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

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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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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:

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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.

The Patient Advocate’s Guide to Social Media Content Planning

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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.

Olutasidenib for Relapsed or Refractory Acute Myeloid Leukemia with IDH1 Mutation

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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. 

Further reading 

Olutasidenib: 

Ivosidenib: 

IMF Patient and Family Seminar Takeaways

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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. 

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

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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.

See More from Empowering MPN Providers to Empower Patients (EPEP)

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

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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.

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

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

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

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

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

Recognizing the Power of Social Media 

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

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

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

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

Building Communities Through Social Media 

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

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

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

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

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

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

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

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

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

Taking Things Offline 

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

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

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

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

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

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

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

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

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

See More from Evolve Endometrial Cancer

Transcript:

Katherine:

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

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

Dr. Ko:

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

Katherine:

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

Dr. Ko:

Thank you. 

Katherine:

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

Dr. Ko:

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

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

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

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

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

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

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

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

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

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

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

Katherine:

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

Dr. Ko:

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

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

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

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

Katherine:

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

Dr. Ko:

Sure.

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

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

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

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

Katherine:

And ultimately help others as well, in the future.  

Dr. Ko:

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

Katherine:

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

Dr. Ko:

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

Katherine:

How is endometrial cancer staged? 

Dr. Ko:

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

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

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

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

Katherine:

Can you give me an example? 

Dr. Ko:

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

Katherine:

But stage III would be the highest or most severe? 

Dr. Ko:

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

Katherine:

And that would be considered advanced endometrial cancer? 

Dr. Ko:

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

Katherine:

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

Dr. Ko:

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

Katherine:

Are hormonal therapies used as well, and targeted therapies? 

Dr. Ko:

Yes. 

Katherine:

I know they are in other cancers. 

Dr. Ko:

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

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

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

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

Katherine:

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

Dr. Ko:

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

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

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

Katherine:

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

Dr. Ko:

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

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

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

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

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

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

Katherine:

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

Dr. Ko:

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

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

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

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

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

Katherine:

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

Dr. Ko:

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

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

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

Katherine:

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

Dr. Ko:

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

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

Katherine:

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

Dr. Ko:

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

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

Katherine:

Why is that? 

Dr. Ko:

It’s a great question. 

Katherine:

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

Dr. Ko:

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

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

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

Katherine:

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

Dr. Ko:

Thank you. It was my pleasure. 

Katherine:

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

Becoming an Empowered and [ACT]IVATED DLBCL Patient

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

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

Diffuse Large B-Cell Lymphoma Disparities

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

Dr. Shah's [ACT]IVATION Tip

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

Solutions for Improved DLBCL Care 

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

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

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

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

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

[ACT]IVATED DLBCL Program Resources

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

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

[ACT]IVATION Tip:

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

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

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

See More from MPN TelemEDucation

Transcript:

Lisa Hatfield: 

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

Dr. Krisstina Gowin: 

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

Lisa Hatfield: 

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

Dr. AnaMaria Lopez: 

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

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

Dr. AnaMaria Lopez:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

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

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

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

That’s great.

Dr. Krisstina Gowin:

You’re accountable for your goals.

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

Absolutely.

Lisa Hatfield:

Okay. That’s great. Yeah.

Dr. AnaMaria Lopez:

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

Absolutely. Always.

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

Lisa Hatfield:

Oh, Yes.

Dr. AnaMaria Lopez:

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

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

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

Yeah. These are tools.

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

Lisa Hatfield:

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

Becoming an Empowered and [ACT]IVATED Lung Cancer Patient

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

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

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

Lung Cancer Stigma and Disparities

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

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

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

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

About Dr. Lecia Sequist

Solutions for Better Lung Cancer Care

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

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

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

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

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

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

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

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

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

[ACT]IVATION Tip: 

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

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

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

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

See More From INSIST! Prostate Cancer

Transcript:

Katherine:

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

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

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

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

Dr. Paller:

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

Katherine:

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

Dr. Paller:

Thank you for having me.

Katherine:

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

Dr. Paller:

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

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

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

Katherine:

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

Dr. Paller:

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

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

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

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

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

Katherine:

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

Dr. Paller:

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

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

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

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

Katherine:

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

Dr. Paller:

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

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

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

Katherine:

How can patients stay up to date on evolving research?

Dr. Paller:

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

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

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

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

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

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

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

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

Katherine:

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

Dr. Paller:     

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

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

Katherine:                  

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

Dr. Paller:                   

Great question.

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

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

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

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

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

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

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

Katherine:                  

And the treatment options, by the sounds of it.

Dr. Paller:                   

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

Katherine:                  

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

Dr. Paller:            

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

Katherine:                  

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

Dr. Paller:                   

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

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

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

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

Katherine:                  

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

Dr. Paller:                   

Thank you so much, Katherine.

Katherine:                  

And thank you to all of our collaborators.

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

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

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

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

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

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

1. Become a trustworthy source of information

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

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

2. Be mindful of privacy

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

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

3. Engage in respectful discussions and debates

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

4. Cultivate digital empathy

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

5. Report harassment and hate speech

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

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

6. Practice digital well-being

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

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

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

7. Protect against cognitive overload

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

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

8. Guard against emotional contagion

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

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

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

9. Nurture meaningful connections

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

10. Foster inclusivity

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

Conclusion

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

Managing Body Image Concerns During and After Cancer Treatments

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

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

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

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

Feel Your Feelings

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

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

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

Engage in Daily Self-Care

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

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

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

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

Eat Well and Exercise

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

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

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

Start Going to Therapy

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

You can expect the following in your first therapy session:

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

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

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

Develop a Support System

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

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

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

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