Posts

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID? from Patient Empowerment Network on Vimeo.

What are some key questions that chronic lymphocytic leukemia (CLL) patients can ask about digital tools for their CLL care? Dr. Kathy Kim from UC Davis School of Medicine offers advice on questions to ask and explains important use factors about some technologies.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?


Transcript:

Dr. Kim:

Patients should be advocates and they should ask, what can you give me that can help me through this process, and what tools do you have for me to communicate and stay connected with my doctor? So, you should ask, are there ways for me to get in touch that are not calling, just when the clinic is open, do you have a secure messaging system? Can I message through the patient portal? Do you have an app that’s available for that patient portal that I can download? Do you have any other research studies where they’re trying as the same way you said patients should ask other clinical trials, are there research studies using technology for cancer patients? So as much as outreach as we do to try to recruit patients into our technology trials, oftentimes somehow patients don’t hear about it, so if you ask and you’re interested, is there a study like that where I can get access to technology to try it out, to see if it will help. So, you should definitely be an advocate, but I think some specific tools that patients should be asking about that are already available are things like, how can I get an electronic copy of my care plan? Can I get that through the portal or do you have an app where I can download my actual care plan? How do I get electronic copies of my medical records?

Where can I get them? And how can I store them safely? How can I connect to other patients in my area? Do you have an online patient support group? Do you have any services at the hospital where you connect patients like me as close as possible to the kind of patient I am, that you can make a match for me to talk to someone by using either ZOOM like this or an online support group or just one-on-one match maybe introducing by email. These are all technological tools that already exist that are not, that should not take a huge amount of time for someone to learn a new technology, but you want to make sure that it’s something that your hospital and your provider feel comfortable have tried and know that it’s secure and safe and useful. You don’t wanna go off and do something that your provider has no connection to it, you really wanna keep these as integrated as possible, and in that way, I think in the future, we won’t just rely on Mr. Marks, you have to come in to the hospital for every single thing. We want to give you all these tools, and then you and your doctor can decide which things you really have to come in person for and which things you can access online.

And so that is the conversation that every time you go talk to a new provider or go to a new hospital or clinic, you should ask, what technologies do you have that are available to the patients? And that that’s how I think we’re gonna push forward our new model of cancer care, which I will hope will use the technology to allow patients to collaborate with their healthcare team more easily and more seamlessly and in a way that’s safe and secure

Who Is on a Patient’s CLL Care Team?

Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

See More from Engage CLL


Related Resources:

 

An Overview of CLL Treatment Types

Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials? from Patient Empowerment Network on Vimeo

What impact has telemedicine had on multiple myeloma clinical trials, and what effect will it have on trials in the future? Expert Dr. Joseph Mikhael explains the impact of telemedicine early on in the COVID-19 pandemic, how he uses virtual visits with his patients currently, and the role and benefits of telehealth in the future of myeloma care.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

 

Transcript:

Dr. Joseph Mikhael:

COVID-19 has impacted our lives in just about every way imaginable, and in multiple myeloma, sadly has very much impacted our ability to conduct clinical trials. Thankfully, now that we are out of the immediate acute phase when many trials were suspended, we actually have been able to work around this in general, where now we’ve been able to re-introduce studies and bring in new studies, of course, and we can do so in a more careful manner. Many of our clinical trials now are allowing intermittently to have telemedicine visits, which reduces the traffic for patients and makes it a little bit smoother. Some of the questionnaires and the things that we used to have to fill out on paper or physically in-person now can be done electronically, and so I think in many respects, we’ve really overcome most of the barriers so that we can continue the outstanding work and clinical trials to provide options for our patients that were not available before.

And looking to the future, I hope, even paradoxically in some way that this may — now that we’ve developed a more sophisticated telemedicine platform — it may allow us to do more and perhaps reach patients that may not have been reached before, there are already studies and trials that are being done through telemedicine, not necessarily a drug trial but quality of life studies, engagement studies, educational studies, different ways that we can enhance a patient’s experience and investigate better ways of doing things now that we can do so more fully electronically.

So, when I think of telemedicine and the future in multiple myeloma, I think it will continue to have a role in the long term. I think, much like people think that there will be more virtual meetings, I think we all want to get back to in-person meetings of various types and sizes and shapes, there will always be a component of virtual, and I can think even in my own practice and some patients that have quite a long drive to come down to see me, that they will still have to have face-to-face visits, but intermittently when the things are going well, follow-up like visits where the discussion may be limited.

I think there will be a role for this so that we can leverage the best of telemedicine and the best of in-person medicine so that the patients can receive the best care possible.

What Multiple Myeloma Populations Will Benefit from Telemedicine?

What Multiple Myeloma Populations Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

Which multiple myeloma patients will benefit most from telemedicine visits, and which patients can get more from in-person visits? Dr. Joseph Mikhael shares information on how to ensure the best myeloma care even during pandemic restrictions and how in-person visits have adjusted to limit COVID exposure risk.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

Transcript:

Dr. Joseph Mikhael:

When it comes to making a decision around, do I need to go into the clinic or can I do this as a telemedicine visit, of course, that has to be discussed with the healthcare team, but a few things we’ve learned through this pandemic.

And perhaps one of the most important things we’ve learned through the pandemic is that controlling one’s disease, controlling one’s myeloma is critical to protecting people against COVID, sadly, many of our patients who have struggled the most with COVID are those who had very active myeloma. So, we emphasize the importance of making sure that one continues to receive the best myeloma care possible, and very often that is going to involve an in-person visit, not only for discussion, but, of course, for the actual receiving of treatment. Secondly, I think it’s very important for us to note that we really have not seen significant spread of COVID or almost any infection within our hematology-oncology clinics, we’ve taken particular precaution around this area. So, this is different than someone maybe going out to a more public place where the risks may be higher. And so, we try to reassure our patients that coming into clinic actually is really not a high-risk situation and, in fact, perhaps lower risk than ever in light of the fact that many of our waiting areas and places where we have patients have been restructured and have fewer patients because of telemedicine visits.

And then thirdly, and very importantly, whether it’s telemedicine or in-person, it’s really important to maintain open, honest, and clear communication with the healthcare team. And if that is felt that it’s being done to a certain extent in telemedicine, fantastic, but there are situations where it’s challenging and difficult and really must be face-to-face. And so I would want to encourage my patients not to be afraid to go in to receive treatment and to meet with their healthcare team. These are generally very safe places that we take special precautions to ensure their patients can receive the best care possible.

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

How Will Telemedicine Impact Prostate Cancer Clinical Trials? from Patient Empowerment Network on Vimeo

How will prostate cancer clinical trials be changed by the addition of telemedicine to the treatment toolbox? Expert Dr. Leanne Burnham details patients who can benefit from telemedicine visits — and explains some of the history of discrimination in medical care for BIPOC patients and treatment response of African American men with prostate cancer

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

 

Transcript:

Dr. Leanne Burnham

So clinical trials, the whole concept of clinical trials has really come to the forefront of the media right now with everything that’s happened in 2020 and currently with COVID.

And so a lot of people, if they were not aware of discrimination in medical care or clinical trials in the history of the U.S., then now they’re starting to become well-versed in it. So now people are hearing, “Oh, Tuskegee syphilis experiment,” where those of us who are in science, in medicine study health series research is, this is not new to us, so we’re grateful that it’s coming to the forefront. People are learning about it, but there is a justifiable medical mistrust by many Black and Brown people, but African Americans in particular, because of what has been done and not done in terms of medical treatment in the past 400 years. And so, because of this medical mistrust, that leads to sometimes a hesitancy to participate in clinical trials, because there’s an idea of, I don’t want to be a guinea pig, so that’s just one aspect that leads to less enrollment in clinical trials. There’s the whole other side of things, right? There’s the fact that a lot of African American patients are not asked to be in a clinical trial, they’re not explained what the clinical trial entails, a lot of people don’t realize that clinical trial patients have access to what I call what I consider to be VIP access to what is cutting-edge, and it doesn’t mean that it’s not new, that it hasn’t been tested extensively. It’s just now that it’s available to a patient at a particular disease stage that we might be looking at, and we have a lot of reason to believe that it will help that patient.

So a patient that’s enrolling in a clinical trial has access to the VIP treatment. And then as an added bonus, they actually have extra engagement with providers, extra touchpoints with their providers that patients that are receiving standard of care and not enrolled in a clinical trial don’t have as much access to. That being said, in addition to that, for us to really forward medicine in what we call precision medicine, which is able to have medication that’s tailored to an individual person based on their DNA makeup, based on how their body would individually respond to a drug. It’s super important, highly important that we have diversity in patients that are enrolled in clinical trials. For example, if you don’t have enough African American men enrolled in the clinical trial for prostate cancer, then you don’t really know if that medication would work worse or even better in that patient. And what we’re actually seeing is there has been a development of race-stratified clinical trials in the past less than 10 years, really around five years, where we’ve looked at chemotherapy, we looked at hormone therapy, and we looked at immunotherapy, where we include enough African American men in the trials, and we look at how the drug responds in African American men versus other men. And we see that African American men actually have a better treatment response than other races, so how amazing is that? Where you have a demographic that is more likely to get aggressive prostate cancer and die much younger, and we’re seeing that if they’re given the new treatments that are really tailored to target the disease in ways that we weren’t able to do it before, that they’re responding better and having longer survival and better outcomes. And so it’s really important for all those reasons I described to increase African American participation in clinical trials.

Now, I say all that to get to this point, which is, enrollment is not easy when you don’t live near a clinical trial center or a hospital that’s offering whatever treatment you’re interested in trying out as part of a trial. And so we know that race in this country is tied to geographic location, it’s tied to socio-economic status, and so what telemedicine provides is in previous instances where maybe a patient lives out the way 60 miles or more from an institution that has a clinical trial that they would want to be involved in, now they don’t have to drive to that center. They can have a telemedicine visit, they can conduct labs where they’re at near their home, see if they qualify to participate in the clinical trial based on their own body’s physiology and how their blood work comes out and how their imaging comes out, see if they qualify. And then they can enroll in that clinical trial, and so telemedicine in that aspect really opens the door to people who may have been interested who live out of the way, maybe even in a rural setting where the institutions that they have nearby, don’t have what they are interested in using or what may be best for their treatment plan personally, and so telemedicine opens a whole new world to patients such as those.

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

Prostate cancer patients often have financial costs associated with their care. Expert Dr. Leanne Burnham details ways that telemedicine reduces financial toxicity for prostate cancer care — and shares some of her own experience as a cancer patient when she was a doctoral student.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

 

Transcript:

Dr. Leanne Burnham

So speaking about financial toxicity, let’s just talk about it when it comes to medical treatment in general. Financial toxicity comes in many forms, and I can speak to this a little bit on a personal level, I myself was a cancer patient when I was a doctoral student, and I had to take nine months off of school and do chemo and surgeries, and the whole nine yards and the strain that puts financially on a family depends on what kind of safety guard you have in place ahead of time. When you’re not expecting to get cancer when you’re a young person, it can throw a monkey wrench for sure. And so in my own personal situation, my husband owns a barbershop, and he doesn’t have sick days, right, so if he doesn’t go to work, leave and he doesn’t come home with money. So that time that I was sick, that was stressful on us, because he didn’t necessarily want to call off, but he wanted to call off so that he could be with me, and he’s very concerned after I’m having my treatment, but at the same time, he needs to go to work. And so the stress that that creates for the patient, for the caregiver, that doesn’t necessarily lend itself to the healing process, because what we know is that stress kills literally, quite literally, and I’ve published on that topic before. As it pertains to prostate cancer, we know that chronic stress, cumulative stress spread out over time dysregulates your hormone function and leads to all kinds of disease, metabolic diseases, cancer down the road.

So financial toxicity is a real thing, and there are ways that telemedicine can help to mitigate some of that financial toxicity. So, for example, when you don’t have to call off work, let’s say to make your televisit, then that’s a really great thing. When you don’t have to try to find child care so that you can go to your appointments because now at the hospital setting or the doctors’ offices, you can’t bring your kids with you like you used to be able to just…okay, come sit in the waiting room, or come in the room. It’s not like that you can’t even enter the building most of the time, and so a lot of people have to try to find child care if they were going to go to the doctor in-person. But the benefit of telemedicine is you don’t have to do that, so that’s a saved cost. I know myself; I’ve taken televisit appointments during my lunch break while I’m in lab, and that just works out a lot better, it’s not a day that I have to call off work in order to make that happen. The other way that telemedicine can help reduce cost is there can be reduced visits to, let’s say, urgent care or the emergency room.

I can think of a few situations during this quarantine era with my kids even where certain symptoms come up and I think, “Oh, I really need to take him to urgent care,” but I schedule a video appointment with their doctor, the doctor goes over a symptom checklist and says, “You know what, you don’t need to actually bring them in for an appointment, just bring them in and have them do this lab work real quick and just be in and out, and then we’ll let you know if there needs to be a follow-up.” And then most of the time, there doesn’t need to be a follow-up, or there’s just a prescription that’s needed, and you avoid the extra cost of what going to urgent care would have been, going to the emergency room would have been. And you’re reducing your exposure to COVID, which is not a financial toxicity question, but that’s a benefit that telemedicine has as well.

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Benefits of Telemedicine for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

What are some of the telemedicine benefits that prostate cancer patients can experience beyond the most obvious ones? Expert Dr. Leanne Burnham shares patient safety, logistical, and care option benefits that she has seen with telehealth for her patients — and also shares the percentage of prostate cancer patients who prefer virtual visits

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

 

Transcript:

Dr. Leanne Burnham

So telemedicine is presenting all kinds of new opportunities for any patient, but in terms of prostate cancer patients they fall into that category as well. What we’re seeing is that actually, the majority of patients prefer telemedicine upwards of 75 percent prefer to have that option, and adding virtual care has a few benefits including you don’t have to travel to the doctor, and you have access to maybe more options, more physician options, more institutional options. Maybe there’s a setting where they have a treatment that the location that you previously have gone to, doesn’t have. You have an option to network outside of your usual team to speak with other specialists, maybe get a second opinion. So that is something that patients are really saying that they like in the time of COVID that we are right now, where telemedicine is definitely increasing.

Metastatic BC Research: How Can You Advocate for the Latest Treatment?

Metastatic BC Research: How Can You Advocate for the Latest Treatment? from Patient Empowerment Network on Vimeo.

What do metastatic breast cancer patients need to know about the latest research news? Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS), along with her advice for advocating for the right testing to help guide treatment options.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Could Advances in Breast Cancer Research Mean for You?

How Can You Advocate for the Best Breast Cancer Care?

Factors That Guide a Metastatic Breast Cancer Treatment Decision

 


Transcript:

Dr. Kruse:                   

At this year’s San Antonio Breast Cancer Symposium, there were a few interesting presentations about the treatment of first-line metastatic triple-negative breast cancer that I think patients should be aware of.

Two of the presentations centered around trials that were presented in the past. Those reporting, patients reported outcomes from the IMpassion 130 study, which looked at chemotherapy for metastatic triple-negative disease plus the immunotherapy atezolizumab. And then, there was also an update on the results from the KEYNOTE-355 study, which was a study again of chemotherapy for metastatic triple-negative patients in combination with pembrolizumab, a different immunotherapy. And both of these studies showed that there was benefit for women in certain sub-groups of triple-negative breast cancer when looking at addition of immunotherapy.

And so, what I’d like to draw patients’ attention to with these presentations is that you have to be aware of if you fall into one of these categories so you know if you’re a candidate for the particular type of immunotherapy that can be added to chemotherapy. There are two different ways to test for if a patient is a candidate for immunotherapy and they are both tests that can be done on biopsies of metastatic or cancer recurrent sites in the body.

They can also be sent off of original breast cancer tumors. And what we now know is that for patients who do not have markers that suggest immune activation or where the immune system would be responsive to immunotherapy the addition of that extra therapy really does not help to improve cancer control over chemotherapy alone. And I think that’s a really important topic because everyone is very interested in immunotherapy, but it does have side effects of its own and it can actually be lasting side effects in terms of inflammation in organs like the liver, the colon, and the lungs.

And then, the third presentation that I’d like to bring up is the IPATunity study, which looked at the addition of a targeted therapy called ipatasertib to, again, chemotherapy for the first treatment of metastatic triple-negative disease.

And so, this is getting into an area of targeted therapy for metastatic triple-negative disease. And again, only looks at patients that have a particular marker that suggests sensitivity to this drug. And those are certain genetic markers, predominately changes in a DNA marker called PIK3CA. In this study, we actually found that there was no benefit for the targeted therapy added to chemotherapy for patients that had that genetic mutation, which was different than what was seen in earlier studies of the same combination. So, I think there’s more work to be done and it’s probably too early to say that this targeted therapy will not be used in treatment of metastatic breast cancer.

But what all of these research studies show together is that metastatic triple-negative cancer is not really just one disease. It’s very clear that within that one name, there are multiple different patient types and tumor types that need to be cared for differently.

And so, again, I think the theme from these abstracts and these research presentations is that we have to look into the right therapy for the right patient at the right time, which largely involved DNA-based testing.

So, when patients are thinking about their treatment options and how to best help with their providers about what treatment options exist for them, I think it’s important to recognize the type of testing that may be advantageous in your cancer type.

And so, for all metastatic breast cancer patients, we really recommend that they’ve had genetic testing to look for DNA changes like BRCA mutations that will lead to treatment options. For metastatic triple-negative disease, it’s important to make sure that you’re providers are testing for PDL1, which would make you a candidate for immunotherapy. And then, the more we learn about clinical trials, the more we have options for patients that have had drug-based DNA or genome-based testing. So, that’s an important term for patients to become familiar with is genomic testing.

And I think when you bring that up with your providers, they’ll know what you’re talking about and they’ll know that what you’re potentially interested in is new targeted therapy for the cancer that may either come in combination with chemotherapy or as a standalone treatment option. If you don’t have those options that are available, and FDA approved basis for regular routine patient care, there is always the option of clinical trials.

And so, if that is something that you’re interested in, genomic testing will often open the way. So, I think as you’re writing notes when you’re talking to your providers, you might wanna jot down whether or not you’ve had genetic testing and whether or not you’ve had genomic testing in the past, as both of those things will help potentially address all of your treatment options.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

Breast Cancer Research News: SABCS Conference Highlights

Breast Cancer Research News: SABCS Conference Highlights from Patient Empowerment Network on Vimeo

Expert Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS). Dr. Kruse provides an overview of what this news means for early stage breast cancer patients, along with her optimism about the future of breast cancer research and treatment.

Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.

See More From The Pro-Active Breast Cancer Patient Toolkit

Related Resources:

 

Transcript:

Dr. Kruse:                   

The San Antonio Breast Cancer Symposium is a national meeting with international presence that combines all of the latest data from research on breast cancer topics. It involves clinical research, basic science research, a lot of patient, and patient advocate support.

And the idea here is to bring together all the different disciplines that are involved in breast cancer patient care and do the best information and knowledge sharing that we can each year.

This year’s San Antonio Breast Cancer Symposium brought us a lot of interesting research focusing on early-stage breast cancer patients. I think the most important presentations that were given had to do with the treatment of high-risk lymph node-positive hormone receptor-positive breast cancer patients. And these were really across three abstracts. The first abstract of interest was the Monarch E study, which looked at high-risk women with hormone receptor-positive HER2-negative breast cancer and optimizing their medical therapy.

So, these patients are typically treated with anti-estrogen therapy and the idea of the research that was presented was if the addition of a targeted medication called abemaciclib or Verzenio could help to improve outcomes for women in this population. And what the trial found was that for women who took their anti-estrogen therapy for the usual length of time but added the abemaciclib for the first two years of that anti-estrogen therapy that there is actually an improvement in cancer-free survival time or an improvement in cure rates. And this was important because these women may not benefit from chemotherapy, as we’ll talk about in another abstract.

An addition research presentation that was given that goes alongside of the monarch E study was that of the Penelope B study. And the Penelope B took a similar population to what was studied in Monarch E. So, again high-risk women with lymph node-positive, hormone receptor-positive, HER2-negative breast cancer; however, in Penelope B, all of these patients had received pre-surgery chemotherapy.

And in order to qualify for the trial, the patients had to have some cancer that remained in the breast or the lymph nodes that was taken out at the time of their surgery. So, these are patients clearly in which chemotherapy did not do the whole job in terms of getting rid of the cancer. And again, the idea here was to add a second targeted therapy to the endocrine therapy to see if that would improve cancer-free time for patients in this population. The difference in this study was that the partner targeted therapy that was used was a drug called palbociclib or Ibrance.

And the drug was actually only used for one year in combination with endocrine therapy rather than two years as was used in the Monarch E study with abemaciclib. Interestingly enough, the Penelope B study was a negative study, meaning that it did not improve the cancer-free survival time for women who took the endocrine therapy plus targeted therapy compared to women who took the endocrine therapy alone.

So, I think that these are two interesting studies that one should look at together. And clearly, may impact what we do for the treatment of high-risk hormone receptor-positive women moving forward. The third abstract that I’d like to touch on that I think was important for women with early-stage breast cancer is the RxPONDER study, also known as SWOG 1007. And this study again was looking at lymph node-positive, hormone receptor-positive HER2-negative breast cancer patients and seeing if the addition of chemotherapy helped to improve their cancer-free survival compared to anti-estrogen therapy alone.

And so, in this study, while the study population was all women with early-stage breast cancer, meeting the one to three lymph node-positive criteria, you really have to break the results down into the results for pre-menopausal women and the results for post-menopausal women.

Because overall the study really showed no significant benefit to chemotherapy on top of endocrine therapy for women in this population; however, we did see that there was a clear benefit for women who were pre-menopausal. So, the women who had no benefit from chemotherapy were largely those who were post-menopausal, while those who were pre-menopausal derived extra benefit from chemo on top of anti-estrogen therapy. And that benefit depended on what the Oncotype recurrent score was.

With women that had the lowest of the recurrent scores having a chemo benefit of about three percent going up to over five percent for women who had Oncotype recurrent scores in the mid-teens to 25 range. In both of these groups, women who had Oncotype scores of 26 or above would have chemotherapy as per our standard of care.

So, I think that this abstract is important because in the past women who had lymph node-positive breast cancer generally received chemotherapy no matter what. More recently we’ve understood that not all of these cancers are created equal and that some cancers may not actually have benefit from chemotherapy in terms of improving cure rate. So, this study is a big step forward to help individualize and specify the treatment for women with lymph node-positive, hormone receptor-positive, HER2-negative early breast cancer.

I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.

I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.

I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.                                   

It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.

 

Confusing CLL Terms Defined

Confusing CLL Terms Defined from Patient Empowerment Network on Vimeo.

What is FISH testing? What is IGHV? Physician assistant Danielle Roberts explains the meaning of these often confusing terms and their role in disease monitoring and CLL treatment decisions.

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

See More From INSIST! CLL


Related Resources

 
Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Could CLL Be Inherited?

Could CLL Be Inherited?

What Should You Know About CLL Genetic Testing?

 

Transcript:

Danielle Roberts:    

So, a FISH test is a test from your either blood in your bloodstream or from your bone marrow biopsy. And it stands for florescence in situ hybridization. And this is a highly specific test that looks at the chromosomal changes with CLL. This can be done in the peripheral blood or in the bone marrow.

And it’s important to remember that when we consider genetic testing and CLL, we aren’t talking about inherited genes, but the abnormalities that occur within the CLL itself.

So, an IGHV test is a mutational test that stands for the immunoglobulin heavy-chain variable gene locus. This can also be done in the peripheral blood and the bone marrow biopsy. This test can help us determine treatment options as well as help with determining what high-risk features there are for your particular disease.

So, 17p deletion is the deletion of the long arm of chromosome 17. This can be seen at initial diagnosis or it can be acquired later on in disease progression. So, for all patients this is one of the more important tests that if you’re going to ask your doctor if you’ve had, you should ask at a diagnosis. If you’ve relapsed later on, you should ask again if that mutational status is being observed or checked in your follow-up testing.

17p deletion is something that can be acquired along the course of your disease progression. It is not always seen at initial diagnosis but can be acquired if you are relapsed or refractory. Therefore I recommend that every time you’re having peripheral blood for flow or if you’re having bone marrow biopsies, especially if it’s for treatment planning purposes, you should advocate to your physician team to make sure that this test is being performed as it will drive – or as it can drive treatment decision-making.

Practical Advice for Coping with a CLL Diagnosis: What’s Next?

Practical Advice for Coping with a CLL Diagnosis: What’s Next? from Patient Empowerment Network on Vimeo.

After receiving a diagnosis of chronic lymphocytic leukemia (CLL), patients can have a variety of concerns. Physician assistant Danielle Roberts shares her top three pieces of practical advice for patients to move forward. 

Danielle Roberts is a physician assistant with the Bone Marrow Stem Cell Transplant (BMT) team at Winship Cancer Institute at Emory University. Learn more here.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

 
Confusing CLL Terms Defined

Confusing CLL Terms Defined

What Is YOUR Role in CLL Treatment Decisions?
What Is YOUR Role in CLL Treatment Decisions? 
Targeted CLL Therapy: What Are the Side Effects?
Targeted CLL Therapy: What Are the Side Effects?

Transcript:

Danielle Roberts:       

My recommendations if I could have three things that I would recommend all patients with CLL do, 1.) It would be to have your financial information kind of in line or know how to find that. Unfortunately, a lot of the medications that we use to treat disease are incredibly expensive. However, there are really good patient assistance programs out there. In order to be able to apply for patient assistance programs you do have to submit your financial information to them. So, I would really suggest that you have access or be able to know where to find that.

I would also really recommend you talk to your family members in so that they understand what’s – where you are with your treatment and what’s going on. As a physician’s assistant, one of the questions I generally get is when they bring in a family member or somebody who has not been along in their journey for their treatment, if they’re asking lots of questions, that was and kind of diagnosis. So, I encourage people to talk about that at the beginning, so everybody understands where they are and what the plan for the future is going to be.

And then the last thing that I always recommend to everybody is to understand that not one treatment is right for everybody. Understand that things are going to change and we’re all going to grow and we’re going to learn with the process. But if you don’t tell your healthcare team what’s going on, we can’t help you. And we say that there is no such thing as a bad question to us. You’re never bothering us. That’s what we’re here for. Rather you tell us, even if it may be something you feel is minor, ahead of time so that we can address it and work towards a solution, if there needs to be one.

How an MPN Patient and Caregiver Make the Most of Life

How an MPN Patient and Caregiver Make the Most of Life from Patient Empowerment Network on Vimeo.

 MPN Network Manager Summer who lives with myelofibrosis and her care partner Jeff discuss the importance of not putting your life on hold. Summer continues to work on her comedy routine and Jeff has been enjoying ZOOM photography classes. Watch to hear how else Summer and Jeff continue to make the most of life despite any challenges that may present itself. 

“We have not put our lives on hold during COVID or as a result of Summer’s MF diagnosis. Our challenge to you is to do the same.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

How Could Emerging CLL Treatments Impact Your Care?

How Could Emerging CLL Treatments Impact Your Care? from Patient Empowerment Network on Vimeo.

In the changing world of chronic lymphocytic leukemia (CLL) research, how can emerging treatments impact care for patients? Dr. Jennifer Woyach shares information about targeted therapies, immunotherapy and clinical trials, and explains why she is hopeful about the future of CLL care.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


Related Resources

 

What Does It Mean to Have High-Risk CLL?

What Is YOUR Role in CLL Treatment Decisions?

Could CLL Be Inherited?

 

Transcript:

Katherine:                  

That’s a good point. Are there emerging treatments patients should know about?

Dr. Woyach:               

Yeah. There are a lot of really exciting things going on in CLL right now. And CLL is a disease that has been completely transformed in the last five to 10 years and is poised to do so again. So, I mentioned these therapies that we use for frontline treatment, and there are clinical trials now combining them together. So, these agents work so well on their own. Are they going to be even better if we add them together?

There are also newer target therapies, different targets that we are finding increasingly important in CLL, as well as a modality called CAR-T cells, which most people have heard of where we take patients’ own T cells, modify them in the lab and then, give them back with a goal of getting those cells engineered to kill CLL cells.

These are all things that are not ready for prime time in CLL yet but are available in clinical trials. And I think one other thing I’d really like to put a plug in for is clinical trials in CLL, because right now we’re at a point where our therapies are really very good. But if people just do those treatments, we are never going to figure out which one is the best or figure out, for specific types of patients, which treatment is the best. And so, I advocate that any of my patients that are eligible for clinical trials should consider them, because that’s how we make progress in the disease from an altruistic sense.

That’s how we make things better for everybody. That’s one way a patient can think about it. But more personally than that, being in a clinical trial gives somebody the opportunity to get a treatment that they otherwise wouldn’t get that might be better than our standard of care therapies.

Katherine:                  

Dr. Woyach, as a researcher in the field, why are you hopeful?

Dr. Woyach:               

I am so hopeful in CLL because there is so much that we’re learning every day about the biology of the disease, about specific mutations and other genetic factors that are important and really can be targeted by new drugs. Paralleling our understanding of the disease, there also are many more techniques to make these targeted therapies that kill cancer cells selectively while sparing normal cells and making our drugs even more tolerable.

And I think both the targeted therapies like this and the potential of combining them, figuring out sequences that are best but then, also these newer modalities where we, actually, get the immune system involved like the CAR-T cells. They’re making CAR NK cells now. And just lots of other strategies that could be used together with targeted therapies to, hopefully, cure the disease.

Targeted CLL Therapy: What Are the Side Effects?

Targeted CLL Therapy: What Are the Side Effects? from Patient Empowerment Network on Vimeo.

What are common side effects of chronic lymphocytic leukemia (CLL) targeted therapies? Dr. Jennifer Woyach discusses side effects of specific targeted therapies and the importance of reporting any issues to your doctor for optimal quality of life.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


Related Resources

 

What Should You Know About CLL Genetic Testing?

What Tests Should CLL Patients Insist They Receive?

Could CLL Be Inherited?

 

Transcript:

Katherine:                  

If there are side effects, what would some of the side effects be for these targeted therapies?

Dr. Woyach:               

So, it depends on the drug. So, BTK inhibitors, specifically, ibrutinib can cause some joint and muscle pain, some rashes, diarrhea, heartburn. Those are things that tend to, if they’re going to happen, usually happen earlier on in treatment and tend to get better over time. It can also cause high blood pressure. It can cause an abnormal heart rhythm called atrial fibrillation.

So, those are things we watch out for with ibrutinib. Acalabrutinib really has all of the same side effects but for many of them, they don’t occur as often. And then, the tradeoff there is ibrutinib is given once a day and acalabrutinib is given twice a day. With venetoclax plus obinutuzumab with that regimen, you get a lot more hematologic toxicity. So, you see more lowering of the good white blood cell count, which is, obviously, a risk for infections. That regimen comes with a risk of something called tumor lysis syndrome, which is where the cells can break down too quickly and cause damage to the kidneys, damage to the heart.

It can also cause some GI disturbance like some diarrhea, nausea, abdominal pain, things like that. I see there are a lot of side effects. And, of course, when I’m talking to a patient about treatment, we go over them in more detail than that. But I think the important thing is with all of these therapies, we do have ways to manage these side effects.

One thing I think is important for patients to remember is your doctor doesn’t know you’re having side effects unless you tell them. So, we know that people have these side effects. But if you don’t tell us that you’re having diarrhea or heartburn or things like that, we can’t help with it. And we have a lot of medicines that can help these things.

 

 

 

 

What Is YOUR Role in CLL Treatment Decisions?

What Is YOUR Role in CLL Treatment Decisions? from Patient Empowerment Network on Vimeo.

What is the chronic lymphocytic leukemia (CLL) patient’s role in making treatment decisions? Dr. Jennifer Woyach explains frontline CLL therapies and how patients help guide the treatment decision that’s best for them.

Dr. Jennifer Woyach is a hematologist-oncologist specializing in chronic lymphocytic leukemia (CLL) at Ohio State’s Comprehensive Cancer Center – James Cancer Hospital & Solove Research Institute. Find out more about this expert here. 

See More From INSIST! CLL


Related Resources

 

What Should You Know About CLL Genetic Testing?

What Tests Should CLL Patients Insist They Receive?

 What Does It Mean to Have High-Risk CLL?

 

Transcript:

Katherine:                  

Dr. Woyach, what do you feel is the patient’s role in this conversation about treatment approaches?

Dr. Woyach:               

I think that, obviously, the patient is the most important part of the talk of treatment indications. Like I mentioned, sometimes we have the discussion of chemotherapy versus a targeted therapy. More often, the discussion is we have three approved frontline CLL therapies right now. We have two BTK inhibitors or Bruton’s tyrosine kinase inhibitors, ibrutinib, acalabrutinib.

And then, we have a BCL-2, venetoclax, that’s given in combination with an antibody called obinutuzumab. These are very different treatments in terms of side effect profiles, how they’re administered, how often they’re administered, just as an example. The BTK inhibitors are pills. And they’re meant to be given indefinitely. So, you start them with plans that you’re not going to stop them, unless the patient doesn’t tolerate them or they stop working. And so, with that type of regimen, you have the kind of burden of being on treatment for a long period of time.

But on the flipside, it’s very easy to start treatment. So, if you decide you want a BTK inhibitor, I write a prescription for it, it comes to your house, you start it. I usually see patients monthly for the first six months and then, we go to every three months. It’s very easy to start treatment.

The other type of treatment, the venetoclax plus with the obinutuzumab regimen, that’s the BCL-2 inhibitor with an antibody, it’s a finite therapy. So, people are treated for a year and then, they go off treatment. The flipside of that is they’re a lot more time intensive in the beginning. So, you have the IV therapy with the obinutuzumab. Venetoclax you, actually, have to ramp up the dose so patients have to come in weekly for the first five weeks, and they have to come in monthly for their infusions. So, it’s much more time intensive up front but then, you get to stop treatment. And so, those are considerations that I can’t answer for somebody.

I don’t know which one people would prefer and people prefer different things. So, we spend a lot of time talking about all of the different scenarios and what’s going to make the therapy work best for the patient.