PEN Blog Archives

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

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

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

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

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

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

1. Rebuild Your Physical Strength

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

2. Acknowledge Your Feelings

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

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

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

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

3. Embrace Self-Care

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

4. Take care of your diet

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

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

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

5. Redefine Identity and Self-Image

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

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

6. Reassess Priorities and Life Goals

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

7. Celebrating Your Milestones

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

Conclusion

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

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

PODCAST: Accessing Personalized Myeloma Treatment | What Patients Should Know

 

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

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

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

See More from INSIST! Myeloma

Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss how to access personalized care for your myeloma and why it’s vital to insist on essential testing.  Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guests for today. I’ll start with Dr. Ashley Rosko. Dr. Rosko, welcome. Would you please introduce yourself? 

Dr. Rosko:

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

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

Katherine:

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

Dr. Cottini:

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

Katherine:

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

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

Dr. Rosko:

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

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

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

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

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

Katherine:

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

Dr. Cottini:

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

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

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

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

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

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

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

Katherine:

What is cytogenetics? 

Dr. Cottini:

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

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

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

Katherine:

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

Dr. Rosko:

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

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

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

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

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

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

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

Katherine:

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

Dr. Cottini:

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

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

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

Katherine:

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

Dr. Rosko:

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

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

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

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

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

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

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

Katherine:

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

Dr. Cottini:

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

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

Katherine:

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

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

Dr. Rosko:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Katherine:

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

Dr. Cottini:

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

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

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

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

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

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

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

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

Katherine:

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

Dr. Cottini:

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

Katherine:

Dr. Rosko? 

Dr. Rosko:

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

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

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

Katherine:

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

 

June 2023 Digital Health Round Up

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

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

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

Knocking Out Gene Triggers Powerful Anti-Cancer Response

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

Intratumoral Bacteria as an Injectable Ant-Cancer Treatment

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

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

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

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

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

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

RMC [ACT]IVATED Tip

Renal Medullary Carcinoma Disparities

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

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

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

RMC [ACT]IVATED Tip 2

Solutions for Improved Renal Medullary Carcinoma Care

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

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

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

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

RMC [ACT]IVATED Tip 3

[ACT]IVATED Renal Medullary Carcinoma Program Resources

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

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

[ACT]IVATION Tip:

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

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



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

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

See More from the Empowered! Podcast

Transcript:

Katherine:

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

Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, joining me today is Dr. Ramaswamy. Welcome. It’s so good to have you here. Would you mind introducing yourself?  

Dr. Ramaswamy:

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

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

Katherine:

Excellent. 

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

Dr. Ramaswamy:

Anytime. 

Katherine:

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

Dr. Ramaswamy:

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

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

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

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

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

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

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

Katherine: 

What biomarker testing is standard following a breast cancer diagnosis? 

Dr. Ramaswamy:

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

Katherine: 

Dr. Ramasamy, how is breast cancer staged? 

Dr. Ramaswamy:

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

Katherine:

What questions should patients ask about their treatment options?  

Dr. Ramaswamy:

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

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

Katherine: 

Yeah. That’s, it’s positive. 

Dr. Ramaswamy:

Yes. 

Katherine: 

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

Dr. Ramaswamy:

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

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

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

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

Katherine: 

How can some of these side effects be managed? 

Dr. Ramaswamy:

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

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

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

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

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

Katherine: 

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

Dr. Ramaswamy:

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

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

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

Katherine: 

Yeah. 

Dr. Ramaswamy:

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

Katherine: 

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

Dr. Ramaswamy:

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

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

Katherine: 

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

Dr. Ramaswamy:

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

Katherine: 

No. 

Dr. Ramaswamy:

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

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

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

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

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

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

Katherine: 

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

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

Dr. Ramaswamy:

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

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

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

Katherine: 

Yeah.  

Dr. Ramaswamy:

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

Katherine: 

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

Dr. Ramaswamy:

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

Katherine: 

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

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

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

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

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

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

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

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

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

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



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

See More from the Empowered! Podcast

Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is a continuation of our Thrive series. And we’re going to discuss how to manage life with an MPN.  Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.  

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

Dr. Raajit Rampal:

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

Katherine Banwell:

Thank you so much for being with us today. 

Dr. Raajit Rampal:

My pleasure.  

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

What are treatment goals and how are they determined?  

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

How often should lab tests of blood work be done? 

Dr. Raajit Rampal:

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

So, it depends on the individual. 

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

What should patients be asking once they have the results? 

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

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

Katherine Banwell:

There’s also transplants available, right? 

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

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

Katherine Banwell:

Finally, how is essential thrombocythemia treated? 

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

Well, is there any way to prevent progression?  

Dr. Raajit Rampal:

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

Katherine Banwell:

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

And what is the best treatment for it? 

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

 Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

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

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

Katherine Banwell: 

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

What should patients be asking once they have the results? 

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

What about cost? 

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

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

Katherine Banwell:

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

Dr. Raajit Rampal:

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

Katherine Banwell:

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

Dr. Raajit Rampal:

My pleasure.  

Katherine Banwell:

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

Changes to Medicare Part D in 2024 and 2025

The Inflation Reduction Act of 2022 put into play some major changes to Medicare Part D enrollees. The purpose of the changes was to reduce out-of-pocket costs for prescription drugs.

I always recommend Medicare enrollees review their current plan and current and anticipated medications to make sure they have the best plan for optimal coverage. Always remember that there is a separate co-pay, deductible, premium, and max out-of-pocket from your Medicare health insurance plan. 

Let’s review these upcoming changes to the current plan. In 2023, there are 4 distinct Phases to Medicare Part D, where the cost-sharing drug costs paid by Part D enrollees, Part D plans, drug manufacturers, and Medicare varies. 

Comparisons 2023-2025: 

  1. Deductible phase

    Enrollees pay 100% of their drug costs, up to $505. Note: not all Part D plans charge a deductible, however in the stand-alone Part D plans, many enrolled are responsible for a standard deductible.

  2. Initial Coverage phase

    Part D enrollees pay 25% of total drug costs and Part D plans pay 75%, up to total costs of $4660. Most Part D plans charge a mix of copayments and coinsurance rather than a standard 25% coinsurance rate.

    2025 changes
    – Drug manufacturers will be required to provide a 10% discount on brand-name drugs. This will replace the 70% price discount in the coverage gap phase under the current benefit design. Part D plans will pay 60% of brand-name drug costs.

  3. Coverage Gap phase

    Part D enrollees pay 25% of the total drug costs for both brand-name and generic drugs. Part D plans pay the remainder 75% of generic drug costs and 5% of brand costs.  Drug manufacturers provide 70% price discounts on brands. Note there is no manufacturer price discount on any generic drug.

    2025 changes include
    : A new $2,000 out-of-pocket cap. (This cap does not apply to out-of-pocket spending on Part B drugs), elimination of the coverage gap phase, a higher share of drug costs paid by Part D plans in the catastrophic phase, along with a new manufacturer price discount and reduced liability for Medicare in this phase, and changes to plan costs and the manufacturer price discount in the initial coverage phase.

  4. Catastrophic phase

    Medicare pays 80% of total drug cost, part D plans pay 15% and Part D enrollees pay 5%. Part D enrollees qualify for catastrophic coverage when the amount that they pay out of pocket plus the value of the manufacturer discount on the price of brand-name drugs in the coverage gap phase exceeds a certain threshold amount set at $7,400,  of which enrollees pay $3100 out of pocket before reaching catastrophic phase. This is based on the cost of brand-name drugs only.

2024 Changes – 5% coinsurance requirement for Part D enrollees will be eliminated and Part D plan will pay 20% of total drug costs instead of 15%. For Part D Enrollees without low-income subsidies, once drug spending is high enough to qualify for catastrophic coverage, they will no longer be required to pay 5% of their drug costs, meaning out-of-pocket is capped. 

2024 Changes – the catastrophic threshold is capped at $8,000. This includes what Part D enrollees spend out of pocket plus the value of the manufacturer price discount on brands in the coverage gap phase. Meaning, in 2024 Part D enrollees who take only brand-named drugs will have spent about $3300.00 out of pocket and then will have no more additional cost for these drugs.

2025 Changes – Medicare’s share of total cost in the catastrophic phase (reinsurance, ) will decrease from 80% to 20% for brand-name drugs and from 80% to 40% for generics. Medicare Part D plans’ share of the costs will increase from 15% to 60% for both brands and generics above the cap, and drug manufacturers will be required to provide a 20% price discount on brand-name drugs. 

This is very important for those who are taking high-cost cancer drugs such as Revlimid, Pomalyst, Imbruvia, Jakafi, and Ibrance. These drugs have the highest per capita Part D expenditures in 2021. The annual out-of-pocket costs for these cancer drugs range from $11,000 to almost $15,000, and in the catastrophic phase, out-of-pocket costs per drug in 2021 ranged from around $8,000 to nearly $12,000. So eliminating the 5% coinsurance requirement in the catastrophic phase in 2024 means that Part D enrollees without low-income subsidies who use these and/or other high-cost cancer drugs covered by Part D will realize thousands of dollars in savings. You can see the savings especially if you use more than one of these medications.

Additional Changes to Medicare Part D

2024 Changes

  • People with Medicare who have incomes up to 150% of federal poverty level and resources at or below the limits for partial low-income subsidy benefits will be eligible for full benefits under Part D Low-Income Subsidy (LIS) Program. The partial LIS benefit currently in place for individuals with incomes between 135% and 150% of Federal Poverty Levels.will be eliminated.
  • The calculation of the base benficiary premium will be adjusted, as needed, to limit the increases in the base premium to no more than 6% from prior year values. Note: Premiums for individual Part D premiums and annual plan-level premium increases will continue to vary.

2025 Changes

  • Part D enrollees will have the option of spreading out their out of pocket costs over the year rather than face high out of pocket costs in any given month. 

So how do you decide how to choose Medicare Drug coverage?

Take an inventory of your needs, now and in the near future. Look at your priorities. Here are a few things to consider when planning:

  1. What are the drugs you are taking or anticipate taking? Make sure the drug plan you are considering are on that plans formulary. Then, compare the costs.
  2. If you need protection forn high prescription costs, as is very common for a lot of cancer drugs, look for drug plans offering coverage in the coverage gap, if applicable, and check with these plans to make sure they cover your drugs in the gap.
  3. If you need to make sure your drug costs share is balanced throughout the year, refer to drug plans with no or low deductibles, or with additional coverage in the coverage gap.
  4. If you take a lot of generic medications, look at a Medicare drug plan with tiers that charge you nothing or low copayments for generics.
  5. If you don’t have many drug cost now but want to make sure you have coverage “just in case” to avoid future penalties and for peace of mind, consider Medicare drug plans with low monthly premiums. If you need prescription drugs in the future, all plans must cover most drugs used by Medicare enrollees.
  6. If you prefer the extra benefits and lower cost available by getting your healthcare and prescription drug coverage from one plan, and, you don’t mind possible restrictions on the doctors, hospitals and other heathcare providers you can use, then consider a Medicare Advantage Plan which has this all bundled into one. Again if you have multiple specialist and complex healthcare needs consider your options carefully.

Again, I encourage everyone to review their options and make the beat choice for you and your family. And most importantly, review yearly.  Don’t just look at the cost of premiums when making a decision. When you have expensive medications especially for cancer, it’s important that you stay on treatment. Knowing your options ahead of time and planing for associated cost will help prevent you from beoming financially stressed. Talk with your healthcare provider’s. Ask about generic medication options. Work with the social workers or patient advocates at your healthcare center to search out co-pay, deductible, premium assistance programs available from pharma as well as non-profits that can help you meet your financial obligations for out of pocket expenses.


Resources:

Changes to Medicare Part D in 2024 and 2025 Under the Inflation Reduction Act and How Enrollees Will Benefit

Medicare.gov

Becoming Empowered and [ACT]IVATED After A Non-Melanoma Skin Cancer Diagnosis

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the non-melanoma skin cancer community. Skin cancer treatment options are ever-increasing with new testing, treatments, and research information, and it’s important for patients and families to educate themselves with health literacy tools and resources on the latest information in skin cancer care. With this goal in mind, PEN initiated the [ACT]IVATED Non-Melanoma Skin Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in skin cancer care.

The [ACT]IVATED Non-Melanoma Skin Cancer (NMSC) program is geared to newly diagnosed skin cancer patients, yet can be beneficial for patients at any stage of disease and for patient advocates. [ACT]IVATED helps patients and care partners stay updated on the latest options for their skin cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

Skin Cancer Disparities

There are important skin cancer risk factors and vital differences to know about how some skin cancers can look and where they occur in different populations. Mary Leer, a cancer survivor and empowerment lead at PEN interviewed Dr. Silvina Pugliese as part of the [ACT]IVATED Non-Melanoma Skin Cancer program. Dr. Pugliese discussed some skin cancer risks including occupational risks of those who work outdoors, at high altitudes like pilots and Air Force personnel or veterans, and older white men. Additional risk factors include those who have undergone solid organ transplant, arsenic in well water, smoking, chronic wounds, wounds or scars, genetic mutations, exposure to radiation, leukemia patients, living near the equator, freckles, and naturally blonde or red hair. Dr. Pugliese further shared about current or previous occupational risks, “…if you are within one of these occupational categories where you work primarily outdoors or have worked primarily outdoors, have had sunburns while working outdoors, have worked at high altitude, it’s important to have your skin checked, to make sure that you have not developed any spots that could be worrisome for non-melanoma skin cancer.”

The appearance of basal cell skin cancer and squamous cell skin cancer may often look different or occur in different locations in skin of color patients in comparison to white patients. It’s important for both patients and patient advocates to raise awareness about the key differences. Dr. Pugliese explained how more studies on squamous cell cancers have shown how locations may vary for non-white patients. “…We know that in skin of color patients we might see more of these skin cancers on the lower legs or on the feet or in genital or perianal skin. And that’s important, because we as dermatologists need to make sure that we’re examining all of these areas when we’re doing a full body skin exam. In addition, about 20 to 40 percent of all squamous cell cancers diagnosed in Black patients are occurring within scars or areas of chronic inflammation such as wounds.” It’s also important to note that squamous cell cancers are often advanced when they’re diagnosed, and so larger sections of skin are more often removed, which may have more long-term impact on the patient.

Basal cell cancer is the most common type of skin cancer and has a different appearance in skin of color patients. Dr. Pugliese explained the key differences in appearance and a rare tumor called Dermatofibrosarcoma protuberans (DFSP). “So it might have more of a purple or blue appearance than the classic pink shiny bump that we talk about. And then finally there is a rare tumor that we call DFSP that is actually more likely to occur in Black patients and can often have a scar-like appearance. This is a rare soft tissue tumor that can involve the deeper skin sometimes into the fat and even muscle.”

Dr. Pugliese [ACT]IVATION Tip

Solutions for Improved Skin Cancer Care

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

Clinical trial participation by diverse populations is especially important for the more rare types of skin cancer. Dr. Silvina Pugliese shared about the value that can be derived from research, “…we think about less common skin cancers like Merkel cell carcinoma or DFSP. And when we think about how uncommon these skin cancers can be in skin of color, we realize we’re really drawing from a very small pool of patients. So my point here is that you can make a true impact by enrolling in a clinical trial, especially as we’re looking at what are some of the best treatment options for these more advanced skin cancers or metastatic skin cancers? Because we do need the right patients to be enrolled in order to study these research questions.”

[ACT]IVATED Non-Melanoma Skin Cancer Program Resources

The [ACT]IVATED Non-Melanoma Skin 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 skin cancer disparities and variation in location and appearance of skin cancer, 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 skin 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 non-melanoma skin cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.

PODCAST: Expert Advice for Navigating AML Treatment and Care Decisions



 

AML expert Dr. Ann-Kathrin Eisfeld reviews the importance of essential testing and explains how the results may impact the care and treatment of patients with AML. Dr. Eisfeld also shares updates on new and developing AML research.

Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.

See More from the Empowered! Podcast

Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. Today’s program is a part of our Insist series. We’ll discuss how to access the most personalized AML therapy for your individual disease and why it’s vital to insist on key testing. Before we meet our guest, let’s review a few important details 

The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. 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. Ann-Kathrin Eisfeld. Dr. Eisfeld, welcome. Would you please introduce yourself?  

Dr. Eisfeld:

Hi, thank you so much, Kathrine. Yes. My name is Ann-Kathrin Eisfeld. I’m currently an assistant professor and hematologist at the Ohio State University. 

And I’m also serving as the director of the Clara D. Bloomfield Center for leukemia outcomes research at the James. 

Katherine Banwell:

Thank you so much for joining us today and taking the time to discuss this important issue. To set the stage for today’s discussion, Let’s start with this important question. How would you define personalized medicine as it relates to AML care? 

Dr. Eisfeld:

I define personalized medicine in AML as have a complete testing at time of diagnosis that consists of not only the morphology of the bone marrow, but we call immunophenotyping, which is looking at the surface markers, but also full review of all the chromosomes, which is called cytogenetics. And with those metaphase testing, I’m looking really at all of them and at the hot spots, which is done by a technique called FISH 

And then most importantly, for personalized testing, it also needs to consist of testing the most common, recurrent gene mutations. Changes in the tumor DNA that we know are contributing to the disease biology and also to the response of the leukemia to different genes.   

Katherine Banwell:

Thank you for that, Dr. Eisfield. That helps guide us as we begin our conversation.  

I imagine that personalizing therapy for a patient requires a number of tests and then thorough review of the test results. Could you provide an overview of the tests necessary to help understand a patient’s specific AML? 

Dr. Eisfeld:

Yes. Absolutely. There are multiple things that go in. And let me –even before we go into the tests – point out one thing. Because as we talk about individualized care – and it is also important to keep in mind that it will be also dependent on the age and of the performance status of the patient. 

Because we know that all the changes that are going to be reviewed might be more or less severe depending on really the age of the patient we are discussing. The most critical aspect for every AML patient is a bone marrow biopsy and a bone marrow aspirate on which the testing that I have been referring to are performed.  

One, it gives us information about how the – after review of the hematologist, it gives us information about the specific kind of the leukemic cell.  

And very importantly – and this is a very more recent development that we know about that’s important. It also tells us whether the acute leukemia is really happening as an acute leukemia or whether the patient without knowing it before might have had a precursor issue. And this is something that by now really in just about half a year we can use in addition to direct treatment.  

So, it seems like an ancient thing that we think that the microscopic review is important. But that is one part of it.  

The second part – and this is, again, all based on the bone marrow biopsy. The inspection of chromosomes, as I mentioned, may be called cytogenetics. This test takes longer. It sometimes takes up to two weeks to result. And similar, looking at the tumor DNAs and mutations that is done either if you’re at a large institution such as Ohio State or other cancer centers. It’s done in house. Whereas at smaller institutions, it would be done by a sent-out testing that has these recommended gene mutation testings done. And some of those result just within a couple of days.   

And these are – but we can talk. And I know we are going to talk a little bit more about it later, but we now have targeted therapies available. This is a really super exciting topic we couldn’t have talked about just even five years ago. And those mutations and those DNA changes come back usually within three to five days.  

So, that we are able to decide on treatment. 

Katherine Banwell:

How can someone ensure they’re getting an accurate diagnosis? 

Dr. Eisfeld:

That’s a very good question. I think the most important part is to go to somebody who has seen acute leukemias as a living. It is a very rare cancer as you know. And if you are seen even by a general oncologist who might be a fantastic oncologist, he might just see one or two cases per year. And thus, might not be up-to-date on the newest recommendations. So, I can just advise anybody – even if he lives further away and trusts his physician a lot – to – for the diagnosis and for treatment planning, come to a comprehensive cancer center, at least for a therapy planning. Because what is now possible is many of these treatments is that we can just give advice.   

And then you can still receive treatment in some cases really back at home. But be sure the testing was done correctly. And really give you every option to take into consideration what the best treatment would be for you, what the best treatment is for the patient. Having this trip – which can be hours of a drive. And I appreciate this. Having that done once would be, I think, the best thing to do.  

Katherine Banwell:

Many cancer types are typically staged. But that’s not the case with AML. AML is often considered low risk or high risk. Is that right? 

Dr. Eisfeld:

Yes. And we – I think that’s very well how you put it. And we can even – they even add an intermediate risk by now to it. And I love this question because that’s what I like to study or what I’m studying here. The one important thing to keep in mind – and this is something even many hematologists don’t think about is that the risk assignment of acute leukemia, of AML if you think about it as low, or high, or intermediate risk is risk – or is actually better said not risk, but chances to respond to conventional chemotherapy. So, the way all this was defined is that if you have, for example, a multitude of chromosomal abnormalities – as you call it complex karyotypes – it would be considered adverse. This means your chances of responding to the standard of care in terms of chemotherapy are very, very low.   

And similarly, if you have other changes such as a NPM1 mutation, your chances are considered very high. And but – so, the risk assignment with the increase of treatments now changes. We still also – and when I look at that, I think about it in the same way. But in my mind, if I’m talking to a patient, I’m trying to make sure to say, this is considered an intermediate or adverse risk.  

But this means that I would not, at the first place, consider you for a standard chemotherapy but rather advise you to participate in a clinical trial or have an alternative care. The second implication especially for younger patients would be to – if you’re intermediate or adverse risk, that you would routinely be considered for bone marrow transplant or stem cell transplant.       

Katherine Banwell:

Okay. So, what does it mean to be high risk then?  

Dr. Eisfeld:

It means that your likelihood of going into remission – the standard of care is very low. This means – I mean, in very practical numbers, it might be as low as 20 or 30 percent. This meaning getting the leukemia into remission, there are very important differences. The first step at every time in the same high risk means if the patient receives the treatment, how high are the chances that we can get rid of the leukemia? 

The second question is how high are the chances once it’s gone that it stays away? Or how high are the chances of relapse? In adverse risk most cases, it’s both – a combination of those. The chances of going into complete remission are lower and the chances of it coming back are higher. So, we have to be very aggressive. This means that we have to consider alternative treatment options. And even if we are then lucky and achieve remission, that we might have to move to more intensive additional treatments such as a bone marrow transplant.    

Katherine Banwell:

Dr. Eisfeld, the landscape of AML has changed significantly in recent years. How have advances in testing improved patient care?  

Dr. Eisfeld:

It is a different world, Katherine, honestly. I mean, I started practicing in hematology in taking care of AML patients back in Germany actually in the year 2007. 

Back then, there was no other testing that was available. All we were guiding and all that we had available was morphology and cytogenetics. And very often, it was very inaccurate. And we also only had two treatment kinds available. One was intensive chemotherapy, and one was something that was just a little bit better than best supportive care. So, many patients could not receive treatment. And the increase in knowledge that we have on a molecular level in AML really did two things at once.  On one, we understood we had a more fine tuned understanding on which patients would respond. And the second thing is that this knowledge about the molecular landscape enabled us to have new treatments available that are sometimes in pill form that can target specific mutations in patients who carry these genetic changes.   

Katherine Banwell:

Should all AML patients undergo in-depth testing like biomarker testing or cytogenetics? 

Dr. Eisfeld:

Yes. Every patient should do that. It can make the difference between life and death. And it can make the difference between receiving – having a hospital stay of four weeks with intensive chemotherapy versus taking the pill at home. This is very rare that this is possible. But it is possible. And of course, you – one would not want to miss this chance if it would be possible.   

Katherine Banwell:

With all the new tools that are available, what other factors do you consider when working with an AML patient to choose a treatment approach for them? 

Dr. Eisfeld:

The most important aspects are what we call – and this is – I’m glad that you bring this question up because I feel you have to think of – and that was what we’ve been talking about – called disease-associated factors. This is everything in the leukemic cell. They – how does a leukemia looks like? How does the blast look like? What changes are there?  

That’s the biggest part of what I would call patient-associated factors: the patient age, the patient performance status, actually the patient. In every – because I think, sometimes, we forget about it. But we just look at all the molecular testing.  

But even if – for example, there would be a patient with a very good risk leukemia, where I think, “Oh, this leukemia should respond very well to an intensive chemotherapy.” 

If the patient cannot tolerate chemotherapy or – and I see it more often than I would wish for patients who are young who have a great performance status, but they just cannot – they – their family reasons. Small children sometimes – they just cannot be away for so long. This all comes into consideration. So, it’s really important because we all work together as a team. And the right treatment for the leukemia might not be the right treatment for the patient.   

And for most cases, however, I think, it will only work if one stands with a whole heart with those physicians, and patients, and family. Because it’s a long journey behind the care that’s being given. And so, this is a joint decision-making, and there are different options that can be done. Of course, I would not advise something where I would think there are no chances of success.  

And so, this has to be an open discussion. But this is – it’s very often a very tough treatment to communicate that and see what are the goals of each patient? That will be most important for treatment and decision-making.     

Kathrine Banwell:

Dr. Eisfeld, we’ve been discussing treatment choices and how they vary for individual patients. What types of AML treatment classes are currently available? 

Dr. Eisfeld:

This is a very good question. The most classic treatment class is intensive chemotherapy. This is just because people might have heard the names. It is called 3 + 7 or 7 + 3, which refers to one weeklong impatient chemotherapy treatment. But you get one chemotherapy for seven days. And the first three days, you get a second treatment as well.  

That’s why it’s called three in seven in here, but it’s a total of seven days. So, we have intensive chemotherapy. And there are different flavors of it. But this is usually the backbone. The second class is what I would call a targeted inhibitor. And here we can look at two different aspects. We have target inhibitors for a specific DNA mutation that are found. And specifically, one are called IDH or FLT3 mutations.  

And these are pill forms that I usually by now combined with a third drop class which is called hypomethylating agents. And I will go through in a moment.  

But these are pills that really only work in patients and carry that genetic change. They have very, very low toxicity and very high chances of working. So, that’s why this testing is so important to see if one is one of the 15 percent of AML patients carrying an IDH mutation – 15 percent isn’t low. And a similar rate carries a FLT3 mutation.  

And then there is also going to target inhibitors. That is targeted because it is against what I would call a pathway. The gene that is commonly activated in acute leukemia – and this is called BCL-2 and the drug is called venetoclax (Venclexta).  

This is now stormed through the acute myeloid leukemia world in just a few years ago and has been approved as a front-line treatment option for several patients, especially for those who are older. And we know that even patients who respond usually favorably to chemotherapy, some of those also respond well to venetoclax the Bcl-2 inhibitor. The benefit is that this treatment in many cases if it works, can be done as an outpatient in here and has very often lower complications.  

It is actually has so good results that I – sometimes it seems too easy. So, we actually advise patients to still try to get – the first time they get the treatment, do it at a center where it’s done more commonly. Because it sometimes – don’t underestimated the power of a pill. And it’s still a very, very powerful drug. So, doing it in a controlled setting – because if cancer cells break down, they break down and can create all sorts of trouble.  

So, that is really something – for several leukemias, it can be concerning. And again, now the treatment group would be called hypomethylating agents. The names are azacitidine (Vidaza) and decitabine (Dacogen). And they act in a very different way. They try to change the epigenetics like methylation patterns. And often, if it is an untargeted way of the tumor cells and they can be used alone.  

Or very often by now in combination with the targeted inhibitors that I was just mentioning. These are infusions that can be done either over five, seven, or 10 days depending on the combination treatment. And for patients, as I mentioned before, that don’t respond well to many other options to those patients with a complex karyotype. This is, for example, a scenario where patients can just receive this as their only therapy.          

Katherine Banwell:

What about stem cell transplant? You didn’t mention that.  

Dr. Eisfeld:

Yes. That would be the next one. So, stem cell transplant always comes as an option, which I would call as a maintenance therapy. Again, two aspects. We have two different end goals.  

First is get rid of some leukemia. Second is to make sure it stays away. And as soon as the leukemia is in complete remission, depending on the performance status – the agent. Again, in multiple different things. It’s not an easy decision. 

At that time, there has to be a conversation. And that always involves a leukemia physician and a transplant physician very often. These are different providers that goes for the risks and benefits. Where the question is if I only continue to do chemotherapy – because it’s never only once. You would always have to repeat your chemotherapy. What is the likelihood that the leukemia comes back, and does it outweigh the risks that comes with the stem cell or bone marrow transplant that comes in here. But for many leukemias, especially for young patients and for patients with higher risks, this is the only chance of a cure. That is the most curative and only curative attempt for many leukemia attempts.  

Katherine Banwell:

Where do clinical trials fit into the treatment plan? 

Dr. Eisfeld:

That is the absolute backbone. We always have to think about that. 

Everything – all the treatment options that I mentioned – have been clinical trials, just very, very short time – very few years ago. So, every patient that comes to a leukemia or a cancer center, clinical trials will be discussed if they’re available. Because they will provide a special opportunity to have even more fine-tuned treatments – either newer agents. And I think what is very important to mention is that all clinical trials that are available would give the option of the best standard of care. And then the hope that a patient wouldn’t be getting any of the best standard of care options that are approved. The hope is that the new agent or added agent in many cases would even do better.  

It’s also important that there’s a lot of additional monitoring during the trial. I think it can be seen in two ways as two parts of a coin. In one way, it may be additional visits to the hospital or additional blood draws that are necessary to be sure that the medications are safe, and that researchers and conditions can learn about it. But on the other hand, it also gives you this extra bit of being looked after and really getting checked in and out, making sure that all organs are functioning that everything is just going fine. And many patients appreciate this a lot. And they have this pair of extra eyes on them all the time.  

Katherine Banwell:

Dr. Eisfeld, what therapies are available for AML patients who relapse or don’t respond to initial therapy? And is this treatment approach different from those who are newly diagnosed?   

Dr. Eisfeld:

Most of the time, the treatments available at relapse are the same available at the first diagnosis. Just because we know now that, for example, if you have a molecular marker that, for example, is available, it would act with also relatively high chance of relapse upset. However, at relapse, the most important thing I personally would do is consider a clinical trial even stronger than in the first mindset. 

Because it means that the leukemia outsmarted current treatments very often. So, usually what we would be doing is see if there is a targeted inhibitor or a cell mutation FLT3 or IDH, which I would personally always prefer to go in MLL rearrangement now for the new menin inhibitors where one would go with the same option as if it would have been their diagnosis. But if not to really consider clinical trials is a strong urge. 

Katherine Banwell:

Should patients or should relapse patients undergo genetic testing again? Is it necessary?  

Dr. Eisfeld:

Yes. At any time. Yes. Because we know that the leukemia changes. And you just can think about it in the way is that the cells that are surviving treatment, they’ve become smart. There was so much poison. There was so much treatment put on them. 

And the ones that survive might have a quiet additional chromosome change as additional gene changes. And even if a genetic change has not been present at time of diagnosis, the reason the cell has survived might have been that it has now one of these changes that came up on a later time during treatment or while the cell is hiding somewhere to come back.  

Katherine Banwell:

Are there therapies in development that are showing promise for patients with AML? 

Dr. Eisfeld:

There are so many of those. It’s hard to count. And this makes me very happy. There are exciting and again, targeted drugs.  

Once drug class is called menin inhibitors, which we – which were just published that show high promise.  

And again, very difficult to treat several groups of patients who harbor chromosome changes in MLL genes in here. So, that is a very exciting option.  

And there’s very exciting treatments with respect to what you call antibodies – monoclonal antibodies that protects the surface proteins that are being checked regularly. And one of those, for example, is called magrolimab. And that has even promise in these high-risk leukemias or adverse risk leukemias.  

And then we are not there yet, but I’m sure we will be in the not too near future. There are also multiple trials that are looking at what we call CAR-T cells. But patients might have heard about for lymphomas or acute lymphoblastic leukemias. AML is a little more tricky with respect to those. 

But we’ve seen pre-clinical studies that look really exciting. And I think it’s just going to be just a little more fine-tuning to make those easier, available, and more targeted for AML patients. And I’m very much looking forward to seeing those come more onto the market.      

Katherine Banwell:

You mentioned the new menin inhibitors. Who are they right for?   

Dr. Eisfeld:

We try to find out more, but definitely for patients that have been shown to be beneficial for patients who have chromosomal and rearrangements of the MLL gene or KMT2A gene. And there’s also good data on patients who have NPM1 mutations.  

Even though we know – and these are mutations who harbor this kind of genetic change – have now a plethora, which is a great, of treatment options.

Because we know even conventional chemotherapy has been working decently well in them. We know that venetoclax also is supposed to work very well in them. But again, the data on the menin inhibitor with respect to NPM1 mutations is very exciting. 

Katherine Banwell:

So, Dr. Eisfeld, we’ve covered a lot of information related to AML care. As a researcher, what other topics are currently top of mind for you in the field of AML? What are you passionate about? 

Dr. Eisfeld:

Again, so many parts. I think there are probably three main things that I’d like to name. And I think about it as a little bit outside the box. Most of what we know about AML, we have become so much better. It’s because we have been studying patients who were treated over the past decades on clinical trials and very often here in the U.S. or in Europe.  

 But all clinical trials have a bias in that most of them have been done A) on patients who are younger than the age of 60. And B) fewer patients of other races and ethnicities included. And had patients not included that have AML, for example, not only in the bone marrow but on extramedullary sites – how we call it – up to 10 percent of their patients. And also, very often have not been done on very old patients where the AML is very common. So, all the patients – patients from other race, ethnicities, or underrepresented minorities, and patients who present with extramedullary disease are currently in my – underserved.  

And these are exciting areas and opportunities of research and of active clinical practice. Because those are the patients we need to include if it’s possible now to include them in clinical trials. 

If there are no trials available, then make sure any other additional molecular testing it done to understand them better and to advance our disease knowledge that we make sure that we can give the best possible care.  

Katherine Banwell:

I think that the most important part is to get the molecular testing, and to enroll into clinical trials, and then to very often biobanking 

Why am I saying that is because our knowledge AML comes from patients who donated some tissue so that we could learn – researchers decades ago could learn about the genes. We know that leukemias differ so much in between patients.  

So, I am worried that we are yet missing out on potentially important genes that need to be discovered and where we could develop docs for. This will only be possible with these additional testing. 

 The second part is to really consider going to larger treatment and larger treatment cancer center. And there are support systems in case that can help in here.  

And the third part is to get involved even as early as possible even if you’re not personally affected, with Be The Match – with bone marrow transplant because there’s a paucity of donors, of people of color that makes it harder for these patients to get a potentially curative treatment in here.  

We have other options now in bone marrow transplant where one can use only half-matching donors and or other availabilities. But again, that doesn’t outweigh that the bone marrow and donor registry that we need to get better at.  

And I can – there are just so many factors – such a high degree of structural racism that affects people from every corner. And I think we as physicians, as society, and everybody need to acknowledge that. And we have to make sure that we get better to, again, give every patient the best care and keep the patient in mind and see what’s right for them at the right moment.    

Katherine Banwell:

Where can patients or people who are interested find out about being a donor? 

Dr. Eisfeld:

There is the website called “Be the Match” that one can put in. This is probably the best way to get first information.   

And usually, at all the cancer sites. And sometimes, there is information at lab donation places, universities, either or the American Red Cross.  

Usually those places have information laid out there as well.    

Katherine Banwell:

Dr. Eisfeld, before we close, I’d like to get your thoughts on where we stand with progress in the field of AML. What would you like to leave the audience with? Are you hopeful? 

Dr. Eisfeld:

I am incredibly hopeful. I hope – when I started working in hematology, as I said at that time, it was just about when imatinib (Gleevec) came out. Which is this CML pill that really revolutionized care. And so, at that time, I would be – all patients on that bone marrow transplant service had chronic myeloid leukemia. And because they all had to undergo bone marrow transplant. Then Gleevec came, and today, there are no such patients who are see or very rarely that require such intensive care.  

So, I am very hopeful that in my practice time, which hopefully –and even earlier on – that there will be a time where we find targeted therapies for almost all patients.  

Katherine Banwell:

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

Dr. Eisfeld:

It’s an absolute pleasure. And if there are ever any questions, please feel free to reach out. For patients who reach out, we are there to talk to all of you and give advice as good as we can or put you in contact with the right people.   

Katherine Banwell:

Thank you. 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 powerful patients.org. I’m Katherine Banwell. Thanks for joining us today.  

Becoming Empowered and [ACT]IVATED After An Ovarian Cancer Diagnosis

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the ovarian cancer community. Ovarian cancer treatment options are ever-growing with new treatments, and it’s important for patients and families to educate themselves about testing, factors in treatment decisions, treatment types, and disparities in care. With this goal in mind, PEN kicked off the [ACT]IVATED Ovarian Cancer program, which aims to inform, empower, and engage patients to stay tuned in on the latest in ovarian cancer care.

Ovarian cancer can occur in an ovary, a fallopian tube, or the primary peritoneum – which is the thin tissue lining in the abdomen. Symptoms of ovarian cancer can vary widely and may include abdominal pain, pelvic pain, abdominal bloating, difficulty urinating, difficulty with bowel movements, or a growth or mass. PEN is proud to add information about ovarian cancer to serve more patients and their families. Cancer survivor and Empowerment Lead Mikki Goodwin interviewed expert Dr. Ebony Hoskins, a board-certified gynecologic oncologist at MedStar Washington Hospital Center and Assistant Professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center.

Factors in Ovarian Cancer Treatment Options

One essential part for ovarian cancer patients to ensure their best care is to receive genetic testing. Dr. Ebony Hoskins discussed the importance of genetic testing. “…ovarian cancer can be hereditary. Approximately 10 to 15 percent are associated with an increased risk with family history. It is now recommended that any patient with ovarian cancer get genetics testing period, even if there’s no family history that they should be offered genetics testing.”

Dr. Hoskins stressed the importance of ovarian cancer patients to know their ovarian cancer subtype, stage of disease, organs involved, and plan of attack for their specific cancer. Empowering patients with this information can help them as part of shared decision-making. “…I look at it I, II, III, IV. In terms of treatment planning, we look at that and there’s data that look and say, “What are the best options for treatment in someone?” It depends on their stage and the grade. And that’s all kind of important in terms of treatment, but as well as for prognosis.

Ovarian Cancer Disparities

Studies show that there are disparities in ovarian cancer care and clinical trial participation. While both Hispanic women and Black women experience more barriers to quality ovarian cancer care, a study found that Black women were 14 percent less likely than white women to receive all treatments recommended by the National Comprehensive Cancer Network (NCCN) guidelines. Another study on ovarian cancer clinical trial participation found that Hispanic/Latinx patients and patients on Medicaid were less likely to participate in ovarian cancer clinical trials. Ovarian cancer patients and patient advocates can help educate themselves and others about these disparities to aid in efforts to spread awareness and changes toward better care and clinical trial participation rates.

Solutions Toward Better Ovarian Cancer Care

Clinical  trial participation is vital to develop effective ovarian cancer treatment for all patients. Dr. Hoskins shared her perspective about the importance of clinical trials. “…I always tell patients, the reason we know what to give you now, treatment is based off a clinical trial. So we need these trials. We didn’t just create a new drug and just gave it. We need to know, is it going to improve survival? What are the side effects? Is it going to kill the cancer? And so it’s important to be on the cutting edge if you will, of advancement in the field. The only way I know what to give patients is based off a clinical trial.

Dr. Hoskins [ACT]IVATION Tip

[ACT]IVATION Tip:

Clinical trial participation can often diminish the financial burden of cancer care. Dr. Hoskins explained some of the financial benefits and advice for patients. “The financial toxicity and sometimes coming under their trial, the drugs are covered, so you’re getting cutting-edge care that comes as maybe it’s not as costly to you, so I think, again, my activation tip for a patient is inquire with your doctor, “Am I a candidate for a clinical trial? Do you offer a clinical trial, are there clinical trials that would fit my scenario that’s local that I could go to? Are there clinical trials that are available, say, out of state that you think I will be a good fit for?” And sometimes…again, not every patient is a clinical trial candidate for a number of reasons, but asking the question, I think is huge.

Cancer survivor Mikki Goodwin shared her patient experience and the importance of empowering yourself as a patient. “Live on purpose every day, be your best advocate, record doctor appointments, you’ll never remember everything, so it’s good to be able to play it back, take one day at a time, rest when you need to rest that is part of healing, and stay hydrated. Having cancer is not a sentence to die, but a call to live intentionally. More than anything, stay positive, more than half the battle starts in the mind.”

[ACT]IVATED Ovarian Cancer Program Resources

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

Though there are ovarian cancer disparities, patients and care partners can be proactive in educating themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to aid in your ovarian 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 an ovarian cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.

Omidubicel (Expanded Cord Blood) for use in Allogeneic Transplant

Introduction

Umbilical Cord Blood (UCB) has been used as a source of stem cells in allogeneic (donor) transplants since the late 1980s. When doing a transplant using bone marrow (BM) or peripheral blood (PB), it is necessary to have a close Human Leukocyte Antigen (HL) type match to reduce the chance of the transplant being rejected and the risk of Graft-Versus-Host Disease (GVHD). Since UCB contains more naïve cells, it does not need to match nearly as well to be used as a source of stem cells in a transplant. This is important for people who do not have good unrelated donor matches in the registries, in particular minorities who tend to be underrepresented in the registries and people of mixed race.

Since a single UCB unit contains significantly fewer stem cells than a PB or BM graft, it takes longer for a patient’s white blood (neutrophil) count and platelet count to recover when getting a UCB transplant. This is a fundamental problem of using UCB for transplants. This means that patients are at risk of infections for a longer time. There have been a number of attempts to expand the number of cells in a cord blood unit, dating back at least 20 years, but none have managed to be approved by the U.S. Food and Drug Administration (FDA).

FDA Approval

The FDA approved omidubicel to reduce time to neutrophil recovery in April, 2023. This was based on a Phase 3 randomized study (reported in Omidubicel vs standard myeloablative umbilical cord blood transplantation: results of a phase 3 randomized study) that compared the outcome of patients who received omidubicel versus those who underwent conventional cord blood transplants.

Comparison of Omidubicel and standard Cord Blood transplants

The trial enrolled 125 patients who were randomly assigned to receive omidubicel (62 patients) or a standard UCB transplant (63). Patients in the standard transplant arm received a double cord transplant if the initial CB unit was not well matched or contained a smaller number of cells. 67% of those patients received a double cord transplant, 33% a single cord transplant. Three alternative myeloablative conditioning regimens were allowed and different regimens to prevent GVHD.

The time to white blood cell recovery (a neutrophils count of at least 500) and platelet recovery (a count of at least 20) was much faster in patients who received omidubicel. Patients who received omidubicel had neutrophil recovery a median of 10 days faster than patients who received a standard UCB. Platelet recovery was a median of 13 days faster for those receiving omidubicel. Patients who received omidubicel spent a median of 11 fewer days in the hospital in the first 100 days post-transplant and experienced fewer serious infections..

There are a couple of drawbacks to omidubicel. About 10% of the CB units had manufacturing or production failure. In addition, it takes about 21 days to manufacture omidubicel. These issues resulted 14% of patients not being able to receive the therapy.

Discussion

Omidubicel is a significant advance in the use of cord blood for transplants. There was a big reduction in hospital stays and infections. There may be a survival benefit with omidubicel., the study was too small to determine if there was a statistically significant increase in survival, although there seemed to be a trend toward better survival. The authors of the paper in Blood , state: “The results suggest that omidubicel may be considered as a new standard of care for adult patients eligible for UCBT”. I think this probably is an understatement and centers that use cord blood in adults and older children will rapidly start using omidubicel. No doubt there will be a high price for omidubicel, but this is likely to be balanced out by reduced number of days in the hospital.

A major question that remains unanswered is how omidubicel will now compare to transplants using an unrelated donor or a half-matched family member (haploidentical). My guess is that most centers that do not do cord blood transplants in adults will continue to use unrelated or haploidentical donors. Probably, in a few years there will be a comparison done, at least using data from transplant registries.

I asked Karen Ballen, M.D. Chief, Hematology/Oncology, University of Virginia Cancer Center for comment on omidubicel (I would also like to thank her for graciously providing comments on this article):

Omidubicel is the first product approved by the FDA for expansion of a stem cell transplant graft, in this case cord blood. The randomized clinical trial showed an advantage in neutrophil and platelet engraftment and days in the hospital. There was no survival benefit, which could potentially limit use. The cost of the product is unknown. Another drawback is the 2.5 to 3 weeks needed to manufacture. Nonetheless, this represents a major advance in the cell therapy field.

Further Reading

May 2023 Digital Health Round Up

Every month there is new technology developed that helps doctors treat cancer. Scientists have developed a sophisticated oxygen-eating battery that successfully helped treat cancer in trials. A hollow seed armed with immunotherapy has been successful in treating pancreatic cancer in mice trials. A new powerful microscope at a university is helping scientists to see cancer react with radiation at a cellular level. 

An Oxygen-Eating Battery Implant Cures 90 Percent of Cancer in Mice 

They have developed an implantable battery system that can identify low-oxygen environments in the human body that support tumor activity the battery system includes a self-charging saltwater battery and an anticancer drug called tirapazamine (TPZ) reports Interesting Engineering. This implant attacks cancer cells in the environment in which they grow, an environment lacking in oxygen. This battery implant regulates the low oxygen tumor conditions.

The drug TPZ only targets cells in this environment so no healthy cells are harmed. Researchers found that the volume of cancerous tumor decreased using this method. Another important finding was that there were no side effects such as weight loss or hair loss that typically occurs with chemotherapy. The battery implant creates a hypoxic environment making the TPZ work better. If this works as well in human trials, cancer patients won’t have the common painful side effects of chemotherapy. Click here for more information. 

Hollow “Seed” Shrinks cancerous Tumors From the Inside 

Pancreatic cancer is relatively rare, but it’s also notoriously difficult to detect and treat. As a result, more than 80% of patients diagnosed with the most common form of pancreatic cancer -pancreatic ductal adenocarcinoma (PDAC)- die within the first year after diagnosis, and fewer than 10% live for five or more years after reports Freethink. Doctors use monoclonal antibodies (mABS), which bind to cancer cells to either kill the cells or help the immune system fight the cancer.

These antibodies are given IV and circulate throughout the body. The mABS do not go straight to the pancreas, they are in the bloodstream, and this is what causes side effects. A nanofluidic drug-eluting seed or NDES is a device made of stainless steel that releases the monoclonal antibodies at the cancer site over 2 weeks period. Releasing it directly at the pancreas reduces side effects and allows for a smaller dose. Researchers have found promising results in mice trials. Click here for more information. 

New SEISMIC Facility Could Improve Our Understanding of Infectious Diseases, Aging, and Cancers 

The University of Surrey’s SEISMIC facility will offer scientists access to technology that enables them to pick up single cells or even parts of cells and measure the spatial position of biomarkers like proteins, metabolites and lipids reports News Medical & Life Sciences. This Research Center has an ion beam center, environmental flow laboratory, and a proton beam. 

These advanced microscopes allow scientists to follow biomarkers throughout the cell. This information will help them see how cancer affects cells. This technology allows scientists to see how cells communicate under certain conditions. They can observe the interaction between cancer cells and radiation. The University is allowing researchers and academics that are funded for cancer research to use this advanced technology. Click here for more information.

Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All

In the realm of patient advocacy, inclusivity and accessibility are critical to ensuring everyone’s voice is heard, respected and empowered. With a few simple steps, you can transform your social media presence into an inclusive platform that promotes and advocates for all individuals’ rights. A digital space that is inclusive not only amplifies diverse voices but also fosters understanding, empathy, and support.  

Our social media content has the potential to make a difference and ensure everyone, regardless of background or identity, feels welcome and empowered. Follow these five steps to create a more inclusive and accessible online space for your community. 

1. Choose accessible fonts

When creating digital content, choose fonts that are clear and easy to read, especially in smaller sizes.  The fonts shouldn’t be overly decorative or ornate, as these may be hard for some people to read. In general, Sans-Serif fonts, such as Arial, Verdana, or Open Sans, are considered more legible for digital content. They have clean lines and lack the small embellishments (serifs) found in serif fonts. This simplicity contributes to improved readability, particularly in smaller font sizes.  

Font size is another factor in enhancing readability. Make sure your font sizes are large enough to be easily read on different devices and screens, including smartphones and tablets. A minimum font size of 14 pixels is generally recommended as a starting point for body text. However, consider increasing the size for titles, headings, or important information to improve visibility and ensure that the content stands out.

2. Use alt text for images

Alternative text (alt text) provides a text-based description of the image content so that people using screen readers can understand and engage with your social media content.  Use alt text that is concise, but also provides enough information to understand the image’s message.  A general guideline is to keep it under 125 characters. Think about the essential information someone needs to know if they cannot see the images. Be sure to include key information in the alt text if the image contains text or data.  

Here’s an example of alt text for an image: 

Alt text: “A group of diverse friends laughing and enjoying a picnic in the park on a sunny day.” 

In this example, the alt text provides a concise yet descriptive overview of the image. It conveys the main elements of the image, such as the diverse group of friends, the activity they are engaged in (picnic), and the setting (park on a sunny day).

3. Add captions and subtitles to videos

Videos on social media platforms can be made more accessible through the addition of captions. Many social media platforms offer features that allow you to caption your videos, either by uploading caption files or manually entering captions during the editing process. Caption files contain timed text information that corresponds to the audio in your video, ensuring that the captions appear at the right moments. Two common caption file formats are SubRip (.srt) and WebVTT (.vtt), which can be created using captioning software or online captioning tools. 

To enhance the readability of captions, make sure they are displayed clearly and have good contrast against the video content. Use a legible font that is easy to read, even in smaller sizes. Additionally, ensure that the text is large enough to be easily read on a variety of devices and screen sizes. This consideration is especially important as many users access social media platforms through mobile devices. 

After adding captions, review and edit them for accuracy (no spelling or grammar errors) and synchronization. Captions should be in sync with the video’s content to provide an optimal viewing experience.

4. Write simply and clearly

When it comes to crafting social media content, use simple and straightforward language that can be easily understood by a wide audience. Avoid using jargon, or overly technical terms that may exclude or confuse some of your followers.  

Consider the demographics and preferences of your audience when choosing the language and tone for your social media content. Tailor your messaging to ensure that it matches their language proficiency level, cultural background, and any potential sensitivities. 

5. Use inclusive language

Choose words and phrases that are inclusive and respectful to all members of your audience. Avoid any language that discriminates against or excludes specific groups of people based on characteristics such as race, ethnicity, religion, gender, sexual orientation, or disability. Stay informed about evolving language and societal norms to ensure your content remains inclusive and respectful. Be open to feedback and be willing to make adjustments to your language choices when necessary. 

Recognize that individuals from diverse backgrounds may interpret your words differently. Be aware of cultural sensitivities and avoid language that may unintentionally offend or exclude certain cultural groups. Research and understand cultural nuances to ensure your captions are respectful and inclusive. 

Making your social media content more accessible and inclusive is not only the right thing to do, but it also opens up new opportunities to connect with a wider audience. By implementing the practices above, you can create a more inclusive and welcoming digital space where everyone feels valued, understood, and included. 

AML Patient Profile: Jordan Supino

As Jordan Supino shares his acute myeloid leukemia (AML) patient story, it’s quite striking to hear his love of life and passion for helping others. Calling himself “The Cancer Killer,” Jordan has an inspiring dedication to fitness, faith, family, finance, and fun, for overall health and wellness. He shares the perspective he’s gained, “People need to understand that there’s a purpose for everything. We go through situations, and you have to see it for what it is. What’s the message? You may be listening to the doctor, but you need to hear what it’s preparing you for. I believe that everything that we go through in life is truly preparing us to grow later in life. If you learn to start cooperating instead of chasing, those tests will become your testimony for the world. There’s a greater good in learning to help others.”

As for Jordan’s cancer journey, it began with being hit with hot and cold sweats along with major leg cramps that he’d never experienced before. He dismissed the symptoms and returned for a gym workout a few days later when his body started trembling, which brought on a partial collapse and his legs becoming locked up in extreme pain. Jordan was diagnosed with AML in July 2011, which led to him being hospitalized for about two months while he received high-dose chemotherapy.

After completing that round of chemotherapy, Jordan’s doctors informed him that he’d need to return for his next round of chemo in 4-1/2 weeks and to prepare for a bone marrow transplant. Much to his doctors’ surprise, he vowed to them that God would be granting him a miracle and that the power of his mindset would eliminate the cancer and any thought of a bone marrow transplant. Jordan further promised that he’d bench press 500 pounds before his next round of chemo to demonstrate the power that can come from the combined power of one’s faith and mindset and the cancer would disappear.

When Jordan was in the hospital, he had hundreds of people go to visit him. He recalls about the visits, “I was just blown away by all these people. And a lot of them I didn’t know or couldn’t remember. They were sharing stories with me about how they’d crossed paths with me sometime in my life. Whether it was some words of wisdom that I gave them or helped them pay a bill or took them to dinner or something, they felt indebted to come pay it back to me. And I felt like if God decides to take me now, I’m okay with that, but I’m not ready just yet.” He knew he’d done a lot of good in the world helping people but felt that his work wasn’t finished yet. 

Jordan continued with his chemotherapy treatment for 4 months. But he decided that he wanted to do some shopping for gifts before Christmas. Jordan wore a mask and bundled up for his shopping outing, but another test hit Jordan on December 27 when he woke up with a 107-degree temperature and was partially blind. He collapsed at the hospital and went through enduring pneumonia, heart failure, kidney failure, liver failure, blood clots, fluid-filled and blood-filled lungs, bloodline infections, full septic shock, and a 24-day induced coma. Jordan’s body and spirit weren’t ready to surrender, however. He woke up, and his doctors told him it could take up to a month to start walking again. Jordan blew away that estimate and was walking in two days. His doctors also told him it could take up to a year for his full recovery, but he gained 50 pounds in six weeks and was unrecognizable to hospital ICU staff due to his drastic health change.

While in the hospital, Jordan made it part of his routine to help others. He recalls of his hospital stays,
“I made it a point to not just survive adversity, because I’m someone who thrives against adversity. People tell me I’m a cancer survivor, but I say that I’m a cancer killer and that I rise above it. You can’t control what happens to you in life, but you can control how you react. It sounds cliche, but how many people actually hear it? How many people actually adopt it? How many people actually apply it and see the results of it? I’m a walking testament to that.” Jordan decided to help other people in the hospital who didn’t have visitors to see them. Hospital staff called him affectionately “Dr. Real Deal or No Deal.” The doctors would call him when people were having a hard time or felt like giving up. He’d visit several people each day and sit with them. And Jordan would learn about them or tell them stories from his life. “Whether I was preaching to them, laughing, doing some cardio down the hallways, or just getting them moving and grooving and feeling good about themselves; it was so magical to see all these people just start living. They stopped saying, ‘Why me’ and started adopting the ‘Why not me?’” Hospital staff brought in creative items where the staff and patients created inspirational artwork with motivational sayings that made an immediate impact and has continued to do so over the years. The huge pieces of artwork were transferred to the new oncology unit in a new building and are still making an impact on patients and their families today. 

As for advice for other cancer patients, Jordan shares, “I don’t allow myself to stress. I don’t allow myself to create anxiety. And I don’t allow myself to get depressed. If I feel anything trying to creep up on me, I find these different things to do to get myself through and grow. Whether it’s going out and getting some sun or going out and feeding the ducks and meditating by a pond or going for a walk knowing that when the body moves the brain grooves or putting on some music or lifting some weights at the gym, knowing how to control your mindset is key. You have to know that you’re in control, and you have to act like the change you want has already happened. When you’re feeling bad, just punch it in the mouth to get better. How much have you ever pushed yourself to the limit? You become a little bit stronger and a little bit wiser from pushing yourself. Life is all about perspective in any situation we go through.”

Jordan has come to many realizations over the span of his life and time with cancer. He believes in changing your environment to what you need. “When you’re struck with adversity and things like cancer, it’s okay to rest, but there’s still more work to be done. This is your story and the card that you’ve been dealt to serve a bigger purpose. If the hospital food isn’t cutting it, find a friend who can cook. If you’ve got a negative person around you, find someone who’s joyful. If that person who’s hugging you isn’t a good hugger, get a good hugger. If you don’t like that background music, change the music. This is your world, and you become what you surround yourself with. You need to just focus on being the best version of you. If you stop chasing and start seeing cancer as the gift that it may possibly be, then you’ll learn how to cooperate and to ultimately become just an amazing masterpiece and things for others to witness.”

Through his work, Jordan coaches people one on one – emotionally, mentally, physically, spiritually, financially – whatever the case may be. And for those facing a cancer diagnosis, he poses this question, “Do you want to live, or do you want to die? I want to live. You die only once. You live every day. I’m going to live and enjoy blessings, prosperity, and goodness in helping others.”