dr. Brander, let’s start here. How do you explain, you kind of covered this a little bit, CLL treatment options and prognosis to your newly diagnosed patients? And I think that the prognosis piece is really important, especially if they do start treatment.

Dr. Danielle Brander:

Sure, absolutely. So, what are the things we’re looking for in terms of needing treatment? Because some of those, especially the symptoms we’re noting a lymph node or spleen, for example, or symptoms of anemia, which is low red cells or bleeding from low platelets, it’s helpful for patients to understand what we’re looking for, but, of course, in the time between visits those are the things we want to help patients with if they notice.

And so we encourage them all the time to call our triage or send us, you know, most electronic medical records now, have ways to send your team a message. And we want to know about that from patients in between visits. In terms of prognosis, as I mentioned before, there are other CLL-specific labs usually on the blood, meaning a regular blood draw.

Most patients don’t need another lymph node biopsy or a bone marrow biopsy, though that happens in some cases. And two of those or some of those key markers I mentioned before, but they test in the leukemia, there’s one test called the FISH, F-I-S-H, it’s not specific to CLL, we use it in other cancers. But it’s to look for specific changes in the leukemia genomics, meaning the DNA, the genetic material of the leukemia, not genetics you’re born with, but the cancer itself.

And there are specific patterns and that can be helpful as I sit down with patients to say this isn’t 100 percent, but this is kind of what to expect and likelihood of needing treatment over the next couple of years. There’s another test called IGHV, another mutation test TP53 kind of beyond this to go over right now, but as you mentioned, I think it’s important to meet with your medical team and say, ‘How does this pertain to me specifically?”

In terms of prognosis, I think there’s two parts to that of understanding what to expect. There’s likelihood of needing treatment, there’s likelihood of time to treatment, and those kind of markers and staging system help in a good way. Right now, our historical expectations, meaning 5 or 10 years ago, we could often also sit with patients and say, “This is the prognosis in terms of survival.” Expected life expectancy on average, but in a good way, most of our systems nowadays with the newer treatments likely vastly underestimate patient survival, meaning those systems were designed when we only had chemotherapy treatments.

Now, we know patients even with the highest risk markers, the faster progressions are living, you know, years and years beyond what was expected with chemotherapy. So I just caution especially materials around from just a couple of years ago that likely they don’t pertain, but they can be helpful in knowing what to expect.

Lisa Hatfield:

Great, thank you for that. Answering that question. We have a couple of questions about BTK inhibitors, and you already talked a little bit about the role of those and why they’re significant in treating CLL. But another patient’s asking about the, of course, a lot of patients wonder, what are the side effects? They hear chemo and like, “Oh, my gosh, the side effects are going to be off.” Can you talk about the side effects and even maybe some unusual side effects that you’ve heard of from patients when using the BTK inhibitors?

Dr. Danielle Brander:

Sure, absolutely. And so again, really important, these are things that as we maybe anticipate patients are going to start treatment, this is a long discussion of deciding between treatment, for example, as first treatment. There’s no trial saying one path is necessarily better than the other. So we try to individualize choosing between BTK inhibitors or that venetoclax-based therapy I mentioned. Some of that though comes about and what expected side effects are expected side effects for the individual. I try for patients to hear it from myself, other members of the team, the nurse, our pharmacist, for example.

And so patients shouldn’t feel overwhelmed to keep asking about what to expect or new side effects. There are some side effects we talk about regardless of the treatment. So I’ll just point out, anytime you’re starting treatment, you’ll hear the team talk about risk for infection, monitoring for fevers, reaching out to us about those kinds of side effects, lower blood counts that can happen regardless, not specific to BTK though it can happen there as well.

There’s some specifically though with BTK inhibitors, we ask patients to watch out for. Some BTK inhibitors can cause some cardiovascular side effects, meaning watching out for funny beating of the heart or what we call palpitations, skipped beats. There can be arrhythmias, some patients can have with time elevation in their blood pressure, for example. And then risk for bleeding, meaning BTK inhibitors affect how the platelets stick together similar to what aspirin does.

So the platelet levels may be normal but patients might have easier bruising, just generally manageable. But if there’s any kind of bleeding, certainly the team should be aware. It’s also the reason though, if you’re on a BTK inhibitor and you have a planned surgery or procedure, let your team know, because we may recommend or a lot of times recommend holding the medication before and after certain surgeries or procedures.

Other side effects can be muscle or joint aches. Some patients have some gastrointestinal side effects like looser stools or sensitivities to certain food causing looser stools, for example. And then there are some that are specific to the individual BTK inhibitor. This is the one point I’ll mention that first-generation BTK inhibitor ibrutinib, part of the reason for the second-generation zanubrutinib and acalabrutinib is not necessarily of them working better but to have less of these side effects that I just mentioned.

Lisa Hatfield:

Great, thank you for that. So this patient is telling us that he’s trying to plan life while living with cancer. It’s a challenge. It’s hard to know where to start. Can some patients go off of ibrutinib? I don’t say…ibrutinib after five years and enter a watch-and-wait kind of program. And will they be monitored during that time too, if they ever do go off of the medication?

Dr. Danielle Brander:

Yeah. So again, more excellent, excellent questions. So of those main categories of treatment, the BTK inhibitors are given continuously, meaning, at least so far, the standard way we recommend of those treatments is that they’re taken every day, either once or twice a day, depending on which BTK inhibitor, and they’re taken every day. Unless patients run into progression, meaning the CLL learns to grow through its resistance or patients run into side effects that despite maybe team’s recommendation of changing the dose or holding the medications, that it’s just the medication is just not tolerated.

In those cases, there are cases where we do recommend stopping the treatment because of side effects. And the key there is that patients if depending how long they’ve been on treatment or how their CLL is responding, might not need to go on to the next treatment right away.

So to answer this patient’s question, if they were to run into a side effect that wasn’t manageable, there are patients where we say, stop treatment and let’s just watch things, see if you need treatment, if your CLL has no other reason to jump into the next therapy. And there have been encouraging things that we’re learning and that I think are hopeful to this patient’s question, which is maybe in the future there are patients where we proactively can tell them to stop after a certain time because of what we’ve learned for patients so far. But at the current moment in time, we don’t tell patients to stop at a certain amount of time.

But there are trials that are looking at that after a certain number of years. And there are also trials that have followed patients who have stopped therapy and some of those patients, as I mentioned, who are told to stop treatment due to other side effects or other reasons, may go a long time, a couple of years before they need to start therapy.

Lisa Hatfield:

Okay, great. Thank you. I’m going to add one little question there too, if you don’t mind. So we’ve talked about trials a little bit, and I know that patients can go to clinicaltrials.gov, but what if a patient lives in an area that doesn’t have a major academic center or maybe trials aren’t being done very much in their area? Do you have a recommendation for patients? Should they just ask their doctor about trials if say, for example, they want to go on one of these trials? What recommendations do you have for those patients?

Dr. Danielle Brander:

Yes, absolutely. Starting with your healthcare team is very helpful to navigate to the right site. You mentioned the SWOG trial, which is online at a lot of the community and academic sites. So I would say also don’t or I encourage patients that just if they’re at a smaller site, it doesn’t mean there aren’t trials available. And then without going into all the individual, I guess societies and advocacy networks I really think that that’s been a tremendous benefit for patients is that there are societies through, you know, having leukemia or lymphoma, for example, that list or want to help patients connect them to what available trials there are.

Because while we think of trials as maybe the treatment, the reality is that a lot of trials are looking at other things too, patient’s physical function, patient’s other aspects of life besides the drug itself. So yes, I think that’s a great question for patients to be thinking about.

Lisa Hatfield:

Great, thank you. And you’re right, talking about access to trials is a whole other issue that will probably take up an entire program. But there are the advocacy networks out there, even Patient Empowerment Network. We can maybe help with that a little bit too. So we have another patient who is concerned about chances of relapse and is asking if there are any lifestyle changes through diet and supplements or anything that you can speak to that may enhance their response or their duration response to the treatment?

Dr. Danielle Brander:

Yeah. So a very very great question to bring about. And this is the one area, understandably where many of us feel frustrated because we can’t tell patients specifically that this trial has been done and says this specific diet is helpful or this specific lifestyle change is helpful to make the treatment work for longer. I think some of that is because some of the general advice we give meaning maintaining daily activity or a well-balanced diet sound non-specific or simple, but I think do help in patients staying in an overall general health wellness so that they can benefit from the treatment and potentially have less side effects from the therapy.

But getting back to the question we just talked about, I think certainly trials or studies really need to be continuing to look at this, because I think there likely are things that we can be more specific to patients about. There are studies looking at physical fitness and exercise regimens not necessarily specific to CLL, although there are studies being done in that space, but to other cancers showing that physical activity and exercise can help even for patients not on treatment maintain control of their cancer. So general daily activity and exercise are important in studies that look at how do you tailor that to an individual I think are important too?

Lisa Hatfield:

All right. So probably time for this last question from a patient. “As a CLL expert, how do you help empower your patients so they can get the most out of their CLL treatment and survivorship? How do you work with them as a team to make sure, I guess they’re having the best outcome they can?”

Dr. Danielle Brander:

Absolutely. So it starts at the start. I guess so for conversations, meaning for those that don’t need treatment right away building the relationship, understanding how I can help patients and their caregivers help, for example, they like to learn how much they want to know, what resources can I connect them with. And then I think it’s important for them to have other team members that they can go to and talk to and hear it from, because sometimes the same information we can just share in different ways or approach differently. The nurse on our team or our pharmacist or I work with a wonderful group of nurse practitioners and physician assistants as well. And so from the beginning, I want patients to feel free to ask the questions that come to mind.

It’s amazing, of course, during the course of the visit when you’re going over your labs and that, that sometimes it’s easy to forget the questions you came in with. So, of course, anytime you can write them down before coming in, write them down and then maybe prioritize because all of us…I think it’s hard to remember everything. So prioritizing the questions we want to make sure we get to and go over as well as know that these same questions are going to mean different things to you the longer you’re living with your CLL. And so it’s okay to ask the same questions. Again, there’s never a question that any of us mind going over several times. And then just know how the team can help you. You know, are you coming? How much information do you want?

How much input do you want us to put? And what is your importance and priority? At the end of the day, I want all patients to know no one knows what it is, like living with it. No one knows what’s most important as much as you and your family or your caregiver team does. And I learn just as much from patients and the way they share their experiences. There’s a lot we can look at a group of patients with CLL and say how different each patient’s experiences, who needs treatment or not, who has side effects or not. But no one’s going to know as much as as you do living with it. And it’s our hope to help you wherever you are in your journey or whatever ways that we can help you.

Lisa Hatfield:

Well, and I appreciate your comment that we can ask the same questions over and over if we need to. I know my oncologist when I first met with him, I felt guilty taking in more than two questions, but right before he moved, I took in a long, I rolled up a piece of paper, a long scroll, and I said, I have some questions for you, but I knew they were all repeat questions. But it does give us a little bit of peace of mind just hearing it again from somebody, especially in those initial phases of treatment, just hearing it, even if you have to hear it again and again. So thank you for mentioning that. It makes us feel a little more confident in taking those concerns to our providers, even if they’re repeated concerns.

Lisa Hatfield:

Dr. Brander, thank you so much for being part of this Patient Empowerment Network START HERE Program. It’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you very much for joining us.

Dr. Danielle Brander:

Thank you for having me.

Lisa Hatfield:

I’m Lisa Hatfield, thank you for joining this Patient Empowerment Network program.

Let’s Talk About NETs

November 10, 2023/in NET Blog ND, NET Blog T, NET Blog TC, NET Blog WN, NET Blog WPS, NET Newly Diagnosed, NET Testing, NET Treatment & Clinical Trials, NET What's Next, NET Whole Patient Support, Neuroendocrine Tumors, Patient Stories, PEN Blog /by Nicole Normandin Rueda, LMSW

Neuroendocrine (NET) cancer is a challenging diagnosis for patients, care partners, and medical providers alike. On NET Cancer Day, our Director of Marketing and External Affairs, Nicole Normandin Rueda, shares her family’s NET story. We are so grateful to Nicole for her candid account of her family’s experience, and for the passion with which she serves the cancer community. For information about neuroendocrine cancer organizations, please see below.

Nicole’s Story

Throughout my life, I have seen firsthand – both personally and professionally – what true inner strength is. I walked alongside my dad through his battle with pancreatic neuroendocrine tumors and held his hand as he took his last breath. I have also stood alongside patients with rare vascular malformations as they hear news of a poor prognosis or been seated with the parents of a 5-year-old patient who was so full of life, that no one could even begin to comprehend the significance of a diagnosis like DIPG with a 0% chance of survival. I guess it’s safe to say that I have seen my fair share of illness and adversity; however, in each of these scenarios, I have also been fortunate enough to see some incredible moments of hope and encouragement. Today, November 10, 2023, World NET Cancer Day, I am here to share a little bit of my experience, and what I have learned along the way to remind all of us that no one is in this alone.

“We cannot change the cards we are dealt, just how we play the hand” – Dr. Randy Pausch

As many who have any experience with NET cancer know, it is often the delay in receiving a proper diagnosis that is one of the initial challenges. This was no different for my dad, taking over a year from the time he first reported symptoms to the time of his official diagnosis. In early September 2005, my dad saw a gastroenterologist in Laredo, TX after he was unable to keep water down for a week. The doctor did an endoscopy and saw what he described as “scar tissue lesions” on my dad’s stomach and decided to prescribe Nexium to lower his astronomically high gastrin levels. Fast forward to January 2006, the doctor recommended that my dad stop the Nexium to ensure the gastrin levels lowered. Within three weeks of stopping Nexium, my dad was throwing up again. Finally, after more than three months of scans, and the requirement that my dad carry medical documentation explaining his “atomic state” from all the nuclear testing, it was determined that my dad had Zollinger-Ellison Syndrome, which we were told could cause tumors. This realization created the momentum to get my dad referred to MD Anderson for treatment. He was informed he met protocol, and we made the 6-hour drive to Houston, TX for the litany of tests required before MD Anderson would provide clarity on diagnosis and treatment.

At the time, we were looking for all the answers, and MD Anderson was able to confirm that my dad had Stage IV Neuroendocrine gastrinoma tumors with the primary site in his pancreas and metastases in the liver and lymph nodes. In hindsight, it is astonishing how little our family knew when it came to cancer treatment, language/jargon, protocols, etc. My paternal grandfather had just passed away from mouth cancer that metastasized to his brain, so it was not that we were naïve, but we just had no idea what aggressive treatment for Stage IV cancer looked like. My dad was 52 years old at the time, and he was my hero – a symbol of perseverance and strength. He was the Vice President of Operations at a manufacturing plant, he walked 18 holes of golf in 108-degree weather because he enjoyed the exercise – he thought he was invincible. He was also very stubborn – so much so that 20 years earlier, he was insistent on teaching himself Spanish and did so in a matter of months so that he did not have to rely on paid translators for his job. Initially, we all felt overwhelmed – we got the diagnosis, but we still wanted answers. There is a reason that I strongly discourage families from consulting Dr. Google –I can remember googling neuroendocrine carcinoma originating in the pancreas and only seeing information on Stage IV Pancreatic Adenocarcinoma, which was discouraging, to say the least.

That feeling – you know the one, like you have just been sucker punched in the gut – is very familiar when I reminisce on this time in my life. Quite literally, I stopped breathing for a second, it was a moment of panic and fear, a future flashing before me without my dad in it. It happens to the best of us – the news of a cancer diagnosis is life-altering in so many ways for each person in the family. And so often, the person delivering these messages can be a little numb to the impact their words are having, these oncologists see new diagnoses all day, every day. At the time, there was such limited information available on NETs that it got to be confusing and quite frankly, disheartening. My mom tells the story of an oncologist trying to help us differentiate his diagnosis by explaining that my dad had the ‘best kind of the worst kind of cancer’. Infuriating, and not helpful. For all intents and purposes, at the time, he had pancreatic cancer. There were quite literally no resources that we could find for his NET and the pancreatic cancer resources we did find were limited at best.

Instead, what got us through the first 2 years was hope. Despite the rollercoaster of emotions that a Stage IV cancer diagnosis is, my dad’s mindset was to focus on finding the strength to overcome the odds and keep a positive outlook. It was the attitude with which my dad, and so many others, chose to have throughout the life-changing cancer diagnosis that gave everyone in our circle a sense of strength. My dad went from feeling invincible to wanting to cherish every moment he could, he knew that cancer was now a chapter of his story, but it was not going to write his book. Don’t get me wrong, he had days where he was mad at the world, but he also had days that he was grateful for the chance to fight another day alongside his favorite people.

“So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. “ – Steve Jobs

As so many impacted by cancer know, the struggle to keep the faith and positivity is the difficult part. The fact that one test result can disqualify you from a potentially life-saving treatment is distressing. It was difficult to remain positive when there were medical professionals giving us information that was borderline incomprehensible. We asked his medical team if it was okay to record all the updates they were giving because while we knew the words coming out of their mouths were important, we had no idea what most of them meant. This was a game changer, and something I encourage every single patient and family member to do if their medical team allows it. If not, ask for everything in writing (either printed or via a portal). As PEN says, the best cancer care happens when you’re empowered to ask the right questions at the right time. The person who did this was my mom – she was the one making sure my dad took all his meds, ate enough protein, and asked all the questions she needed to ensure we walked out of the room feeling like we were part of the decision-making process. Having a strong care partner is invaluable – but finding a support network (if you don’t already have one) is equally as important.

That is the thing about cancer, it takes so much away from everyone it impacts. The ability to keep faith and trust in something (whatever that may be) is incredibly difficult. There are so many situations that are just unfair – from not meeting protocols for a new treatment option to being pushed to extend life that has no quality because you do meet certain protocols. It is overwhelming to think about the infinite possibilities. What can be helpful is to focus on the things you can control and trust yourself. Cancer cannot take away the relationships with those around you. Personally, I am grateful that a Stage IV NET diagnosis was not able to take the memories I made with my dad, the priceless gifts that I keep with me every single day. I have no regrets – I carry him (and others whom I have met along the way) with me in everything that I do. My advice to others when asked how I have been able to cope with the incredible amount of loss I have experienced in my life is to make sure you stop and appreciate the moments and record the memories. There are opportunities every day to spend some one-on-one time with those around you – especially those impacted by cancer. This journey is not one that anyone can or should get through alone. Whether it is finding a support group, finding a counselor, talking with friends, or spending time with your pets (that was one of my dad’s favorites), it is so important to seek opportunities to connect with others.

Over the next 5 years, my dad beat all the odds. He kept up with his quality of life for nearly all his remaining days – being able to attend my brother’s wedding, watching me graduate with 2 degrees, and spend LOTS of one-on-one time in the car with my mom going to/from Houston for treatments. It was not until early 2012 that we were told there were no additional treatment options, and we had to start thinking about palliative care. Up until that point, my dad had been doing well – he completed 10 rounds of 5FU chemotherapy, his lifetime limit of radiation, five surgeries, and a clinical trial. This is where my professional training as a social worker comes into play. Again, hindsight is 20/20, but at the time, since my dad looked so healthy externally, we never had in-depth conversations regarding his wishes when it came time for hospice and palliative care. My mom, thankfully, had the wherewithal to make sure my dad’s wishes were respected, along with advance directives, etc., but as a family, we did not explore palliative care options. I don’t think he was offered palliative care until, in my opinion, it was no longer a palliative care situation. The last weeks of his life were incredibly difficult for all of us. The decisions we made, as a family, during that time were the product of painful discussions with a 59-year-old man who was in unbearable pain. He did the best he could, and we were alongside him every step of the way. He was able to take his last breaths surrounded by those that loved him the most. I have dedicated my career to ensuring other families impacted by cancer have the psychosocial support they need.

Rare cancers, like NETs, have some incredible resources and support networks that can be transformational for people with cancer and their families. Don’t be afraid to ask for resources. Hospice and palliative care teams can also be incredibly helpful, and at times will overlap. Palliative care is meant to enhance a person’s current treatment by focusing on the quality of life for them and their family. Palliative care teams are multidisciplinary and comprised of doctors and specialists, as well as social workers, chaplains, and nutritionists who will provide as much support as needed to improve quality of life and is a fantastic opportunity for patients to be active participants in their medical treatment.

If you got this far into this blog post, I would like to make sure you walk away with these words – Surround yourself with people who you love to help you be proactive in making decisions that impact your journey. It is critical that patients and their families are empowered to understand their situations, feel confident to ask the right questions and be an active part of the decisions that need to be made. It has been 10 years without my dad, and I would give just about anything to have him by my side today, instead, I am able to carry my dad’s legacy with me, still doing my best to make him proud. Hug your loved ones extra tight today, on World NET Cancer Day and try to remember that you are not alone. I leave you with this piece of advice from my dad, Mike Normandin, that I often turn to on especially tough days, “Stay positive. Life is about choices. Make choices that are going to make you happy…Love is the most important thing in life…”

P.S. If you want to hear him give this advice, feel free to check out this advocacy video my parents and I made over 12 years ago or this clip from my hometown’s local evening news (apologies in advance for the poor-quality audio).

Neuroendocrine Cancer Organizations

Carcinoid Cancer Foundation carcinoid.org
The Healing Net Foundation thehealingnet.org
International Neuroendocrine Cancer Alliance (INCA) incalliance.org
Learn Advocate Connect: A Neuroendocrine Tumor Society (LACNETS) lacnets.org
North American Neuroendocrine Tumor Society (NANETS) nanets.net/resources/patient-resources
Neuroendocrine Cancer Awareness Network (NCAN) netcancerawareness.org/
Neuroendocrine Tumor Research Foundation (NETRF) NETRF.org
Northern California CarciNET Community norcalcarcinet.org
The Pheo Para Alliance pheopara.org

Nicole Normandin Rueda, LMSW

Marketing and External Affairs Director

Nicole Normandin, LMSW has worked with vulnerable populations in several capacities for over ten years. Most recently, Nicole served as the Executive Director for Stuff the Sleigh, a nonprofit organization that supports the psychosocial and emotional needs of pediatric cancer and hematology patients and families. Prior to this, she was a Clinical Social Worker at Texas Children’s Cancer and Hematology Centers and as a Patient Resource Specialist with the American Cancer Society.

Nicole has a Bachelor of Arts in Psychology and a Master of Science in Social Work, both from the University of Texas at Austin. In May 2017, she completed the Rice University Glasscock School of Continuing Studies Leadership Institute for Nonprofit Executives Certificate program. She has extensive work volunteering and serving others, including time as the President of Student Hope, a pilot program through the Pancreatic Cancer Action Network.

What motivates Nicole is the ability to give cancer patients and caregivers a sense of hope despite the devastating circumstances around them. When Nicole’s father lost his 7-year battle to pancreatic neuroendocrine cancer, her personal and professional passion for positively impacting the lives of cancer patients was reinforced.

Nicole grew up in South Texas but has spent the most of the last decade between Houston, TX and Austin, TX, where she currently lives with her husband Armando, who is an engineer and Development Manager, and their two dogs – a French Bulldog named Moose and a boxer named Hooch Merengue.

Patient Empowerment Network joins CancerX Initiative

November 1, 2023/in PEN Blog /by Kara Rayburn

FOR IMMEDIATE RELEASE

November 1, 2023

Patient Empowerment Network joins CancerX Initiative

BOTHELL, WA. – Patient Empowerment Network (PEN) announced today that they have joined the CancerX Initiative, a public-private partnership announced by The White House as a national accelerator to boost innovation in the fight against cancer as part of the Cancer Moonshot campaign. CancerX’s goal is to reduce cancer deaths by 50 percent by 2047.

“Key to achieving the goals of the Cancer Moonshot is having each and every cancer patient able to access the information they need to engage in shared decision-making,” said Tracy Rode, Executive Director, Patient Empowerment Network. “We believe Patient Empowerment Network (PEN) is an important addition to CancerX because of our focus on health equity and online literacy. We are proud to offer our expertise and energy to CancerX.”

CancerX is convened and administered by Moffitt Cancer Center and the Digital Medicine Society (DiMe), alongside the Office for the National Coordinator for Health Information Technology and Office of the Assistant Secretary for Health.

“Multi-stakeholder collaboration is critical to harness the potential of digital innovation in the fight against cancer, and we’re honored to partner with PEN to achieve the ambitious goals of CancerX,” said Smit Patel, Associate Program Director at Digital Medicine Society (DiMe). “Through this impressive collaboration, we will establish best practices, build capacity, and demonstrate the impact of innovation on the life of every person on a cancer journey.”

PEN’s mission is to offer trusted information to empower anyone impacted by cancer, toward fulfilling our vision of every cancer patient having the knowledge they need to navigate the complexities of cancer.

# # #

About Patient Empowerment Network

Patient Empowerment Network (PEN) is a virtually-based 501(c)(3) non-profit organization trusted by millions of cancer patients and care partners worldwide to achieve improved health literacy, equity, and treatment outcomes at every step of their journey. www.powerfulpatients.org.

Media Contact:   

Emily Reed

Early Light Public Relations

Emily@earlylightpr.com

PODCAST: CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

November 1, 2023/in Empowered! Podcast, PEN Blog /by Kara Rayburn

Understanding CAR T-cell therapy and recovery is vital for care partners who are caring for a loved one undergoing this treatment approach. Dr. Shambavi Richard explains the CAR T-cell therapy process, potential complications, ongoing research in the field, and discusses how care partners can provide support at each stage of the process.

Dr. Shambavi Richard is the Co-Lead Physician for the Multiple Myeloma CAR-T Program at Mount Sinai Tisch Cancer Center. Learn more about Dr. Shambavi Richard.

Download Resource Guide

Transcript:

Katherine:

Today we’re going to learn about CAR T-cell therapy to help care partners understand how it works, what happens during recovery, and why care partners are so essential throughout the process. 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 program survey. This will allow you to provide feedback about your experience today. And it will help us plan future webinars. 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. Shambavi Richard. Dr. Richard, welcome. Will you please introduce yourself?

Dr. Richard:

Hi. I’m Shambavi Richard. I am in the myeloma faculty at Mount Sinai. I’m Associate Professor of Medicine. And I codirect the CAR T and cellular therapies for myeloma at my institution.

Katherine:

Well, thank you so much for joining us today. We really appreciate you taking the time.

Dr. Richard:

Thanks for having me.

Katherine:

Let’s begin with the basics of CAR T-cell therapy. What is it? And maybe, actually, we could start with what CAR is short for.

Dr. Richard:

So, CAR stands for chimeric antigen receptors, so CAR T cell is a chimeric antigen receptor T-cell therapy. What that means is T cells, which is one of the cells for immune system are actually come from the patient. They’re expanded and activated in a manufacturing facility. And there they undergo genetic modification to form the CAR T cells. And what’s special about the CAR T cells is that they have the capacity to recognize myeloma cells and are efficient killers of the myeloma cells.

Katherine:

Who might this approach be right for? What determines eligibility?

Dr. Richard:

So, interestingly enough, today as we speak, CAR T cells may be eligible for many, many different kinds of – in the phases, many different phases of the myeloma journey. When they were initially tested, as most new therapies are, they were tested on patients who had very advanced myeloma, really were not candidates or did not have great options for any other kinds of therapy. And when they got tested in these groups of patients, they really had stellar results that far outstripped anything else that we had as options for patients in those advanced stages of myeloma. So, the approval for CAR T cells as they stand today for myeloma is for advance myeloma with patients who have had four or more lines of therapy and have had exposure to pretty much the major three classes of therapies for myeloma which includes proteasome inhibitors, imides, and anti-CD38 antibody therapy.

But having said that, now CAR T cells are being moved into earlier lines of therapy are now being tested in these in various clinical trials. And even for newly diagnosed myeloma patients to see if they are as good as autologous transplants. Are they better than autologous transplants? And so on and so forth. So, really that’s what I mean by saying for now CAR T cells are appropriate for anyone if they are candidates for clinical trials. But in terms of approved indications for CAR T therapy, those are for advanced myeloma patients who have had at least four lines of therapy.

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy?

Dr. Richard:

So, there are several possible side effects with CAR T therapy.

It’s a little different from an autologous transplants. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue. So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy. Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital?

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy. Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects.

Katherine:

Dr. Richard, how is CAR T-cell therapy impacting the landscape of myeloma care?

Dr. Richard:

So, as I’d hinted or alluded to previously, prior to CAR T cells appearing on the horizon, we had very limited options for patients who had had the first several lines of therapy.

So, once they had been exposed to two proteasome inhibitors, two iMiDs, and then anti-CD38 antibody which is the three major class of myeloma drugs, they are then called triple class exposed or penta-exposed depending on how many of these drugs they’ve been exposed to.

We had a study called the MAMMOTH study back – this was published back in 2019 prior to the era of CAR T cells and other T-cell directed therapies. And at the time they had looked at patients who were triple class exposed, and who had been exposed to daratumumab were refractory to daratumumab as their last line of therapy. And what we saw was with their next line of therapy or whatever else was available at the time for patients such as these, their expected response rate was only about 30 percent or so, number one.

Two, their outlook was very poor with a median progression-free survival which means that the amount of time that patients could go without the disease coming back, and that median progression-free survival was less than six months. And their expected even median overall survival was well under a year. So, that was what the landscape looked like when CAR T cells came onto the scene. For instance, the CART2 trials, which is one of the approved products which is cilta-cel which is what we have now, we actually saw for this same group of patients, the response rates was now 98 percent.

Deep responses were 83 percent. And we now have the final readout of their median progression-free survival which is almost three years. So, you can see a significant difference.

Under six months, media progression-free survival to three years. And over 50 percent of the patients were living over three years. So, that’s kind of where we are at. I mean so it was no small improvement. This considerably kind of almost reset the bar and has given a new lease of hope and life to patients who had advance myeloma. And one of the things we say in myeloma is although we don’t, as yet, say that myeloma’s curable, we are working towards that. But we are also giving options for other treatments, other research to be effective in patients just by keeping them around longer.

Katherine:

Have there been any recent research developments involving CAR T-cell therapy that patients should know about?

Dr. Richard:

Absolutely. So, much as I have highlighted all the hope and the optimism and the good things about this, the fact is we’re still not curing people with these therapies.

So, we called this a plateau in the survival curve which means that if we achieve that plateau, that means the disease is probably not coming back, and we have essentially the definition of cured. But we’re not seeing that. We’re still seeing a downslope in the survival curves of myeloma which means that patients are still relapsing in spite of these excellent therapies. So, there’s a lot of research going on into why are patients still relapsing? Is it because they’re losing the antigen which the CAR T cells are recognizing? Is it because the CAR T cells are no longer effective even though the antigen is still present? Is it because there’s a considerable lag time between the patients being freezed or collected, the cells being collected for the genetic modification in the lab to the time when the patients can actually receive these cells? And that can be anywhere between four to eight weeks.

So, during this time period, patients with advanced myeloma may not remain static with their disease. The disease is progressing. They’re getting worse. They may not be candidates for these kinds of therapies. So, one of the areas of research is how can we speed up this process, this manufacture process? How can we make it much more available? Because they’re limited by the manufacturing facilities, their abilities to have these viral vectors, to be able to transduce these cells and genetically modify. So, can we take them off of those kinds of things? Can we automate this? Can we improve these manufacturing platforms? So, a lot of different things are being tested. And then as I’d also mentioned earlier, right now they’re approved for advance myeloma, but what if we can bring them up earlier? Are patients actually going to get cured by that? Are they going to have a much better progression-free survival with that versus waiting until they’re very advanced? So, these are all many, many things that are being looked at.

In addition, a lot of these CAR T products, these approved products, all them are all recognizing one antigen on the myeloma cell. Now there are products are being looked at that are dual target antigen recognition ability. So, that’s another thing. So, maybe if the CAR T cells are missing one of the antigens, and they’re not able to use that to kill the myeloma cell, maybe the other antigen can pick up the slack. So, these are various things that are being looked at.

Katherine:

Yeah. Well, now that we understand a bit more about what it is, let’s walk through the process.

When a patient goes through CAR T, what happens first?

Dr. Richard:

So, the first step is being referred to a CAR T physician. Right now, CAR T therapies can only be done in certain tertiary care institutions, not even all tertiary care institutions.

They have to have the ability to manage and process cellular therapies. So, that’s limited right there. So, patients have to be referred to centers, so actually do these CAR T kind of therapies. Once they meet with the myeloma physician who deals with CAR Ts as well, then the way it works in our institution is then we assess them for which is the best kind of CAR T product the patient may be eligible for. Are they eligible for clinical trials? Do they fit the profile for clinical trial? Are the patients willing for clinical trails? If not, are they candidates for one of the commercially approved products? As I said, there is specific criteria. Patients have to have had at least four lines of therapy to be able to receive a commercially approved CAR T product.

If that is the case, and once the process has been explained to the patient, they have to go through all the financials, the insurance approval. These are very expensive propositions. So, the insurance goes through all of the criteria to make sure that they will approve the product. Once the insurance approves, they also going through the institutional approval process to make sure that these are again being done for the right patient, and that they go through the institutional approval. There are several patient specific characteristics.

For instance, we want a patient who has the support structure to be able to support a therapy like this. They have to have a good performance status. They have to be relatively able to be able to handle these kinds of therapies. I went through all of those side effects that are possible. We look at their cardiac status. We look at the neurological status.

We look at the pace at which their disease is escalating because these are again advanced patients. So, if somebody is relapsing very quickly, they may not have the time to wait to get to a slot for the apheresis, and then to wait again for the manufacturing to happen. So, we look at all of that. We look at their kidney function. And then finally in terms of their psychosocial, do they have their caretakers, the support system? Where do they live? Are they able to access our center? Are they from out of state? If so, how are we going to manage during those initial months until they’re able, stable enough to be discharged back to their referring physician?

So, we look at several things, so we have multiple teams of people, social work, pharmacy who looks at all of these different – and explains the pharmaceutical aspects of all of this, our finance team, our coordinators who put all of this together. For the apheresis, we are involved with a apheresis team.

And then the cell therapy lab that processes the cells, the vascular team to put in the lines required for the apheresis. So, there are several, several groups. And then if we need to get a consultation from our expert cardiologist or neurooncologist, we need to have those teams involved as well.

Katherine:

How long does it take to know whether the treatment has been successful?

Dr. Richard:

So, we get a sense depending on what their blood markers look like, we can get a sense within the first month if the patient is actually responding to the treatment or not. I generally wait for the first three months to do a actual formal assessment with their bone marrow and their PET scans and everything else because right around then they’ve gone through the initial acute post CAR T period. And so, at the time of the bone marrow we assess what it looks like, we send for a test called MRD which is minimal residual disease to see where they’re at with that.

And PET scans to look at any areas of skeletal lesions or even extramedullary disease that they may have. So, I would say within the first month we get a sense, but by three months we do that first formal assessment.

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process?

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that.

So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.

Katherine:

What questions should care partners be asking if they begin the process?

Dr. Richard:

I think a good understanding of all of those.

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing. One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing.

So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient?

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role?

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.

Katherine:

We have a few questions that are community sent in prior to the program. I’d like to start with Melissa’s question. “Do you have any advice for handling the emotional highs and lows as well as personality changes within the relationship?”

Dr. Richard:

That can be a challenging one. And as medical doctors, we tend to not be the best people to usually – and so what I really draw on is social work and our coordinator’s support for that kind of thing. At our institution we have a affiliate of care of supportive care oncology team who help with a lot of the symptom management or anything like that.

And if it’s something that actually needs more than just counseling, if they actually need medications, then we have our psychiatric oncology groups who also help with a lot of those. So, I think being prepared for any of these is important, but I think a lot can be handled just by having a good adequate support of care that starts right at the beginning of the process before things start getting overwhelming.

Katherine:

Yeah. Here’s another question we received: What kind of nutrition does a patient need during this process? And how can the care giver ensure adequate nutritional support?

Dr. Richard:

So, among our various teams, we have actually a nutritionist who actually meets with the patient about the time of their discharge from the hospital. And they give them a lot of guidelines about how to handle various dietary things.

In general, going into CAR T, a well-balanced healthy diet is always a good thing. Maintain your diet well as much as possible. Following the CAR T process, we do follow guidelines for what we call a neutropenic diet wherein well-cooked meats are preferable to anything undercooked because that’s where you can have a lot of bacteria. We advise against raw or undercooked meats of all kinds. Pasteurized foods obviously much better than don’t go for the unpasteurized. Don’t go for the soft cheeses which tends to be unpasteurized or typical wherein you can have – and also in terms of nuts, prefer the roasted nuts rather than the raw nuts and things like that. So, any fruits and vegetables, we advise that they should be well washed and cleaned.

We advise against the thin-skinned ones that are harder to clean. We prefer rather the thick-skinned fruits where you can wash it well and then peel it. So, those have less tendency to spread diseases and bacteria and things like that. So, those are some of the things that we advise. And we do give them a dietary sheet wherein they have the dos and don’ts, but because it’s easy to forget some of these. We prefer don’t go to delis. Don’t get deli meat. So, if you like those kinds of things, get the packaged form where you can control the quality of things like that.

Katherine:

What about something like raw fish? Is that recommended or not?

Dr. Richard:

We prefer it not. Raw fish again like smoked fish and things like that, we prefer to avoid those things at least for the first few months after CAR T. We generally make these somewhat straight for the first three months.

Post CAR T patients are immunosuppressed for a long time. There’s no great science at the three-month mark because I think at three months plus one day you’re probably still at some risk. And everybody’s immune recovery is different. So, patients who are immunosuppressed for a long time, I say, “Just try to stick to these unless it’s something that you really can’t do without.” But it’s much better to try to maintain these guidelines for as long as possible.

Katherine:

Another audience member wants to know, “What is the difference between CAR T and bispecific antibody treatment?”

Dr. Richard:

Oh, good one. So, as I mentioned, with the CAR Ts, the T cells that are taken from the patient is actually genetically modified. So, these are kind of souped-up T cells if you want to put it that way because one, they efficiently recognize that myeloma cells, and two, they are efficient killers of the myeloma cells which are the two main jobs of your T cells.

With a bispecific antibody, this is an off the shelf thing, so this is not manufactured specifically for the patient. And then it’s a drug. And the drug has two receptors. One recognizes the myeloma cell, and the other recognizes the patient’s own T cells. So, these are unmodified T cells that just floating around. And they bring the patient’s T cells to the myeloma cell to kill it. So, that’s the difference. It’s an off the shelf product versus a manufactured. The T cells are your own. They are not manufactured in any way, but otherwise they’re kind of similar in that they’re both T-cell directed killing mechanisms, and they recognize the myeloma cell.

Katherine:

Okay. Thank you for that. Thoughtful answers, Dr. Richard. We appreicate it. Before we end the program, I’d like to get your final thoughts. What message would you like to leave the audience with?

Dr. Richard:

I want to leave a message of hope. I want to leave a message that there is so much research going on.

And we couldn’t do any of these without the involvement of patients and their caregivers. And that’s how we have moved the field forward to this extent. And that’s how we continue to move the field forward. There’s a lot of reason to hope. And the Holy Grail, of course, is cure. And that’s what the entire myeloma community is working toward getting to that goal one day. So, I want to thank the patients and the caregivers for helping to move this, so helping themselves and helping others.

Katherine:

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

Dr. Richard:

Thank you for having me.

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 programs in the future. To access tools to help you become a proactive care partner, visit powerfulpatients.org.

I’m Katherine Banwell. Thanks for being with us.

Thoughts on Survivorship

October 25, 2023/in Patient Stories, PEN Blog /by Rick Czaplewski

Wellbeing

When the hotel alarm sounded on July 31, 2023, I woke up, put both feet on the floor, brushed my teeth, laced a pair of work boots, and caught an Uber to a factory in Potrero Hill of San Francisco. On this work trip, with my team, we operated water treatment equipment that morning and then had lunch at a taco truck. After more work and a team dinner at a Japanese restaurant, another Uber whisked me back to the hotel in time to catch the impressive sunset over the Golden Gate Bridge.

As the sun reflected off San Francisco Bay I reflected on the past 27 years. You see, July 31 marks my cancerversary, in other words the date that the doctor finally told me, “You no longer have cancer,” and that date marked 27 years since that discussion when I was a college student in the 90’s.

A handful of my friends know the date and sent well wishes, and on that date, old memories of my experience with Hodgkin’s Disease and prior cancerversaries have their way of returning to top of mind. I remember wanting cancer out of my body so badly and the desire to live and healthy and happy life thereafter; today we call this wellbeing.

I thought about those first steps after my doctor’s good news. Walking out of his office as a newly minted survivor felt like heading out on a journey without a map. He had prescribed a regimen of scans, bloodwork, and follow ups which would gradually lighten as time progressed.

I dutifully followed, attended, and completed these appointments and every time sweated the results of each of them. The new normal felt a lot more uncertain than it did before cancer. To live a healthy life as a survivor means taking on the hard stuff like waiting on results, but it also provides a level of comfort knowing the course of tests monitored my body very closely. Over time, the intervals between these exams lengthened from three months to six months. Then annually. Then never again after year 10.

Like many survivors, cancer influenced my health decisions, especially diet and exercise, to live a life with wellbeing. Healthy habits have to underpin decisions. For me this meant getting into running and swimming. I remember running about six months after finishing treatments and could not make it 50 yards.

Sticking with good habits, stacking wins, will help healing and mental wellbeing. Whether you aim for mountain peaks or marathon finish lines, or you start a daily walking habit, movement and mobility will help the body bounce back; this worked for me. I kept getting out there day-after-day, doing those 50-yard runs which eventually stretched further. Let your body guide you; listen; just move.

Over the years, having met so many other survivors, handling cold and flu season after cancer has some challenges. I remember the Fall after my treatments concluded, I came down with the sniffles and immediately thought cancer had returned. Taking it a step further, I twisted my ankle on a jog about four months after finishing treatments and thought that my ankle now had cancer. It didn’t. Relearning and listening to your body take time and those reactions are something I think all survivors experience.

One health dilemma I faced early on after the end of treatment happened in college. The social scene at my (and many) colleges involved parties and bars. I enjoyed going to these, not so much for the alcohol but for the camaraderie. At the time (the 90’s), you could smoke in bars. After standing in the smoke- filled college bars a few times and still worried about a relapse, I decided to change my approach. Instead of tolerating the environment, I would arrange meetups with friends earlier and would leave if it got smoky. Though I may have missed out on some late-night revelry, it meant prioritizing health first. Making this and other tradeoffs like it over the years have led to a healthier overall life without the worry of deprioritizing my health.

As the sun went down over the San Francisco Bay and the memories receded for another year, the second lifetime of chances left me with a warm appreciation of life and a gratitude for a second opportunity knowing that when the alarm sounds on the next ordinary day, August 1, I have the chance to keep going.

Good health to you.

Rick Czaplewski

Cancer Survivor: 2x, 27-Years, Hodgkin’s Lymphoma Author: Better Dirty Than Done

Rick was first diagnosed with Hodgkin’s Disease as a freshman in college at age 19. After undergoing radiation treatments, it relapsed only 18 months later. Determined to graduate, Rick dropped out of college, underwent chemotherapy, and returned to earn his degree.

In the midst of depression dealing with survivorship, Rick turned to athletic endurance events for recovery. Rick has gone on to climb mountains, swim oceans, and run marathons. These stories are part of his memoir, Better Dirty Than Done. Personally, Rick is a proud father to 19-year old son, Lance. Professionally, he has worked as a CPA, project manager, and director across the financial, high tech, and water treatment industries. Recreationally, you can find him riding his bike.

PODCAST: Follicular Lymphoma Patient Expert Q&A: Start Here

October 25, 2023/in Empowered! Podcast, FL Newly Diagnosed, FL Podcast ND, FL Podcast TC, FL Treatment and Clinical Trials, Follicular Lymphoma, PEN Blog /by Kara Rayburn

The START HERE program bridges lymphoma expert and patient voice, whether you are newly diagnosed, in active treatment or in watch and wait. In this webinar, Dr. Sameh Gaballa provides an overview of the latest in follicular lymphoma, emerging therapies, clinical trials and options for follicular lymphoma progression and recurrence.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

Download Resource Guide | Descargar guía de recursos

Transcript:

Lisa Hatfield:

Welcome to the START HERE Patient Empowerment Network Program. This program bridges the expert and patient voice enabling patients and care partners to feel comfortable asking questions of their healthcare team. Joining me today is Dr. Sameh Gaballa, an oncologist hematologist from Moffitt Cancer Center. Dr. Gaballa’s clinical interests are treating patients with lymphoid malignancies. His research focuses on developing novel targeted agents for treating patients with indolent lymphomas, such as follicular lymphoma, marginal zone lymphoma, and lymphoplasmacytic lymphomas. Thank you so much for joining us today, Dr. Gaballa.

Dr. Sameh Gaballa:

Thank you, Lisa. Happy to be here.

Lisa Hatfield:

Thank you. The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of follicular lymphoma treatment and survivorship.

Before we get started, please remember to download the program resource guide via the QR code. There’s great information there that will be useful during this program and after. So let’s get started. So, Dr. Gaballa, I’d like to talk about what’s on the follicular lymphoma treatment radar. There’s a lot going on in terms of emerging treatment options, clinical trial data, and other learnings for the follicular lymphoma community. But before we jump into how the armamentarium is expanding, can you provide an explanation of what follicular lymphoma is?

Dr. Sameh Gaballa:

Yeah, absolutely, thank you, Lisa. So, follicular lymphoma is a type of B-cell non-Hodgkin’s lymphoma. What does that mean? It’s basically, so in your body, there are cells that are part of the immune system; these are lymphocytes. These cells normally, their normal function, is to fight infection, they’re part of your immune system. They actually are involved also with fighting cancers, but sometimes they become malignant. But not all lymphomas are the same. Lymphomas are a huge family. So there’s Hodgkin’s lymphoma, there is non-Hodgkin’s lymphoma. Within non-Hodgkin’s lymphoma, there is a type called B-cell non-Hodgkin’s and there’s a T-cell non-Hodgkin’s lymphoma. And then within B-cell non-Hodgkin’s lymphoma, there are two big groups. So one group, they are these aggressive lymphomas that grow quickly, they can make you sick quickly, and these lymphomas we have to treat right away.

And then you have those slow-growing indolent lymphomas that are sometimes very commonly actually diagnosed by chance, or incidentally, that’s usually the most common way these are diagnosed. And the most common slow-growing indolent lymphoma is going to be follicular lymphoma. Now, where do you find these lymphomas? It’s a blood disease. So, again, we said that those cells are normally borne in the bone marrow, they are in the blood, they’re in the lymph nodes, they’re in the spleen. So usually you would find those malignant cells usually in the lymph nodes, but you could also find them sometimes in the spleen or in the blood or in the bone marrow as well. And the symptoms they cause will be dependent on where they are and how big the, those, the involvement is.

Lisa Hatfield:

Well, thank you for that detailed overview, Dr. Gaballa. We do have follicular lymphoma patients and care partners who are newly diagnosed, in active treatment, watching and waiting, and also living with their disease joining this program. No matter where you are on your journey, START HERE provides easy-to-understand, reliable, and digestible information to help you make informed decisions. Dr. Gaballa, we’re going to dive right into things with a high-level update. So, can you speak to the novel pathways and targets that are currently under investigation in follicular lymphoma? And what are the most important highlights to point out to patients and families?

Dr. Sameh Gaballa:

Yeah, absolutely. So you have to remember, number one, not all patients with follicular lymphoma have to be treated. A fair number of patients can be safely observed initially, because the…so when I was talking about the types of lymphoma, so the aggressive lymphomas, those ones are treatable, but curable, meaning you treat it, goes away, good chance that it goes away and does not come back. Whereas follicular lymphoma, those are slow-growing lymphomas. They may or may not cause problems. The treatment though, they’re very treatable. There are a lot of treatments available, but the thing is they’re not curable, meaning that they go into remission, they could stay in remission for years, but then eventually they would come back again. So you have to remember that because of that, large trials were done previously where patients who had no symptoms and not a lot of disease, they were randomized, half would get treated.

The other half were on a watch and wait. And the patients who, survival is exactly the same in both groups, there was not really any advantage to early treatment versus treatment as if there’s a reason in the future. And we typically have some indications where we decide, okay, well, it’s time to treat. And those basically have to do if the lymph nodes are big enough or they’re close to an important structure and we don’t want them to grow more and maybe press on an important structure, or if they’re causing some kind of symptom or they’re causing anemia or low platelets. I mean, there has to be one, because there has to be one reason for why you’re trying to treat that patient, because you’re basically trying to fix a problem.

So if there’s no problem initially, it doesn’t make sense to treat it. Now, there are lots of available treatments, it could be only immune therapy, something like rituximab (Rituxan) or obinutuzumab (Gazyva); these are antibody treatments. There are also combinations with chemotherapies, like bendamustine (Treanda), rituximab for if we have relatively bulky disease. There are options as well that do not involve chemotherapy.

So something like pills like lenalidomide (Revlimid) combined with rituximab, those are also options that can be used in follicular lymphoma. But over the last few years, there have been a lot of changes in follicular lymphoma and a lot of novel targets and a lot of novel treatments available. So, for example, a few years ago now, we’ve had CAR T-cell therapy approved. Right now, we have two products approved, axi-cel and tisagenlecleucel (Kymriah). There’s also data that was presented with liso-cel in follicular lymphoma. So hopefully we might see an approval for that as well. So that’s one class.

There’s also bispecific antibodies, and it’s very exciting times. We had the first bispecific antibody approved in the United States in December of 2022. That’s mosunetuzumab (Lunsumio). So what is a BiTE antibody? These basically are advanced types of immune therapies where you give the patient an antibody that has two ends to it, one end sticks to the cancer cell, the other end sticks to your immune cells. So it’s basically , it’s handholding your own immune cells or your own T cells to go and get attached to the cancer cell and kill it, not chemotherapy. It, of course, can have some immunological side effects like fevers or inflammation initially when it’s done, typically when in the first cycle or second cycle.

But something called cytokine release syndrome rarely can cause neurological toxicity. That’s also very transient usually, and very rare with bispecific antibodies. But those are two up and coming treatments. Right now, they’re approved in patients who’ve had relapsed/refractory disease, meaning they’ve had two or more lines of previous therapies, but they’re…we have them now in trials where we’re looking at those agents in earlier lines of therapy. There are other agents as well.

A few years ago we had tazemetostat (Tazverik) approved, which is a pill that targets an enzyme in the cells called EZH2 and they basically, this pill tries to ask the cancer cell to differentiate, rather than get stuck and not die. So they differentiate and then they eventually die, so that’s another class of medicine. And we’ve now seen some data with BTK inhibitors. There’s been data presented from the ROSEWOOD Study with zanubrutinib plus obinutuzumab (Brukinsa plus Gazyva); it’s not yet FDA-approved, but the data looks interesting and certainly needs to be looked at further.

Lisa Hatfield:

Well, thank you for that overview. It seems like as a blood cancer patient myself, it seems like a hopeful time for patients with the treatments that are kind of on the horizon or are in clinical trials right now. So thank you for that.

Dr. Sameh Gaballa:

Absolutely.

Lisa Hatfield:

So it’s that time now where we answer questions, some of which we’ve received from you, the patients watching this. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, that this program is not a substitute for medical care. Always consult with your medical team. So, Dr. Gaballa, let’s start here. How do you explain follicular lymphoma treatment options and prognosis to your newly diagnosed patients? And what does shared decision-making look like in your office?

Dr. Sameh Gaballa:

Oh, absolutely. So follicular lymphoma, you really have to explain to the patient what, how are we coming to the recommendation that we’re currently giving. So if we think this is, this patient is a good candidate for a watch-and-wait approach, for example, we really have to walk them through why that really is the best option and not why should we jump on treatments and vice versa, if we think this patient needs to be treated, how do we really…the patient really has to understand all the other treatment options and why this needs to be treated. Because a lot of patients initially, sometimes when you present them with a watch-and-wait approach, if they don’t know all the background, they might not feel very comfortable because they might think, “Well, I have this cancer in me, and we’re not doing anything about it, and that doesn’t really sound too…something I should be doing.”

But then when you explain to them, “Well, you see, you don’t have a lot of disease, those studies have already been done in the past where patients who were treated or not treated, the survival was the same, so there, you might get side effects from the treatment, but not necessarily have benefits. And in the future, should this need to be treated, we have a lot of things to do.” So, really, so this is kind of the shared decision portion where you just have to walk the patients through why that will be the best situation. There is data with single-agent rituximab, even in patients who are asymptomatic, and we have the UK data, and that’s an option.

And that is also offered to some of the patients, even if they’re not symptomatic and they don’t have a lot of disease, if that’s what really the patient wants, if they’re not really comfortable with a watch and wait. And there’s again some data to help justify that. Again, there’s no advantage in overall survival, but sometimes the patients would kind of feel more in control. They feel like, “Okay, I did something about it.” So that’s the shared approach.

In terms of your other question about prognosis, unfortunately that’s an area of an unmet need. I mean, we have some tools to help us differentiate follicular lymphoma patients from each other, which patient is high-risk, meaning those are the patients who might relapse quickly, or they might not respond well to treatments. Unfortunately, we don’t have great tools. We have something called a FLIPI score, which is, we use a number of parameters including clinical parameters like stage or age and some other parameters as well, and we have a scoring system. But it doesn’t 100 percent predict if this is going to be a high-risk follicular lymphoma or a low-risk.

Unfortunately, the best predictor of prognosis for follicular lymphoma, you would know about retrospectively, it’s something called POD24, progression of disease in 24 months. Meaning that if you have a patient who’s treated with chemotherapy and immune therapy, and then they go into remission, and then they relapse again in less than 24 months, progression of disease within 24 months, those are the, those represent about 20 percent of follicular lymphoma patients, and those represent a high-risk group of patients. That’s the best tool that we have. But unfortunately, if you’re diagnosed today, you’re not going to know if you’re in this group or not until you actually need to be treated and not just treated with immune therapy.

It has to be with chemotherapy as well. And then if you relapse within two years, then we know that this is a high-risk entity. There is genetic testing, there is something called a FLIPI-m7 scoring system. But again, these tools are not great to tease out the low risk from the high-risk follicular lymphoma patients. But 80 percent of patients who are not going to be POD24, meaning that they get treated, they’re in remission for two years or more, and actually those patients have very similar survival to the general population. So, yeah, so a lot of times we don’t know right away, but we do have some tools to kind of give us an idea.

Lisa Hatfield:

Great. Thank you for that information. It’s kind of hard for cancer patients to only know what their prognosis is retrospectively, but that’s a great explanation. Thank you. Okay, another patient question, “How does the staging of follicular lymphoma impact treatment choices?”

Dr. Sameh Gaballa:

Yeah, so as you saw, I didn’t really stress too much about staging, because it’s a blood disease. So the vast majority of patients are going to be what we call stage III to IV disease. So, obviously when you see a patient if if they, they might think that, “Oh my God, I have a stage III to IV cancer,” because that’s really what they’re familiar with. But follicular lymphoma is a blood disease, so by default it’s going to be in a lot of lymph nodes, it might be in the bone marrow as well, but stage III to IV disease follicular lymphoma doesn’t, that does not mean that this is a terminal cancer. Patients could live completely in normal life, even with a stage III to IV follicular lymphoma. This is not like a breast cancer or colon cancer where stage is everything.

But why do we have a staging system? Obviously, there’s a need to have staging system for all cancers, but clinically, the only time it makes a difference is there’s a small group of patients who have a truly stage I or II disease, meaning just one group of lymph nodes on one side of the diaphragm that may fit within one radiation field. So if you have someone who’s just coming in with one or a few groups of lymph nodes all in one place, we call that a stage I or II follicular lymphoma, not common, because again, most patients are stage III to IV. The only difference there is you can potentially offer those patients radiation therapy if it’s truly localized, but then you would need to do a bone marrow biopsy and confirm that it’s not in the bone marrow.

And if it is localized within one radiation field, that can be offered and we can sometimes give after radiation therapy, either observe it or consider giving rituximab afterwards. But that’s the only time where we’re going to mention staging, again, uncommon because most, the vast majority of patients are going to be stage III to IV. So why would we do that? Why would we irradiate if it’s only one group of lymph nodes? Because there’s about, I mean, if you irradiated, those lymph nodes will go away, but there’s about maybe a, it’s different. The number is different between studies, but about maybe a third of patients, if you irradiate that group of lymph nodes or one lymph node, it actually might not come again in the future. So you might have very long remissions/possible cure if you…and this is the only situation where we would consider treating someone who does not have symptoms, because you could have very long remissions with radiation.

Lisa Hatfield:

Although follicular lymphoma is a slow-growing cancer, can you speak to the signs that the disease is progressing in the body, what signs that patients might want to look out for?

Dr. Sameh Gaballa:

Yeah, absolutely. So, typically we educate the patients to there are some red flags to look out for, not just for progression,but also for another condition called disease transformation. So, follicular lymphoma does have a, there is a possibility that it can transform from a slow-growing lymphoma to an aggressive lymphoma. Now, this happens at a rate of about maybe 2 to 3 percent per year, but it’s a cumulative risk, so meaning if a patient lives many, many decades, their lifetime risk can be up to as high as 20, 25 percent, 30 percent, depending on the different literature, so there is a chance that these slow-growing lymphomas can transform to an aggressive lymphoma.

And when they do know this, there’s no watch and wait for transformed disease. It has to be treated with chemo immunotherapy because the goal of treatment then is to try to get rid of the aggressive component. What are the signs and symptoms to suggest that you might have transformed disease? This is not something that the patient would typically need to look out for. I tell my patients that, “You don’t need to see, do I have transformed disease or not. This is going to come, and you’re going to know when you have transformed disease. Extreme fatigue, drenching night sweats, the fever sometimes that are not going away.”

The patient might have pain if the lymph node is pressing on some important structure. They may have loss of appetite, loss of weight. So again, something that dramatically happens quickly over a few weeks of time. So if the patient feels sick for one reason or another and they’re not getting better, it can all happen within a few weeks’ time frame. This is the time to get checked early on and go see your oncologist, because then we might need to investigate if there is any potential for transformation. So that’s issue number one.

Issue number two is, which is the much more common scenario, which is the follicular lymphoma is slowly progressing. How would you know? I mean, if you notice a lymph node that in your neck or under the armpits or the groin areas, if they’re growing, then that needs to be evaluated. I mean the patients should expect that those will be growing, they will grow. But they grow over months and years. They don’t grow over weeks.

So anytime you kind of are unsure, if you feel that it’s growing faster than usual, this is, again, something to look out for. And then the B symptoms that I mentioned. So like the sweats, the fevers, the weight, loss of weight, loss of appetite, these are also sometimes things to look out for. Not necessarily, they don’t always mean that it’s transformed disease. It can also be that the follicular lymphoma is also progressing and might need to be treated as well.

Lisa Hatfield:

And then just a quick follow-up to that question. So a patient is watching out for these red flags, but are they going through any kind of regular monitoring in your office? Are you meeting with them on a regular basis? And how frequent might that be for a follicular lymphoma patient who’s watching and waiting?

Dr. Sameh Gaballa:

Yeah. So how does watch and wait look? So, and I tell patients always watch and wait does not mean ignore. Watch and wait means that we’re monitoring the disease, we’re looking at it. How do we do that? So typically we would see the patient maybe every three to six months. And then depending on how do we, when we get a sense or tempo of how their disease is progressing, then we’ll know how often we need to see them. I’ve had, I still have patients where I’m seeing them every three months. And I also have some patients where the disease has been stable for years, I only see them once a year.

In terms of imaging, that’s also sometimes an area of controversy. Typically, initially for the first maybe year or two years, I do like a scan, like a CT scan every six months, just to get a sense of how quick or how slow the disease is progressing. If there’s absolutely no change at all, then sometimes we either don’t do scans and just go by the patient’s symptoms and blood work and physical exam, or we do maybe once a year scan but not more than that. So this is how we would monitor the patients in a watch-and-wait approach.

Lisa Hatfield:

And we have another question about treatment profiles, “What can I do to reduce side effects during active treatment?”

Dr. Sameh Gaballa:

So it depends on what the treatment that you’re getting. If it’s immune therapy, like rituximab alone, those typically don’t really have a lot of side effects. I mean, sometimes with the first one or two treatments, you might get an allergic reaction, an infusion allergic reaction, which is very common, but subsequently it shouldn’t really cause a lot of side effects. If the patient is getting chemotherapy, well, it depends on which chemotherapy they’re getting. But in general, it’s always good to stay hydrated and to stay physically active. So if the patient goes in with a healthy body, well-hydrated, you eat fresh fruits and vegetables, walking 30 to 60 minutes a day, your body is going to handle the side effects much better than if you’re going in, you’re very weak, and your general health is not adequate.

Lisa Hatfield:

Another patient is asking if you can speak to emerging treatment options for patients with relapsed/refractory follicular lymphoma?

Dr. Sameh Gaballa:

Yeah. So the field of follicular lymphoma is changing rapidly. I always tell patients that sometimes the best treatment is actually on a clinical trial because those are going to be the next generation of treatments that are going to get approved in the next few years. But right now we have the most effective therapy really is CAR T-cell therapy. CAR T-cell therapy by far is the most effective treatment we have at this time. It’s approved for patients who have had two or more lines of prior therapies. We also are investigating this.

I actually have a trial here at Moffitt where we’re looking at CAR T-cell therapy as early as in the second line, in patients who have what we call the high-risk ones, the POD24. So a patient with POD24 follicular lymphoma relapsed in less than two years. We have a trial to investigate the role of CAR T-cell therapy in this setting. The other very promising group of treatments, again, is bispecific antibodies, again, currently approved in the third line, mosunetuzumab.

But there are others coming up and have data on epcoritamab-bysp (Epkinly), as well as a lot of other bispecifics, as well as combinations. I mean, epcoritamab-bysp has also data presented with combination with lenalidomide. And right now, the follow-up duration is not very long, but so far, it looks extremely promising with very high response rates. So those also might be coming very soon. And, of course, once something works in the relapsed/refractory setting, we start looking at earlier lines of therapy.

And actually, we’re now looking at trials in the first-line setting with some of these agents as well. Tazemetostat is a pill. It’s also approved in the third-line setting, but we’re also investigating it. We have a trial here where we’re looking at combining it with standard rituximab, lenalidomide, so tazemetostat plus rituximab, lenalidomide as early as in the second line. So that also is interesting. And as I mentioned before, BTK inhibitors currently being looked at in trials might also have a role in follicular lymphoma very soon.

Lisa Hatfield:

And this patient is asking about the significance of bispecific antibody treatment. And you touched on that a little bit. It looks like she’s also asking if there are specific genetic or molecular markers that can predict a patient’s response. And if I try to translate that, maybe she might be asking about targeted therapy.

Dr. Sameh Gaballa:

Yeah, so bispecific antibodies and CAR T-cell therapy, they target something called CD, either CD19 or CD20, and that’s almost universally expressed on B cells. So most of your follicular lymphoma patients are going to be expressing CD19 or CD20. Tazemetostat is the pill that I talked about. It inhibits an enzyme called EZH2. Some patients have an EZH2 mutation where it seems to work very well. However, tazemetostat also works in patients who don’t have that mutation. So that’s why it’s not very important to check for the mutation.

It seems maybe it works better in patients who do have the mutation, but it does work as well in patients who do not have that mutation. So unlike other malignancies and other cancers, biomarkers are not yet driving a lot of our treatment decisions in follicular lymphoma as of right now.

Lisa Hatfield:

Thank you. Another question. Is it common for follicular lymphoma to transform into a more aggressive type of lymphoma? And how would that change a treatment plan? And maybe how common is it for that to happen?

Dr. Sameh Gaballa:

Yeah. There’s about a 2 to 3 percent chance per year that the slow-growing lymphoma can transform to an aggressive lymphoma. That, if it does transform, I mean we talked about the symptoms and signs, you get sick quickly, rapidly enlarging lymph nodes, loss of weight, loss of appetite, drenching night sweats. No, a transformation, typically we would do a PET scan, see what’s the most active lymph node, try to get a biopsy from that and confirm there is a large cell transformation. Now, that’s a completely different disease, it needs to be treated completely differently, typically with chemoimmunotherapy.

Something like R-CHOP, for example, is one of the most common regimens we use in this scenario. And the goal of treatment here is to try to get rid of the aggressive lymphoma component here so that it does not recur again. I mentioned it’s about a 2 to 3 percent per year, but it depends on how long the patient lives. So if they live many, many, many decades, their lifetime risk is anywhere between 20 to 30 percent max during their lifetime.

Lisa Hatfield:

And As a blood cancer patient myself, this is a great question this patient is asking, “Is there a risk of secondary cancers after receiving treatment for follicular lymphoma?”

Dr. Sameh Gaballa:

So that’s always a concern, and it depends on what treatment they had. So chemotherapy that can potentially damage DNA can lead to second malignancies, including things like acute leukemia. Luckily, that’s not a high risk. That’s a rare side effect from some of those chemotherapies. Some of the pills can do that as well. Something like lenalidomide can sometimes have second malignancies. But we’re talking about rare incidences, and the benefits usually would outweigh the risks. But it’s not with all treatments, meaning some of the other immune therapies that do not involve chemotherapy would not typically be associated with some of those second malignancies. So it just really depends on what exactly the treatment you’re getting.

Lisa Hatfield:

Can you speak to maintenance therapy and monitoring in follicular lymphoma? And what signs of infection should patients and care partners be aware of during treatment?

Dr. Sameh Gaballa:

Yeah, so there have been randomized studies in slow-growing lymphomas that show that if you do, after you get your standard treatment for follicular lymphoma, if you do what we call a maintenance treatment, usually with rituximab, which is an immune therapy, where you do it every two to three months for about two years, we have data showing that that decreases or delays the risk of relapse. However, it doesn’t change the overall survival, meaning that it just has patients in remission longer. When their disease comes back, they just get treated again at that point, and it doesn’t really affect survival.

So it’s one of those shared decision-making with the patients. I usually go over the risks and benefits of maintenance therapy. It’s optional. It’s not a must. During COVID, we pretty much stopped all maintenance treatments, because the risks were outweighing the benefits because maintenance treatment is…will suppress the immune system more, is associated with more infections. And these infections can be anything. I mean, it could be a pneumonia, could be recurrent urinary infections. It could be any type of infection. So there’s always this risk and benefit that we have to discuss with the patient.

Lisa Hatfield:

Well, Dr. Gaballa, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. And on behalf of patients like myself and those watching, thank you so much for joining us, Dr. Gaballa.

Dr. Sameh Gaballa:

No, thank you, Lisa. I really appreciate it. Thank you.

Lisa Hatfield:

I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.

PODCAST: Managing Life With AML | What You Should Know About Care and Treatment

October 18, 2023/in Empowered! Podcast, PEN Blog /by Kara Rayburn

What do you need to know when it comes to managing life with acute myeloid leukemia (AML)? In this webinar, Dr. Alice Mims, an AML specialist and researcher, discusses how treatment decisions are made and how test results may impact therapy. Dr. Mims will shares the latest advances in research and key advice for living well with AML.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

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See More from Thrive AML

Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today. Today’s program is a continuation of our Thrive series. And we’re going to discuss navigating life with AML, and how you can engage in your care. 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 us today is Dr. Alice Mims.

Dr. Mims, welcome. Would you please introduce yourself?

Dr. Alice Mims:

Yeah, sure. Thank you, Katherine. I’m Alice Mims. I’m a physician and associate professor at Ohio State University. And also, the section head for the myeloid and acute leukemia program within our division of hematology.

Katherine Banwell:

Thank you so much for taking the time to join us today, Dr. Mims. We start all of our webinars in our thrive series with the same question; in your experience, what does it mean to thrive with AML?

Dr. Alice Mims:

Sure, I think that’s a great question. So, really for me, I think thriving with AML is very patient- or person-dependent. It really depends on making sure that your treatment goals align with your care. And so that means really being an active participant in your diagnosis, understanding the disease process, and making sure that your care team really understands what your overall goals are for your treatment.

Katherine Banwell:

Thank you for that because it helps us to understand as we move through the program today. One part of thriving with AML is finding a treatment approach that manages your disease and fits with your lifestyle. Before we talk about therapy, can you tell us how treatment goals are established for an individual patient?

Dr. Alice Mims:

Sure. So, for individual patients I think it’s very important that there is an initial discussion that doesn’t feel too shortened that you can have time with your care team to really go into depth about the diagnosis, about the specifics of your particular subtype of acute myeloid leukemia, understanding the treatment options, and then being given time allowed to reflect on all of that information. So, then you can come back and have your questions better answered that may come from that initial discussion.

And then help you with your team make a decision based on that information that works best for you.

Katherine Banwell:

Outside of patient preference, what other factors do you take into account when working with a patient to decide on a treatment plan?

Dr. Alice Mims:

Sure. So, there are multiple different factors that we try to take into account. Again, yeah most importantly what patients’ goals are like you mentioned, but those include overall health, including different comorbidities, so what other healthcare diagnoses, medications are you taking, what are the patient’s age, thinking about that for long-term goals, overall support from loved ones, family to — just because care can be really involved. And then in particular, thinking about specific features of that individual patient’s AML, including molecular, genetic features of the leukemia.

Katherine Banwell:

Well, let’s talk more in depth about the test results you just mentioned.

What is the test for genetic markers? And how is it conducted?

Dr. Alice Mims:

So, there are a few different tests that we use under that scope of genetic markers. So, those include looking at chromosomal abnormalities of the DNA. So, with cytogenetics, and then also more specific prose where we call FISH testing. And then also we look for specific gene mutations through next generation sequencing, or PCR testing. And so, we use all of those results together to give us the most information we can about that individual’s leukemia.

Katherine Banwell:

How has molecular testing revolutionized AML care?

Dr. Alice Mims:

Oh gracious. It’s really done such – so much for leukemia. And just things are so different even where they were five years ago because of having molecular mutations, that information available.

So, it helps with discussing prognosis. So, we know that different molecular features can tell us about curative intent and what are the treatment steps we would need to take to give the best chance long-term. And then also now, we’ve evolved to where we have directed therapies that can target mutations or the proteins that arise from those mutations with therapeutic options.

Katherine Banwell:

Is this testing standard following an AML diagnosis?

Dr. Alice Mims:

It is standard following an AML diagnosis. That’s recommended within all of the guidelines with patients and really should be done for all patients at initial diagnosis.

Katherine Banwell:

Can genetic markers or mutations change over time? For example, if a patient relapses, should molecular testing be done again?

Dr. Alice Mims:

Yes, absolutely. Mutations can evolve. It’s something we call clonal evolution of the leukemia.

And so you can have mutations that could be present at diagnosis that may no longer be present. Or the opposite can occur where you have new mutations that can appear. And that can lead to different options for treatment. So, it’s very important to retest at time of relapse.

Katherine Banwell:

What advice do you have for patients who want to ensure that they’ve actually undergone molecular testing? What questions should they be asking their healthcare team?

Dr. Alice Mims:

I think it’s definitely important to bring this up with the healthcare team. And it should be something at diagnosis and relapse to ask, what are the cytogenetics, what do they look like now, what do the gene mutations, and really as mentioned before, it’s so crucial in talking about prognosis, talking about treatment options that if it doesn’t come up, it’s really something that you should take a pause and try to go back to readdress with your team.

Katherine Banwell:

I’d like to move on to treatment now, Dr. Mims. And, of course, treatment takes place in phases for AML. The first is induction therapy. Can you start by defining induction therapy for our audience?

Dr. Alice Mims:

Sure. So, induction therapy is really terminology that we use to talk about initial therapy for someone with a new diagnosis. So, we can have intensive induction therapies, and non-intensive induction therapies. But the goal for either of those types of treatment is to get the leukemia into remission.

So, to talk about that in a little bit more detail, for intensive induction regimens, those typically involve cytotoxic chemotherapy. So, you may hear terminology like, “7 + 3 induction,” or “high-dose cytarabine regimens,” but those are typically more intensive regimens that we use that can have increased side effects but may be very important based off the type of acute leukemia.

And then for non-intensive based regimens, one of the standards has really evolved to be venetoclax (Venclexta) and azacitidine (Vidaza) as a non-intensive regimen that can work very well for a majority of patients. And there are some off shoots of that as well.

Katherine Banwell:

Okay. And when does stem cell transplant come into play?

Dr. Alice Mims:

Sure. So, stem cell transplant is something that we all think about at the beginning for anyone with a new diagnosis of acute myeloid leukemia where as we’re working to get back genomic information about the individual’s acute leukemia, we may go ahead and start looking for different donors, doing typing, just in case that’s something that we need as far as someone’s therapy.

But typically we reserve stem cell transplant for patients who have either intermediate or high-risk features of their AML. Or who may have even favorable respite are not responding as well as we would like when looking at the depth of remission. And so, we always want to be prepared in case that’s something we need to move forward with as part of their care, if the goal of their treatment is for curative intent.

Katherine Banwell:

Let’s talk about what happens after the initial phase of treatment. What’s the purpose of consolidation therapy?

Dr. Alice Mims:

Sure. So, there are a few different purposes we can use consolidation therapy for. So, for patients – consolidation therapy is used for patients who have achieved remission. And then it’s either to try to hopefully get them cure of their AML. The patients have more favorable risk features of their AML and cure is an option through just chemotherapy alone.

Or it can be used to try to keep people in remission while we’re working to get towards stem cell transplant as that can sometimes take a few months to get a donor ready, have things ready to move forward with transplant.

Katherine Banwell:

And what are the options for consolidation therapy?

Dr. Alice Mims:

Sure. So, options for consolidated chemotherapy are typically based off of what you had initially for induction chemotherapy. So, if it’s more intensive-based regimens, it typically is consolidation with intensive consolidation, cytarabine based regimens.

For lower intensity regimens, typically consolidation is more continuing therapy on what you started but may have adjustments of the treatment based off of trying to decrease the toxicity now that the patients are in remission.

Katherine Banwell:

And how are patients monitored in consolidation therapy?

Dr. Alice Mims:

Sure. So, it definitely is based off of the individual’s type of consolidation chemotherapy or treatment. But most patients, if we feel like the treatment is going to lower blood counts, they have bloodwork twice a week, and we’re watching for things, for side effects for treatment, looking out for risk of infection, giving transfusion support, and then if something happens that we feel like we can’t support patients in an outpatient setting, then we’ll get them back into the hospital if they need to for care.

Katherine Banwell:

What side effects are you looking for?

Dr. Alice Mims:

So, most of the side effects with any of the treatments that we give are what we call myelosuppressives. So, it lowers the different types of blood counts.

So, white blood cell count which increases risk of infection, red blood cells, so, side effects or symptoms from anemia. And then risk of bleeding from low platelet counts.

Katherine Banwell:

Okay. Maintenance therapy has become more common in other blood cancers particularly in multiple myeloma. Is there a role for maintenance therapy in AML?

Dr. Alice Mims:

There actually is now, which is something that’s newer that has evolved for acute myeloma leukemia. So, in the context of intensive therapy, we now have oral azacitidine (Onureg), which is a little bit different than some of the IV formulations that we give.

But for patients who receive intensive induction therapy, get into remission and may receive consolidation but are not able to go onto transplant if they have that immediate or higher risk features, there’s FDA approval for oral azacytidine, which has been shown to improve overall survival and keep people in those remissions for longer.

More recently, specifically for patients who have a particular type of mutation called FLT3, if they also receive intensive induction therapy with a FLT3 inhibitor added onto that, then their quizartinib was just recently approved as a maintenance therapy for patients with that particular type of AML.

Katherine Banwell:

Are there emerging AML therapies that patients should know about other than what you just mentioned?

Dr. Alice Mims:

Sure. So, I think there are a lot of exciting treatments that are up and coming based off of many small molecule inhibitors that are being studied.

One in particular I would mention that everyone’s very excited about is a class of agents called menin inhibitors.

And so that’s an oral agent that has been shown to have responses for patients with relapse or refractory AML who have NMP-1 mutations or have something called KNT2A rearrangements. And seeing responses with just a single agent in the relapse refractory setting, it’s been really exciting. And so, I think we’re hopeful that that may become FDA-approved in the near future. And it’s also now being explored in combination with intensive chemotherapies as well as less intensive induction regimens. And so, maybe we can do a better job without brunt treatment by adding these therapies on.

Katherine Banwell:

That’s exciting news. When it comes to living and thriving with AML, Dr. Mims, managing disease symptoms and treatment side effects is a big part of that.

Would you talk about how symptoms and side effects can impact life with AML?

Dr. Alice Mims:

Sure. So, I think from my perspective, what we are always trying to do when we’re moving forward with a treatment plan is of course, get patients into remission, but the purpose of getting into remission is not just to achieve that, but for patients to have quality of life. And so, there needs to be continued dialogue between the patient and the treatment team about how you’re feeling during treatment. Because they’re definitely based off of therapy, different side effects, things that could be not necessarily due to active leukemia anymore. And so there may need to be dose adjustments and other things that we do to the regimens in order to make you feel as good as possible while continuing on treatment.

Katherine Banwell:

Why is it so important for patients to speak up about any issues they may be having?

Dr. Alice Mims:

I think it’s important because you’re your own best advocate. Being the patient, being the person who’s living with having this diagnosis and going through the treatment, myself, or other colleagues as physicians, we can have a sense of what may be going on based off of numbers. But we’re not truly going to know how you’re feeling unless you speak up and let us know. And there may be things we could do with supportive medications, dosing adjustments as mentioned, that could help in making you hopefully feel better and less side effects and toxicities from treatment.

Katherine Banwell:

What are some common symptoms and side effects that you hear about?

Dr. Alice Mims:

Okay. Sure. So, different side effects that I would say that people can have, people can feel fatigued just from treatment in general. Some of our therapies can cause neuropathy, skin rashes, nausea, vomiting, diarrhea. And so, all of those are important along as mentioned with symptoms you may have from decreased blood counts that we do have interventions that we could implement to help the – make the therapy more tolerable.

Katherine Banwell:

So, for the side effects like fatigue for example, what do you do about that?

Dr. Alice Mims:

So, I think it depends on the level of fatigue. Of course, we don’t have – I wish we had a pill that could just make fatigue improve. But if it’s really that the treatment is deriving it, and it’s impeding your quality of life there are dose reductions or things we can do that may help with the level of fatigue you’re experiencing.

Katherine Banwell:

And what about some of the other side effects. You mentioned diarrhea.

Dr. Alice Mims:

Sure.

Katherine Banwell:

How is that handled?

Dr. Alice Mims:

Yeah. So, for issues from GI complications such as nausea, vomiting, diarrhea, we have really lots of choices for anti-nausea medicines and different combinations we can use or newer antiemetics that can help with that. And from a diarrhea perspective it depends on the treatment. But of course, we want to make sure first and foremost there’s no infection. And if not, then there are good antidiarrheals we could add on to the regiment to help with that as well.

Katherine Banwell:

Okay. That’s great advice. Thank you. I want to make sure that we get to some of the audience questions. These were sent to us in advance of the program today. Let’s start with this one; Janet wants to know what factors enable a patient to achieve and continue in remission if they are not able to achieve stem cell transplant due to age restrictions.

Dr. Alice Mims:

So, I think first and foremost, I think it’s very important that there — that patients are aware that there shouldn’t be just strict, stringent cutoffs of age as a requirement for stem cell transplant. And really, there’s a lot of research going on that we should take into account. Physiological age, and there’s ways to measure that just to be sure that stem cell transplant really is not an option. And for patients who stem cell transplant is not an option, I think as we talked about earlier, so there can still be really great treatments that can get patients into remission and ongoing therapies with dosing adjustments again to decrease toxicity and improve quality of life and thinking about things like maintenance therapy as appropriate.

Katherine Banwell:

What are the age restrictions, and why are they there?

Dr. Alice Mims:

So, sometimes you will hear age 75.

Really, no one above age 75 should move forward with transplant. And that’s based off of past data where they’ve explored transplant and seen increased toxicity. And from transplant in itself, increased side effects, increased risk of early mortality. And so, I do think it’s important to take the patient as a whole into consideration because again, you could have someone who’s 77 who may be running marathons, and in great shape, and not a lot of other healthcare issues, who may still do really well with treatment. And so, I think that’s – really needs to be taken in account, really the overall picture of health for the patient before making…

Katherine Banwell:

So, the…

Dr. Alice Mims:

…just a firm cutoff.

Katherine Banwell:

Right. Okay. So, it’s not cut and dry.

Dr. Alice Mims:

Exactly.

Katherine Banwell:

If you’re 75 or older, then you definitely can’t have stem cell transplant.

Dr. Alice Mims:

That’s correct.

Katherine Banwell:

Then you’re looking at everyone individually.

Dr. Alice Mims:

Yeah. So, it really should be looked at.

And I still have some patients who will come to me and say, “Oh, I was told I’m 68 years old, I’m not a candidate.” And that always makes me take a step back. And then we kind of have to have that discussion again. And they may still not be a good candidate based off of other comorbidities or healthcare issues, but it shouldn’t just be a number rules you out for having that as an option.

Katherine Banwell:

Good to know. We received this question from Carl, “What does treatment look like following transplant? And what are doctors looking for when monitoring through blood tests?”

Dr. Alice Mims:

Sure. So, after transplant, the first three months is pretty intensive of being seen very frequently at your transplant center twice to once a week. You’re also on immunosuppressive medications to try to help prevent issues like graft vs host disease, which can be a complication from transplant.

And then over time if you’re doing well, we try to start tapering off those immunosuppressive regimens to see if you can tolerate that. And what I say to most of my patients for – who are undergoing transplant, it can take some time to really feel back to being yourself. It can take six months, it can take a year or longer. And sometimes your normal is a new normal based off of how you do and the side effects of the transplant in itself. So, you may not go back to if you’re here before transplant and before your diagnosis, it may be that this is your new normal. Just so people can be prepared and know what they’re signing up for.

Katherine Banwell:

And with the blood testing, what are you looking for when you’re monitoring a patient?

Dr. Alice Mims:

Sure. There are a few different things that we’re looking for when monitoring patients. So, one, making sure that the stem cells or the graft from the donor are recovering.

You want to see that blood counts, levels of white blood cells, red blood cells, platelets are getting to normal levels. You’re also assessing and making sure you’re not seeing signs of relapse. You’re checking levels of donor cells versus the patient cells within the stem cell — sorry, within the stem cell compartments. And so, we’re taking all of those into account as well as checking organ function and making sure there’s no signs of potential graft versus host disease as well.

Katherine Banwell:

Katrina sent in this question; do you have any advice for dealing with a general oncologist who does not exactly follow my AML doctor’s recommendations? I see a local oncologist and an AML specialist guides my care.

Dr. Alice Mims:

I think that’s a tough question. And so, I think I’ll answer that if – maybe two different ways.

So, one, I think sometimes it’s hard when you’re the local community oncologist, and you’re there for the day-to-day care. And so there may need to be treatment adjustments and other things that you need to do in that moment or time to help make sure that toxicities are not too severe or are helping the patient as you’re seeing them day-to-day. And it may not be easy to involve the specialist right there in the moment. But I think if there are bigger issues as far as overall goals, overall communication, it should be that both are able to communicate well with each other. They should be able to communicate via email, via text message. That’s what I do with a lot of my community partners. And it’s always important that you as a patient feel confident in your care. And so, if that trust is not there that things are being followed, then it may be important to look and see if there’s another physician who you do feel comfortable with proceeding with your care with.

Katherine Banwell:

And what do you tell patients when they’re not feeling comfortable with their care team or their oncologist or their general oncologist? What do you say to them to give them some confidence to find somebody else who they feel more comfortable with?

Dr. Alice Mims:

Sure. So, I’ll just say from my perspective. So, if I’m seeing a patient and they may have questions, they may not feel comfortable, they may need more time. And I always think it’s important if you want a second opinion, whether it’s at a specialist level, whether it’s in a community oncology private setting, that should not be offensive to the physician.

If that makes the patient feel more comfortable in what they’re doing with their care, that’s how they should move forward. And it should be what they feel like is best. If a physician takes that personally or is offended by it, I think that’s more of their problem as opposed to anything that you’re doing wrong.

Katherine Banwell:

Okay. Thank you for that. Ryan wants to know; I’m a year and a half post-transplant, how can you tell if the aches and pains in your joints are normal aging, host vs graft disease, the AML returning, or even something else?

Dr. Alice Mims:

So, I think that’s also a difficult question to answer because it really is patient dependent. And so, I think if you’re having new joint aches or pains, it’s always important to reach out to your transplant team to make sure that – it could be any of the above..

And so you’re doing the appropriate workup with lab work, imaging, things that would be appropriate or seeing certain specialists. Maybe orthopedist if needed because it could be I’d say less likely leukemic relapse, but still want to be sure. But it could be definitely complications from GVHD or there’s some joint issues that can evolve post-transplant, especially for people who are on long-term immunosuppressant medications. Or it could be the normal effects of aging. So, it’s always good to have that reassurance.

Katherine Banwell:

Let’s talk a little bit about mental health resources. Managing the worry associated with a diagnosis or concerns about relapse, or even various side effects can lead to emotional symptoms like anxiety and fear.

Why is it important for people with AML to share how they’re feeling with their healthcare team?

Dr. Alice Mims:

So, I think it’s very important because, one, all of those feelings are normal feelings. I think they’re sometimes that from going through such a rapid diagnosis and then having to start treatment pretty quickly and going through all the ups and downs with these types of diagnosis can really lead to for some patients PTSD-type symptoms. And then there are also things that can evolve over time where their anxiety or even survivorship guilt as you go if you move forward and are doing well where you may have some friends or people you met along the way who may not have had as good outcomes. And so, there are resources available based off of where you are.

But for survivorship, oncology specific counseling to deal with some of these feelings that are understandable and normal for what patients have been through.

Katherine Banwell:

Can a social worker help? And are there other people on the healthcare team who can support a patient’s emotional needs?

Dr. Alice Mims:

Oh, absolutely. So, I think it’s really place-dependent on where you are but yes, absolutely. Social workers are a great resource for patients. There may be other collaborative teams based off of where you’re receiving your treatment that may be available that are maybe patient support groups where you can go and be with other patients or Facebook, social media support groups. And I think all those can be very helpful. And I know at least at our center, we also have patient mentors who have been through and gotten through to the other side of transplant or whatnot who are great resources because they’ve lived and experienced it.

And I think that’s just as a physician, I can talk about things that I don’t have that personal experience having lived through it. And I think that’s very important —

Katherine Banwell:

Yeah. It’s a…

Dr. Alice Mims:

…to be able to have somebody to talk to. Yeah.

Katherine Banwell:

Yeah. What about the financial aspect of treatments? There are many people who would find it difficult to find and maybe they don’t have insurance, or their insurance doesn’t cover a lot. How do you help patients who are dealing with financial restrictions?

Dr. Alice Mims:

Sure. So, I think that we’re fortunate here because we have a lot of support staff to help patients with our financial counseling team. We also have people within the medication assistance programs who can help find foundation grants to help with medication support, travel support.

I think for patients who may not have those things available at their individual center, The Leukemia & Lymphoma Society is a great place to reach out for.

And there are other foundations as well who at least may have navigators to help patients figure out other resources or funding available.

Katherine Banwell:

Yeah. Okay. That’s really good information, Dr. Mims. Thank you. And please continue to send in your questions to question@powerfulpatients.org and we’ll work to get them answered on future programs. Well, Dr. Mims as we close out our program, I wanted to get your thoughts on where we stand with progress in AML care. Are there advances in research treatment that you’re hopeful about?

Dr. Alice Mims:

Yes. I would say from even when I finished fellowship 10 years ago, not to state my age, but we had essentially about three treatments at that time.

Now in the past five years there have been I think maybe 11 different new drugs that have been approved for a acute myeloma leukemia. And so, I think we’re just on the precipice of really evolving to have individualized care. Hopefully have more curative options for patients. So, I’m really excited for the time we’re in right now where I even hope we’ll be in the next five years for patients.

Katherine Banwell:

That’s an encouraging message to leave the audience with, Dr. Mims. Thank you so much for joining us today.

Dr. Alice Mims:

Thank you so much for letting me be here with you today.

Katherine Banwell:

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

Demystifying Breast Cancer:

October 10, 2023/in BC Blog ND, BC Blog T, BC Blog TC, BC Blog WPS, BC Newly Diagnosed, BC Testing, BC Treatment & Clinical Trials, BC Whole Patient Support, Breast Cancer, Patient Empowerment, PEN Blog /by Marie Ennis-O'Connor

Separating Fact from Fiction During Breast Cancer Awareness Month

Breast Cancer Awareness Month, which takes place each October, is a global campaign that aims to raise awareness about breast cancer, encourage early detection through regular screenings, and provide support to those affected by the disease. During this month, various organizations, foundations, and individuals come together to educate and inform the public about breast cancer prevention, treatment, and survivorship.

One of the significant challenges in combating breast cancer is the prevalence of myths and misconceptions surrounding the disease. These myths can contribute to fear, anxiety, and even misinformation, leading to delays in seeking medical help or pursuing necessary preventive measures.

In this article, we will focus on debunking some of the most common breast cancer myths.

Myth 1: Only Older Women Get Breast Cancer

Fact: While breast cancer is more prevalent among older women, it is a disease that knows no age limits. Breast cancer can strike at any stage of a woman’s life, including young adulthood. The diagnosis of breast cancer in young women can be particularly devastating, as they are often at the peak of their careers, building families, or pursuing their dreams.

Myth 2: You Can’t Get Breast Cancer if It Doesn’t Run in Your Family

Fact: Breast cancer is usually not directly inherited through genes. Having a family history of breast cancer can increase the risk, but most cases occur in women without any family history. Many factors, both genetic and environmental, can influence the development of breast cancer. Some genetic mutations like BRCA1 and BRCA2 are associated with higher risk, but these mutations are relatively rare and account for only a small percentage of all breast cancer cases. Therefore, even if breast cancer does not run in your family, it doesn’t mean you are immune to the disease.

Myth 3: Breast Cancer is Always Painful

Fact: Many women mistakenly believe that if they are not experiencing pain or discomfort in their breasts, they are free from the risk of breast cancer. However, this is far from the truth. One of the most deceptive traits of breast cancer is its ability to develop silently, often without causing pain or discomfort. By the time it becomes painful or symptomatic, it may have reached an advanced stage, making it more challenging to treat.

The presence of the following signs should raise concern:

Lumps or Masses: One of the most recognizable signs of breast cancer is the discovery of a lump or mass in the breast or underarm area.
Skin Changes: Changes in the skin over the breast, such as redness, dimpling, puckering, or an orange-peel-like texture, can be indicative of breast cancer. These changes may not be painful but should prompt immediate medical evaluation.
Nipple Changes: Unexplained changes in the nipples, such as inversion, scaling, crusting, or discharge (other than breast milk in nursing mothers), should be examined by a healthcare professional.
Breast Pain: While breast pain is not a reliable indicator of breast cancer, persistent, unexplained breast pain or discomfort should not be ignored. It is essential to seek medical advice to rule out any underlying issues.

Myth 4: If You Have a Lump in Your Breast, It’s Always Cancer

Fact: It’s important to understand that not all breast lumps indicate cancer. In fact, the majority of breast lumps are benign, meaning they are non-cancerous. While it’s always prudent to take any changes in your breasts seriously and consult a healthcare professional, it’s helpful to know that there are many other potential causes of breast lumps.

One common cause of benign breast lumps is cysts. Cysts are fluid-filled sacs that can develop in the breast tissue. They are typically round or oval in shape and can feel smooth or rubbery to the touch. Cysts may appear and disappear on their own or fluctuate in size with hormonal changes throughout the menstrual cycle. While cysts are usually harmless, they can sometimes be painful or uncomfortable.

Another benign condition that can cause breast lumps is a fibroadenoma. Fibroadenomas are solid, non-cancerous tumors that often occur in younger women. They are typically smooth, firm, and movable. Fibroadenomas are influenced by hormonal changes and can grow in size or become more tender during pregnancy or certain hormonal therapies. Although fibroadenomas are not cancerous, it is essential to have any new or changing breast lumps evaluated by a healthcare professional to confirm the diagnosis.

Other potential causes of benign breast lumps include breast infections (mastitis), lipomas (soft fatty tumors), and traumatic injuries to the breast tissue. In some cases, hormonal imbalances, such as those associated with certain medications or conditions like polycystic ovary syndrome (PCOS), can also contribute to the development of breast lumps.

Myth 5: Only Women Get Breast Cancer

Fact: Although rare, men can develop breast cancer. Men have breast tissue too, although it is typically less developed than women’s breast tissue. Any changes in the breast area should be monitored. These changes may include a lump or thickening in the breast or under the nipple, changes in the size or shape of the breast, nipple discharge (often bloody), or changes in the skin over the breast area.

When it comes to breast cancer in men, many of the risk factors are similar to those for women. Age is a significant factor, with the risk increasing as men get older. Family history of breast cancer, genetic mutations such as BRCA2, exposure to estrogen, and certain medical conditions such as Klinefelter syndrome or liver disease are also known to increase the risk for male breast cancer.

Although breast cancer in men is relatively uncommon, it is still important to raise awareness and provide education about this topic. Men should be encouraged to understand their breast health, know the potential risk factors, and be proactive in seeking medical attention if any concerns arise. Early detection and intervention can greatly improve the prognosis and outcome for men diagnosed with breast cancer.

Myth 6: Bras with Underwire Cause Breast Cancer

Fact: Numerous scientific studies have been conducted to investigate the potential link between underwire bras and breast cancer. The results consistently show that there is no credible evidence supporting the notion that wearing underwire bras increases the risk of developing breast cancer.

Myth 7: Deodorants Can Cause Breast Cancer

Fact: Similarly there is no scientific evidence to support the claims that deodorants and antiperspirants cause breast cancer. These products are used by millions of people worldwide, and rigorous scientific research has not established any direct link between their use and the development of breast cancer. Rather than worrying about everyday products, we should focus on known breast cancer risk factors, such as genetics, family history, lifestyle choices, and regular breast health checks. These factors have a more significant impact on breast cancer risk, and understanding and addressing them can contribute to overall breast health and well-being.

Myth 8: Breast Cancer Is A Single Disease

Fact: Breast cancer is not a singular disease but rather a diverse and complex group of different types of tumors. These tumors can vary in their biological characteristics, behaviors, and responses to treatment.

The classification of breast cancer takes into account various factors, including:

Receptor Status: Breast cancer tumors can be classified based on the presence or absence of hormone receptors, such as estrogen receptors (ER) and progesterone receptors (PR), as well as human epidermal growth factor receptor 2 (HER2). These classifications guide treatment decisions and are crucial in determining the most effective therapies.
Histology: Breast cancer tumors can have different histological characteristics, which means they can look different under a microscope. For example, some breast cancers are invasive ductal carcinomas, while others are invasive lobular carcinomas, each with its distinct features.
Genetic Subtypes: Advances in genetic research have led to the identification of specific genetic subtypes of breast cancer, such as triple-negative breast cancer (negative for ER, PR, and HER2) and HER2-positive breast cancer. These subtypes may respond differently to targeted treatments.
Stage and Grade: Breast cancer is staged based on the size of the tumor, lymph node involvement, and whether it has spread to other parts of the body. The grade of the tumor also reflects its aggressiveness.

Recognizing the diversity within breast cancer is important because different types of breast cancer may require different treatment approaches. Treatment plans are tailored to the specific characteristics of the tumor and the individual patient, taking into account factors like age, overall health, and personal preferences.

Additionally, ongoing research into the molecular and genetic aspects of breast cancer continues to reveal more about the complexity of the disease, leading to more precise treatments and improved outcomes. By dispelling the myth that breast cancer is a single disease, we highlight the importance of accurate diagnosis and individualized treatment plans, ultimately contributing to better care and outcomes for those affected by breast cancer.

Myth 9: Mammograms Cause Breast Cancer

Fact: Mammograms, a type of X-ray imaging, are a tool in the early detection of breast cancer, identifying abnormalities that may not be noticeable during a physical examination. However, concerns about the potential risks associated with radiation exposure have been raised.

Radiation can be harmful, particularly at high doses, but the dose used in mammography is extremely low. The level of radiation involved in a mammogram is carefully regulated and tailored to minimize any potential risks. Modern mammography machines are designed to deliver the lowest radiation dose possible while producing clear and detailed images.

It is understandable to have concerns about radiation exposure, but it’s essential to consider the bigger picture. The benefits of regular mammograms far outweigh the minimal radiation exposure involved. Early detection of breast cancer through mammography can significantly increase the chances of successful treatment and improve long-term outcomes.

Myth 10: Stress Causes Cancer

Fact: While it is well-established that chronic stress can have a negative impact on overall health and well-being, including weakening the immune system, there is no conclusive scientific evidence to support the claim that stress directly causes cancer.

While stress may contribute to an individual’s overall health, it is only one piece of the puzzle when it comes to cancer development. That being said, managing stress and adopting healthy coping mechanisms are still important for overall well-being. Engaging in activities such as exercise, meditation, or pursuing hobbies can help reduce stress levels and improve mental health.

Rather than living our lives in fear that stress alone will lead to cancer, it is more helpful to prioritize overall health through a balanced diet, regular physical activity, and appropriate cancer screenings. These proactive measures have been shown to have a more direct impact on reducing cancer risk.

Breast Cancer Awareness Month serves as a reminder that knowledge is power. By dispelling these myths and promoting accurate information, we can empower women to make informed decisions about their breast health. Breast cancer is a complex and multifaceted disease, and understanding the facts is essential in the journey toward prevention, early detection, and improved outcomes.

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

The Patient Advocate’s Guide to Social Media Content Planning

September 26, 2023/in Patient Empowerment, PEN Blog /by Marie Ennis-O'Connor

In our role as patient advocates, social media is an important tool that we use for sharing information, connecting with others, and amplifying our voices. Managing social media effectively can be challenging in and of itself, but it can be even more challenging when you are undergoing cancer treatment. To minimize your workload, content planning is key.

In this article, we will explore why social media content planning is a valuable strategy and how to do it effectively.

Why You Should Plan Your Social Media Content In Advance

Creates Consistency:

Content planning allows you to maintain a consistent presence on social media. Consistency builds trust and makes your advocacy efforts more visible.

Algorithm Visibility:

Social media algorithms love content that engages users consistently. By keeping a consistent schedule and planning your posts in advance, you’ll get more visibility from the algorithms.

Proactive Advocacy:

By planning your content, you position yourself as a proactive advocate. By getting ahead of key moments, awareness campaigns, and significant dates, you can amplify your advocacy message rather than reacting haphazardly.

Enhances Collaboration:

When working with other advocates on a campaign, content planning keeps everyone on the same page. This simplifies collaboration and ensures a consistent message across all channels.

Alleviates Burnout:

The demands of patient advocacy can be emotionally and mentally taxing, especially when managing health issues. Content planning allows you to allocate specific blocks of time for content creation and scheduling, freeing you from the pressure of daily posting. With a well-thought-out calendar, you can work at your own pace and avoid burnout.

Now that we’ve explored the rationale behind content planning, let’s look at how to implement it effectively.

1. Create a Content Calendar

Creating a content calendar is the foundation of good content planning.

Here are some tips to help you create your content calendar:

Choose a Calendar Format

Choose the format that will work best for you. You can use digital tools like Google Calendar, Microsoft Excel, or specific social media management platforms. Alternatively, a physical planner or whiteboard can work if you prefer a tangible approach.

Set a Time Frame

Determine the time frame your content calendar will cover. Ideally, plan your content at least one month in advance. This allows time for content creation, revisions, and scheduling, reducing last-minute stress.

Identify Key Dates and Events

Note down key dates, events, and awareness months relevant to your advocacy cause. These can include World Health Days, national observances, or local events.

Include a mix of both evergreen content (relevant year-round) and timely content (related to current events or trends).

Plan Content Distribution

Mark on your calendar how you’ll distribute your content across different social media platforms. Each platform may require slightly different content formats and messaging to optimize engagement.

Maintain Flexibility

While a content calendar provides structure and helps you plan ahead, advocacy often revolves around societal, political, and healthcare issues that are subject to rapid change. Emerging issues may require you to pivot your content strategy to address the most pressing matters, ensuring that your advocacy remains relevant and impactful. When creating your content calendar, leave some slots open or designate them as “flexible.” These slots can be used for addressing emergent issues as they arise without disrupting your overall schedule.

2. Allocate A Mix of Content Types

Decide on the types of content you’ll create. You will add more depth and dynamism to your social media advocacy by diversifying your content.

Here are some ideas for a mix of content types you can use:

Use text-based posts to deliver key takeaways, prompt discussions, or provide brief updates. Craft compelling headlines and captions to capture attention.
Share impactful images, illustrations, or memes that resonate with your advocacy cause.
Create video content that highlights personal stories, interviews experts, or explains complex concepts. Pay attention to video quality and subtitles for accessibility.
Pose questions related to your cause, gather feedback, and involve your audience by using poll features. Share poll results and discuss their implications in follow up posts.
Curate informative articles that educates your audience about relevant topics, research findings, or treatment options.

3. Plan Posting Frequency

Determine how often you’ll post on each platform. Different social media platforms have varying recommended posting frequencies due to their algorithms and user behaviors. For instance, X’s (formerly known as Twitter) fast-paced nature often requires more frequent updates.

Focus on the quality of your content rather than sheer volume. Posting too frequently with low-quality or repetitive content can lead to audience fatigue and unfollows. It’s always better to offer valuable, relevant content that resonates with your audience.

4. Schedule Posts

The ability to schedule your social media content in advance is a game-changer for effective content planning. You can schedule posts for specific dates and times, ensuring your content goes live when your audience is most active. For advocacy with a global audience, you can schedule posts according to different time zones, ensuring your content reaches a worldwide audience at the right times.

There are many social media management tools, such as Buffer and HootSuite, that support a variety of platforms, including Facebook, Twitter, Instagram, LinkedIn, and others. This multi-platform capability simplifies the task of managing content across different channels. Rather than posting manually at specific times, you can plan and schedule content for multiple platforms all at once.

5. Monitor and Adapt

Continuously monitor the performance of your content calendar. Use analytics to track engagement, reach, and other relevant metrics.

Here are some key metrics to track:

Engagement Metrics:

Likes, shares, comments, and retweets. These indicators reflect how actively your audience is interacting with your content.

Reach and Impressions:

How many people are seeing your content (reach) and how often it’s being displayed (impressions). This data gives you an idea of your content’s visibility.

Click-Through Rates (CTR):

The percentage of people who click on links within your posts. CTR is crucial for tracking conversions, such as website visits or signing up for newsletters.

Armed with these data-driven insights, spend some time analyzing which posts or content types consistently perform well. Understand what elements contribute to their success, and consider creating more content in a similar vein. Conversely, if certain posts or content types consistently underperform, reassess their relevance and value. Are there adjustments you can make to improve their engagement potential?

In summary, dedicating time to strategic content planning transcends good practice; it stands as the cornerstone of your online advocacy. As outlined in this article, taking a systematic approach to your social media content can enhance your advocacy efforts. Follow these steps and incorporate these tips into your online advocacy to achieve even greater success in the future.

Marie Ennis-O'Connor

hcsmmonitor.com/

Olutasidenib for Relapsed or Refractory Acute Myeloid Leukemia with IDH1 Mutation

September 19, 2023/in Acute Myeloid Leukemia, AML Blog ND, AML Blog TC, AML Newly Diagnosed, AML Treatments and Clinical Trials, PEN Blog /by Art Flatau

Introduction

Once again a new drug that was recently FDA approved for some Acute Myeloid Leukemia (AML) patients. Olutasidenib (brand name: Rezlidhia) was approved in December 2022 for AML patients who have relapsed or are refractory to treatment (R/R) with a mutation in the Isocitrate Dehydrogenase 1 (IDH1) gene. There is a different gene called IDH2, which can also be mutated in patients with AML, but different medications are used for IDH2 mutations.

An existing drug, called ivosidenib (brand name: Tibsovo) was already approved for patients with AML and a mutation in IDH1. It was initially approved in July 2018 as a single agent for patients with R? AML with a IDH1 mutation. Later it was approved for use in combination with azacytidine for newly diagnosed AML patients with an IDH1 mutation. There was also a specific test (the Abbott RealTime IDH1 Assay) approved along with the initial approval of ivosidenib. This test was also approved to select patients to be treated with olutasicdenib.

Results of the Current Study

The study used to support the approval was a non-randomized trial (all patients received olutasidenib). The study included patients with AML and ones with Myelodysplastic Syndrome (MDS) who had a mutation in the IDH1 gene. Patients were treated with olutasidenib as a single agent (monotherapy) as well as combined with azacytidine. The approval was based on the results of the 147 patients who received olutasidenib monotherapy (the results are described in detail here).

In the study, about 35% of patients achieved a complete remission (CR) or complete remission with partial hematologic recovery (CRh) – the latter means that they appear to be in remission, but their blood counts are not normal. In addition, about one third of patients who were platelet and/or red blood transfusion dependent at the start of the trial eventually did not require transfusions for 8 or more consecutive weeks (transfusion independent). All patients experienced 1 or more adverse events (AEs) and almost all experience a serious (Grade III or IV) AE. These AEs are expected in patients with AML, particularly older patients, as most of the patients were.

Comparison with Ivosidenib

Now that there are 2 drugs approved for AML patients with an IDH1 mutation, the question becomes which drug should be used and in which circumstances. There have been no studies (at least ones that are published) that directly compare the drugs. According to the paper from Bload Advances on the responses to olutasidenib and ivosidenib as single agents was about the same, however the length of remission in the patients receiving olutasidenib (a median of 25.9 months) compared to ivosidenib (8.2 months0. The big caveat is that, since the comparison was not randomized, it is difficult to determine if there were differences in risks in each group. My guess is that there will not be a randomized comparison of these two groups.

It will be more interesting to look at these drugs in combination with azacytadine and also as a 3 drug combination of azacytidine and venetoclax. In addition, these drugs could be combined with existing intensive chemotherapy regimens (for instance, so-called 7+3 induction with cytarabine and daunorubicin). Likely the combinations would produce more remissions but might have significantly more side effects.

In summary, the good news is that there is another drug that can help some patients with AML, the bad news is that the determination of the best therapy is yet more complicated.

IMF Patient and Family Seminar Takeaways

September 12, 2023/in MM Blog ND, MM Blog T, MM Blog TC, MM Newly Diagnosed, MM Testing, MM Treatments and Clinical Trials, Multiple Myeloma, Patient Empowerment, PEN Blog /by Lisa Hatfield

August 2023

Los Angeles, California

Other than bouncing and swaying through Tropical Storm Hillary upon takeoff, the IMF’s Patient and Family Seminar was not only smooth, but wildly successful at imparting knowledge, fostering hope, and providing a jolly, good time.

The International Myeloma Foundation (IMF) typically hosts two Patient and Family Seminars per year (these are in addition to Regional Community Workshops…a bit shorter in duration, but still incredibly valuable for patients and families/care partners). I am grateful to all of the organizations that support education for the myeloma community for all myeloma patients and our families/friends/care partners.

This 2-day seminar hosted an outstanding panel of specialists, including:

Dr. Brian Durie, founder of the IMF;
Dr. Robert Vescio (Cedars Sinai);
Donna Catamero, ANP-BC (Mount Sinai);
Yelak Biru, President and CEO of IMF;
Dr. Rafat Abonour (University of Indiana School of Medicine);
Dr. Daryl Tan (Mount Elizabeth Novena Hospital); Dr. Noopur Raje (Massachusetts General Hospital);
Dr. Ajai Chari (University of California, San Francisco)

There is much more than listed here, but I chose 10 specific highlights from this seminar (and will try to provide some context for each) to reduce this article’s length.

I’ve whittled down the topic of treatment to three points that I found most interesting and hopefully useful to myeloma patients.

Number 1: Treatment (Extramedullary Disease-EMD)

For patients experiencing Extramedullary Disease (EMD), often considered to be a more aggressive characteristic of myeloma, and have been through multiple lines of therapy, there was discussion regarding the efficacy and use of bi-specific antibodies for treatment. More specifically (no pun intended), the idea was floated that perhaps using TWO bi-specifics (or bi-specific with TWO targets) might provide benefit to patients with EMD. As a reminder, bi-specifics are designed to bind an immune target (like a T-cell) with a target on a plasma cell (such as CD-38, BCMA, FcRH5, GPRC5D, etc.) to promote cell-mediated toxicity (destruction of the myeloma cell). One of the panelists explained that the efficacy of this scenario is being examined in the RedirectTT-1 trial (which uses teclistamab [BCMA target] and talquetamab [GPRC5D target]) and showing encouraging results. This is hopeful news for anyone experiencing EMD!

My takeaway: If you are experiencing EMD, please work closely with your provider to monitor and treat. If you have not seen a myeloma specialist, this would be a great time to find one (the IMF hotline is an excellent resource to assist with this 1-800-452-CURE [2873]).

Number 2: Treatment (Blenrep)

Regarding Belantamab Mafodotin, also known as Blenrep or belamaf, the first of its kind Antibody Drug Conjugate (ADC)…it was interesting to learn that Blenrep was not pulled from the U.S. market due to safety concerns (beyond what had been reported through trials). Though there are toxicities associated with this therapy, of particular note, keratopathy (damage to the cornea), this is not the reason Blenrep was withdrawn from the U.S. market. The trials did not meet statistical endpoints as defined by trial design and did not show as much benefit as expected. For this reason (not safety), the FDA requested withdrawal from the U.S. market.

My takeaway: I have never used Blenrep but can understand why patients would like to give it a try when other therapies have failed. It may show some benefit with some patients. It’s worth watching the future of Blenrep, if the manufacturer chooses to move forward for (re-)approval.

Number 3: Treatment (Immunotherapies)

In the last year, we’ve seen two CAR-T therapies for myeloma approved by the FDA: Cilta-cel (Carvykti) and ide-cel (Abecma). In August alone, the FDA approved two additional therapies for use in myeloma patients: elranatamab (Elrexfio) and talquetamab (Talvey). The presentations on current and upcoming therapies were impressive. From CAR-T to Antibody Drug Conjugates to CELMods and more, there is a robust pipeline of therapies for myeloma patients.

My takeaway: Be hopeful! The number of trials for new therapies, combinations of therapies, and therapies being employed earlier in treatment is encouraging! (Also, my takeaway – learn how to pronounce Modakafusp before it is approved.)

Number 4: Side Effects

A highly animated discussion regarding side effects from diarrhea to Cytokine Release Syndrome. One of the most discussed side effects was neuropathy. Many specialists discontinue therapy known to cause neuropathy and either switch to another therapy, or if maintenance or stable disease, keep patient off of therapy for a period of time. Interestingly, there was significant patient interaction. Many patients found gabapentin ineffective and requested other options. One patient has utilized Scrambler therapy (he qualified by saying it has helped the pain from neuropathy but not the tingling); one patient places a bar of soap (Ivory, now that she is unable to find the pleasant-smelling Irish Spring) in her sheets; and some patients drink tonic water (with or without gin) to combat neuropathy.

My takeaway: Talk with your provider about mitigation options for side effects. All myeloma drugs have side effects for some people.

Number 5: Coffee Breaks

This really was a highlight. During our lovely coffee breaks, we enjoyed hot coffee, snacks, and excellent conversation with other patients and providers.

My takeaway: Enjoying Evian water (and Evian sparkling water) from GLASS bottles was the Number 1 highlight of my weekend and felt luxurious. Water always tastes better in glass vessels.

Number 6: Technology

Data-driven technologies have the potential to save lives, improve treatment through customized treatment, and more accurately screen for diseases such as myeloma. As the use of Artificial Intelligence, especially ChatGPT, increases, it is important to ensure that good sources are the foundation of the data you receive or request.

My takeaway: For any search regarding myeloma, be sure to use a reputable source. If using ChatGPT, include something along the lines of “Use only reputable sources for myeloma” in your prompts.

Number 7: Testing (Imaging)

The most common question regarding imaging for myeloma: What is the best imaging modality for continuous monitoring of myeloma?

My takeaway: X-rays are out; low-dose CT is in. Several specialists now use low-dose CT scans to screen for and monitor myeloma; however, if you are not able to have a low-dose CT, a PET-CT or MRI (whole-body) are superior to X-ray and quite adequate in monitoring myeloma. Routine imaging is especially important for non-secretory disease and extra-medullary (disease that occurs outside of bone marrow and in soft tissue or organs).

Number 8: Testing (Blood)

Though we have many biomarkers to look for in the blood of patients with myeloma, it is still not up to par with bone marrow testing. Most specialists agree that testing biomarkers in the blood (unless non-secretory) is an excellent way to monitor controlled disease. Some specialists request a bone marrow biopsy annually, while others on this panel follow blood work and request biopsy when indicated by changing values. Exciting news on the mass spectrometry front! Known as “mass-spec testing,” this is a very sensitive test (more sensitive than the SPEP) to measure myeloma proteins in the blood will likely be an option for myeloma patients, once guidelines are established for its use and equipment and training is “rolled out” to other facilities. It is currently in use at Mayo Clinics; this panel is hopeful to see FDA approval and potential wide-spread access in the next year (maybe by mid-2024?).

My takeaway: Ask your oncologist if mass-spec testing is available for you, if you are interested in one more data point regarding your disease. It will not replace bone marrow biopsy soon but will serve as a deeply sensitive test for disease monitoring.

Number 9: My Number One Takeaway

Myeloma is a complex disease with complex and numerous treatment options. Please find a specialist. Even if it’s for one consult.

Number 10: Overall

This seminar was excellent! Excellent presenters, excellent patients, excellent questions, excellent conversation, excellent food, excellent content.

My takeaway: Seminars such as this (and those offered by other organizations like Healthtree, MMRF, and LLS) provide a wonderful opportunity to learn the latest information regarding myeloma AND a warm, welcoming environment to promote networking among patients and families. If you are interested and have a chance to attend, I highly recommend it. I also recommend finding a support group (in-person or online). Networking and friendships from support groups are invaluable.

One final bonus to mention…the IMF really gets myeloma. A table of blankets and pillows was stacked high for anyone needing a little extra comfort/support…myself included. A soft pillow behind by hole-y spine and an ice-cold sparkling water from a glass bottle…I’m already looking forward to the next myeloma vacation. Um…I mean, seminar.

-Lisa

This article is solely based off patient experience and is not intended to be a substitute for professional medical advice. Please consult with your physician or qualified health care provider with any questions you may have regarding your medical condition.

Lisa Hatfield

Lisa was diagnosed with Multiple Myeloma at the age of 49 and serves as PEN’s Multiple Myeloma Empowerment Lead Learn more about Lisa here.

PODCAST: HCP Roundtable: Shared Decision-Making in Myeloproliferative Neoplasm (MPN) Care

August 30, 2023/in Empowered! Podcast, MPN Newly Diagnosed, MPN Podcasts ND, MPN Podcasts TC, MPN Treatments and Clinical Trials, Myeloproliferative Neoplasms, PEN Blog /by Kara Rayburn

What does shared decision-making look like in myeloproliferative neoplasm care? How should fellow MPN specialists explain disease progression to patients and care partners? In this HCP-to-HCP roundtable discussion, experts Dr. Gabriela Hobbs and Natasha Johsnon share best practices for helping your MPN patients play an active role in managing their health.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital and is an assistant professor at Harvard Medical School.

Natasha Johnson, is an Advanced Oncology Nurse Practitioner at Moffitt Cancer Center, where she cares for people living with MPNs with kindness, patience, and humanity. Natasha also speaks at conferences to educate other healthcare professionals about MPN care, research, and treatment.

Transcript:

Nicole Rochester, MD:

Welcome to this Empowering Providers to Empower Patients program. My name is Dr. Nicole Rochester, I’m a pediatrician and the CEO of Your GPS Doc. This program is for providers who desire to empower their patients and families. In this Patient Empowerment Network program, we connect MPN expert voices to discuss enhancing physician-patient communication and shared decision-making in MPN care. Some of the topics we’re going to cover today include how to help your MPN patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden to minimize disease impact on MPN patients’ lives, the importance of advanced practice clinicians on the health care team of MPN patients, clinical trials and the importance of nurses addressing this topic with their patients and families, as well as cultural humility in action.

I’m thrilled to be joined by MPN experts, Dr. Gabriela Hobbs, Director of the Adult Leukemia Services at Massachusetts General Hospital and Assistant Professor of Medicine at Harvard Medical School. Dr. Hobbs leads multiple investigator-initiated clinical trials in MPN as well as non-interventional trials, assessing outcomes for patients with MPN.

I am also thrilled to be joined by Natasha Johnson, an Oncology Nurse Practitioner at Moffitt Cancer Center, where she cares for patients living with MPN. Ms. Johnson also works to educate other healthcare professionals about MPN care, research and treatment. Thank you both for joining me for this important conversation.

Natasha Johnson:

So glad to be here. Thank you.

Gabriela Hobbs, MD:

Thank you so much.

Nicole Rochester, MD:

So I’d like to start by talking about the MPN care team and best practices for shared decision-making. We hear a lot about shared decision-making in healthcare. I would say for some, it’s more of a buzzword than an actual practice. I’m sure that you all agree that it’s incredibly important and really a core for the type of care that we should provide patients and their families, so I’d love to hear from each of you about what does that actually mean? What does shared decision-making look like in myeloproliferative neoplasm care. And we’ll start with you, Dr. Hobbs.

Gabriela Hobbs, MD:

Great question. I think shared decision-making can take many different forms in many of our clinical encounters, and I think one of the luxuries that we have in myeloproliferative neoplasms is that a lot of the decision-making that we need to make doesn’t have to happen immediately, and we also have the luxury of really getting to know our patients over time. And so having that longitudinal relationship, I think really helps in shared decision-making, because I know who that patient is, I know what’s important to them, we get to know their families, and they’ve also gotten to know our care team throughout our relationship. But in general, when we do need to make a decision about treatment, using that foundation, I think is really what’s most important for shared decision-making.

Gabriela Hobbs, MD:

Oftentimes, patients are the drivers of a lot of these decisions and they’ll bring up the questions, but, of course, every patient is a little bit different, and sometimes I need to be more on the side of bringing up the questions, etcetera. So I think knowing where your patient is emotionally, what’s important to them, what are their worries, is really important, so you can have a conversation where you’re not just speaking about the things that you as a provider think is important, but really also listening to where the patient is coming from, and so that you can make sure that you’re appeasing their anxieties and whatever decision you make is consistent with both what you think is medically important, but also with what’s really important for the patients. I think listening is really at the core there.

Nicole Rochester, MD:

Love that you highlighted listening. I think that’s something that we often don’t do enough of in healthcare, so thank you for that, Dr. Hobbs. What about you, Ms. Johnson? What are your thoughts about shared decision making in MPN care?

Natasha Johnson:

Yeah, I agree with everything Dr. Hobbs said. I really believe it’s just…it starts with conversations and taking the time, making sure that you have the patient, you have the caregiver, if they can’t be there in person, sometimes you’re calling them on the phone. If it’s through Zoom visit they’re joining, and the health care provider, and I think that we spend a ton of time educating them to make sure that they really understand this disease, the symptoms that go along with it, the treatments that go along with that, and once we have a good confidence that they understand everything, lead them into discussing what their goals of care are, and then we take all that information together, and we create a treatment plan specific to that patient, really aiming to improve their quality of life and overall survival.

Nicole Rochester, MD:

Awesome, so both of you spoke about the importance of listening and of really understanding the goals of the patients and their care partners, their family members, understanding their values, but we know that in reality, when you’re in that examination room and when you have all the distractions and all the competing priorities and the limited time, which is the thing I hear about most, I think, when I’m talking to colleagues, sometimes it can be difficult to put this into practice. So what can you share with fellow providers, maybe some tips or tricks or strategies that in face of all of those known barriers, how can they help patients take a more active role in managing their MPN? And we’ll start with you this time, Ms. Johnson.

Natasha Johnson:

All right, so one thing I would say is that here’s why I really think there’s a benefit to seeing an MPN expert that is at a national cancer center, academic center. I do think there is some more time allotted to those visits, especially the consults and first appointments for the patient, and we kind of start this with my doctor and other providers of assessing how much does the patient even know to begin with? So that can direct us where to start. And then how deep do they want to go. You know sometimes we have patients that they want to get down to the nitty-gritty and know all the scientific details, and other ones are like, Just lay it out for me easy. So really like assessing that from the beginning and then…so then start educating. Just like I said before, what does the disease look like, the symptoms, the treatment, alleviating symptoms, explaining that this is only cured by transplant. I think that’s really important to discuss right up front, and if they start treatment, usually treatment is indefinite. Of course, it’s changed depending on things, but educating them, so spending that time and then providing resources.

So we do this a lot by…I write a lot of things down for my patients when I see them, I think visuals are really helpful, provide literature, I tell them what websites to visit. A lot of times, they just will Google their doctor, which is great because they can find them and listen to their own lectures, and they really learn a lot. So just guiding them to those resources. I do think it’s important, too, to give them something like the total symptom score form. Just having that visual of, these are what is common, and then they can think about that between visits, but I think all of those things really help to educate them and get them involved.

Nicole Rochester, MD:

Awesome, thank you for that, Ms. Johnson. What about you, Dr. Hobbs? Do you have any additional strategies that really help to empower patients to manage their care?

Gabriela Hobbs, MD:

I think everything that Ms. Johnson said was spot on, and I agree with everything that she said. A few additional things that I would add to that is reminding a patient that they don’t need to remember every single thing we talk about at every single encounter, this is an ongoing conversation and decision-making will happen over time, especially when we’re trying to make more difficult decisions about when or if they have to go to transplant, for example. Sometimes I have a conversation with my patients for years before they actually get a transplant. Other things that I think are helpful strategies is reminding patients that they can be in touch.

Nowadays, we have so many different ways of keeping in touch with our patients, they know how to call our practice nurses in our clinic, how to get in touch with the nurse practitioner that I work with the most, how to get in touch with me through the patient portal. And so, knowing that when that visit finishes, which sometimes does feel short, even if…like Ms. Johnson said, we do have the luxury of time more in academic centers, they’re still…the patients will invariably get out of the room, get in their car and be like, “Oh, I forgot to ask that one question.” And so reminding them that they can get in touch, and then helping them to prepare for their next visits to make the most out of those visits, especially for some of those patients that maybe don’t always necessarily come back to see me.

There are some patients that live far away, and then they maybe see me infrequently, talking to them about the symptom assessment form, like Ms. Johnson said, pointing them to the right direction in terms of literature and reminding them that, especially for those patients that are very symptomatic, for example, keeping track of their symptoms over time, writing down notes about how they felt, what they think made something better, made something worse, how they’re responding to these medications, questions that they may have, and writing all of that down helps them be more empowered patients. They can advocate for themselves in a more organized way when they do go see either me or another clinician. So they come in fully prepared with the information and the questions that they want to get out of that visit.

Nicole Rochester, MD:

Perfect, thank you both. That’s really important. And so this leads nicely into our next topic, both of you have mentioned the importance of tracking symptoms, and so we want to shift and talk about strategies for managing disease burden, and I’d love to hear from each of you about what are your recommendations as you speak to MPN patients and their care partners about symptoms? How should other providers bring up those conversations and what are the best ways to really elucidate the symptoms that patients with MPN are having? So I’ll start with you, Dr. Hobbs.

Gabriela Hobbs, MD:

So this may sound obvious, but the first way of figuring out what symptoms a patient has is by asking, and it’s so interesting, right? There have been studies comparing what symptoms are most important to patients and what symptoms clinicians think the patients have. And guess what, the clinicians don’t actually know which symptoms the patient has, or which symptoms are most important to the patient, and…so anyway, it sounds obvious, but it sometimes isn’t, and I think clinicians are busy and sometimes feel like having a tool to ask those questions is maybe too burdensome. I personally find that the MPN symptom assessment form is a quick form, it’s easy to complete, it can be given to a patient, there’s a piece of paper while they’re waiting for you.

And that also directs the conversation because it really just gives numbers, makes it objective, and then can really start that conversation. And so remembering that we do have this tool, it actually can help cut down time to the visit and make it more focused, and it’s helpful to…empowers the patient and make sure that you really are asking about all of those symptoms, and just making sure that you don’t just assume that a patient has or doesn’t have a symptom, but really saying, “Are there any other symptoms that you’ve noticed?” I’m trying to be really thorough because, honestly, MPN symptoms can manifest in so many different ways for our patients in addition to those 10 symptoms that are asked in the MPN symptom assessment form, and so trying to be thorough about those symptoms, I think, really important.

Nicole Rochester, MD:

And thank you for that and for highlighting sometimes this disconnect between the patients and the clinicians, and also the fact that what’s important to us may not be as important to the patient, and what’s important to the patient may get overlooked by us, and so again, it’s always going back to centering the patient and their experiences. Do you have anything to add, Ms. Johnson, with regard to talking to patients about their symptoms?

Natasha Johnson:

Yes, I had to just laugh in on my head with what Dr. Hobbs said, because it’s so true. With MPNs, numbers are a big deal in this world, and we can see a patient and just look at their numbers and think, “They look good,” and then you see them and they’re like, “I feel horrible.” And it just doesn’t relate. And so I agree with what she said, really going over what are the common symptoms and then thinking about, if they’re on treatment, is this like a medication side effect or is this a disease-related symptom, and then thinking just about comorbidity. So often our patients can have CHF or pulmonary hypertension that’s contributing to their symptoms, and so discussing that and trying to get those things managed.

Nicole Rochester, MD:

Awesome, Dr. Hobbs, did you have something you wanted to add?

Gabriela Hobbs, MD:

Yeah. You know what I was thinking, we also have obviously very different personalities for our patients, of course, in addition for our clinicians, and there are sometimes patients that are very vocal, will come in and share every single symptom, and then we have some stoic patients that never complain, but for those patients, it’s very helpful to turn around and look at the spouse. And so you’ll ask the patient, “Are you tired?” “No, I’m fine.” “Are you whatever?” “No, everything’s okay,” and then the spouse is like, “But remember, you really haven’t been having your dinner, and remember how you were complaining about how your stomach was hurting every time you ate. And you say you’re not itchy, but every night when we’re watching TV, I turn around and I see that you’re scratching.” And so I think that’s also a really important tool to make sure that you make use of the family members, because they really know what’s going on if the patient is not willing to share as much or doesn’t like to complain. [chuckle]

Nicole Rochester, MD:

Oh, Dr. Hobbs, you are reminding me of my former caregiving experience. There were so many occasions where my dad, who did not have MPN by the way, but my dad would…he was that stoic person who would downplay everything, even though the entire car ride to the doctor’s office, he had been complaining, [chuckle] but in front of the doctor he was always fine.

Gabriela Hobbs, MD:

Everything is fine.

Nicole Rochester, MD:

Yeah, I was the care partner that was like, “But what about what you said 5 minutes ago?” So I appreciate you sharing that. We cannot overemphasize the importance of engaging with those incredible care partners. So you all both mentioned there are a lot of symptoms and those symptoms can really have an impact on patients and on their families, their care partners, what specific strategies can other providers use to explain how to minimize the disease impact of MPN? And I’ll start with you, Ms. Johnson.

Natasha Johnson:

Okay, so the number one symptom I hear is fatigue, and it has nothing really to do with hemoglobin, whether it’s normal or not. It’s so many factors that go into the disease, that cause it, and then also considering comorbidity, so I really try to encourage patients to be as active as possible. And we’ve seen with some of our solid tumors and studies that have been done when fatigue’s an issue, activity or physical exercise really seems to be the best way to combat that.

And I really try to encourage them. “Once you stop doing something and you sit down, it’s going to be hard to get back up and do it again. So pace yourself and do what you can.” But that is a big encouragement that I give. And then a second one I would say is diet. There’s been some new interest in looking at the Mediterranean diet, and that it has a possible benefit in reducing symptom burden in patients, so I think that’s something we can continue to look into, but it certainly can’t hurt a patient, especially when you look at cardiovascular risk factor, so just encouraging healthy diet. But I’m also a great advocate for, if they can eat, I want them to enjoy life and eat, too. So I go back and forth a little bit on that depending on the patient. And then just lastly, I really do encourage them to live, you know, live each day, continue living, and I have some patients that play pickleball several times a week and can be really active and enjoy that, and some, it’s just maybe having their neighbors over to play cards once a week, and that’s okay. Or their family, or their church community. Just an encouragement that if they’re living and trying to have healthy habits, I really think it can improve symptom burden.

Nicole Rochester, MD:

Dr. Hobbs, are there any non-pharmacologic strategies that you endorse? And I’m asking you specifically because I think a lot of times, patients and care partners think that physicians aren’t well-versed in non-pharmacologic therapies or that we don’t endorse non-pharmacologic therapy. So I’m curious to know if there are any that you tend to recommend to your patients with MPNs.

Gabriela Hobbs, MD:

I love this question, and I’m glad to have an opportunity to talk about it, and I loved everything that Ms. Johnson said. For many years, I’ve felt in my practice like I’m a primary care doctor, and I’m talking to patients about diet and exercise, [chuckle] especially for the patients that have essential thrombocythemia and polycythemia vera or low-risk myelofibrosis, those diseases really are diseases that I think about as another cardiovascular risk factor. And when we’re talking to patients that have cardiovascular risk factors, like obesity, like hypertension, like hyperlipidemia, diabetes, etcetera, what do we talk to them about? We talk about lifestyle modification. And I think that that fits in beautifully in the care of a patient with an MPN because there’s nothing like getting a diagnosis to take away control from your life. And so giving patients control back by saying, “Actually, you do have control over this disease by changing your lifestyle, by living an active healthy lifestyle and having a well-balanced diet,” I think can actually be very helpful.

One of the things that we don’t talk a lot about in MPNs, ’cause we’re focused on cell signaling and new fancy medications, is just the basics, lifestyle modification. And so I’m a huge fan of that holistic approach. I loved what Ms. Johnson said about, “Don’t let yourself be defined by this disease.” Let’s really find a way of improving your quality of life and maximizing how you live your days. And so I think talking to them about lifestyle modification is something that is really near and dear to my heart. We have a clinical trial now helping patients to really change their lifestyle, get more active and eat more healthily, and I think that those things are actually really, really important. Many of my patients, the first thing they do when they get diagnosed is they want to go and find that magical supplement that’s going to change their natural history of their disease. And although I can’t really say if any of those supplements are going to be helpful or not, I can for sure say that there is no harm, and there’s probably benefit to staying active and also to having a more plant-based, less processed food diet. And I think that that really goes a long way in terms of helping patients to improve their symptoms, feel less tired and feel less anxious, also feel like they have more control over what’s going on with them.

Nicole Rochester, MD:

Wonderful. That’s great to hear. So I wanted to shift again and start to talk about specifically disease progression. And we know that that is, unfortunately, something that is an important element of MPNs. And so as we talk to fellow MPN specialists, what are you all’s recommendations for how they can best explain disease progression to patients? Are there any specific languaging or specific tactics that you all use, and even things that maybe you shouldn’t say as you are sharing information about disease progression? Either one of you, feel free to go first.

Gabriela Hobbs, MD:

So disease progression, I think is a really challenging topic, because on the one hand, I think it’s really important to educate patients. It’s really important for patients to know that that is a possibility, that it is something that can happen. It’s really challenging to have a patient that has lived with this disease for a long time, hardly even knows the name of that disease. Maybe they were seen elsewhere, etcetera, and then all of a sudden, something’s going wrong and they just weren’t prepared for that. But I feel like that really does need to be balanced by the fact that, thankfully, progression happens infrequently. And so you also…going back to what we were saying before, you want to help a patient to be able to live well with these diseases and not be defined by those diseases. And so one of the things that I try to do with patients is, especially during that initial visit, I spend some time explaining to them what the disease is, that it can progress to myelofibrosis, that it can progress to leukemia. But then I also try to reassure them as much as possible that this is an infrequent event, that the reason why we follow patients in-clinic is so that we can start to notice if there’s disease progression, that it usually happens gradually.

And then I try to say, “You have this information. We can’t necessarily change that at this moment, there are maybe some tools that we can use in the future, but try to put that information in a box in your brain, put the key, put it away, try not to think about that every day when you’re outside of here. Definitely okay to open that back up when you’re with me in the room. If you want to get those anxieties out, that’s fine, but let’s really try to make sure that that’s in the back and not at the forefront of our thoughts.” And kind of going back to one of the things we were discussing before about what the patient thinks is most important, what the clinician thinks is most important. If you ask patients what are they most concerned about with their MPN, oftentimes that response is, “Is my disease going to progress?” And so I think acknowledging that and talking about that is important, but then also reminding patients that over time, they need to, hopefully with your help, or maybe they need additional assistance with therapists or social workers, etcetera, let’s find a way to put that away so that it’s not really at the forefront of our thoughts every single day, because that also ends up being not productive.

Nicole Rochester, MD:

I love that approach, of providing the education, but also that balance that you talked about, Dr. Hobbs. I love the idea of putting it away, putting it in a box [chuckle] and locking it, and then opening it back up when you’re in the safety with your healthcare provider. That’s beautiful.

Do you have anything to add to that, Ms. Johnson?

Natasha Johnson:

I completely agree. Your example there of putting it in the box, I’m going to use that in clinic. [laughter] I think it’s a great visual for patients. Because like you said, they’re very scared, and it can control them and take over, and we don’t want the disease to take over their life. Still live. Enjoy.

Nicole Rochester, MD:

Absolutely. So as we start to wrap up, we definitely want to address the role of advanced practice clinicians. We’re honored to have Ms. Johnson here with us, a nurse practitioner. And you mentioned earlier, Dr. Hobbs, that you work very closely with the nurse practitioner, so I’d love for you to share, Dr. Hobbs, the importance, in your professional opinion, of the role of advanced practice clinicians in MPN care. And how can fellow providers best leverage and utilize advanced practice clinicians?

Gabriela Hobbs, MD:

I love that Ms. Johnson is here with us. And I am thinking about Judy, the nurse practitioner that I work with the most. And honestly, without her and without the NPs that work in our clinic, I’m pretty sure that our clinic would fall apart, [chuckle] so I don’t have enough important…I really don’t have enough good things to say about the NPs or the advanced practice providers. They really play a huge role in the care of our patients and in so many different ways. I think sometimes a patient will feel more comfortable sharing some things either with the practice nurses or with the nurse practitioners. Sometimes having just a different perspective from another clinician is so helpful for the patient. Sometimes even if the two of us are communicating similar information, just to hear it slightly differently in another perspective can be really so helpful. Another thing that I think is also really essential about having that team approach is that when I’m away, if I’m on the inpatient service or Judy is away, [chuckle] the patients always know who they’re going to see when they come to the clinic. There’s that great continuity of care. And so I think the fact that there are two of us taking care of a patient as opposed to just me ends up really being very, very helpful for the patients, because they know that when they come to see us, they’re going to see somebody that really knows them longitudinally. And so two is better than one, honestly.

Nicole Rochester, MD:

Two, absolutely better than one. And Ms. Johnson, how would you describe your role? Or maybe is there one example of how you partner with physicians and other members of the team, or maybe something that stands out for you that you’d like to share with the audience?

Natasha Johnson:

Yes. So I work with two main physicians, and one of them is a MPN expert. And so he sees them in their consult initial visit. And then oftentimes, they’re following up with me for those more frequent visits. Our physicians are performing research, they’re teaching, so they’re not in clinic as many days a week as, like I am. And so I do see him more often and really get to know them. But I communicate with my physician almost on a daily basis. And because our relationship has grown, I think that he’s come to trust me to know that I can pick up on…when I’m concerned about disease progression, I know that I can go to him and talk to him, and he’s there. And then he also helps me to make…or he also trusts me to make more minor treatment decisions. But when things are a big deal, I call on him, and he’s there. Oftentimes, if the patient come in and we did not expect this and it’s obvious they’ve progressed, he’ll come into the room with me, and I really believe that makes the patient so much more comfortable. They enjoy seeing me. And we have a good relationship, but it’s different when it’s coming from your physician. And so yeah, we work really close, we communicate regularly. I try to ensure the patients of that. But I do develop very close relationships with patients, because I’m seeing them more routinely and more often.

Nicole Rochester, MD:

That makes perfect sense. It takes a team, right? I mean, we talk about healthcare teams, and that’s really what you all are describing, is teamwork in action. Lastly, I want to wrap up by talking about cultural humility. You all have spoken so eloquently about the importance of developing true, genuine relationships with patients and their care partners and valuing what’s important to them and bringing them into the shared decision-making. And we also know that our patients come with their own unique racial and ethnic and cultural backgrounds, and that sometimes, unfortunately in healthcare, we don’t take those things into consideration. So when we talk about cultural humility, we’re really talking about acknowledging a patient’s full, authentic self, their full, lived experiences, and also acknowledging our own biases that we bring to the table, listening to our patients and having that interest and that curiosity. So I’d love for you to either share an example of when you or a fellow provider were able to show cultural humility in action, or maybe a specific tip for the providers that are watching this program about how to truly incorporate cultural humility into your practice. We’ll start with you, Dr. Hobbs.

Gabriela Hobbs, MD:

I love that question. And I think this is something that is a lifelong process for all of us, and I think it starts with awareness, really just recognizing that you bring your own background and bias into every encounter. And that’s okay. So I think sometimes we want to feel like we’re color blind and culture blind and that we see everything the same. But we have our own biases. And one example for me where that’s always true is, I’m a physician, but I’m also an investigator, and so, obviously, I have a bias towards research. For me, it’s obvious, yeah, of course, I’m wanting to participate in a clinical trial.

And I think you have to be aware of the fact that clinical trials come with all sorts of different opinions from patients, patients don’t like to be guinea pigs, there is mistrust, there’s all sorts of history in [chuckle] this country, especially about clinical trials. And I think coming into those encounters, like I said at the beginning of our conversation, taking into account that you really do know your patient. But sometimes, you don’t know the patient as well. You’re getting to know them, and you need to make a decision. Just listening, being humble, being aware, trying to understand where the patient is coming from, I think sometimes, especially when you’re trying to make a decision quickly and you find that there’s some friction, I think taking some time to say, “Alright, where is that coming from?” And perhaps I’m coming across too strong with this recommendation to do this clinical trial and there’s maybe something that I need to explore, and so just keeping an open mind and trying to just ask questions, “Where are you coming from? What’s important to you? Why are you hesitating? Or is there something that I can explain in a different way?” And really trying to get the whole picture of who that patient is and where they’re coming from. I think that’s probably a really important one.

Another example and I’ll let Ms. Johnson talk.

It comes often in my practice, I speak Spanish and I realize the moment that I switch languages, for example, with a patient, the whole conversation can change. And so in some instances, I have the ability to truly get into that cultural mindset very well because it’s a culture that I’m very familiar, and so you can break those barriers more easily. But then there’s some other situations, or maybe a culture that I’m not as familiar with and I don’t speak the language, or I don’t speak to culture, and you need to keep that in mind and realize, “Okay, here, I don’t know exactly all the same custom,” so I need to take a step back, be humble and just ask a lot of questions, and just acknowledge that, and that’s okay.

Nicole Rochester, MD:

Absolutely. Thank you so much for sharing that. What about you, Ms. Johnson? Any examples or anything you want to reflect on regarding cultural humility.

Natasha Johnson:

Yes. When I think about this, I know that I have to go in prepared and be aware, so like educating myself on how does MPN affect this specific population, and with this culture, what are their values that they hold? And so when I’m going in to see the patient, just like Dr. Hobbs said, listening, being respectful, watching my body language, discussing all treatment options. And just two quick examples I can think about is, one, I’ve had a patient due to religious beliefs can’t take transfusions. And so a lot of times anemia is a big deal in our situation, and so really being creative with the treatments to not really worsen that and be okay with it. And you’d really be surprised how a patient can go around with a hemoglobin of like 5 and live normally when their body gets used to it. But I remember just that patient very well and having to respect that and understand it. And then the second is, I’ve had patients progress and they need to go to transplant or we need to do a bone marrow biopsy to really see where the disease is at right now. And in my mind, I think, “You’re fit. You feel good, like pushing these things,” and I have to step back and look at the patient and listen to the patient. And they’re telling me, “Right now for this, this or this reason, I don’t want to do this. And my priorities are over here.” And just really respecting the patient and still taking 100 percent great care of them through all that.

Nicole Rochester, MD:

Well, this has been a phenomenal conversation. I really appreciate you all’s insight, your expertise. It’s time to wrap up. And you all have said a lot. You’ve talked about the importance of addressing symptoms, you’ve talked about getting to know patients and their care partners, you talked about the idea of centering our patients and their care partners and making sure that we understand their values, we’ve talked about disease progression, we’ve talked about holistic care and cultural humility. Do you have any closing thoughts, any one last thing that you want to leave with the audience as we wrap up this amazing program? We’ll start with you, Ms. Johnson. Any closing thoughts?

Natasha Johnson:

I think of three things, assessing, educating and providing. So assessing your patient by listening, really getting to know them, seeing what they understand, educate them. Not to put fear in them, but to educate them so that they are well-empowered on their disease and how we’re going to move forward. And then providing them with resources regarding treatment with ways to alleviate symptoms so they can further their knowledge as well. So that way overall, we are aiming our goal to improve their quality of life and their overall survival.

Nicole Rochester, MD:

Awesome. Thank you for that. And what about you, Dr. Hobbs? Any closing thoughts?

Gabriela Hobbs, MD:

Hard to say anything better than what Ms. Johnson just said, [laughter] But the only thing I’ll add, which I think is really in the same message, is to remember that there’s a ton of hope, and I think our patients are nervous and they’re worried about this disease, but this field is changing rapidly there’s so many clinical trials in this space and new medications that are likely to be approved. That I think it’s important to remind patients that even though right at this moment, you know, the only curative treatment is a bone marrow transplant for those patients with myelofibrosis, I really do feel very optimistic that there’s going to be a lot of different treatments in the next couple of years that are going to be available for them. And so education is critical, and leaving those patients with hope at the end of each encounter is something that’s also really important.

Nicole Rochester, MD:

Well, I love that we’re ending the program with a message of hope. Thank you so much, Dr. Hobbs, Ms. Johnson, thank you for your time and thank you to all of you for tuning into this Empowering Providers to Empower Patients program. Have an amazing day.

Mastering Instagram for Patient Advocacy: 10 Tips for Success

August 30, 2023/in Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'Connor

Boasting more than two billion active users, Instagram provides an excellent platform for patient advocates to reach a wide audience and inspire change.

Here are 10 tips to help you achieve more on Instagram and make the most of your advocacy efforts.

1. Craft A Compelling Profile

Your Instagram profile is an essential part of establishing your digital identity and expressing your advocacy mission. Visitors and potential followers get their first impression from your profile.
Choose a profile picture that’s easily recognizable and relates to your advocacy. It could be your logo or a photo that represents your cause. Ensure that it’s clear and easily identifiable even in a small thumbnail.
Your username, also known as your handle, should ideally be related to your advocacy and easy to remember. If your exact name is taken, consider adding an underscore or a simple modifier to make it unique while still relevant.
Your bio is a brief space to explain your cause and what you stand for. Use clear and concise language to convey your mission. Incorporate relevant keywords related to your advocacy in your bio. This can help your profile appear in search results when users look for related topics. You might also include a call-to-action or a link to a website or donation page if applicable.
Strategically use emojis to enhance your bio. Emojis can add visual appeal and personality to your profile while conveying emotions and messages succinctly.
Instagram allows you to have one clickable link in your bio. If you have a website, blog, donation page, or a specific landing page for your cause, make sure to include it here. You can also use tools that allow you to create link trees to direct users to multiple destinations. If you’re open to inquiries, consider including a contact email or other relevant contact information in your bio.
Highlight specific accomplishments, milestones, or awards that you or your advocacy have achieved. These could include successful campaigns, collaborations, events, media coverage, or any other noteworthy achievements.
As your advocacy work evolves, make sure to update your bio accordingly. Whether it’s mentioning recent accomplishments, upcoming events, or new partnerships, keeping your bio current ensures that visitors are getting the latest information about your cause.

2. Share Stories

Sharing authentic stories – your own or others – is a powerful way to connect with your audience on Instagram and convey the impact of your advocacy.
Whenever possible, let the individuals whose stories you’re sharing speak in their own words. This adds authenticity and allows your audience to connect directly with the emotions and experiences of those affected.
When sharing others’ stories, ensure that you have obtained proper consent from the individuals involved. Respect their privacy and avoid sharing sensitive or identifying information without permission.
Showcase a diverse range of stories and voices. Different perspectives help your audience better understand the breadth and depth of the impact your advocacy cause has on various individuals and communities.
Create a comprehensive storytelling experience with both visual and written elements. Use a mix of images, videos, and graphics to complement the narrative in your captions. Visual elements can evoke emotions and help your audience better understand the individuals behind the stories.

3. Optimize Visual Content

Optimizing your visual content is essential for grabbing attention and effectively conveying your advocacy message. Visual content is more likely to be shared and remembered, helping you reach a wider audience.
Use clear, high-resolution images that are relevant to your cause.
Use visuals to evoke emotions that resonate with your cause. Happy, inspiring, or even somber imagery can effectively communicate the mood you want to convey.
Overlay impactful quotes, statistics, or brief messages onto images. Quotes can capture the essence of your advocacy and inspire your audience to take action or reflect on their own experiences.
Use simple animations to add movement and engagement to your posts. Animated graphics can be a creative way to share information.
Complex information and statistics can be more digestible when presented in the form of infographics. Create informative graphics that break down facts, figures, and data related to the condition, treatment options, or advocacy goals.
Instagram’s carousel feature allows you to share multiple images or videos in a single post. Use this to showcase various aspects of your advocacy, or present different perspectives.

4. Create a consistent visual identity

Maintaining a consistent color palette and visual style on Instagram can significantly enhance your profile’s overall appeal and recognition. Choose a primary color or a small palette of complementary colors. This helps in creating a cohesive and visually appealing feed.
Create templates for quotes, statistics, or announcements that incorporate your color palette. You can also use filters that align with your brand’s aesthetics.
If you use filters to enhance your images, choose a filter or set of filters that align with your visual identity. Consistently applying these filters gives your profile a polished and harmonious look.
Consider the overall aesthetic of your Instagram feed. Plan how your posts will look when they are viewed together on your profile. Plan your grid layout in advance to ensure a visually pleasing arrangement of posts.
Design custom covers for your story highlights that follow your color palette and style. This adds a polished and consistent look to your profile.

5. Use Hashtags Strategically

Using relevant and strategic hashtags can significantly expand the reach of your advocacy content on Instagram. Use tools like Instagram’s search function, and hashtag generator tools to discover relevant and trending hashtags
Include a mix of popular and niche hashtags in your posts. While popular hashtags can expose your content to a larger audience, niche hashtags help you connect with a more targeted and engaged community.
If your advocacy efforts are local or tied to a specific event or region, use location-based hashtags to reach individuals in that area.
While it’s tempting to use a lot of hashtags, focus on quality over quantity. Include around 5-10 relevant and well-chosen hashtags per post to avoid appearing spammy.
Don’t forget to use hashtags in your Instagram Stories. While they’re not as common here, they can still increase the discoverability of your stories.
Change your hashtags periodically to avoid being seen as repetitive by Instagram’s algorithms. This can also help you reach new audiences.
Regularly review the performance of the hashtags you’re using. See which ones are driving the most engagement and reach. Adjust your hashtag strategy based on this data.

6. Leverage Story Highlights

Instagram Story Highlights can be a great resource for patient advocacy. Create separate Story Highlight categories for different aspects of your advocacy. For example, you could have highlights for patient stories, educational resources, events, news updates, and more.
If you’re hosting events, campaigns, or awareness drives, use a dedicated Highlight to keep your audience informed about the latest updates, schedules, and details.
Highlight the milestones and achievements of your patient advocacy efforts. This can include successful campaigns, partnerships, media coverage, and more.
Keep your followers informed about policy changes, research developments, or advancements in medical treatments by creating a highlight dedicated to advocacy updates.
Compile a highlight with answers to common questions about the medical condition, treatment options, or lifestyle adjustments. This can help provide quick information to your followers.
Choose visually appealing cover images for each Highlight that reflect the content within. This adds a professional touch and makes it easier for users to identify the content they’re looking for.

7. Engage and Interact

Social media is a two-way street. Engage with your audience by responding to comments, answering questions, and acknowledging their support. Meaningful interactions help in building a loyal community around your cause.
If followers ask questions related to your advocacy, provide detailed and accurate answers. This establishes you as a reliable source of information and builds trust.
Whenever someone shows support or provides feedback, acknowledge it with gratitude. This can be as simple as liking their comment or responding with a heartfelt thank you.
Mention and tag individuals or organizations that are relevant to your posts. This can broaden your reach and potentially lead to collaborations.
Pose open-ended questions in your captions or stories to encourage your followers to share their thoughts and experiences. This initiates conversations and invites them to contribute to the dialogue.
Periodically host Instagram Live sessions or Q&A sessions in your Stories. This gives your audience an opportunity to ask questions in real time and engage directly with you.
Create an environment where people feel comfortable sharing their stories and opinions. This safe space encourages more meaningful discussions.

8. Collaborate and Amplify

Collaborations with other advocates, influencers, and organizations can greatly expand your reach. Collaborations can range from joint social media campaigns, co-hosted events, and Instagram takeovers to shared resources and materials.
Look for advocates, influencers, and organizations that align with your advocacy mission. Ensure that the collaboration makes sense in the context of your advocacy. The partnership should enhance the message you’re trying to convey.
Collaborations should be mutually beneficial. Clearly communicate what each party stands to gain and how the partnership will help advance the cause
Initiate conversations with potential collaborators. Engage with their content, leave thoughtful comments, and establish a genuine rapport before proposing a collaboration.

9. Include Calls to Action

A clear and compelling call to action (CTA) is an important aspect of turning your Instagram advocacy efforts into real-world impact. Clearly state what you want your followers to do. Use strong action verbs that motivate them to take immediate steps.
Guide your followers on how to take the action. If it’s signing a petition, provide the link. If it’s attending an event, share the date, time, and location.
Keep your CTA succinct. A short and impactful statement is more likely to grab attention and be remembered.
Tie your CTA to the content of your post. For example, if you’re sharing a personal story, your CTA could be to engage in a discussion or share their own experiences.
Make your CTA relatable and personal. Explain how each follower’s action can make a difference and contribute to the advocacy’s success
Make your CTA visually stand out. Use contrasting colors, bold fonts, or stickers to draw attention to the call to action.
Place your CTA at the end of your caption or post, making it the last thing your followers read. This increases the likelihood of them taking action.
Experiment with different types of CTAs to see which ones resonate the most with your audience. You can rotate between calls to sign up, donate, share, attend, and engage.

10. Measure and Adapt

Measuring and adapting based on data is crucial for refining your Instagram advocacy strategy. If you haven’t already, switch to a business or creator account on Instagram. This provides you with access to Instagram Insights, a powerful tool for analyzing your profile’s performance.
Review which posts are getting the most likes, comments, and shares. Identify patterns in the type of content that resonates with your audience.
Look at metrics like likes, comments, shares, and saves. These metrics reflect how your audience is interacting with your content and can guide your content creation strategy.
Analyze your Stories’ engagement metrics such as taps forward, taps back, and exits. Stories offer real-time engagement and valuable insights.
Identify the times when your audience is most active. Schedule your posts during these peak periods to maximize visibility and engagement.
If you have a website link in your bio, track the clicks to see how effective it is in driving traffic to your external resources.
Keep an eye on your follower growth rate. If certain types of content or campaigns lead to spikes in follower count, consider replicating those strategies.
Insights aren’t static. Regularly review your performance metrics and make adjustments based on the changing dynamics of your audience and the platform.

Mastering the art of Instagram for patient advocacy requires a balance of compelling storytelling, strategic content creation, and meaningful engagement. By creating a strong online presence, patient advocates can amplify their messages, raise awareness, and drive change in healthcare. The key to success is consistency. With dedication and a well-executed strategy, Instagram can become a powerful tool in your patient advocacy arsenal.

Marie Ennis-O'Connor

hcsmmonitor.com/

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

August 29, 2023/in Patient Empowerment, PEN Blog /by Miles Oliver

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.

Miles Oliver

Miles is an independent writer with a background in business and passion for tech, health, news, and simply helping people live happy and fulfilled lives. He has lived and traveled all over the United States and continues to expand his awareness and experiences. When he is not writing, he is most likely mountain biking or kicking back with a cup of tea.

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

August 23, 2023/in Empowered! Podcast, Endometrial Cancer, Endometrial Cancer Newly Diagnosed, Endometrial Cancer Podcast ND, Endometrial Cancer Podcast TC, Endometrial Cancer Treatment and Clinical Trials, Gynecological Cancers, PEN Blog /by Kara Rayburn

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.

PEN Blog Archives

Transcript:

Nicole’s Story

Neuroendocrine Cancer Organizations

Transcript:

Wellbeing

Transcript:

Transcript:

Separating Fact from Fiction During Breast Cancer Awareness Month

Myth 1: Only Older Women Get Breast Cancer

Myth 2: You Can’t Get Breast Cancer if It Doesn’t Run in Your Family

Myth 3: Breast Cancer is Always Painful

Myth 4: If You Have a Lump in Your Breast, It’s Always Cancer

Myth 5: Only Women Get Breast Cancer

Myth 6: Bras with Underwire Cause Breast Cancer

Myth 7: Deodorants Can Cause Breast Cancer

Myth 8: Breast Cancer Is A Single Disease

Myth 9: Mammograms Cause Breast Cancer

Myth 10: Stress Causes Cancer

Why You Should Plan Your Social Media Content In Advance

Creates Consistency:

Algorithm Visibility:

Proactive Advocacy:

Enhances Collaboration:

Alleviates Burnout:

1. Create a Content Calendar

Choose a Calendar Format

Set a Time Frame

Identify Key Dates and Events

Plan Content Distribution

Maintain Flexibility

2. Allocate A Mix of Content Types

3. Plan Posting Frequency

4. Schedule Posts

5. Monitor and Adapt

Engagement Metrics:

Reach and Impressions:

Click-Through Rates (CTR):

Introduction

Results of the Current Study

Comparison with Ivosidenib

Further reading

Olutasidenib:

Ivosidenib:

August 2023

Los Angeles, California

Number 1: Treatment (Extramedullary Disease-EMD)

Number 2: Treatment (Blenrep)

Number 3: Treatment (Immunotherapies)

Number 4: Side Effects

Number 5: Coffee Breaks

Number 6: Technology

Number 7: Testing (Imaging)

Number 8: Testing (Blood)

Number 9: My Number One Takeaway

Number 10: Overall

Transcript:

1. Craft A Compelling Profile

2. Share Stories

3. Optimize Visual Content

4. Create a consistent visual identity

5. Use Hashtags Strategically

6. Leverage Story Highlights

7. Engage and Interact

8. Collaborate and Amplify

9. Include Calls to Action

10. Measure and Adapt

Recognizing the Power of Social Media

Building Communities Through Social Media

Taking Things Offline

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