PEN Blog Archives

PODCAST: HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges

 

The lung cancer field continues to experience tremendous growth in precision medicine. Oncologists have more tools to treat lung cancer, but access and language remains a big factor in biomarker testing. Drs. Jessica Bauman and Lyudmila Bazhenova discuss current issues in NSCLC biomarker testing, insights on how providers can explain biomarker testing to their patients and their families, and how academic centers and community physicians can work together to overcome challenges in biomarker testing.

About the Guests:
Dr. Jessica Bauman is an Associate Professor in the Department of Hematology/Oncology at Fox Chase Cancer Center.

Dr. Lyudmila Bazhenova is a Professor of Medicine at Moores Cancer Center, UC San Diego Health.

See More from the Empowered! Podcast

Transcript:

Dr. Nicole Rochester: 

Welcome to the Empowering Providers to Empower Patients or EPEP program. I’m Dr. Nicole Rochester, a pediatrician and the founder of Your GPS Doc. In this unique program, we connect leading lung cancer expert voices to discuss enhancing physician patient communication and share decision making in lung cancer care. Some of the questions we’re going to talk about today include, what are the major successes and challenges around biomarker testing? How can experts in academic settings work with those in community settings to overcome challenges in biomarker testing? And also, what are the best practices for discussing and explaining biomarker testing to your lung cancer patients? 

Thank you. I’m thrilled to be joined today by noted lung cancer medical oncologist, Dr. Jessica Bauman from Fox Chase Cancer Center in Philadelphia, and Dr. Luda Bazhenova from UC San Diego Medical Center. Thank you both for joining us in today’s round table.

Dr. Jessica Bauman:

Thanks for having us.

Dr. Lyudmila Bazhenova:

My pleasure should be here as well.

Dr. Nicole Rochester:

Thankfully, research in lung cancer is ongoing and remains at a fast pace, but with that pace often comes challenges of keeping everyone up to date, providers included. So we have a lot to cover today. So I want to start by just providing a general overview of biomarker testing and lung cancer therapy. So I’m going to start with you, Dr. Bauman. Can you discuss some of the general guidelines for…sorry. So I’m going to start with you, Dr. Bauman. Can you discuss existing guidelines for genomic biomarker testing for lung cancer?

Dr. Jessica Bauman:

Sure. I’d be happy to. So genomic and biomarker testing in general has really been at the forefront of many conversations about lung cancer over the course of the last decade or longer, 20 years. Because it has really changed our approach to patient care and individualized the way that we treat and make decisions about patients with lung cancer. And so what this means, is for every single person who has a new diagnosis of lung cancer, essentially everybody is now recommended to have molecular testing on their individual tumor samples to help us decide what treatment decisions are the best for them. Now, it used to be that this was really only recommended for patients with a new diagnosis of metastatic lung cancer, but now we’re seeing this really influenced decision-making earlier on than the metastatic setting.

And so we now have treatment approaches that change based on molecular testing for early stage one cancer as well. And so, although it used to be more of a later stage, necessity, now we really…we really now need the information sooner than ever before. And when we say molecular testing, this is really looking at the individual tumor and what is potentially driving the cancer to grow. So to look for oncogenic drivers that change treatment. So I call this with my patients, I call this the alphabet soup. But this includes, EGFR mutations, ALK, ROS1, RET, HER2 as well as many others that influence the potential treatment options that we have for our patients.

Dr. Nicole Rochester:

Awesome, thank you. That is a great overview. Do you have anything to add to that, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:  No, I think that was very nicely summarized. I think an important thing is that we have to test, we cannot guess. We have to know what our patients…what mutations our patients have, and then we have to know what to do with that. That’s kind of a second part of the question.

Dr. Nicole Rochester:

Wonderful. So it sounds like this is really kind of revolutionary in the sense that, like you said, we can now provide very individualized treatment for lung cancer patients. So I’d love for the two of you to talk about some of the successes in testing over the past decade for lung cancer patients. And we’ll start with you this time, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think our successes actually became our challenges. We have seen an explosion of targetable oncogenic drivers. If you look at the FDA approvals for oncogenic driven therapy, we have a first approval in 2004 and then there was kind of a silence for almost a decade. And then starting in 2014, every year we now have three or four drugs approved. And also those drugs are being approved for the same indication, but different companies. So I think it is very hard for a practicing oncologist who have diseases other than lung cancer to actually keep up with exploding information that they need to know. And I think that’s why I say our success is our challenge, our success is that we are now in lung cancer have 10 oncogenic drivers that we have treatment for.

Our challenge is to remember that there are 10 oncogenic drivers. It’s becoming even more complicated because if you take, for example, an EGFR story, we don’t just need to know that the patient has an EGFR mutation. We need to know what type of EGFR mutation we have, that patient has. And it is no longer three categories. Like even looking in atypical mutations, we now separate out so-called pack mutations, which are treated differently than anything else. So it’s difficult for a practicing physician, or mid-level practitioner to remember what even to do for lung cancer, but they have to do a breast cancer and colon cancer and everything else. So it is a challenge currently.

Dr. Nicole Rochester:

I appreciate you highlighting that. A lot of times it’s like a double-edged sword, right? What are your thoughts, Dr. Bauman, and in terms of the successes as well as some of the challenges?

Dr. Jessica Bauman:

So I absolutely echo what Dr. Bazhenova is saying in terms of the amazing successes, right? We now have for multiple different populations, we have an oral medication that can treat their cancer with the hope that it keeps that cancer under control for many, many months and for some people even years. And I think the challenge is absolutely keeping track of all of those different mutations and then what is actually targetable. And if you have, is it a mutation? Is it a fusion? Is it… What exactly is it that allows you to then use that targetable therapy? Is certainly one challenge. The other challenge is getting that information as soon as we can get it. So you can imagine, so somebody comes in to see me with a new diagnosis of metastatic lung cancer, right? Their biopsy was done say two weeks at a different hospital, and their first scan was done six weeks ago.

So now they’re already six weeks into the concern of a diagnosis of lung cancer, and they’re symptomatic and they come to see me and say, what am I going to do? And we have to get all of that information as fast as we can, because it completely changes the way we’re going to treat them. And so creating systems, in particular reflex testing systems such that this is sent immediately so that by the time they’re seeing me we already have this information is really important. But that, I think that is sort of at its infancy. At Fox Chase, we’ve worked on our sort of reflex system for a very long time. And it’s still, every time there’s a new approval, it seems like it changes slightly or there’s a new system that we have to think about it. But at the end of the day we also…one of the challenges is making sure that we streamline the processes in which we get this information in the best way we can because tissue can be limited.

There is a lot, making sure that you actually get adequate tissue sampling to be able to test for everything that you need to test for is really important. Then figuring out where to send the testing. Many academic centers have internal panels that they send for molecular testing, but there are so many different companies that advertise doing some kind of molecular testing. And so knowing which of those companies to consider using, what they’re offering, which ones offer RNA sequencing, for example, because that is a particularly important aspect, in addition to DNA sequencing that we need. And so sort of keeping track of all of that is particularly challenging. And then I think the last thing is, I think it’s the needing this information earlier and earlier in a diagnosis.

Dr. Jessica Bauman:

And so once upon a time, it really was the medical oncologist who could drive this and run the show because it was really, we needed it for somebody with metastatic disease, right? And we’re sort of the captains of the ship per se, when someone has a new diagnosis of metastatic disease. However, now there’s adjuvant therapy for patients who have EGFR mutations after a surgical resection. And so we need, the surgeons also need to really understand that we need this information. And they often are now getting these tests before a medical oncologist even sees the patients. And so it isn’t just medical oncology, it’s also now, it’s going into multiple different specialties who also need to understand what these mutations mean and what to do about them, and then how it influences therapies.

Dr. Nicole Rochester:

Wow, you all have really done such a great job highlighting both the successes and the challenges. And it’s a perfect segue into my next question because you just alluded to, Dr. Bauman, this idea of academic medical centers and the challenges that you all are facing in cancer centers. And we know that many patients are receiving their care in the community, and in fact, sometimes it’s this dichotomy between what happens in the academic setting and the community setting that can actually create and perpetuate disparities. So my next question really has to do with how can lung cancer experts in academic settings partner with, collaborate, work with those experts in the community settings to overcome some of these challenges that you all just talked about as it relates to biomarker testing? So I’ll start with you, Dr. Bauman.

Dr. Jessica Bauman:

So, that’s a million dollar question. I do think there are many opportunities of educational opportunities to continue to educate everybody in terms of lung cancer. I think lung cancer is a very common diagnosis. And so we know that many community providers absolutely deliver excellent lung cancer care. And so making sure that there are many opportunities for them to participate in, either citywide or nationwide educational opportunities for updates on lung cancer. We have in Philadelphia, we actually have an academic, sort of a multi-multidisciplinary, multi-institutional tumor board, thoracic tumor board that happens quarterly, which we invite community providers to to discuss some of the latest literature. Certainly our emails are always available, so we can always bring there, certainly we get many different questions that come in from other providers, but I’m sure we could do a better job. And I’m very curious to hear what Dr. Bazhenova thinks about this as well, because I think it is such a huge challenge.

Dr. Lyudmila Bazhenova:

I agree with you fully, and I think my two cents here is I think we have to recognize and accept that one size does not fit all in this situation. And whatever works for my institution is probably not going to work for a smaller community practice. But as long as we recognize that this needs to be done and each community practice can work with their stakeholders in the molecular testing pathway, like molecular pathologists, regular pathologists, surgeons. Each institution has power to establish their own internal pathways. Would it be what Dr. Bauman says, reflex testing, which is probably not going to be an option for a majority of the community setting because they do not have their own NGS. It’s going to be a sendout. Or like in our institutions, we don’t have a reflex molecular testing. It’s us medical oncologists who are ordering it, but we kind of get it on the backside.

We can get the patient in within 24, 48 hours from the consult was put in. And so that’s why we didn’t do the reflex testing, but as the reason we did it is because we sat down as a team and we decided this is what works for us. So I encouraged the community groups again, sitting down saying, okay, the task in hand is lung cancer patient has to have molecular testing at the time of the diagnosis. How are we going to get it and how are we going to make sure that we are not missing, you know, have some kind of internal QI, and make sure you know what your practice is doing rather than assuming that your practice is doing molecular testing for all the patients.

Dr. Nicole Rochester:

Thank you so much. Did you have something you wanted to add, Dr. Bauman?

Dr. Jessica Bauman:

Yeah, I was just going to say, and I think that so many things are happening before they ever see us, that includes a pulmonologist is going in and doing a biopsy, right? Or an interventional radiologist is getting a biopsy. So it has to start way upfront of the actual diagnosis because the, what you want to try to get to capture the information as soon as you can, right? So you don’t want to get just an FNA biopsy, for example, of a liver lesion knowing that three weeks later what you really need is a core biopsy, right? So it really, the path you do, it involves so many different stakeholders when you’re having conversations about how to streamline this for your own institution and practice.

Dr. Nicole Rochester:

So both of you have really touched on the challenges even among physician-to-physician communication and the fact that by virtue of the diagnosis and the treatment, there’s lots of different specialists involved, the timing of which can be very crucial. And so shifting to physician patient communication, which we know is fraught with even more challenges. Can you each share some examples from your own practice around improving physician patient communication that may serve as exemplary for providers that are watching this program? And we’ll start with you, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think it also has some challenges, because in the current environment of practicing medicine, we are, as physicians, we are pushed to see more patients, it’s all about productivity. So when you do that, something has to give. And a time that we can spend with the patient is limited. And I think it’s important, for myself, as a practice, I have the same, I call it spiel that I give to all my patients. It’s the same picture I write down when I speak and I give that paper to the patients. I’ve had, you know, created some preprinted things that I used to give to the patients. Don’t do it anymore. But I think that’s another thing, have some kind of information that is a patient level that I can give to the patients.

And I think we have to educate the patients as well, either by ourselves or using the platforms that we are exhibiting here, that is outside of our primary institutions. And to make sure that the patients are aware that each one of them who have a stage IV lung cancer, as well as early stage lung cancer needs to be tested for the molecular testing. And kind of put it also have the patient question the physician, did you do that? Was that test done? That’s one part of information.  And I think the second part is, we do have to do better in allowing our patients to get a faster access to us. And we kind of accept the fact that we are going to be working after hours. When the clinic is over, that’s where I’m going to go to my charts, and I’m going to answer my patient’s question.

It’s kind of an intrinsic, is the work of the physician. Hours is…unfortunately, doesn’t really count. There is no limit to that. So whatever it works, like having a nurse educator. We have in our institution, we have…we call her tissue coordinator, but she’s the person who can actually make sure that the tissue is done, she can also make sure that reports are sent to the patient and make sure that patient has ability to ask questions of somebody. And I think the EMR, electronic medical record, it’s kind of a love-hate relationship, I think, with all of us. But one thing that I find it made it much easier for me is to communicate with my patients using my chart and this ability to release the result to the patient by one click of a button, that saves time for me so I can spend that time to actually visit the patient and explain to the patient what needs to be done.

Dr. Nicole Rochster:

That is awesome, thank you. Do you have anything to add, Dr. Bauman?

Dr. Jessica Buaman:

In terms of challenges of discussions with patients?

Dr. Nicole Rochester:

Yeah, and best practices. So Dr. Bazhenova mentioned using portal, which I think is awesome, and really educating patients in a way that allows them to ask questions of their providers. Any other insights or tactics that you use?

Dr. Jessica Bauman:

Yes, yes, I agree that I think that this overall requires a lot of education, and especially when patients come in and they want to know tomorrow or yesterday, actually, what they’re going to get for treatment and what we’re going to start with. And so telling them that actually we still can’t decide for at least another week or two, that in of itself can be challenging. I think the other piece of this that’s always important is, in general, when we’re doing molecular and biomarker testing, we’re looking for changes in the tumor, we’re looking for what we call somatic mutations, but there is also the second concern where on rare occasion, issues with molecular testing can bring up issues with germline testing, meaning some abnormality that’s found that may impact their own familial risk for cancer, and so that of course requires a lot of thought and careful education as well, in addition to the treatment decision-making that we’re really ordering the test to decide upon.

Dr. Nicole Rochester:

Really good point. Because if there’s a familial aspect, like you said, that brings up an entirely another layer of discussion and worry and concern as well. Well, Dr. Bazhenova I know that you lead a weekly tumor board for lung cancer, and I’d love to learn more about some of the things that you can share that may be insightful for other lung cancer experts as a result of the tumor board.

Dr. Lyudmila Bazhenova:

At UC San Diego, we actually have two tumor boards where lung cancer patients can be presented, one is just a traditional multidisciplinary thoracic tumor board, which is attended by a medical oncologist surgeons, radiation oncologist, pathologist, interventional people, clinical trial coordinators. And I think this is not unique to UC San Diego. The multidisciplinary tumor boards are available in all major academic institutions. And I think lung cancer care is becoming more and more multi-disciplinary, especially with the new advances of new adjuvant to chemo immunotherapy and controversies we still have to this point in management of stage three disease. And I think what I find in a multidisciplinary tumor board…

Because I think what I want to build upon as Dr. Bauman statement that she said that times of an essence here, and I think the multi-d tumor board help us make medical decisions on the spot rather than me sending a patient to see a surgeon or sending a patient to see radiation oncologist and sending patients to see interventional radiologist, and then the IR is telling you, “Oh, we can’t do that biopsy, you gotta send it to the pulmonologist.” I think that actually streamlines the patient care. The second tumor board what we have, that maturity of the lung cancer patients actually don’t get presented there, it’s a molecular tumor board. And the reason why we don’t present majority of the lung cancer patients there because management of antigen-driven lung cancer is pretty straightforward.

I think only presentations I would ever make there if they have an unusual mutation that I can’t find any information about, then I need the help of our molecular pathologist, but it is a good avenue for those weird rare molecular abnormalities that I’ve seen in other malignancies and so that is another option. And there’s actually…many institutions have molecular tumor boards as well. We do open our tumor board not to all communities. So we are not as good as you, Dr. Bauman. So only one community practice can join us because they’re kind of part of us, so we don’t usually…we don’t have it open to the whole community, and I think as an academic institution, we probably should strive to have an open tumor boards where everybody can join and listen and present and that’s the most important.

Dr. Jessica Bauman:

I do want to say, we don’t..I must have misspoken, we definitely don’t include community practices. So I do think that that would be a fantastic offering in the sense of some of the… I don’t know that we could do that on a weekly basis, but consider something like on a monthly basis or even a quarterly basis of a true tumor board where people can present cases in real time from community practices.

Dr. Nicole Rochester:

Awesome, yeah, I think based on everything that you all have shared, that would definitely be an added benefit for sure. So circling back to communicating with patients, you all have already shared the challenges related to productivity and the limited time that we have with patients and some of the things that you have been able to institute. I wonder if either of you or both of you have any thoughts around unique things that you’ve implemented that have allowed you to really connect and communicate with your patients in spite of these time limitations. So I know we talked about using the portal, which is an amazing resource. Are there any unique things that you all have implemented in real time, like face-to-face, when communicating with patients?

Dr. Jessica Bauman:

So I would say we did a pilot study that has not been implemented full time, and really I think we’re still working on how to best implement something like this but we did a pilot study using sort of educational materials, and this whole sort of pathway and educational system in coordination with our nurse navigators, where you could send sort of a prescription to the patient of reading material or of educational material, as they’re going along. And so, with the idea that early on that one of those prescriptions would be more information about molecular testing and biomarker testing, decision making, all of those types of things.

We did a small pilot study to incorporate that, which on the surface is fantastic but it was surprisingly challenging to do, to actually implement. And I think that was…we were doing this, again, in collaboration with one of the researchers, the nurse researchers at our institution, and we hit more barriers than expected, because I think we all, as you say, we all want to educate, we all want to make sure that our patients understand and get the information that they need, but the practicality of doing that really successfully and in a streamlined way but that’s also consistent across providers across the institution, it’s a challenge.

Dr. Nicole Rochester:

Yeah, I can imagine. Are there a chance to extend the pilot or to maybe modify it based on what you all learn from the initial study?

Dr. Jessica Bauman:

I think that that’s… It’s certainly in discussion about how to best implement something like this. Part of that is… Again, sort of systems change. The role of the clinic nurse, the nurse navigators has changed a little bit and so even how we envision implementation is going to need to shift somewhat.

Dr. Nicole Rochester:

Wonderful. What about you, Dr. Bazhenova? Any pilot studies or any other maybe tips and tricks that you employ independently?

Dr. Lyudmila Bazhenova:

Yeah, we haven’t had any pilot studies but I think the more I think about it…so the challenge of discussing those molecular testing with the patients is the fact that majority of those molecular testing discussions happen in stage four patients and majority of those discussions happen during the first visit for a patient with stage four lung cancer where we just discussed that this is an incurable cancer with limited life expectancy. And then how much does our patient actually absorb anything else we said afterwards is still remain to be seen. And I actually have seen like when I talk to the patient because they are so understandably fixated on their prognosis and survival, because it’s going to affect their lives that after that my patient asked me a question that I know I’ve discussed it already because I have my spiel.

I tell the same thing to everybody. And I think now kind of thinking about it out loud after that, during that discussion and maybe we could set up another appointment with a nurse practitioner afterwards, that after the patient kind of already digested all that information, to go over again the management of the molecular abnormalities. And one thing I actually want to highlight and build upon something that Bauman said before, that in those patients we actually usually wait for the molecular testing to come back before we start their therapy. And it is much easier to just prescribe chemotherapy immunotherapy for those patients.

But then you’re going to run into issues of toxicity because if you gave immunotherapy before you give for example EGFR TKI and some ALK TKIs, you can actually going to run into toxicity and you can permanently prevent your patients from continue on tyrosine kinase inhibitors. And so that’s why this is an information that not all oncologists, especially those who practice in a tobacco belt where they don’t see a lot of oncogenic driven patients, they might not be aware of that. And I think how do we pass that information to the physicians, and also how do we pass that information to the patients that there is an easy way, but easy way in this situation is not the right way?

Dr. Nicole Rochester:

Wow, so many competing priorities. This has been a fascinating conversation. It’s time for us to wrap up but I really want to thank both of you for offering your insight and your expertise. And I’d love to get some closing thoughts. We’ve shared, you all have shared so much about the challenges, as well as the successes, you’ve offered some insight into some things that can probably be further developed in the future. So as we wrap up, I’ll start with you, Dr. Bauman, what are some closing thoughts that you would share with the providers that are watching this program?

Dr. Jessica Bauman:

I think I would again highlight just how imperative it is to create systems early on to identify how you’re going to get molecular testing on all of your lung cancer patients, and then have a good tracking system to make sure that it’s incorporated in your notes that you have potentially a database within your practice, so that you really are aware of the different molecular abnormalities that your patients have and then potential treatment options that they have later. And that to understand that this really is a multi disciplinary approach where everybody needs to understand the importance of adequate tissue, and how it can influence decision-making, even now with somebody with a stage one lung cancer.

Dr. Nicole Rochester:

Thank you so much. What about you, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:

I fully agree with Dr. Bauman. So the one thing, kind of to add upon, as we’ve talked about before that molecular abnormalities and lung cancer becoming very complex NTRK point mutations is not the same thing as NTRK fusion. One responds to NTRK therapy and the other does not. And for every physician, you know what, if you’re using the molecular testing companies outside of your own institutions, just be aware that that molecular testing company does have a molecular pathologist on staff that you can actually talk to, and they do respond and they do reply. So if you have a mutation that you’re like, “I don’t know what that is.” Pick up the phone and call that company and they will be very, very happy to discuss the mutation with you and just highlight what is an appropriate treatment for that patient.

Dr. Nicole Rochester:

Thank you. Thank you both so much. Just to summarize, I mean, I have learned a lot which I always do in these programs, and to summarize, you all have spoken about the importance of biomarker testing, the evolution of testing and the importance and how it’s used now for not just late stage but early stage cancer. You’ve talked about the complexities associated with biomarker testing and really the need to fully adopt a multidisciplinary approach, not just as it relates to diagnosis and treatment, but even as it relates to communicating with patients and bringing in those nurse educators and those navigators and making sure that we take a multidisciplinary approach.

And you’ve also shared some insight about tips for communicating with patients, despite the time limitations that we face in the clinical environment and so I’m just really thankful for your time today. Really grateful for your expertise, and I want to thank all of you for tuning into this Empowering Providers to Empower Patients program. Have a wonderful day.

Dr. Jessica Bauman:

Thank you.

Patient-Centric Care

Tailoring Information to Meet the Changing Needs of Patients Along Their Healthcare Journey

Being diagnosed with cancer can be a frightening experience. The diagnosis can bring up a range of emotions such as fear, shock, anger, and sadness. When I was diagnosed with breast cancer, I was initially overwhelmed by the flood of information that came my way. It seemed like there was so much to learn about the disease, its treatment options, and the potential outcomes. I found that trying to process all this information while dealing with the emotional impact of the diagnosis was incredibly challenging. It was difficult to know where to start or how to make sense of it all.

When making decisions about cancer treatment, it’s important to take your time, get organized, and be informed. Breast surgeon, Dr. Deanna Attai of the David Geffen School of Medicine at the University of California Los Angeles recommends that patients approach their appointments with a clear plan and bring along a trusted friend or family member if possible.

Having someone you trust with you during appointments can help provide support, ask questions, and take notes on important information that you may not remember later. But if you’re unable to bring someone with you, Dr. Attai suggests requesting a recording of the consultation so that you can review it later and focus solely on listening during the appointment.

Sorting through information and making treatment decisions can be overwhelming. It’s important to take the time to do research and ask questions of your healthcare team. Don’t be afraid to ask for clarification or more information if needed. The more informed you are about your options, the better equipped you will be to make the best decision for you.

It’s also helpful to stay organized and keep track of all the information you receive. This can be done by taking notes during appointments, keeping a binder or folder with important documents and test results, and creating a list of questions to bring to your appointments. By staying organized and informed, you can feel more in control of your healthcare journey and make decisions with confidence.

Changing Information Needs

As my own cancer journey progressed, my information needs changed. Initially, I focused on understanding my diagnosis and treatment options. During treatment, however, I became more interested in coping with side effects and managing the emotional toll of a cancer diagnosis.  It was at this point that I discovered that the information provided by healthcare professionals didn’t always keep pace with my changing needs. This is when I turn to the internet to seek out more information.

While there is a wealth of health information available online, it’s important to approach it with a critical eye. Not all sources are trustworthy or accurate. That’s why it’s crucial to learn how to evaluate the information you find online. This previous article How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you.

It’s important to remember that not all information is relevant to every patient, and what works for one person may not work for another. That’s why it’s essential to discuss what you find online with your healthcare team and ask them to help you put the information into context for your particular situation. They can help you sort through the information and determine which sources are credible and relevant to your needs.

Information Is Power

As a patient, I know that information is power. Feeling empowered and informed throughout my healthcare journey has been crucial in helping me make the best decisions for my health in line with my own personal values and needs.  For example, when I was diagnosed with breast cancer, the information that was provided to me wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease. It’s crucial that healthcare providers take the time to understand the unique needs of their patients and provide tailored information that helps them make informed decisions about their healthcare. Research has shown that when healthcare providers provide the right information at the right time, it increases the patient’s ability to have a more active role in decision-making.

Information and Shared Decision Making

Information plays a critical role in shared decision-making (SDM). In shared decision-making, patients and healthcare providers work together to make healthcare decisions. In order to achieve this, patients need to have access to relevant, accurate, and understandable information about their healthcare options. Providing patients with this information in a non-judgmental, unbiased, and clear manner is the responsibility of healthcare providers. It is important to provide information on the potential benefits and risks of various treatment options, the likelihood of success, and any possible side effects of medications or procedures. SDM should also consider the patient’s personal circumstances, preferences, and values.

It is the responsibility of healthcare providers to ensure that patients understand the information they receive. This may involve using visual aids, providing written materials, or using plain language to explain complex medical concepts. It is also important to give patients the opportunity to ask questions and clarify any misunderstandings they may have.

One of the key benefits of providing information in shared decision-making is that it empowers patients to take an active role in their healthcare. When patients are informed and engaged, they are better able to make decisions that align with their personal goals and preferences. Research studies have shown that patients are more satisfied with their care when they are more engaged and involved in decision-making. Furthermore, patients who are actively involved in decision-making experience less decisional conflict. Decisional conflict refers to feelings of anxiety, uncertainty, and doubt that patients may experience when making a healthcare decision. Including patients in decision-making can reduce negative emotions and improve patients’ overall well-being.

Conclusion

It has been many years since I received my diagnosis of breast cancer and as I reflect back on the journey I have taken to becoming a patient advocate, I can see how the sources of information I received helped me progress along the way.

In the beginning, I relied on information from my doctors, followed by my own research on the Internet, and then finally connecting with fellow patients online. I gained confidence as I learned more about my disease and treatments, and now I try to help people who are going through a similar thing.

As patient advocates,  I firmly believe that it is our responsibility to ensure that all patients receive information that is timely, accurate, and easy to understand, to help them make informed decisions. We, as cancer patients, have accumulated a wealth of valuable information and knowledge through our personal experiences, and it’s crucial that we share this knowledge generously with those who are now starting their own patient journeys.

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

 

How can you thrive with prostate cancer? Dr. Tanya Dorff discusses prostate cancer treatment and developing research, side effect and symptom management, and shares advice and resources for coping with emotional issues.

About the Guest:

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope.

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 tools to help you navigate life with prostate cancer. Before we meet our guest, let’s review a few important details. The reminder email you’ve 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, let’s meet our guest today. Joining me is Dr. Tanya Dorff. Dr. Dorff, welcome. Would you please introduce yourself?

Dr. Dorff:

Thank you. Hi, I’m Tanya Dorff. I’m a medical oncologist and section chief of the genitourinary cancer program at City of Hope, which is near Los Angeles, California.

Katherine:

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

Dr. Dorff:

My pleasure.

Katherine:

Like all of the webinars in our Thrive series, we start with the same question. In your experience, what do you think it means to thrive with prostate cancer?

Dr. Dorff:

Well, that’s a big question. As a medical oncologist, my job is to try to strike a balance between cancer control and quality of life, and I guess that’s how I would put thriving with prostate cancer. It’s not always just about what is the PSA doing, but it’s also about, ‘How are you getting around your day-to-day life activities, and are you able to do the things you enjoy?’ So, treatments can be very effective. They can also have significant side effects, and we spend a lot of time day in and day out trying to help men strike a good balance.

Katherine:

Thank you for that, Dr. Dorff. Let’s move on to how prostate cancer is treated. This webinar is mainly focused on advanced prostate cancer. But before we get into treatments for more advanced disease, let’s do a quick overview of early-stage prostate cancer options. First, some prostate cancer patients are often put in active surveillance. What does that mean?

Dr. Dorff:

Active surveillance is different than what some people think it is. So, some people think it means we’re not going to treat the cancer, that we’re just going to let it take its natural course. It’s actually quite active, as the name implies. We’re really trying to get to know a person’s cancer and understand whether it is a cancer that will ultimately need to be treated, in which case we will intervene with definitive treatment, whether that be radiation or surgery, but the goal is to find those patients whose cancer is not very aggressive and may never need to be treated so that they can avoid the possible risks that come from definitive local therapy.

Katherine:

So it’s more like a watch-and-wait situation?

Dr. Dorff:

But it’s…I, again, view it as a little bit different than that. Watch and wait is “let’s just let it do what it’s going to do.” Active surveillance is what I call a getting-to-know-you period. Let’s understand whether these clinical features that have signaled that your cancer may be low-risk, may not need treatment – let’s see if that really plays out, let’s make sure we haven’t missed anything, and if your cancer needs treatment, we’re going to treat it.

Katherine:

Okay, that’s good to know, thank you. When it is time to start treatment, what types of approaches are available for early-stage prostate cancer patients?

Dr. Dorff:

Localized prostate cancer or early-stage prostate cancer can be cured with either surgery or radiation, and we actually view these to be equally effective options. Sometimes people have the misconception that if they’re getting radiation to treat their localized prostate cancer, they’re being relegated to a noncurative or a less effective option. It’s actually not the case. We don’t have truly good, randomized, head-to-head studies.

You can find retrospective studies, people looking back at 2,000 patients treated at this institution or that institution, and you can find a study that pretty much says whatever you want it to. You can find some that say surgery’s better, some that say radiation’s better, but in sum, we sort of view them as being equally effective options. And so, they just have different side effect profiles, and so, we often counsel patients who are considering which local treatment to receive to look at what their current urinary function is, what their goals are for their long-term function, both urinary and sexual, and use that as a guide, as well as their age, their other health conditions, and those kinds of factors. 

Katherine:

Let’s turn now to how advanced prostate cancer is treated. First, what does it mean to have advanced disease?

Dr. Dorff:

Advanced prostate cancer signals cancer that’s come back after curative intention or has presented de novo in a way that means we don’t currently have a tool to cure it. That’s at least how I view advanced prostate cancer. You could take a broader definition and consider some high-risk localized patients who need multimodal therapy, but to me, it’s really signaling a shift from something we’re aiming to cure versus something we’re aiming to manage, so that can manifest just as a PSA that’s rising, what we call biochemical recurrence, or it can manifest as visible metastatic disease.

Katherine:

What does “locally advanced” mean?

Dr. Dorff:

So, “locally advanced” means that it hasn’t metastasized, but it might be involving the local structures, like the seminal vesicles or the bladder or some of the regional lymph nodes, the pelvic lymph nodes.

Katherine:

How is advanced prostate cancer treated?

Dr. Dorff:

The cornerstone of treatment for advanced prostate cancer has really been hormone therapy. I think there’s a lot of negative stuff out there on the internet about hormone therapy that I think does a disservice to patients because hormone therapy is truly very, very effective and, for many men, can be quite livable.

I have patients who live more than a decade on hormone therapy, and they’re running their businesses and they’re raising their grandkids, they’re traveling, they’re running 10Ks, they’re doing all the things that they might want to be doing. That’s not to say there aren’t side effects, but hormone therapy is an effective cornerstone, and I really hope people won’t dismiss it offhand because of the negative things they’ve heard or read about it.

Katherine:

What about other treatment classes?

Dr. Dorff:

Most of our other treatments are really layered on top of hormone therapy. We may get to a point – 10 years from now, I don’t know, sometime in the future – when we don’t start with the hormone therapy, so a lot of patients come in asking about the new radiopharmaceutical, the Lutetium-177-PSMA that got approved last year, or about whether chemotherapy can be used. They can be, but they’re really layered on top of hormone therapy, so the hormone therapy is the first treatment, it’s the most effective right now, and then it’s continued as we swap out – we add a novel hormonal agent like abiraterone (Zytiga), or enzalutamide (Xtandi), or one of the others.

When that is no longer effective, we swap that out, we might use chemotherapy or the radiopharmaceutical. There’s also an immunotherapy that’s been around for more than a decade called sipuleucel-T, and now there’s the targeted therapies – the PARP inhibitors – as well for select patients.

Katherine:

Where do clinical trials fit into treatment?

Dr. Dorff:

That’s a great question. I’m so glad you asked. Clinical trials some people mistakenly believe are your last choice, like you’ve gone through every single treatment we have, and then you go to a clinical trial. That’s not the case. Some of the biggest advances in prostate cancer have been when we’ve taken drugs that work in a more advanced resistance setting, like a second- or third-line, and when we move them right up front, first-line, we dramatically amplify their benefit. We dramatically improve survival.

So, if we don’t think about a clinical trial in the first line, we’re going to miss the opportunity to not only develop those new treatment paradigms, but actually participate in them ahead of when they become the new standard of care down the road.

Another misconception that people have often about clinical trials is that they are always randomized, there’s always a flipping of the coin in assignment of different treatments, and that they may include a placebo. So, most of our clinical trials at this point do not include placebo. Because we have so many effective treatment options, we’re more and more frequently comparing either two drugs against one, so everyone’s getting at least one effective drug, or we’re not comparing at all, but everyone’s getting some new treatment or some combination of treatments when we’re working out dosing in that scenario, like a Phase II.

So, clinical trials are really an option at any stage of prostate cancer, even at diagnosis for localized disease all the way through, and truly, I hope people would consider looking at those as options because that’s where some of the most innovative treatment options are going to become available to them.

Katherine:

Yeah. What sorts of questions should patients ask their doctors about clinical trials?

Dr. Dorff:

There are a few really basic things to ask about any clinical trial that you’re being presented as an option. One is is there a randomization? Is there a treatment assignment where some people get one treatment and some people get another treatment? Another one is is there a placebo? I think if we just get those questions up front, right away, then people may be more open to hearing what’s happening in the rest of the trial.

Our informed consent documents are reviewed by ethical consultants and are really meant to inform about risks more than benefits, so the other thing to really ask the provider is what’s the goal of the trial, because that’s often not clearly communicated in an informed consent. Why did the people who designed this trial think it was a good idea? Is there science behind it, is there clinical data behind it, and do you think this is something that, in the future, could end up being the new way that prostate cancer is treated?

What is it about me that you think makes me a good candidate for this trial? What’s been your experience? – even though it’s more anecdotal, but it’s often nice to hear from a physician “I have patients on this trial, they’re having these types of side effects, they’re having these types of benefits, and we can’t know what will happen for you, but at least I have a sense of how things are going on this trial.”

Katherine:

Yeah, those are great questions. What about cost? Is that a question that patients should ask about?

Dr. Dorff:

Patients often do ask about that. Costs are really complex in this medical care landscape that we have in the United States. Clinical trials – I think there’s a lot of misunderstanding about costs. Some people think that everything is paid for by the clinical trial, which is not true.

There is a system by which we assign things that will be paid for by the clinical trial – anything that’s novel and only being done as part of the trial versus things that would be done anyway if you were not in the trial and if you were just receiving regular care, such as your PSA test, your clinic visit, your CAT scan potential, or your bone scan.

So, there are some costs that are not covered, and in that case, if a patient has an insurance plan where they have copays for a clinic visit or for a CAT scan, those aspects that are not felt to be unique to the clinical trial and are getting billed to standard insurance – that means they’re still going to have those copays, but anything that is unique, if there’s an extra set of scans, if there are extra clinic visits, those get billed to the study, and the patient should have no extra cost on that basis.

Insurance companies should view clinical trials very favorably, because they’re often getting some clinical care paid for. They’re getting extra treatment at no cost, so anything that’s new on the treatment plan in the clinical trial is free to the insurance company on the patient, it’s paid for by the study, so it’s a good deal, generally speaking, and more importantly, there’s legislation that really seeks to ensure that regardless of your insurance, you should have access to clinical trials because they are felt to be often the best way to have your cancer treated.

Katherine:

Yeah. Dr. Dorff, are there emerging therapies that are showing promise?

Dr. Dorff:

There are a lot of emerging therapies. People all over the country and all over the world are working to find new and better ways to treat prostate cancer. So, the breakthrough radiopharmaceutical last year of the Leutetium-177-PSMA is the first, but not the last, I believe, in that field. There are other antigens we can target rather than PSMA, there are other particles we can use rather then Lutetium-177, and so, there are currently clinical trials looking at different constructs.

Take a winning strategy, and then tweak it a little bit to see if you can make it even better, right? Similarly, the PARP inhibitors, which are FDA-approved for prostate cancer, are being studied in different types of clinical trials to try to expand the number of patients who can benefit from them and amplify the benefit – so, moving them earlier, increasing the types of patients who are appropriate.

And there are additional targeted therapies, like the PI3-kinase AKT inhibitors, the CDK-46 inhibitors, that are being looked at in combination with our standard hormonal drugs that I think could end up being big advances depending how the results play out. There’s a novel class of drugs, the antigen receptor degraders, which also look tremendously promising in clinical trials and are in Phase III testing in some cases, and then, some additional ones are a little earlier in testing.

And then, there’s immunotherapy, which is at the heart of my research at City of Hope. Immunotherapy offers the promise of using your own immune system to control the cancer or eradicate the cancer, so we’re looking at different strategies, from oncolytic viruses, to bi-specific T-cell-engaging antibodies, to CAR-T cell therapies in hopes that we will find something that can really induce a big, deep, durable, long-lasting remission for patients.

Katherine:

That’s really promising. What about treating symptoms of the disease itself, like bone pain?

Dr. Dorff:

Bone metastases are the predominant pattern of spread, and so, what really drives the story for a lot of our prostate cancer patients during their journey with cancer has to do with bone complications – not always pain, but unfortunately, there can be pain pretty frequently.

So, we start by trying to protect the bones early on. We know that when we use our hormonal therapies, osteoporosis can develop, so we want to avoid that. I’ve had patients where their cancer was well-controlled, but they had an osteoporosis fracture that they were miserable from, so it starts at the beginning, at protecting the bones, checking a bone density scan and/or using a bone-supportive agent like zoledronic acid (Zometa) or denosumab (Xgeva), and then, in the metastatic setting, as the disease progresses, we intensify that use of bone-supportive agents.

We sometimes end up using radiation therapy, which is primarily external-beam traditional kind of radiation, but there is also the radiopharmaceutical Radium-223 (Xofigo), which delivers the radiation kind of more internally through the bloodstream to areas of the bone that are active from the prostate cancer, and sometimes we end up needing something even like surgery, but the bones are a major part of the story.

Katherine:

Yeah. What about sexual dysfunction? Are there approaches that can help?

Dr. Dorff:

So, this is generally an area that’s managed more by urology. There definitely are things that urologists do to help patients who have lost sexual function due to prostate cancer treatments. They can involve medicines, they can involve slightly more invasive things like a suppository or an intracavernosal injection. There are also more mechanical ways, like a pump device or a penile implant, but generally, anything beyond the first level, which is Viagra, will be handled more by a urologist than a medical oncologist.

Katherine:

What is palliative care, and how can it help men with prostate cancer?

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer.

So, more and more, we’re starting to integrate palliative care earlier in the disease.

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along.

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors.

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components.

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well.

Katherine:

Yeah. Well, that leads us perfectly into the next section, which is about emotional support. Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team?

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals.

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important.

Katherine:

Many prostate cancer community members are interested in learning more about their cancer and are hungry for information. For men who are newly diagnosed, are there educational resources that you recommend?

Dr. Dorff:

There are several good patient-focused or patient-facing educational resources for cancers generally. So, the American Society of Clinical Oncology, or ASCO, runs a patient-facing website called Cancer.net.

They also produce a lot of educational materials. So, for instance, we have some handouts in our clinic rooms produced by ASCO that really just help patients understand, okay, when you’re having diarrhea related to cancer treatment, here are some strategies. So, there’s lots of good information from them. There’s also a group specific for prostate cancer called Prostate Cancer Foundation.

So, they are an organization that works a lot in funding new research in prostate cancer, but they also put out some really helpful publications, again, that are aimed at prostate cancer patients, and really kind of covering the whole spectrum of disease, as well as more holistic aspects which are really important, things like diet and exercise and how that plays into overall wellbeing and health during prostate cancer treatment. So, we keep some of those little booklets in our rooms as well to hand out to patients, but they’re probably available by request online as well on one of the Prostate Cancer Foundation websites.

Katherine:

Yeah. What about resources for prostate cancer patients who are already really knowledgeable about their disease and want to stay up to date on the latest research and treatment? What’s available for them?

Dr. Dorff:

There are some conferences that seek to educate patients on a little higher level. It can be challenging because not every prostate cancer patient is at the same place, but they can look for some of those conferences. Frankly, they can follow Twitter or some of the other social media.

Sometimes prostate cancer support groups also will bring in speakers who try to provide updates about emerging treatments, or where the research is going, or where the field is going. So, most big cancer centers are gonna have a support group.

Obviously, it’s very variable, and sometimes they may focus more on the psychosocial aspects, but I do think a lot of them will include people like me, who are just trying to connect with the cancer patients on various levels about the latest and greatest.

Katherine:

We received some audience questions prior to today’s webinar, and I’d like to go through some of them with you. Bob asks, “Does androgen deprivation therapy cause cognitive issues?”

Dr. Dorff:

So, androgen deprivation therapy is another way of saying hormone therapy. We’re lowering testosterone, which is an androgen, and the question about cognitive issues is a good one. If you look in the literature, it’s not been well documented, and part of that is because our patients tend to have age and other comorbidities that can lead to changes in cognition happening at the same time as they’re being treated for prostate cancer, but also because the tools just haven’t been very good.

The tests where we measure how your brain is working have traditionally not been very good. There are some better tools that have been developed, and we’re hoping to be able to – with some ongoing studies – better define are there cognitive changes? If so, how severe are they, how common are they, are they more common with one drug versus another? Very basic questions.

I will say in my own practice, after 15 years of treating prostate cancer, I do believe that some patients experience cognitive changes during ADT. They can be mild, like taking longer to remember someone’s name or walking into a room and forgetting why you’re there, which, frankly, happens to all of us when we’re not having our best days, but obviously, I do see that a little bit more with prostate cancer patients who are receiving hormonal therapy.

For some of my really high-functioning patients, it can be helpful to use a drug that treats attention because some of the cognitive dysfunction actually ends up being an issue with attention. So, we use drugs like methylphenidate (Ritalin) or dextroamphetamine mixed salts (Adderall) to support patients who need to be really focused, and I’ve had many patients tell me that that has made a huge difference for them, so it’s not going to solve the overall changes that may happen in the brain on the basis of the hormonal deprivation, which we know happens from animal models, but it can help in the short term so that men can continue to function at a high cognitive level, despite ADT, when needed.

Katherine:

Yeah. George wants to know, “Are there any advances in imaging that patients should know about?”

Dr. Dorff:

Yes. So, the PSMA PET scans – so, these are a nuclear medicine imaging that looks for prostate cancer using a protein called PSMA, and there are several of them, there’s the F-18-based one called Pylarify, and then there are the Gallium-68 versions, Illuccix and Locametz, so those have been revolutionary. They can see prostate cancer in much smaller quantities, so we use them a lot for rising PSA after prostate surgery or radiation to see where is his small amount of cancer, and hopefully, we can treat it better by seeing it earlier.

They are also now being used to select patients for potential benefit from a treatment like Lutetium-177-PSMA, which obviously won’t work if the cancer doesn’t have that protein, so the imaging helps see who’s got the protein, who can benefit from the treatment. So, that’s the biggest imaging advance. There are some others, like using MRI fused to ultrasound for prostate biopsy at diagnosis. There’s also another kind of PET scan called a fluciclovine PET scan, which we still sometimes use because not 100 percent of prostate cancers have PSMAs, so sometimes we need something a little bit different.

Katherine:

Antonio had this question. “I heard that statins – cholesterol-lowering drugs – could help fight prostate cancer. Is that true?”

Dr. Dorff:

There’s been a lot of interest in the statins because in addition to having those positive effects against cholesterol, which are helpful when hormonal therapy that we use for prostate cancer disrupts our lipids, they have these anti-inflammatory properties that are being looked at in a number of different research avenues.

And then, there has also been a new, evolving understanding that they interfere with some hormone-binding compounds in the body, and so, could augment the effect of androgen deprivation therapy.

So, there has been interest in prospective studies because the literature we have right now is really retrospective, so we can’t really tell a patient which statin drug or what dose and for how long would be associated with a positive benefit, and we don’t really yet know how to use them proactively during someone’s treatment, but I will say if you’re starting on hormone therapy or ADT, having your lipids checked and getting on a statin if your lipids are not in a good range is really important anyway to just protect your cardiovascular health, and then, maybe we’ll find out that it does actually help your prostate cancer treatment be more successful as well, but I would say those data still need to be fleshed out a bit more.

Katherine:

Thank you for those answers, Dr. Dorff. I appreciate it. And please continue to send your questions to question@powerfulpatients.org, and we’ll work to get them answered on future programs. As we close out our conversation, Dr. Dorff, I wanted to get your thoughts on where we stand with research progress. Can patients truly thrive with advanced prostate cancer?

Dr. Dorff:

Absolutely. I would say in the 15 years I’ve been treating prostate cancer, I’ve really seen a transformation from a disease with a short lifespan and a lot of symptoms to a disease where people can actually thrive, living more than a decade even with advanced or metastatic prostate cancer, because the treatments have gotten so much better, and I think also potentially due to the increased awareness on the part of physicians about helping people stay healthy during their longer-term treatment. So, definitely, my patients today live longer and better than my patients did when I started treating prostate cancer.

Katherine:

Well, it seems like there’s a lot of progress and hope, then, for prostate cancer patients.

Dr. Dorff:

Absolutely.

Katherine:

Thank you so much for joining us today, Dr. Dorff. I really appreciate it.

Dr. Dorff:

Thank you. I hope people found it helpful.

Katherine:

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

PRESS RELEASE: Patient Empowerment Network appoints Tracy Rode as Executive Director   

FOR IMMEDIATE RELEASE
APRIL 18, 2023

BOTHELL, WA. – Patient Empowerment Network (PEN) today announced that its Board of Directors has appointed Tracy Rode as Executive Director.

Rode brings more than two decades of nonprofit leadership experience, including working with diverse patient populations to improve their health outcomes and increase access to care.

“We are thrilled to have Tracy join Patient Empowerment Network at a time when our wide range of educational and information programs span 18 different disease areas, reaching more people with cancer — and their caregivers — than ever before,” said Darla Brown, chair of PEN’s board of directors. “As a cancer survivor, Tracy understands how empowering knowledge can be for patients, and her broad experience and network will accelerate our impact to new levels.”

“I joined the Patient Empowerment Network because of the experienced, compassionate staff and Board of Directors, who focus on excellence and innovation to not only carry out their mission but also grow their impact,” said Rode. “Patient Empowerment Network activates patients to share decision making with their healthcare team, and we are contributing to health equity by expanding our programs’ reach within underrepresented areas and communities. I’m also excited to continue our collaboration with health care professionals by providing them with the best, most trusted resources for their patients. ”

Rode’s experience of leading and growing organizations encompasses both volunteer and professional roles, including executive positions at the Healing NET Foundation, the Lupus Foundation of America, Mid-South Chapter, PearlPoint Cancer Support, and Vital Options International, and Vision3 Interactive Media, an internet consultancy she founded in 1995. She is a graduate of Vanderbilt University and lives in Nashville, Tennessee, with her husband and two adult children.

About Patient Empowerment Network

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

PEN’s free online programs for people impacted by cancer include webinars with leading medical experts, digital literacy skills training workshops, downloadable doctor’s visit check-lists, online courses which teach skills including how to use telemedicine, animated explainer videos, patient story vignettes, a blog, activity guides, and more. www.powerfulpatients.org.

Media Contact:    

Emily Reed

Early Light Public Relations

Emily@earlylightpr.com

Toxic Positivity: A Detriment to Disease

I remember when I was first diagnosed with thyroid cancer back in 2017. I had been working for a primary care office at the time, so I knew I was in good hands with the doctors I worked with when I asked for a referral for whom they thought would be the best person to treat me. When I told them I had thyroid cancer, however, I got responses such as, “Oh, you have the ‘good’ cancer,” and, “If there were a cancer to get, thyroid would be it.” I took these responses to heart, even though many years later, I knew I shouldn’t have. However, I was a naive, young patient who didn’t have any symptoms, much less anything about cancer. What I failed to realize was what these responses were, or “toxic positivity.” 

Toxic positivity is defined by Psychology Today as, “the act of avoiding, suppressing, or rejecting negative emotions or experiences. This may take the form of denying your own emotions or someone else denying your emotions, insisting on positive thinking instead.” In other words, we downplay our emotions, specifically if they are negative, in order to appear positive. This can have many detrimental effects including leading to feelings of shame, guilt, and avoiding true human emotion(s). I remember not being scared of my diagnosis, more aloof than anything. I had accepted that cancer was now, and forever would be, a part of my life, and that maybe I did have the “easy one.” However, I’m realizing that I may have been engaging in my own form of toxic positivity in order to appear as if I had it all together. 

However, when someone is diagnosed with a disease as detrimental as cancer, it’s important to not put on such a facade as “positive vibes only,” although I am definitely guilty of having art in my home with such a phrase. Being diagnosed with cancer is hard amongst other defeating human emotions. It’s imperative that we recognize that, and that we don’t shame or blame ourselves for not being “happy” or “positive” all the time. Hiding our emotions and how we truly feel prevents us from being authentic and from experiencing growth as humans. 

So how do we be kinder to ourselves and to others who are experiencing a difficult diagnosis such as cancer? 

  • Own your story and all of its parts, both positive and negative 
    • Don’t deny reality 
  • Be gentle and kind with yourself 
  • Tell others exactly how you’re feeling 
    • Don’t shy away from “emotions” for fear of guilt or shame 
    • Don’t minimize 
  • Don’t be dismissive of others if they do engage in toxic positivity; rather, talk it out 
  • Focus on helping others through active listening 
  • Validate others’ feelings 
  • Know that more than one feeling can be true at the same time, for example being scared, yet hopeful 

PODCAST: How Can You Engage in Your Myeloma Treatment Decisions?

Myeloma expert Dr. Benjamin Derman shares advice for partnering with your team when choosing a myeloma therapy, discusses important factors that should be considered, and provides key questions to ask your healthcare team to help you engage in your care. Dr. Derman also reviews research updates from the December 2022 American Society of Hematology (ASH) meeting.

Abou the Guest:
Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. 

See More from the Empowered! Podcast

Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to talk about myeloma treatments, what the options are both current and emerging, and how you can play a role in your care and treatment decisions.  

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. Benjamin Derman. Dr. Derman, welcome. Would you please introduce yourself?  

Dr. Derman:

Yeah. Thanks so much for having me. As you said, my name is Ben Derman. I’m an assistant professor at the University of Chicago. And I specialize in actually, plasma cell disorders, which is mainly multiple myeloma, amyloidosis, Waldenstrom’s. If a plasma cell is the problem, then I address it. So, that’s what I do. And that’s my clinical and research focus as well.  

Katherine:

Excellent. Thank you so much for taking the time to join us today. Before we get into our discussion about available myeloma treatments, let’s talk about emerging therapies. And I know there are many. 

The American Society of Hematology or ASH annual meeting took place in December. What are some of the highlights from that meeting?  

Dr. Derman:

Yeah, ASH is always a very exciting time because it’s when we get to see all the latest and greatest of what’s on the way or what’s already here to stay.  

I think the biggest focus in the myeloma field, if I could really pin it down, was more in the later stages of the disease and focusing on treatments in that setting. We already have two FDA-approved chimeric antigen receptors, or CAR T-cell therapies, in Ide-cel (Abecma), and Cilta-cel (Carvykti). Those are the brand names. And then more recently, we just had a bispecific antibody, which is another type of immune therapy that was approved. But there are actually many under investigation.  

And so, at this ASH we heard a lot. Not only about the target that’s been most popular in this setting, which is something called BCMA or B-cell maturation antigen.  

That’s what the CAR T-cell therapies that I mentioned are going after and the teclistamab (Tecvayli) bispecific antibody that I mentioned.  

But there are a lot of other candidate drugs that are also targeting that same molecule. So, we heard a little bit about – more about those. We’ve been hearing about them pretty much at every conference these days.  

So, there’s a lot of competition in that space. Which is good for patients because ultimately, what we’re trying to figure out is, is one of these better than the others? Or at least, if we have multiple options, there may be different side effect profiles that we have to think about.  

But now as BCMA therapies are getting used more and more, one of the questions is, well, is there any other target that we could go after? And really, the one that was hot at ASH this year was something called GPRC5D, or G-protein coupled receptor 5D. This is expressed pretty strongly in myeloma cells, and not in many other tissues. Maybe the skin, nails, tongue. So, basically, that’s what you want, is you want a target that’s not going to be expressed elsewhere.  

So, there were a couple of different types of therapies that were discussed. One was a CAR T-cell therapy going after GPRC5D, and the others were – there were two bispecific antibodies actually targeting the same GPRC5D. And that’s actually already in addition to another GPRC5D directed bispecific that’s in development.  

So, basically, the idea is that if patients may experience progression on one of these BCMA targeting agents, we’re going to have another target to be going after. And I think that part is really, really exciting.  

And as far as other highlights, I think the other thing is, how do we reduce the toxicity from these drugs? And exploring avenues in order to be able to decrease sort of the inflammatory effects of these drugs, which are important.  

Katherine:

That’s great. It sounds so promising. And all of that information is going to be very helpful as we move through today’s discussion.  

Let’s start with a general overview of treatment options. What types of treatment are offered for myeloma patients?  

Dr. Derman:

Right. So, if you think about at the point where a patient is diagnosed with myeloma, unfortunately, always a tough – always tough news to receive and to share with patients as well, we start to think about dividing treatment into phases. And in part, some of it’s going to depend on, what is the fitness level of a patient in front of me? And not so much age per se, but really fitness level. And what I mean by that is independence in their activities of daily living, their ability to walk, go up flights of stairs, carry out just their daily life.  

So, assuming that all options are on the table, we consider those patients to sort of be what we call stem cell transplant-eligible. 

And that picks a sort of variety of pathways that we can go down. And then the other variety of pathways we can go down are patients where either because of a comorbid conditions, there are other medical problems, or because of their fitness level, a stem cell transplant is not really going to be something that we consider.  

But either way, in either case, we start with something called induction therapy, where we’re aiming to induce a remission. Or induce a response as we typically say more commonly in myeloma.  

And usually that involves a combination of three or now possibly four drugs. And it’s really, really different the way that we treat myeloma than we treat other cancers. And what I mean by that is the traditional thought of using very harsh chemotherapy drugs that make people feel very sick, very ill, lose their hair, those kinds of things. Things that are maybe more outwardly associated with chemotherapy, we don’t see that with myeloma.  

In fact, I often tell patients if they’re fortunate to not have the disease affect them so much at diagnosis, a lot of people may not even know that they’re on treatment. And that can be good and bad, because they don’t know that what you’re going through, which can be challenging in its own right.  

So, really what we use are a combination of therapies. They can be oral drugs, they can be subcutaneous injections under the skin, or infusions. And one of the newer advances is using immunotherapy in myeloma. And this is a little different than it is in solid organ cancers like lung cancer or melanoma where immunotherapy is very popular as well.  

One of the main targets that we go after is something called CD38 on the surface of myeloma cells. And CD38 can be targeted with a type of monoclonal antibody.  

And there are two that are out right now, daratumumab (Darzalex) and isatuximab (Sarclisa). Daratumumab is actually approved to be used in the frontline setting, meaning at diagnosis. And that has really allowed us to augment the already – the backbone that we’ve been already using for quite some time in myeloma.  

Dexamethasone (Decadron), which is a steroid, is typically employed in all of these cases. And then we use drugs that are in the class of what’s called immunomodulatory iMiDs, chiefly lenalidomide (Revlimid) is the main one that we use in oral drug, and that’s been approved since 2006 or so.  

And then bortezomib (Velcade), which is something called the proteasome inhibitor, or its cousin carfilzomib (Kyprolis), can be used as well in the frontline. So, we’re usually combining these three or four drugs together in order to create this sort of symphony that really targets the myeloma from many different aspects.  

Katherine:

Yeah. How do patients know if they have any of these targets, such as CD38?  

Dr. Derman:

So, actually it’s interesting. CD38 is pretty much ubiquitously exposed on the surface and expressed on the surface of myeloma cells. So, it’s in a pathology report. It’s actually one of the ways in which we can identify what makes a plasma cell a plasma cell. But CD38 is one that is essentially ubiquitously expressed.  

And I say that with the idea that that expression may go down if you use these drugs to target that specific – that target. So, as time goes on, it’s not a drug that you may be able to reuse over and over. Or at least there might need to be a nice long break.  

Katherine:

So, obviously there are very – there are a lot of available therapies for myeloma. And I’m wondering what factors might impact treatment decisions. You did mention comorbidities. But what other factors are there?  

Dr. Derman:

Sure. And I think in part, it depends on if we’re talking about induction therapy or in the relapsed refractory setting. Let’s focus on induction therapy, right?  

So, there are some drugs that we’re typically going to employ pretty much universally. For those who are inclined to use that CD38 monoclonal antibody that I mentioned, it pretty much plays well with patients of all walks of life. So, that’s one where I feel really comfortable regardless.  

Lenalidomide is a drug that we don’t necessarily know from the get-go if there’s going to be a patient that’s not going to tolerate it well.  

We might reduce doses up front. But for the most part, that’s another drug that we’re typically going to use. I would say the one exception is for patients who have a simultaneous diagnosis of amyloidosis. And we know that in amyloidosis, lenalidomide may not be as well-tolerated.  

But actually, one of the key decisions that I’m often making in clinic myself is around that drug class that I mentioned earlier called proteasome inhibitors. And I mentioned two different drugs. There’s bortezomib and carfilzomib. And they actually come with very different side effects that I think are important to mention.  

Bortezomib is one that is typically associated with a high rate of numbness and tingling, what we call neuropathy in the fingers and toes. And about 75 percent of patients have been reported in the trials to get this. And most of it is what we call lower grade. But I’m not in the patient’s body, and I don’t know what that – what even a grade 1, which would be the lowest grade, really feels like. And if I have a mechanic, somebody who types for a living, a surgeon, somebody who uses their hands or their or rely on their feet for their day-to-day, that’s a scary prospect, right?  

The flip side is this drug, carfilzomib, is one that does not really cause nearly as much neuropathy, but has been associated with cardiac effects. Heart issues. And so, that can scare people, right? Heart’s important I hear. So, we have to be really careful in how we pick these therapies and talk about it with patients.  

Katherine:

Yeah. When we talk about making treatment decisions, it’s important to choose a therapy with your healthcare team.  

Let’s share some tips for having that conversation. I’d like to start with induction therapy, which is the first line of treatment for patients. What questions should patients ask when choosing therapy early in their diagnosis?   

Dr. Derman:

Yeah, that’s a great question. And it’s of course – it’s really the patient priorities I would say. So, one of the things that I like to discuss with patients is, number one, what are the things that they value? And that’s a hard question to ask without any qualifiers.  

So, one of the things that I often ask patients to think about is the – first of all, the number of visits to the medical center. Certain therapies are weekly, certain therapies may actually decrease in frequency overtime. So, if that is something, it’s hard to travel, it’s hard to get someone to take you or to come yourself, or you just don’t want to be in the clinic as much – right? If that’s your number one priority, there are going to be certain therapies that are – or regimens that may be better suited for that patient. If somebody says, “I don’t care how many times I have to come, my goal is the deepest response possible,” you can think about things from that standpoint.  

I mentioned side effects. What are the things that are scary to you personally, as a patient? Some people may look at that neuropathy, as I mentioned, and say “No way. That sounds horrible. I can’t do my job.” Other people would say, “I already have some cardiac issues. I don’t want to take that risk.” Right? So, there are different side effects that we have to take into account.  

Especially when it comes to talking about transplant, there is not just the acute issues that we have to deal with in terms of side effects, but also long-term immunosuppression. Meaning the immune system is suppressed, and there’s a risk of infections, and it’s going to be higher than if you had not gotten a transplant. So, those are at least some of the things that I encourage patients to be thinking about.  

I would also say, on top of that, patients may be approached about clinical trials. And I work at a university where we really value enrolling patients in clinical trials. But that they do come with some inconveniences as well, even though I think they really help to advance the field forward, and sometimes offer patients options they wouldn’t normally be able to get. But there are typically more visits associated with that, more evaluations, more blood draws, more bone marrow biopsies, so those are things that you really have to take into account.  

Katherine:

That’s great advice, Dr. Derman. Unfortunately, relapse is common among myeloma patients. Or it may be that a treatment stops working, and so the person’s myeloma becomes refractory.   

When considering a treatment for relapsed or refractory myeloma, are there different questions that patients should be asking their healthcare team?  

Dr. Derman:

Yeah. I mean, that’s a great question. I think part of it is every patient’s journey with myeloma ends up being quite unique, in part because we don’t have a lot of consensus in terms of how to treat myeloma. So, I may choose one regimen, but the other doc down the street is going to recommend a slightly different one. And now, they all have efficacy. No one’s going to be recommending something that’s not good, right? But what it means is that the journey, the number of therapies, the types of therapies that a patient has received are all going to be quite different than the next.  

So in part, sometimes the past therapies are going to dictate what options are available.  

So, I mentioned some different classes of therapies. The proteasome inhibitors, there’s a certain number of those. The immunomodulatory iMiDs, there’s a certain number of those. The CD38 monoclonal antibodies, there are those. And then there are a few other drug classes as well.   

And if we’re using three or sometimes four drugs at a time for each what we call line of therapy, meaning each time a patient changes treatment – right? Eventually, we’re going to have gone through a number of treatments that now the patient would be – their disease would be resistant to. And so, you don’t really – it’s not really going to be prudent or wise to go back to therapies that didn’t work previously.  

And so, we start mixing and matching, and we come up with regimens that we think are going to hopefully throw a curveball to the myeloma to really try to get rid of it again. That’s what I mean by it’s dictated by past therapy.  

Katherine:

Is research being done to determine the likelihood of relapse and when that might occur?   

Dr. Derman:

Yeah. I mean, we can look at clinical trial data for regimens that have been tested in the relapsed or refractory setting and say, “Okay, we know that this three drug regimen typically gives patients a year before the disease comes back.” Or “This one gives two-and-a-half years or three years.” So, that’s one piece.  

But when you think about who – if you wanted to know ahead of time, “Okay, a patient with high-risk disease, they’re likely not to have as good of a response.” But nobody knows ahead of time the exact amount that they’re going to relapse.  

But one of the things that we focus on, part of the reason that patients get a good amount of blood work when they have myeloma and they’re on therapy is that we have a measure in the blood, or we have several measures in the blood, where we can monitor for relapse. So, we can look at the abnormal proteins, what we call paraproteins in the blood. Either as the M-spike, is what it’s called, or light chains. We look at both of those to see if there are increases in those numbers over time.  

When a patient’s responding, those numbers come down. When a patient is losing response and their disease is progressing, that’s when we start to see those numbers go up. And that’s often an indication that we need to switch treatment, even before a patient develops symptoms related to their myeloma.  

Katherine:

When a patient goes into remission, they’re often placed on a maintenance therapy. What’s the role of maintenance therapy in myeloma care?   

Dr. Derman:

Yeah. So, maintenance, just to specify, is typically something that we call a long duration of usually, less intensive therapy after a more intensive schedule of therapy. So, the most common area that we talk about maintenance is after, let’s say, an autologous stem cell transplant, which came after induction therapy that I mentioned.  

But for patients even who don’t go to a stem cell transplant, they can also go on maintenance therapy. So, when we think about the frontline setting, which in this case would be induction transplant maintenance, the most commonly used drug is a single agent lenalidomide. And that’s been shown to have survival benefits not just in keeping the disease away, but also helping patients live longer. So, maintenance therapy does seem to carry some real importance. One of the things though that we don’t know, is really how long patients need to be on maintenance therapy.  

So, we can all accept I think in the myeloma field, if there’s one thing we can agree on, is that maintenance is important. But the question is, what makes up that maintenance therapy? And then how long? Those are questions we don’t really have the best answers to. And actually, one of the areas that I do quite a bit of research in is about this, how long do patients need to be on therapy?  

So, we recently published some – we presented at ASH this year in 2022, some recent data, at least a preliminary data on patients who had really deep responses, and who we stopped their maintenance therapy after at least one year – but the average was about three-and-a-half years on maintenance therapy – to see if the disease would actually be at risk of coming back.  

And so, what we’re finding is that even in the first year, about 85 percent of patients did not have their disease come back after stopping therapy. So, maintenance therapy is certainly important, but I think we still have to figure out how long patients need to be on that therapy.  

Katherine:

Right. And I can imagine that each person, each patient is different, and some – the maintenance therapy would work really well for them for a long period of time. For others, not necessarily.   

Dr. Derman:

Yeah. I mean, a lot of it comes down to the risk there of the patient’s myeloma. And what I mean by that is – so, somebody has explained to me previously, and I really like the analogy that myelomas are kind of like people. They have different personalities, and they give first impressions. And sometimes your first impression of a myeloma may end up being wrong. You thought it was going to be really hard to treat and you found out that it actually responded pretty nicely to therapy. And other times, it’s the other way around.  

But for the ones that give us a bad first impression, we’re going to be treating those patients typically more aggressively. At least that’s my personal approach. And I take that all the way through from induction, to transplant, even into maintenance therapy where I mentioned already, most people will prescribe a single drug as maintenance therapy. But for those patients, I’m typically going to be prescribing more than that. Or I will continue more aggressive therapy for longer. So, that’s where you have to sort of adapt your therapy in some cases to the patient and their disease characteristics.  

Katherine:

Related to maintenance therapy, we received this question before the program. How do doctors feel about maintenance breaks if you are MRD-negative? Or in a very good response?   

Dr. Derman:

So, I want to be very careful about how I respond to this. Because what I’m going to say is, there’s currently no data to tell us that patients should stop. I mean, in part that’s, you should stop therapy. In part that’s what I’m hoping that we can answer with our study. There’s another large cooperative group study trying to answer this as well, about the duration piece and whether people can stop.  

So, a very good partial response signifies at least a 90 percent reduction in the tumor, in the myeloma, but not 100 percent.  

And there’s also a complete response, which means there’s no detectable disease by conventional methods in the bone marrow or in the blood, but that there can still be microscopic or low levels of cancer cells which we call minimal residual or measurable residual disease. Also called MRD.  

So, MRD negativity is a not so nascent field now, where we are trying to quantify small amounts of cancer cells that may still be present. And the theory is that the presence of residual disease at a small measurable level is what’s ultimately responsible for myeloma relapsing.  

We used to think like, “Oh, a patient is in a complete response. That’s amazing. Let’s clink our champagne glasses. Let’s celebrate.” And there’s still cause for celebration for that. That is a great achievement. But we know that that doesn’t mean we can rest on our laurels. If there is MRD-positive disease, then the disease, it can likely come back. And that’s where suppression of the disease with something like maintenance therapy with lenalidomide is probably helping a lot.  

Katherine:

Yeah. 

Dr. Derman:

But let’s say we have people who don’t have detectable disease, the question is, can they stop? And like I mentioned, we’re trying to answer that question. I would say right now, there’s no recommendation for that. I can’t say in good faith that you should be doing that, unless it’s as part of a clinical trial, which is what we’re hoping to answer. 

Katherine:

Let’s get to a few audience questions, Dr. Derman.   

Craig sent in this question prior to the program. “My primary side effect is fatigue.” And you just mentioned that. “What advice do you have for planning activities through the day?”  

Dr. Derman:

So, this is a very common side effect that we see. In part, it can be from the disease itself. And if that’s the case, it’s going to get better as treatment works. In other cases, it’s due to the treatment itself. And sometimes there are controllable aspects. If it’s a pill, let’s say, where you can control the timing of when you take it. I often tell patients, “Take the drug at night. Because if it makes you tired, at least you’re going to be going to sleep at that point.”  

I do think making sure that you have a good night’s sleep is important. I think making sure that you keep your day-night cycles. So, even if you feel fatigued and you’re at home, it’s not good to be having the windows closed and not being exposed to the outdoors at all. You need light during the day. That’s a normal human need. We do the same thing when patients are in the hospital, and it’s very easy to get your day and night cycles messed up.  

And the other thing too is planning periods of the day when you know that your activity level is going to be, or your energy level is going to be higher, and planning your activities around those times. I think those are at least some important things that we can do.  

Katherine:

Yeah. Lauren wants to know, what is the best way to measure current immunity status? And should we mix COVID vaccine and flu vaccine?  

Dr. Derman:

Mm-hmm. This has become sort of a hot button issue all of the sudden over the last few years. Well, so, as far as immunity status, I wish there was a one good test that we could know.  

I mean, there are some features. Patients who have low white blood cell counts, especially low neutrophil counts, are certainly going to be at higher risk for infection. And that can happen due to myeloma, or more commonly, due to therapies. We can look at immunoglobulin levels, especially the IgG level. Patients who have IgG levels typically less than 400 milligram per deciliter seem to be historically at higher risks of infections. So, something called IVIG, which is an infusion of donated antibodies from plasma from healthy donors, can be used for that.  

There’s been a lot of discussion about, how do we know immune status related to COVID? And there are antibody levels that can be checked, but the truth is nowadays most people have high antibody levels, even if they’re on therapies because of the number of vaccines they received or natural infection. And it may not be a really good surrogate for understanding immunity to COVID. COVID’s outsmarted us time and time again, and probably will continue to do so.  

As far as the vac – I mean vaccines are super important. We do this for all our patients after transplant as well, revaccination them for all of their childhood vaccines. As far as the COVID and flu, I personally – I’m happy and feel fine administering both at the same time. We’ve seen no real safety signals there in my anecdotal experience. But I’m perfectly fine if patients want to split them up. It’s not something that is a 10 out of 10 for me. It’s more that it is as long as they’re getting both, I think that’s really important.  

Katherine:

Yeah. One final question for you. Jennifer asks, “Many new medications for treatment were mentioned. And I’m sure these could be expensive. What are the options to make these available financially for patients who need them?”  

Dr. Derman:

That’s a really good question, and one that we don’t yet have great answers to. As a physician, I don’t receive compensation based on the drugs that I prescribe. And so, I do know – I often have a good sense of what these drugs cost. A lot of the costs that are passed along to patients typically revolve around oral therapies. Even patients who are on Medicare, or sometimes especially patients who are on Medicare. And looking at some of the policy changes that seem to be coming down the pike that include capping Medicare out of pocket costs for medications will be a huge benefit to our myeloma patients.  

It’s important to familiarize yourself with different organizations and the financial support that may be available. Just to name a few, and you’re not limited to these, but The Leukemia & Lymphoma Society does a really great job in providing financial support to patients. But there are definitely other programs that can be contacted for this.  

And also, a lot of the pharmaceutical companies will actually have patient assistance programs as well. Sometimes it’s as simple as asking your provider, and typically they will have their team look into this for you. But we’re fortunate to have a team of pharmacists and my nurses as well who are used to doing this kind of thing. So, it’s important to look into those as well.  

Katherine:

Right. And so, there are lots of resources out there, it’s just asking your healthcare team what they are. Right.  

So, these were all really great questions, and we ask our audience to continue sending in questions to question@powerfulpatients.org. And we’ll work to get them answered on future programs.  

Dr. Derman, what advice do you have for patients? What would you like to leave the audience with?  

Dr Derman:

You know, myeloma is a funny – it’s a funny disease in the sense that patients who were diagnosed 10 years ago, who I still see, they remind me of the action movie where the building is maybe blowing up in the background, blurred out, and they’re running out of the building just in time. And that is because the pace of progress is fast enough in myeloma that we have all these new therapies coming down.  

So, really, I think maintaining hope and thinking about – don’t worry so much about what’s going to happen next. Figure out what you’re going to do now, and make sure that you’re living your best life now, and making sure that you’re doing what you can to treat your disease, I think, and help you feel good during that period too.  

Katherine:

Yeah.  

Dr. Derman:

So, I think it’s a message of hope mainly, that I feel really good about the future of myeloma. There’s a lot of innovation in this space that you can feel good about.  

Katherine:

Yeah. Dr. Derman, thank you so much for joining us today. It was a pleasure talking to you.  

Dr. Derman:

Likewise. Thanks so much.  

Katherine:

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 joining us.  

My Waldenström Macroglobulinemia, Miracle Number Three

Dear Fellow Cancer Patient,

As I believe in universal love for ALL, I’m reaching out to you, whether we have met or not, to invite you to join me in embracing the concept of medical miracles no matter what kind of cancer you have.

I do so because in January 2023 I experienced my third medical miracle since being diagnosed with Waldenström macroglobulinemia (WM) in August 2012, an extremely rare and currently incurable lymphoma.

The mission of Patient Empowerment Network (PEN) to support and educate patients with all cancers has an exceptional impact. It is an honor to cooperate with PEN, and my dream is to bring you hope through my own medical successes through the past 10 years. (*Please see footnote for a brief history of my story.)

It is my tremendous good fortune to be in the constant care of my world-renowned WM specialists/hematologists at the Bing Center for Waldenström’s Macroglobulinemia, Dana-Farber Cancer Institute/Harvard Medical School in Boston, Mass. since March 2013. Also, my oncologist at Virginia Cancer Specialists who has extremely high credentials in hematological malignancies, diagnosed me in 2012, and treated me immediately with what was then the flagship chemotherapy for WM.

In September 2022, I experienced the most aggressive outbreak ever of my Waldenström. A lymph node was so enlarged, I discovered it myself. One week later, my feet were unbelievably swollen, which I discovered when I couldn’t put my shoes on. I immediately reached out to the Bing Center’s Director, Dr. Steven Treon. Within the same hour, he called my Virginia oncologist and recommended a PET scan and biopsy for me. The next morning at 10 am, less than 24 hours later, I was examined in Virginia by my oncologist, and he ordered both tests on the spot.

The results were extremely concerning and put fear in my heart again as is the case with any cancer diagnosis. Enlarged lymph nodes were very widespread throughout my body, and there was increased activity in my entire bone marrow throughout my skeleton from head to toe.

My two Bing Center for WM doctors’ recommendation of Benda-R [bendamustine (Treanda) and rituximab (Rituxan)], for chemotherapy was agreed to by all upon consultation with my Virginia oncologist.

For three months, I couldn’t walk outside of my house and only went to medical appointments with my oncologist every week and chemotherapy treatments for two days each month. Tony, my husband, had to drive me there and take me by wheelchair down the hall to his office. I was also very frail due to losing 15 pounds, making my weight 90 pounds.

During this very challenging time, my brother Mike, a two-time survivor of non-Hodgkin lymphoma (NHL), supported me constantly and even called me from Egypt and Panama on his cruises there, as he understands too well how trying it is to be back in treatment for cancer. My dear friends also offered wonderful daily encouragement with special contact to lift my spirits.

After three months of chemotherapy, my follow-up PET scan in January 2023, showed “complete interval resolution of the abnormal marrow and nodal activity evident on the previous study.” Although I’m not an expert, the comparison of the images of my body between September and January was remarkable. In the Bing Center for Waldenström’s clinical review of its patients led by my doctors and joined by their colleagues from three Harvard hospitals in Boston, my PET scan results were examined, and one more round of chemotherapy was unanimously recommended to complete my treatment.

My third medical miracle has arrived! According to Dr. Steven Treon, Director of the Bing Center for Waldenström’s Macroglobulinemia in Boston, “From all evidence so far, it appears you may be in complete remission!” My deepest gratitude to him, Dr. Jorge Castillo, Clinical Director of the Bing Center, and my Virginia oncologist for their cooperative spirit with each other on my behalf and extraordinary attention in providing life-saving treatment to me is beyond words. In July 2023, a bone marrow biopsy and CT scans at the Bing Center for WM in Boston are planned to confirm my response.

Yet, again, I am celebrating the gift of life with Tony who has been a saint to me through countless years of ups and downs with experiences as a WM patient. He has been by my side and done absolutely everything possible to love and support me endlessly. For care partners, be sure to get the support you deserve for yourself, as cancer in your world is very challenging for you too.

Amazingly, although I couldn’t swim for seven months, I exceeded my own goal and swam for 40 minutes during my first time back at a pool in my fight to regain strength and normalcy. And I can now walk for 15 minutes outside every day, too, as my swollen feet have resolved. Tony even took me to a favorite place for my March 2023 birthday, the first time we’ve gone to a restaurant since August 2022.

As I mentioned earlier, in sharing my medical miracles with you, my dream is to give you hope for your own cancer treatments – and success. I encourage you to stay in contact with family and friends, be a proactive advocate for yourself, read PEN’s news and that of other relevant cancer support organizations, follow your own status, and reach out to your oncologist immediately with concerns or new symptoms, see a specialist for your specific cancer if possible or have your oncologist consult with one. Stay hopeful and realize that profoundly sophisticated advancements in medical research and science are progressing at a phenomenal pace for all cancers and continue forward with unwavering commitment by medical experts across the globe. I have benefited from this greatly in my own experiences in the past 10 years and may this be truly inspiring for you too!

Wishing you all the best in every way!

Sincerely, Lu Kleppinger


Footnote:

* Brief history…In August of 2012, being highly symptomatic, I was diagnosed with Waldenström macroglobulinemia (WM), One week later, I started chemotherapy provided by my Virginia oncologist. In March 2013, I became a patient of Dr. Steven Treon, Director of the Bing Center for WM/DFCI/Harvard Medical School in Boston and he extended my chemotherapy for an extra year. After 18 months and 50 infusions, it was an extraordinary success and gave me five years of being under control without treatment. In 2014, my hematologist, Dr. Jorge Castillo, Clinical Director at the Bing Center, said “You are doing really, really, great! Go live and have fun!” I did just that.

In 2019, my WM flared up a second time, and Dr. Castillo placed me on ibrutinib (Imbruvica), a daily pill for life. The results were incredible within a month, and my WM was under control yet again. I lived a normal life for three years, feeling cancer-free.

Original Stories of Hope from the first two episodes can be found at Lymphoma.org and IWMF.com.

PODCAST: Myeloma Patient Expert Q&A: Start Here

In this myeloma patient expert Q&A, Mayo Clinic expert Dr. Sikander Ailawadhi provides highlights around the myeloma novel alphabet soup and actionable steps on how patients and care partners can start the treatment conversation.

About the Guest:
 Dr. Sikander Ailawadhi is a Professor of Medicine in the Division of Hematology/Oncology at Mayo Clinic Florida.

See More from the Empowered! Podcast

Transcript:

Lisa Hatfield:

Hello and welcome, my name is Lisa Hatfield, your host for this Patient Empowerment Network program. In this important dialogue, we bridge the expert and patient voice to enable you and me as a myeloma patient to feel comfortable asking questions of our healthcare teams with more precision, more precision, the world is complicated, but understanding your disease doesn’t have to be. The goal is to create actual pathways for getting the most out of multiple myeloma treatment and survivorship. Joining me today is Dr. Sikander Ailawadhi, a respected multiple myeloma expert from Mayo Clinic. Thank you so much for joining us today, Dr. Ailawadhi, we really appreciate your time.

Dr. Sikander Ailawadhi:

Thanks a lot, Lisa, for having me, and I look forward to this program.

Lisa Hatfield:

Okay, so before we get started, please remember to download the program resource guide via the QR code, and we are going to jump right into a discussion about some of the novel therapies that there is much buzz about right now, and it’s kind of an alphabet soup these novel therapies. I actually was trying to digest all of this information and divide it into the general categories. And correct me if I’m wrong, but we have monoclonal antibodies, we have bispecific antibodies like the CAR-T therapies, and they target different things. We have BCMA, we have GPRC5D, FcRH5, we have things called antibody drug conjugates and cell mods.

So, Dr. Ailawadhi, if you can just give us kind of a broad overview of these therapies and how they may be used to harness our immune system, and how they come into play when you’re treating your patients, how and when they come into play when treating your patients.
Dr. Sikander Ailawadhi: 

Surely, so I think thanks a lot for bringing up that discussion, this is extremely important, and I think it’s most important because if a myeloma patient goes online and wants to search for information or research, these things start coming up this term starts coming up. So it’s extremely important for a knowledgeable and empowered patient to learn about these, understand them, so that they are able to digest that information.

And I should mention that a lot of what we’ll talk about about these particular treatments may not be applicable to newly diagnosed patients or a recently diagnosed patient, but this is important enough and exciting enough that I would want every single patient to pick up this information. Learn it hopefully, and maybe park it for now somewhere, so that hopefully down the road it becomes important and handy. So you asked about monoclonals, bispecific, CAR-Ts, cell mols, etcetera. Let’s take a step back, let’s think about these as strategies to target myeloma.

Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.

For example, one of the markers is CD38. There is a monoclonal antibody. There are actually two monoclonal antibodies. Daratumumab (Darzalex), rituximab (Rituxan) that are FDA-approved, but there are other ways of targeting CD38, for example, CD38 targeting CAR-T cells, CD38 targeting antibody drug conjugates, etcetera. So CD38 is one important part. A very, very, very important thing in the past one year or a year-and-a-half has been what’s called B-C-M-A, B cell maturation antigen. BCMA is another target on plasma cells. Very effective, very specific.

So there are many, many drugs that are available and becoming available to target BCMA. Right now, there are three drugs that are FDA-approved that can target BCMA. Two of them are CAR-T cells, a particular way of going after BCMA in which the body’s own T cells are collected. These are not stem cells, these are T cells, T lymphocytes, these T cells are collected, they are actually genetically modified to go and fight against the BCMA, and then those modified T cells are multiplied in the lab and given to the person as a drug, they go and seek the plasma cells because of BCMA kill them harnessing the body’s immune system.

So there are two CAR-T cells against BCMA, one called ide-cel (Abecma) and one called cilta-cel (Avekti). There has recently been available a bispecific antibody against BCMA, we call it bispecific because it connects to BCMA from one end and from a second it connects to the body’s T cells again, bring the T cells close to the plasma cells to kill them. Then bispecific antibodies called teclistamab (Tecvayli). And until recently there was another drug available against BCMA which was what’s called an antibody drug conjugate. This drug is called belantamab (Blenrep) for the timing, belantamab has been removed or withdrawn from the market in the US, but there are ongoing clinical trials and down the road, it may come back again.

Now, antibody drug conjugate is another way of targeting something in which there is a seeker for the BCMA in this case, and it has a payload of some kind of a toxin, so that when the drug connects to the plasma cell through the BCMA in this case, that toxin is released, it can kill the cell, so either we harness the body’s immune cells, the T cells by CAR-T or bispecific, or we kill the cell by releasing a toxic payload from a drug, antibody drug conjugate, these are all different methods of targeting the myeloma cell.

So I talked to you about monoclonal bispecific CAR-T and ADC as different strategies, CD38 and BCMA, some of these strategies are available, but there are other targets which are very exciting and new drugs are being developed against them, two of the very interesting targets there one is called GPRC5D, and the other is FcRH5. 

These GPR5CD or FcRH5 are two different targets on myeloma cells. No drugs are currently FDA-approved, but they are being developed very rapidly, and we have a couple of extremely promising agents which will be coming down the pipe. And you also mentioned something called cell mods. Cell mods are some newer drugs in the family of what’s called IMiDs or immunomodulators, in which our patients may be aware of thalidomide (Thalomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst). The cell mods are kind of the same family, and there are a couple of them that are also being developed.

So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.

I know that was a lot of information, but I hope this helps our listeners learn a little bit about what you rightly said is an alphabet soup, but I would like us to think about it as an exciting time for being a myeloma doctor, and certainly a very hopeful situation for all our patients.

Lisa Hatfield:

Thank you so much for that great description. And one question comes to mind that I have heard from other myeloma patients, and you mentioned that we are seeing deep responses, or they’re seeing deep responses in clinical trials for some of these in refractory relapse patients.

Do you think that bringing these…do you think it’s possible to bring some of these therapies to the forefront of myeloma care, maybe an induction therapy or after first relapse, and if so, do you think that that could lead to even deeper responses in those patients because their immune system isn’t quite so tired and potentially cure?

Dr. Sikander Ailawadhi:

Again, Lisa, that is such an important and such a spot-on question that you’ve asked because absolutely, you can imagine, if we are thinking of harnessing the body’s immune system, the T cells, but we’re talking about patients who have had five, six, seven, then, prior lines of therapy. But that immune system is also a little exhausted, a little tired, but if you were to use the immune system of a newly diagnosed patient, patient who’s not been created that much…well, those T cells are going to be way more robust. Whether we use a CAR-T kind of strategy where we remove the T cells, train them and put them back, or we use a bispecific kind of strategy where we put in a drug that pulls the T cells closer to the myeloma cells and kills them using these smart thoughtful strategies which are not just dumb drugs that go in and kill everything, these are smart targeted drugs, using them early on in the treatment paradigm will certainly be more beneficial. In fact, there is some data showing up where some of these strategies like CAR-T cell are being used sooner in the treatment paradigm.

But again, as drug development goes, We first want to make sure it is safe, it is effective, and typically the starting point is patients who have exhausted other options, but very soon we will be seeing all of these strategies, and in fact, some of these strategies combined with each other coming in, early lines of therapy and hopefully providing excellent, deep responses, and you mentioned that term that has been very invasive for us cure, I don’t know if we are…

So we are not there yet. I don’t know how long it’ll take us to get there, but there is certainly much more hope today for getting to that cure than it was before.

Lisa Hatfield:

Thank you, and I think as a myeloma patient and on behalf of other myeloma patients, hearing about all of this research and how our immune system is being used to help us, does give all of us hope to keep continuing, and then you want a moving forward. And I think that was probably a good time to step into some questions here that we’ve received from other patients who have written in prior to this program. I will start with those, but I do want to take a step back, first of all, we’re going to kind of talk about a newly diagnosed patient and all of your explanation of all of these different therapies, these are things that typically are talked about later in therapy as of right now.

It also reminds me to tell everybody that there is great importance in seeking out the expertise of a myeloma specialist, I think everybody heard what Dr. Ailawadhi had to say about these therapies, really, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.

I think I’ve had to do that and I’m so thankful I’ve been able to…we do have resources that we can guide you forward at Patient Empowerment Network, but I think it’s really critical to seek out that expertise of a myeloma specialist. So now we’re going to jump into our questions. So, thank you again, Dr. Ailawadhi.

So we have a patient asking for newly diagnosed patients, say a patient comes into you, maybe they were sent by their community oncologist or a family practitioner, something…I have myeloma, doesn’t know anything about it. Have even heard of it before. How do you start that conversation? How did you explain myeloma and the treatment and very importantly to the patient, how do you explain the prognosis when you know it’s not curable yet?

Dr. Sikander Ailawadhi:

An extremely important question. And I agree that we should be starting at the beginning, so I think I had the privilege of working at an institution where we tend to spend a lot of face time with the patient, so typically in the outpatient, I have at least about an hour of time blocked is how we’re set up.

So at that visit, first of all, I’m hoping that a patient comes in with a caregiver, but if they don’t have a caregiver with them, I start off by asking them, Is there someone they would like us to call during the visit? Because it is always better to have a caregiver or an extra set of ears listening in, and once that has started, then I typically will explain to them literally from what is a plasma cell, what is the role of a normal plasma cell, because that tells us the type of proteins plasma cells produce.

And that leads us to how a plasma cell can become cancerous and lead to multiple myeloma, what are the signs and symptoms of multiple myeloma? What are the markers, these protein markers that come in the blood and are picked up as markers of disease for patients, because again, patients need to know what they’re looking for in the labs that are drawn, so very frequently.

We talked about the role of a bone marrow biopsy, a lot of times it has been done, sometimes it has to be done after that visit, we talk about the genetic mutations in plasma cells that can be seen because that is what helps determine the risk category of standard risk or high risk.

I do offer to patients about discussing the prognosis, again, it’s a good time where we know that the average survival of patients is close to about 8 to 10 years when they look at a general national data, U.S. data, but all the large centers, all of us who focus on myeloma, we have several patients who are living quite a bit in excess of 10 years, so more hopeful time, but it is important to put that prognosis in perspective with high risk or standard risk disease that can be determined based on mutation testing from the plasma cells from the bone marrow, something called the FISH test, part of it is to explain to the patient the prognosis, but other reason is also because sometimes that can determine the type of treatment, and this also importantly tells the patients about their disease much better, so they can be more educated, they can interact with other patients, they can ask the right kind of questions, and they can understand their disease process and follow-up better.

Now, after we have discussed all of this, we start talking about treatment, I can tell you when I talk to a newly diagnosed patient, I will tell them that in my way of thinking their treatment initially is broadly divided into three different discussions during three different visits. The initial visit is talking about any symptom or sign from the myeloma, increased calcium, kidney dysfunction and tumors, how are we going to tackle that? So we will come up with the right “induction regimen.”

I really don’t think one-size-fits-all, so based on the patient’s age, comorbidities, other diagnosis or the treatment drugs, family support system, financial situation, there are so many factors that go into it. We come up with an induction regimen, I’ll tell them that the second component is about controlling all the symptoms and manifestations of the disease, whether that means radiation therapy, bone-strengthening agents, multivitamins, minerals, whatever we need to do as supplements, then we’ll talk about…starting that treatment. What does it involve? Side effects, we will set that path, you will notice I have not even talked about transplant, and I’ll tell the patients that only thing I mentioned to patients in that first planning, visitors and down the road, we will be talking about transplant…

Today is not the time, because, in my experience at the moment, we start talking about bone matter, transplant, stem cell transplant everything goes out the window. That’s what patients think about…and I don’t want them to do that. The second part of my discussion comes around a month or so into the treatment, because by then we want to start seeing some responses, some symptoms turning around, but that month two to three is very importantly the time to rebuild things.

Does the patient need to go to physical therapy, pain control? Supportive or palliative care services? Lipoblasty or tuboplasty to strengthen their spine. I mentioned physical therapy, I’ll say it again, because I really think that’s very, very, very important for controlling the pain and supporting the movement and quality of life, managing any side effects, making sure that the dose is correct, do we need to tweak the doses, etcetera. And at that visit is tell them that, “Okay, very soon we will be talking about…we’ll be going into the details of a transplant, we will be passing along more information to you. But at your next visit, which would be probably at that two- to three-month mark, two- to three-cycle mark,” is when I will really sit and talk to them about our transplant…

So for me, the main transplant discussion comes at that cycle to recycle the two to three, two to three cycles have already gone and patients feeling better, they are much more receptive for the next phase of treatment, which is when we talk about transplant, that’s how I do it, typically. And then we’ll explain a lot about what this transplant need…what does it involve? Caregiver needs a supportive care, vital organ testing, bone marrow biopsy, response depth, MRD, all of that.

So for me, this is kind of the journey that a patient, newly diagnosed patient goes through for the first few months, then their transplant, then their maintenance and hopefully good long disease control state.

Lisa Hatfield:

Great, how often do you expect a patient will have to have appointments during that…talk about the induction phase, the first month to three months, how often do you think they will have appointments, whether it’s for treatment or to come see you? What should they expect that way?

Dr. Sikander Ailawadhi:

Sure, so the regimens that we typically use in myeloma, some of them, the drugs are given twice a week, a majority of the way we give the drugs, it’s once a week, so one to two times a week would be visits, we do the labs for the first month, we will do sometimes every week, but by the time the patient has gone to the second or third cycle, once every two to four weeks, labs are reasonable because by then things have stabilized, but the treatment still would, I think the once or twice every week depending upon the regimen that they have, we don’t typically see the patient for a clinic appointment every time, but a lot of centers do, so every time the patient comes, as I said, one to two times a week, typically that translates to about four visits in every three to four weeks they coming on the cycle, some regimens are three week regimens, some regimens are four week regimens, etcetera.

So patients come, I can say that the first one to two months are most intensive for follow-up for labs, we want  to make sure everything’s been fine, been start reading the treatment, they are not having side effects it and etcetera, and then things can be spaced out a little bit for the next couple of months before we go into the transplant thing, if the patient is going for transplant.

Lisa Hatfield:

Okay, well, great. Thanks for that information. It helps patients plan a little bit better to their life around myeloma and myeloma treatment, so we have a pretty specific question here about amyloidosis, so how often does amyloidosis occur in myeloma patients, and does it change the treatment if they do have amyloidosis?

Dr. Sikander Ailawadhi:

Excellent question again. So I would like to clarify that amyloid is a specific kind of different kind of abnormal protein that can be produced by plasma cells. All of us have these proteins that are…these proteins that are developed as very…or produced in the body is very small molecules and then they fold upon themselves to make different building blocks for the body. If that folding process is misfolded or abnormal, these amyloid fibers can develop and they can deposit anywhere in the body, and whatever the deposit they cause their symptoms. Now, amyloid can be present in two different ways, either amyloid is the primary problem and is being produced by the plasma cells, or sometimes patients who have multiple myeloma and are on treatment for multiple myeloma can either start developing some amyloid protein or…or they can have amyloid deposited in certain organ, heart, kidneys, like the gut, etcetera, the occurrence of amyloid in a myeloma patient, it’s not a common phenomenon, I would say anywhere in 10 to 15 percent of cases that we know of, maybe this present, others that we don’t pick, but once even we find out that amyloid is present in a case of multiple myeloma.

If, for example, amyloid is present in the heart, if we are using any drugs that may have some heart-related side effects, we may need to adjust doses, if amyloid is present in the kidneys, if you’re using some drugs that have kidney-related implications, we may need to adjust the dose, etcetera, broadly, the treatment stays the same, but there is a higher risk to kidneys, higher risk to heart, etcetera in amyloid patients or patients who develop amyloid, so we have to take that into account, sometimes choice of treatment changes, sometimes dose of treatment changes sometimes impact on certain organs change broadly. For a myeloma patient who develops amyloid, the treatment can stay very similar to what would have happened even if amyloid was not present, except some small tweaks.

Lisa Hatfield:

All right, thank you. Another question from a patient since my diagnosis and bone marrow transplant, my teeth have been deteriorating, is there a connection between dental health and myeloma?

Dr. Sikander Ailawadhi:

Very important question because although this is not a very common finding, it is something that really affects quality of life, so myeloma itself does not always or frequently cause teeth problems or dentition problems, which you can imagine teeth are bones. Myeloma affects bones, Myeloma affects calcium deposition in bone so teeth can get damaged in two or three different ways in myeloma patients, first, if myeloma involves the job or you can imagine that the teeth in that particular area could become loose or they could become a little off because the structure is getting affected.

Sometimes if my novels present on the job, for example, and radiation is given, but that bone becomes weaker, so teeth can become weaker, another way myeloma and dental health can be connected is because we use certain bone-strengthening agents for myeloma. These drugs are called either bisphosphonates, for example, or zoledronic acid (Zometa) or pamidronate acid (Aredia), patients may know as Zometa or Aredia, or there’s a second category called RANK ligand inhibitors, one of the drugs there is denosumab or Xgeva, these are all drugs that are given for bone-strengthening for myeloma. Patients are recommended to take calcium and vitamin D, but a rare but definitive side effect that is known to happen or can happen with these drugs is what’s called osteonecrosis of the jaw, where basically the jaw bone is becoming necrosed or less viable.

And you can imagine if the jaw is less viable, the teeth that go into the jaw in that spot, they’ll become loose and hurt, painful…it’s not a good condition to have it very…it affects quality of life significantly. So while it is rare, this osteonecrosis of the jaw can occur maybe less than 10 percent of the cases, but it is a significant morbidity-causing issue.

What I recommend to patients is that one, if that is happening, first of all, we’re not…we typically don’t continue that drug that is causing it, like a bisphosphonate or RANK ligand inhibitor. Secondly, the patient needs to see a good oral maxillofacial surgeon or a good dentist, preferably someone who has knowledge and experience in handling osteonecrosis of the jaw. So different ways in which myeloma treatment can affect the jaw, there is not a direct correlation, but in about 10 to 15 percent of cases, there may be jaw or teeth-related implications in myeloma patients either from the disease or its treatment like radiation or bone-strengthening drugs.

Lisa Hatfield:

Okay, thank you, and that’s a great segue into the next question we have from a patient, so if a patient cannot take bisphosphates doesn’t explain the reason why, are there other bone-building therapies that are recommended to protect them?

Dr. Sikander Ailawadhi:

Sure, so I would say that while we talk about these drugs like bisphosphonates, RANK ligand inhibitors, there are some other drugs that can be used to strengthen the bones, because you can imagine these bone-strengthening agents are used in a lot of different cancer, breast cancer, prostate cancer, etcetera.

So this family of drugs can be used, there are some that are used less frequently, but can be used instead of bisphosphonates and denosumab, but I would bring the patients back to even more basic stuff, calcium, vitamin D, exercise, bone-strengthening exercise. These are the first steps. Then come the other bone-modifying drugs, so even if a patient has been told that they cannot get any of those drugs because of the side effects, they could certainly say calcium vitamin D after discussing with their doctors, and they can regularly do some bone-strengthening building exercises sometimes it’s as simple as swimming, as simple as spinning, but those are like on the stationary bike, but those are extremely important activities to help build bone mass.

Lisa Hatfield:

All right, thank you. Have you ever had a patient that has reached complete response that you said, Well, maybe you don’t need to continue on bisphosphonates, that ever an option for patients to not continue after a certain period of time?

Dr. Sikander Ailawadhi:

Again, excellent question. And, in fact, historically, all the bisphosphonate-related clinical trials had up to a two-year follow-up, so a lot of times we used to say, “Well, at two years we need to stop them because there’s no safety data beyond that.” But more recently, there are studies that have shown that even every three months of bisphosphonates is as good as every month. So if somebody has active bone-affecting myeloma, then their treatment can be given every month or every three months.

But if a person has gone into remission, and remember, the myeloma was the inciting event that was causing the bone loss, if there is no disease, if there are no active bone lesions and the person is in good health, they  are active…no bone-related issues. You’ve done imaging. Everything is good. I think it certainly it can be done that the bisphosphonate can be stopped. And, of course, this needs to be actively discussed with the patient, but frankly, other than having the side effect concern, if I can have a patient not come in for a treatment and they can spend that much extra time with their family doing what they want to…I think that’s a win-win.

Lisa Hatfield:

All right, thank you. So another patient asking, I was told I’m in remission, but my light chain numbers are going up and the lambda is low. Are small fluctuations common?

Dr. Sikander Ailawadhi:

Very good question. And very important to keep in mind, yes, small fluctuations in light chains can happen as the patient mentioned, they said their light chain are going up, but lambda is low, so I’m assuming they’re talking about their kappa light chains higher and the lambda low. For light chains, the most important thing is that we don’t want just an individual isolated value, we want to see a trend if there is an upward trend in one of the values, the abnormal light chain, that is certainly a concern if the involved or the higher light chain is stable.

But the uninvolved or the lower light chain continues to go down. Well, that is still of concern, but may not mean that the disease is coming back, it may mean that the immune system is getting affected a little. All said and done, light chains are very volatile, they are very…they can fluctuate, they can get affected by our kidney function, they can get affected by our hydration status. So if there is a concern with light chains, they should be re-checked and there is a persistent movement of light chains in a certain direction that is an important time to figure out, is the disease coming back or is there another reason that the light chains are changing.

Lisa Hatfield:

Okay, how often do you check those labs in your patients, their light chain?

Dr. Sikander Ailawadhi:

For somebody who’s on active treatment, we check the light chains, we do the whole panel of myeloma lab reassessment with? Electrophoresis, immunoglobulins, light chains, we do that on a monthly basis for somebody who’s on active treatment, that they are… Some patients who are on maintenance and who are doing perfectly fine, and they typically come every three months to clinic visits on maintenance over there, although I prefer to check them every month, but I certainly know logistic challenges and frequency, so sometimes in selected cases, we’ll check it every three months, but in a patient who has been diagnosed with myeloma on treatment or has been on treatment before, personally, I don’t go beyond three months in any case.

Lisa Hatfield:

Okay, those are good guidelines for patients looking forward, especially newly diagnosed patients. All right, what are we learning about monosomy 13 in myeloma, is it a high-risk marker for myeloma?

Dr. Sikander Ailawadhi:

So, Lisa I think that’s an extremely important question because there has been historically a lot of discussion about a deletion 13, monosomy 13 deletion 13, meaning a portion of the 13th chromosome missing. Monosomy 13 meaning one…so half of the chromosome missing, because everybody has two of each chromosome, one set from the father, one from the mother, so one set is missing, that is monosomy, or one arm is missing its monosomy if a portion of the chromosome is missing deletion. Historically, quite some years ago, deletion 13 or monosomy 13 was in itself a high-risk marker, then the drugs or called the pareso inhibitor family, in which one of them is bortezomib came about and it showed that whether the patient had deletion 13 or not outcomes were similar when they got bortezomib so, it was no longer a high-risk marker.

In current day and age, there are certain mutations that are considered high risk, monosomy 13 or deletion 13 by itself is not considered a high-risk marker, but the co-presence of deletion 13 or monosomy 13 with some other mutations is considered higher risk just because it is telling us about more widespread genetic damage in the myeloma genetic material.

So for example, if somebody has a mutation called 1-Q, as some patients may read in their FISH report, if that 1-Q co-exists with deletion 13 or month, the risk of that one can is even higher. So by itself modulators, but it’s co-existence, but some other mutations bring up the risk category higher.

Lisa Hatfield:

Okay, thank you. And just to clarify for maybe somebody who’s just learning about their myeloma diagnosis and the cytogenetics of that, when you’re talking about these mutations, are you specifically talking about these mutations are only in the myeloma cells, they aren’t all in their body, and they’re overall in any other cells, just the myeloma cell.

Dr. Sikander Ailawadhi:

Absolutely, you’re spot on. So these mutations that are tested in the abnormal plasma cells from the bone marrow, which the term used for that is somatic mutation, disease-related mutations in the disease cells, these are not mutations that we were born with or we inherited, so if somebody was to take a sample from a healthy blood cell or in my lumping shop from the mouth or a spit sample that is not expected to carry these mutations, it is only the cancerous abnormal plasma cells from the bone marrow or a myeloma cell that have these mutations.

Lisa Hatfield:

All right, thanks for clarifying that. Great, what are some of the clinical predictors for relapse in myeloma and when should patients speak up?

Dr. Sikander Ailawadhi:

Okay, so when we say clinical predictors of relapse, well, let me look at this from the standpoint of a patient’s been diagnosed, they’ve been treated, which patients are more likely to relapse is one way of looking at, and if we are looking for our following up, Iain, what are we monitoring to look for relapse. So I’ll address mutates very quickly. So when we say what are the predictors of earlier relapse, the most important things that we know of are on any of the high-risk mutations we’ve been talking about, the fact that it’s standard of care to look for any genetic mutations in the center diseased plasma.

So the myeloma cells, presence of any high-risk mutations, for example, there’s one called deletion 17p to certain chromosome mutations like 14;16 translocation, etcetera. Patients should be aware of what mutations their plasma cells have, having high-risk mutations, risk of early relapse or short duration of response. Similarly, if a patient does not get a deep response to their prior treatment, they are more likely to come out of that response state sooner. One of the tests that has recently been used over the past few years, there’s something called the MRD test, minimal residual disease test, looking for one myeloma cell out of 100,000 or even one million bone marrow cells. 

If somebody’s MRD-negative, they are more likely to have a longer duration of response. If they’re MRD-positive, meaning detectable disease on MRD test, comparatively shorter duration of response, etcetera. So these are predictors of earlier relapse, there are some other predictors like kidney dysfunction, and typically that happens if somebody has persistent kidney dysfunction because they don’t typically get access to all the drugs, typically relapse occurs sooner.

Now, when somebody is getting monitored for their disease, as I mentioned, we do labs every so frequently every month, every two months, every three months. That is what involves all the myeloma markers, serum electrophoresis is to look for M spike, free light chains, look for light chain changes. We know globules look for increases in immunoglobulins, and that’s what helps pick up the recurrence of the disease.

Lisa Hatfield:

Why do some myeloma patients experience chronic kidney disease?

Dr. Sikander Ailawadhi:

So Lisa, I think that’s a very important question. Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. And something that I work on quite a bit, and I’m interested in this healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment. Now, I mentioned that these…or we discussed previously that these plasma cells, that normally live in the bone marrow, they produce these proteins and these proteins, heavy chains, light chains are part of our body’s immune system. But when these plasma cells become cancerous, they produce a higher amount of those abnormal proteins, these proteins circulate in the blood, and they frequently get depositing the kidneys.

So when these proteins are very high in number, an amount, these proteins can circulate in the blood and clog up the kidney tubules, and that’s where some chemical reactions also happen and kidney damage can occur. When somebody gets diagnosed with myeloma and they have kidney dysfunction, we have the option of the opportunity to reverse that kidney dysfunction if we treat the disease appropriately and with the right kind of drugs fast enough.

In fact, there is some older data study data, which shows that within the first two months, we are able to reverse the kidney function, then it is no longer a prognostic significant marker. And it’s extremely important if somebody’s kidney function is getting affected by their myeloma, that they need to be treated very aggressively to try and salvage and save that kidney function because the longer the kidney dysfunction stays, it is quite possible that it may become irreversible.

Lisa Hatfield:

Okay, thank you. So this next question has to do with the sequencing of treatments, which again, speaks to the fact that it’s super important to see a myeloma specialist, but the question is what treatments are available for myeloma patients who relapse after care?

Dr. Sikander Ailawadhi:

Very, very important question, and unfortunately a tough situation that we are dealing with because CAR T initially has been used for later lines of therapy as it is currently FDA approved with time, hopefully it will start making it may sooner in the treatment also, but when a person…when a patient has had treatment with CAR T, generally, they have already had treatment with most of the standard available drugs prior to CAR T, because the way CAR T is currently FDA approved is the patient has to have at least four prior lines of therapy, and generally, at least in the U.S. system, with the first three to four regimens or lines of therapy, we’ve already seen and exhausted most of the available drugs.

So you can imagine most CAR T, there is less drug availability that the patient has not had before or may not be resistant to, but if the CAR-T response lasted long enough, sometimes we are recycling some of the drugs after previously used, and the patient may respond to them again.

Another thing to think about in that place is from my standpoint, clinical trials are extremely important and patients must seek clinical trial options, as you mentioned, again, important to see a specialized myeloma center, but one of the drugs that was approved in 2022 bispecific antibody, teclistamab (Tecvayli), and there are some other related by specific antibodies which have actually shown some benefit despite the fact that they also target BCMA, which art targets, but patients who had prior BCMA therapy still had a very good response rate to, for example, teclistamab or some other…bispecific antibodies in clinical trials, so I don’t say that everybody who’s been treated with a BCMA CAR T should go immediately to a BCMA and bi-specific may not be the best option in all cases, but sometimes recycling older drugs in certain different combinations, clinical trials or options promising options like bispecific antibodies. We do have more jobs today than even what we had a year ago for patients who are progressing after CAR T-cell therapy.

Lisa Hatfield:

And that is really promising, I think as more and more people get CAR T-cell therapy and perhaps start to relapse. It is great to know that there are other options out there. They’re even, like you said, recycling some of those prior regimes that were used, and even talking about CAR-T therapy or clinical trials, this next question has to do a little bit with the disparity and access for myeloma treatment.

So the question is, myeloma treatment is expensive, with quadruplet therapy options, what measures are being taken that can help patients to have equal access, and I think that we can also add clinical trials to that too. Is there anything being done, or how can you encourage patients to have equal access, whether it’s the drugs themselves or clinical trials?

Dr. Sikander Ailawadhi:

So absolutely, I think, Lisa, that’s an extremely important question as I mentioned, this area of healthcare disparity in health care, inequity, for example, is something I’ve spent a lot of time doing my research my career and publishing in this area. Unfortunately, in today’s day and age, we still have a lot of these disparities that exist, patients may not get access to the right drug or the  right time because of their geographical region, because of their insurance, their education status, socioeconomic status, and sometimes even in other…situations being similar, just their race and ethnicity. Age is an important factor.

Also, I would say there…I think the important part is that it is much more knowledge, awareness, and intent to do something about it now, there’s, for example, in the forthcoming clinical trial that should be opening for really diagnosed patients across the country, soon through NCI and CTAC where the trial has been specifically designed to do it in as close to real world setting as possible, and when we were writing that trial, there’s a specific racial, ethnic minority accrual plan that we are writing around it, and that’s not…I would say just that trial, there are trials that are now specifically going in trying to enroll patients as much as possible from the real world and all walks of life.

And that’s said. I think the bigger question comes, like you started the question by asking the trials are there…we are trying to make a difference for trying to make some changes, changing the inclusion criteria so that patients would even now our accounts can go in, etcetera, etcetera. What about the drugs that are already available, quadruplet therapy, which is a pretty, I would say, demanding approach, because the patient needs to get multiple drugs multiple times, frequent visits back and forth to the clinic, co-payments office visits, labs, etcetera. It’s not easy.

Unfortunately, there are certain groups within our society that would have difficulty getting those access, but there are lots of resources that patients and caregivers can access, and hopefully those…help share some of the burden. These are either from the pharma companies or they could be from foundations or societies like the The Leukemia & Lymphoma Society and several other such concerns whose goal is to try and provide an equitable and just access to the drugs and how to get the most evidence-based treatment to every single patient.

So there are quite a few of these efforts in our practice, what we strongly recommend is that the patients, of course, get this knowledge and information through support groups, through their physicians, but also searching for this information online or in a lot of the larger institutions, meeting with the social worker frequently helps gain access to our information about a lot of these resources. So I think a lot of work has been done there, but to bring it down to an individual patient’s level, how can I as a patient get access to something…

I think the patients will have to ask those questions either from their physician, their care team, a social worker, online resources, support groups, that information is out there, we are trying our best to get it to patients that hopefully patients can seek out some of that as well.

Lisa Hatfield:

Thank you for that. I think that’s a really important thing to bring up is the access to healthcare, we do have people in our local area, because we are a smaller community, were unable to seek out the care of a specialist and it has had a detrimental effect on their outcomes. And so I think having that discussion and being open to your patients so you can’t have a discussion or even refer them to the social worker is so important, so all patients get equal access, it’s one less thing that patients have to worry about when they’re already…stressed and overwhelmed with their diagnosis, so thank you for explaining that. Thanks for talking about that. We sure appreciate it. 

So for myeloma patients, even though our insurance companies, sometimes we have to argue with them a little bit as if we’re beating down doors to get a bone marrow biopsy, nobody loves those, I’m not sure why insurance companies think we would actually want that. But what do you see in the future, I know there’s talk about mass spectrometry. Every myeloma patient would love to hear the words, you’ll never have to have another bone marrow biopsy.

Do you see a future in that and some of these newer tests that are coming out?

Dr. Sikander Ailawadhi:

Sure, I think that’s absolutely important to know because…yes, that’s the bane of our existence, unfortunately, disease primarily lives inside the bone marrow, so to get the true information…that’s where you go. So there are some tests that are being developed or researched, patients may have heard about what’s being termed, the liquid biopsy or taking a blood sample to identify plasma cells or disease, there’s a lot of research going on around it. But, unfortunately, it has not panned out yet, because by nature, plasma cells do not circulate in the blood, or if they circulate, it’s a very, very small amount, so it’s hard to pick it up from the blood and do the tests on it. But there’s a lot of research going on for it to get the plasma cells, get the FISH testing, and all the genetic testing from the blood. So stay tuned, hopefully we’ll get in that direction.

What you also mentioned, a test that’s been developed and done at Mayo Clinic is what’s called m-aspect or looking at these proteins, these M spikes, these light chains, the IgGs, etcetera. Looking at them at a molecular level and separating them based on their weight, because IgG kappa, for example, from one patient may be different from the IgG kappa that came from a different patient, but they can be separated out based on the weight, based on the molecular weight…on the size, and that can sometimes be used that how the test has been developed to use that property to identify and almost catalog and tabulate and follow that patient’s protein, so that we can hopefully collect or detect a recurrence sooner, note a deeper response to the treatment.

And in the future, hopefully, use that depth of response and that earlier recurrence as…or earlier detection of the protein as a surveyable matter of recurrence. I still think that it’s two different things, one is to look at the protein and note it at a deeper level to know whether the patients responded or relapsing, but so far, if you want to do those rotation testing, the FISH testing, and look at some of the characteristics of the myeloma, unfortunately, we do have to go to the bone marrow, but down the road, I’m hoping that those liquid biopsies and the blood tests will hopefully make it happen.

Lisa Hatfield:

Well, that would be music to my ears, even fewer biopsies would be great, so that would be awesome. Well, this was a great conversation, Dr. Ailawadhi, thank you so much on behalf of myself, and I’m sure a lot of myeloma patients and family members watching this, they’re so thankful and grateful for the time that you spend with us answering these questions, so thank you very much for your time, thanks for your expertise and I hope you enjoy the rest of your afternoon.

Dr. Sikander Ailawadhi:

Thanks a lot, Lisa. Thanks for having me, and I hope this was beneficial and interesting for the patients and their caregivers.

Pancreatic Cancer Patient Profile: Marissa Smith

Marissa Smith’s pancreatic cancer journey is anything but typical. For starters, she was 38 years old and working as a neonatal intensive care unit (NICU) nurse when she was diagnosed. She then found out that her cancer involved a neuroendocrine tumor on her pancreas, which is unusual when adenocarcinoma is more common with the pancreas. But even if her story is unusual, Marissa is happy to share her cancer story in case others can benefit from what she learned during her journey.

When Marissa reflects about the beginning of her cancer story, the first symptom she experienced was a sour stomach. “Nothing was helping. I decided to eat, and that made me feel worse. I had pain in my upper abdomen, chills, and sweating. My friends who were nurse practitioners thought that my symptoms sounded like gallstones.” Married with two young children, she and her husband didn’t have any family who lived in their area, so all four of them had to go to the Emergency Room. They were fortunate to have friends who could take their kids to stay with them for the night.  

Marissa’s journey progressed pretty rapidly from there. She received an ultrasound, a CT scan, and then was informed there was a tumor with well-defined edges on her pancreas. The community hospital then sent her to a hospital in the city to get a biopsy of the tumor. A week later, she met with the surgical oncologist to find out the type of tumor and her treatment plan. “It was a golf ball-sized pancreatic neuroendocrine tumor. He said it was very slow-growing and that I’d probably had it for a long period of time. So I might have passed a gallstone, and it’s quite likely that my tumor was found out of sheer luck.” Her doctor suggested the Whipple procedure to remove the head of her pancreas, part of her stomach, part of her small bowel, gallbladder, and bile duct. She also received a PET scan prior to surgery to confirm there weren’t any additional tumors. 

Following Marissa’s surgery, her recovery also wasn’t typical. “I had what we call ‘nurse curse,’ which is every complication that’s imaginable. My stomach was getting very bloated, and I was in pain. Pancreatic fluid was leaking into my abdomen.” She had multiple scans and tests and two procedures where they removed the fluid from her abdomen and then analyzed the fluid. Her hemoglobin level dropped, her care team had to reinstall a tube, and she experienced a gastrointestinal (GI) bleed. After the GI bleed, Marissa received a blood transfusion, and her team later informed her that they almost had to put her in the intensive care unit. “Then when I was eating after I got home, and my nurse practitioner friend could see that my food was coming back out of my drain that they put in. The connection between the stomach and my small bowel was leaking.” Her care team wanted to pull her drain out and send her home, but Marissa insisted on staying for observation for 24 hours with all the complications that she’d already experienced.

Reflecting back on her recovery, Marissa says, “I feel I was fortunate to be in good physical condition just prior to my diagnosis. I lost a lot of muscle mass while I was in the hospital, but I would have had a more difficult time if I had been in worse physical condition before my diagnosis.” 

Marissa got involved with patient advocacy groups after she completed treatment and returned to work. She didn’t do online research after her diagnosis, since her doctor was pretty straightforward with her treatment plan. The COVID-19 pandemic began right after she returned to work, so unfortunately there were no in-person support groups.  

Throughout the process, there were many lessons learned that she wants to share. “Educating yourself is so important. Trust your doctors. Understand what they’re saying or ask questions if you don’t understand. I think your outlook is very important. Understand what your goals are for your life and how you want to live your life.” Patients and their loved ones need to weigh the different factors and goals for during and after treatment. Some patients might choose quality over quantity in their cancer journey, and it’s a personal decision for each person.

Marissa was in awe of her husband and kids. “My kids have been amazing. My team thought I’d be in the hospital for a week for treatment, but it ended up being a month. I went in before Thanksgiving and didn’t come home until just before Christmas.” She returned to work in February, and then the COVID-19 pandemic started. “Our kids were in preschool and 1st grade at that time. That was a horrible year for everyone, but our kids were just incredible. My family is awesome.” At the time, Marissa was in a doctoral program, working a weekend night shift, and hybrid homeschooling our kids. In early 2021, she took a leave of absence from school, went down to two 12-hour night shifts, and was with their kids for their remote school time in the hybrid model. “I ended up working as a substitute nurse in our school district when we switched back to full in-person learning, and I’m now working as a nurse in our home district with our oldest child in my building. I love it, but I took a 50 percent pay cut moving from the hospital to a public school, but my work-life balance is worth it.” She and her family especially enjoy hiking and the outdoors at Adirondack State Park and Lake Placid. They’ve simplified their work lives to enjoy more time with their kids.

Marissa has some other advice for patients and loved ones, “I know it’s hard for some people to ask for help, but ask for help when you need it.” Her family had a meal train that was delivered to a cooler on their front porch so that friends could leave food without intruding at all. Friends took their kids to their activities. Marissa saw a therapist and is still going to process all her feelings about her cancer experience.

Even though going through cancer was difficult, Marissa is so grateful for her family and friends who supported her through everything. She also stresses the importance of self-advocacy. “It’s your body, and you want to make sure you understand what the specialists are telling you. Make sure that you’re making an educated decision for yourself and that you have all the information you need to make the right decision for you and your family.”

Actionable Prostate Cancer Tools and Resources for Optimal Care

As part of our Patient Empowerment Network (PEN) commitment to educating and empowering prostate cancer patients and care partners, our Prostate Cancer Clinical Trials 201 and Thrive programs are here to help. These programs provide clear, actionable information and share tools and resources for patients and loved ones impacted by prostate cancer.

Why Should You Consider a Clinical Trial As a Prostate Cancer Treatment Option?

Though clinical trials may sound intimidating or even scary to some prostate cancer patients, they’re an important part of the treatment option toolbox. Prostate cancer expert Dr. Andrew Armstrong from Duke Cancer Institute shared his expertise in the Prostate Cancer Clinical Trials 201 webinar. “And that’s because clinical trials often can change how we think about cancer, how we treat cancer, can improve cure rates, can improve survival. Most of our drugs and treatments that have been successful in all cancer have been the result of clinical trials.

For those who have depleted their treatment options, prostate cancer clinical trials are essential in moving research forward to provide both additional treatment options and additional treatment options. According to Dr. Armstrong, “But many patients, their cancer becomes resistant to proven therapies. That’s certainly an area where clinical trials can make a big difference, either to put off chemotherapy or more toxic therapies, or in patients who have exhausted proven therapies. That’s certainly appropriate.

Clinical trials can also be approached as a way to save some treatment options for later in a patient’s treatment journey. Expert Dr. Sumit Subudhi from The University of Texas MD Anderson Cancer Center shared his perspective. “So, my personal approach is to try to put clinical trials in between and always have something in my back pocket so that if they get a bit exhausted or they want to spend more time with friends and family, they can get the standard of care treatment.

In clinical trials in which safety is a concern, additional precautions are taken to ensure patients receive extra attention and monitoring. Dr. Subudhi shared about these precautions. “So, in those cases, some trials, if we’re concerned about safety, you’ll be spending more time in the doctor’s office or in a hospital being evaluated.”

What Does It Mean to Thrive With Prostate Cancer?

With essential and optimal care, it is possible to thrive with prostate cancer. In the Thrive Prostate Cancer webinar, prostate cancer expert Dr. Tanya Dorff from City of Hope her perspective about helping patients in their care. “As a medical oncologist, my job is to try to strike a balance between cancer control and quality of life, and I guess that’s how I would put thriving with prostate cancer. It’s not always just about what is the PSA doing, but it’s also about ‘How are you getting around your day-to-day life activities, and are you able to do the things you enjoy?’ So, treatments can be very effective. They can also have significant side effects, and we spend a lot of time day in and day out trying to help men strike a good balance.”

Emotional care and coping with emotions like fear and anxiety is another important aspect of thriving with prostate cancer. Dr. Dorff explained why it’s important for patients to share emotional issues with their care team members. “…it tells us they’re open to it. If we have to ask every patient, ‘Are you having any emotional distress?’, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important.

Managing Prostate Cancer Treatment Side Effects

Managing treatment side effects are a key piece of thriving with prostate cancer. Expert Dr. Rana McKay from UC San Diego Health shared the importance of learning about potential treatment side effects. “…discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.” Other common side effects with hormonal therapies include muscle loss, bone loss, hot flashes, and decreased libido.

For patients who undergo chemotherapy, common side effects include fatigue, risk of infection, decreased blood count, numbness and tingling in the hands and feet, and swelling in the legs. For immunotherapy, it’s a fairly well-tolerated treatment, but some patients may experience fatigue, rarely some dizziness or lip sensitivity, and numbness.

Common side effects of targeted therapies include fatigue, decreased bone marrow function, gastrointestinal side effects like nausea, and rashes. Some immune therapies can cause immune-related adverse events or overactivation of the immune system developing issues like colitis or pneumonitis, which is inflammation of various organs.

And though sexual dysfunction can sometimes accompany prostate cancer treatment, there are some options for patients. Dr. Dorff shared her knowledge about what patients can do to alleviate sexual dysfunction. “So, this is generally an area that’s managed more by urology. There definitely are things that urologists do to help patients who have lost sexual function due to prostate cancer treatments. They can involve medicines, they can involve slightly more invasive things like a suppository or an intracavernosal injection. There are also more mechanical ways, like a pump device or a penile implant, but generally, anything beyond the first level, which is Viagra, will be handled more by a urologist than a medical oncologist.

Prostate Cancer Clinical Trials 201 Program Resources

The Clinical Trials 201 program tackles common misconceptions and provides clear, actionable information about trials, sharing tools and resources for patients who are considering clinical trial participation. Clinical Trials 201 includes:

Prostate Cancer Thrive Program Resources

Care decisions are a vital piece of prostate cancer care, and patients can take action to empower themselves toward optimal care by working with their healthcare team. The Thrive program provides tools and resources for living with and beyond prostate cancer. Thrive includes:

With prostate cancer research and treatment advances along with more support resources, patients and care partners can become partners in prostate cancer care. By building their prostate cancer knowledge and confidence, patients and their families can make educated decisions as part of a team while also using support resources to truly thrive with cancer. We hope you can use these valuable prostate cancer resources to work toward your optimal patient care.

How To Participate in Cause Awareness Days: A Step-by-Step Guide For Patient Advocates

Taking part in cause awareness days can be a great way to get your message out. Cause awareness days are specific days (or weeks/months) dedicated to raising awareness and educating the public about a particular cause. People and organizations get to join together, use their collective voices, and make a difference.

In this step-by-step guide, I’ll show you how to participate in cause awareness days more effectively to make a meaningful impact on behalf of your community.

Step 1: Identify relevant cause awareness days

Research and make a list of cause awareness days related to your disease or condition. This information can be found online and through patient advocacy groups. Several websites provide calendars of awareness days, such as the National Health Observances calendar maintained by the US Department of Health and Human Services and PEN’s Cancer Awareness Calendar 2023.

Tip: Don’t limit yourself to disease-specific awareness days. There are many ways to expand your advocacy efforts and engage a wider audience, for example, during days such as World Mental Health Day, International Women’s Day, and World Sleep Day.

Step 2: Plan your strategy

Decide how you will participate in each cause awareness day. Think about different ways you can make an impact, such as sharing educational resources, personal stories, or statistics, hosting fundraising events, speaking engagements, and conducting community outreach. Create a calendar to track your activities and stay organized.

Step 3: Create your content

Make your content engaging by following these tips:

  • Use graphics, videos, or infographics to make your content more visually appealing and engaging. Be sure to use high-quality images and videos that are relevant to your cause. 
  • Keep it concise. Attention spans are short, so keep your content short and to the point. Use bullet points and headers to break up text and make it easier to read.
  • Be sure to fact-check your content and cite credible sources. Misinformation can damage your credibility and harm your cause.
  • Tell a story. Stories are powerful tools for creating emotional connections with your audience. Share personal stories or anecdotes that help illustrate the impact of your cause.
  • Provide actionable steps. Your content should inspire your audience to take action. Provide actionable next steps to get involved or support your cause.

Step 4: Spread the word

A crucial part of raising awareness is spreading the word. To share your content effectively, follow these tips:

  • Share your content on your social media channels, and use hashtags to increase visibility. 
  • Email is still an effective way to communicate with your audience. If you have a list of email subscribers, share your content with them and encourage them to share it with their networks.
  • Collaborate with other patient advocates, organizations, or influencers who are participating in the cause awareness day. This can help amplify your activities and increase the reach of your message.
  • Reach out to local media outlets to share your story. Pitch a story to a reporter or submit a press release to local news outlets.
  • If you have a budget, consider using paid advertising to reach a more targeted audience. 

Step 5: Participate on the day

On the day participate in the activities you have planned. Don’t forget to use relevant hashtags and tag other organizations or individuals who are also participating. Be sure to respond to comments, messages, and mentions on social media. This can help build relationships and trust with your audience. 

Step 6: Follow up

This final step is often overlooked. However, to my mind, it’s one of the most valuable aspects of participating in cause awareness days. This is because it helps to build a community of advocates who are passionate about the cause and can support each other in their efforts.

Here are some ideas to follow up and build on the momentum of the day:

  • Send a message to those who participated in your activities and thank them for their support. Let them know how much their support means to you and to the cause.
  • Share the number of people you have reached with your online activities, your engagement rate, and other relevant metrics to demonstrate the impact of your combined efforts. 
  • Stay connected with those who participated in your activities and build relationships with them. Follow up with them throughout the year and invite them to participate in future activities.

Participating in cause awareness days is a powerful way for patient advocates to bring attention to critical issues that affect their communities, inspire change, and motivate others to join them. Yes, it takes planning and time, but the effort you put in is worthwhile when it contributes to the creation of a movement of passionate advocates that are committed to the same cause.

Negotiating Debt, Managing Your Finances and Gaining Financial Security

Debt can be crushing. It can cause people to delay marriages, purchasing of a home and even decline or delay needed medical treatment. In fact, one of the leading causes of bankruptcy is medical debt. Many people are unaware that they can negotiate their debt with many creditors, It pays to be aware of the options you may have. I’m going to review some of these negotiation options with you. This list is not exhaustive. If you have bills that you’re having a hard time managing, don’t be afraid to ask your creditor. Understand how debt default can affect your credit and can lead to legal action including the seizure of property. Don’t let this happen to you.

Tax Debt

If you have outstanding debt with the IRS, talk to them. It’s important to understand that interest and penalties will continue to accrue on any outstanding balances. The sooner you speak to them the better off you’ll be. You may not be able to completely eliminate your debt, but you may be able to get it reduced or set up payment arrangements that will make it more manageable. Most creditors, from the mortgage company to hospitals to loan companies are willing to discuss your situation. For many people who delayed or did not file a 2021 tax return, penalties can accrue at a 5% rate of the unpaid taxes for every month until reaching a 25% cap. Additionally, interest will compound daily at a current rate of 7%. This interest rate may go higher if the Federal Reserve raises rates. There is also a late filing payment penalty of .05% of the unpaid taxes, an amount that accrues monthly. You can see how your outstanding debt can increase significantly. Unpaid taxes can lead to garnishment of wages, money can be taken from checking and savings accounts and the IRS can seize real estate and vehicles.  

If you owe delinquent taxes, contact the IRS and set up a payment plan. If you don’t have the income or resources to pay taxes, taxpayers can apply for an “offer in compromise,” which can reduce the overall tax liability. Another option is to ask the IRS to report the debt as currently not collectable. This will temporarily suspend certain collection actions such as seizure of property. This action does not erase debt and it will also continue to accrue interest. I would caution taxpayers to be aware of scammers that say they offer assistance with the IRS. Do your due diligence 

The collection process and penalties assessed vary greatly depending on circumstances. Many people are unaware that if you live in a federally declared disaster area or are a member of the military serving in a combat zone, exceptions can be made. 

Mortgage Debt

Many people remember the many homeowners that found themselves upside down on their mortgages in 2008-2009. Consequently, many lost their homes, 

According to the New York Federal Reserve Board, in the last quarter, 0.57% of all mortgages were seriously delinquent. There is a concern that with the rising interest rates along with the higher house payments, delinquency levels may rise in the coming years. Homeowners who are significantly behind in their mortgage payments should contact their mortgage servicer immediately. Describe your situation and how you plan to repay what is owed. Missing mortgage payments will hurt your credit score, so consider asking your loan services for a loan forbearance, which will pause or reduce your mortgage payments. The missed payments which are due at the end of the term will include interest during the forbearance period. You can also ask for a payment plan arrangement. Also, some portage servicers will offer a payment deferment in which the missed payments are added to the end of the home loan. The homeowner must be aware that if the mortgage debt continues to accrue, the loan servicer may push the homeowner to sell the property. 

Credit-card Debt

In an environment where interest rates are rising, credit card holders can find themselves in trouble when their purchases and interest charges snowball to the point where they can’t make the minimum payments. It may pay to seek help from the National Foundation for Credit Counseling. It is a collection of non-profit member agencies that help consumers develop a plan to both reduce their living expenses and pay outstanding debts. The counselors work with your credit card company to make the payments more affordable. The payments are made to the agency which disperses the money to the creditors. The credit card companies may vary in their assistance. Consumers will need to provide documentation of the extenuating circumstances that led to the debt. You can also reach the credit card company yourself and save money on fees and negotiate with them directly.

Student-Loan Debt

Many older people are finding that they’re holding student debt for adult children. Also, student loan holders find themselves in limbo waiting for the supreme court to rule on the legality of President Biden’s plan to forgive up to $10,000 per person in federal loans and up to $20,000 in federal loans to borrowers who also received Pell Grants. Borrowers can assess whether their monthly payments are still manageable once the pause ends. If not, contact the loan services and inquire about deferment and/or forbearance options, as well as other repayment plans. 

Medical Debt

Almost a quarter of all US adults say they have past due medical bills including bills they cannot afford to pay, according to the Kaiser Family Foundation. There are options to help manage the burden of medical debt. One of the first things a person can do is prepare for the cost of a procedure. Ask about the cost as soon as possible. Also make sure you understand your insurance and what it will and will not pay. Thirdly, make sure your medical bills are accurate. Upwards of 80% of medical bills are incorrect. Don’t pay a bill unless you have verified the itemized expenses with the Evidence of Benefit statement. If there are errors you can file an appeal. Many hospitals have charitable programs to help patients cover medical bills. They can also help you establish a payment plan to pay your outstanding bills. You can ask if the bill can be reduced to an amount you can pay. It doesn’t hurt to ask. Be prepared to provide documentation, such as proof of income, insurance, disability and even your proximity to the facility if travel expenses are significant.  

Patients can apply for grants through the Patient Advocate Foundation and other non-profit organizations. Funding comes mostly from private donations and health-related nonprofits devoted to specific ailments, such as the Leukemia and Lymphoma Foundation. 

Some healthcare providers offer medical credit cards to their clients. They come with no or low interest introductory rates that will later reset to a high rate. Consumers should be aware that these rates may be higher than that of regular credit card rates. It pays to take this into consideration before signing on the dotted line.  

 

Don’t be afraid to ask for help with any of your creditors. Getting control of your finances will reduce financial stress and allow you to focus on more important things in life.  

The Power of Shared-Decision Making: A New Revolution of Care

I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward. 

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient. 

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes. 

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient! 

#patientchat Highlights – Self-Advocacy and Self-Education

Last week we hosted a “Self-Advocacy and Self-Education” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Can you recall a time where advocating for yourself improved your care?

Tweet from Alan Brewington


How can you become an effective self-advocate?

 


Full Transcript

Hospital Charity Programs: What You Need to Know

Understanding Hospital Charity Programs

Many of you may be aware that some laws have changed regarding reporting of medical debt to credit agencies. Those new laws are most favorable to individuals. Particularly for those patients who have frequent doctor visits and accrue numerous bills. However, it is most surprising to me that many patients are not aware of the many programs that can help them pay for medical care that they have amassed. Here is the low-down on what you need to know in order to access these charitable funds if you are going to a non-profit or a for-profit hospital for your care. 

What is a Hospital Charitable Program and How can you access it?

According to the IRS, Non-Profit hospitals or NFP’s are those hospitals that are not required to pay property-tax, state or federal income tax, or sales tax. Non-profit hospitals account for nearly 58% or three fifths of community hospitals and provide charity programs. Parameters are set by federal regulation in addition to charity-care policies that are set up by individual hospitals. The policies set up by individual hospitals can vary in terms of eligibility criteria, application procedures, and the level of charity provided. Hospitals bear the direct costs of providing charity care, support from donors and federal, state, and local governments may cover some or even all of these expenses.  

In exchange for tax-free status, nonprofit hospitals are expected and required to distribute any additional capital back into their surrounding communities. Because of this, non-profit hospitals face additional scrutiny by healthcare policymakers concerned as to whether and how the facilities are following through and contributing to their communities in a meaningful way to justify the tax exemptions that they are receiving. They question how the funds in the communities are being spent. 

You should know the type of  facility you are visiting. Don’t be afraid to ask. Find out about their charity and community programs. Many states have required that this information be readily available to patients. Unfortunately this isn’t always the case. Ask for a copy of their charity plans and how to access it. Get names and the phone number of people who manage it.  

For-profit hospitals are investor-owned. These facilities aim to make profits for their shareholders. Some of the largest for-profit hospital chains in the U.S. include Hospital Corporation of America,And HealthSouth. Not surprisingly, for-profit hospitals are generally among the highest-billing hospitals in the country.  

How do they compare?

Day to day functions look very much the same between the two types of organizations One very distinct difference however, is that for-profit hospitals typically use considerable portions of their available budget for marketing and advertising initiatives, as compared to non-profit facilities. For-profit hospitals tend to serve lower income populations while nonprofit hospitals are generally found in communities with higher average incomes and fewer under and uninsured patients.  

Consequently, nonprofit hospitals maintain higher bad-debt to net patient revenue ratios than for profits, although for profits with the highest bad debt to net patient revenue ratios tend to maintain higher ratios than nonprofit facilities. 

A study done in 2020 found that nonprofit and for-profit hospitals provide similar levels of charity care-another type of uncompensated care-when examined as a percentage of total debt. 

The Internal Revenue Service defines charity care or financial assistance, as “free or discounted health services provided to persons who meet the organization’s eligibility criteria for financial assistance and are unable to pay for all or a portion of the services provided”. In some cases depending on their criteria hospitals may provide charity care to both uninsured and insured patients.  

Who is eligible for hospital charity care?

Hospitals have a lot of flexibility to establish their own criteria for charity care. For instance, one analysis of a large sample of nonprofit hospitals that used the Federal Poverty Level to determine eligibility for free care in 2018, found that about one in three (32%) of the hospitals required patients to have incomes at or below 200%  the FPL or imposed more restrictive eligibility criteria, while the remaining sample (68%) relied on higher income caps. For discounted care, (62%) of nonprofit hospitals in the study limited eligibility to patients with incomes at or below 400% FPL or used lower income levels. The remaining (38%) rely on higher income caps. 

The conditions that hospitals put on the free or discounted care can vary. Patients may need to have few assets or must live in hospital service areas. Other criteria may also become  determining factors for free or reduced care.   

Unfortunately, from my experience, all patients are not getting access to this free reduced care because the information is not readily available or they don’t know that they may be eligible. For example, non-profit hospitals have estimated that  of the bad debt they reported in 019 reflecting 2017 expenses or earlier, about $2.7 billion came from patients who were likely eligible for charity care but did not receive it. Now it would be interesting to see how this picture has changed post COVID. These numbers are rough estimates coming from unaudited hospital reports and do not account for all facilities or for patients who qualified for charity care but still paid their bills.  

Patients have a right to know the cost of care and where they can get help if they qualify. Don’t hesitate to ask what’s available at your care facility. Ask prior to services and after services are provided. Fill out your required documentation and do so in a timely manner. Be empowered to better your physical and financial health.