PEN Blog Archives

Three Reasons MPN Patients and Their Families Should Continue Telemedicine

What are some reasons why MPN patients and families should continue to use telemedicine visits? In the “Should MPN Patients and Their Families Continue Telemedicine?” program, expert Dr. Kristen Pettit from Rogel Cancer Center shares three ways myeloproliferative neoplasm (MPN) patients and families can benefit from continuing to use telemedicine for care.

1. Access to Care

One of the most impactful benefits to patients from the COVID-19 pandemic has been the emergence of telemedicine. Telemedicine has brought improved access to MPN experts, care teams, and specialty cancer centers via smartphone, tablet, or computer to broaden expert care for patients and care partners. Many family members or friends can now join telemedicine visits to help ask questions and to take notes for more engaged patient care.

2. Safety and Travel Benefits

The use of telemedicine has also brought safety and travel benefits. Patients and care partners have reduced the amount of time they spend in clinics and waiting rooms. Their risk of infection with viruses, bacteria, and other illnesses has been decreased when some of their MPN care appointments can be carried out remotely. And reduced travel to appointments helps patients and care partners in lowering  travel costs and stress related to commuting or scheduling rides.

3. Remote Monitoring

MPN patients must also empower themselves to keep track of their health concerns to ensure their remote monitoring is reported accurately. Patients and care partners can monitor any weight changes, enlargement or feeling of fullness with their spleen, feeling overly tired or fatigued, and other symptoms their care provider has mentioned as symptoms to be aware of. If you have any questions about symptoms, make sure to ask your doctor.

By continuing to take advantage of telemedicine, MPN patients and care partners can reap the benefits of remote care paired with in-person visits as advised by your doctor. If you’d like to expand your knowledge, check out our MPN information.

How Do Lung Cancer Patients Benefit From MRD Testing?

How Do Lung Cancer Patients Benefit From MRD Testing? from Patient Empowerment Network on Vimeo.

MRD testing is another tool in the lung cancer care toolkit. Expert Dr. Christian Rolfo from Mount Sinai explains how MRD testing aids in patient monitoring, use of liquid biopsies in patient care, and updates about immunotherapy for early stage lung cancer.

See More from Best Lung Cancer Care

Related Resource:

How Can Specific Biomarkers Impact Lung Cancer Progression?

How Can Lung Cancer Disparities Be Addressed?

Lung Cancer Treatment Landscape Overview


Transcript:

Dr. Nicole Rochester: 

There are a few questions from our audience that I would love to present to you, and so one of them comes from MacKenzie and MacKenzie asked, “Can you speak about MRD testing and what that means for lung cancer?”

Dr. Christian Rolfo: 

Yeah, and that we were discussing briefly. So minimal residual disease is the…as I say, when we have an operation, we can have the opportunity to have completely resected a tumor, but we don’t know more than with the CT scan when the patient will recover. So we are without an answer believing every follow-up visit what has happened, seeing if it has gone. So we are trying to reduce this…reduce the anxiety first of all, to try to get the tools that are able to identify patients that they can recurrence, have a recurrence so liquid biopsies, one of them, and we have now the several methods that are trials and several data coming that there are some companies that actually they are a market for some of the options, we are still having validations, required validations, but we will certainly be there very shortly in time to identify these patients and to treat them in the proper time.

Dr. Nicole Rochester: 

Wonderful, and I think you just addressed a question that came in from Harold, which was., “Is liquid biopsy playing a role in monitoring disease recurrence in lung cancer?”

Dr. Christian Rolfo: 

Sure, we are actually tailoring treatments and checking the patients, and I have several, several experiences in patients that they’re monitoring over the time, and we have actually some of the vendors that are proposing this approach monitoring, liquid biopsy is a great tool because it’s minimally invasive, it’s just a blood draw, and we can continue. Not all the patients have the possibility in terms of they are not all cheaters, that is something we need to know DNA, so it’s the majority of them, we can do it in some minimal proportion, we cannot do it when there are also possibilities to follow them.

Dr. Nicole Rochester:  

And our last question from the audience comes from Laura, and she wants to know, “Are  immunotherapy combinations in the metastatic setting, expanding to treat earlier stage lung cancer?”

Dr. Christian Rolfo: 

Yeah, absolutely, we have actually an FDA approval for us, one of the immunotherapeutic drugs in patients after the resection of the disease with some characteristics, but we are there and actually we are having more and more clinical trials using in earlier stages so we will say in the other stage from the earlier stage from that is the neoadjuvant, and we call that when we are doing a treatment to reduce two months to be operated later on, so we have also some trials that are going there, but we have an approval already for the adjuvant setting that is after the surgery in some patients. 

Dr. Nicole Rochester: 

That’s wonderful. You’ve given us a lot of good news. A lot of hopeful news, Dr. Rolfo, it is time for us to wrap up. I want to thank you again for being here for sharing your expertise. 

How Can Lung Cancer Disparities Be Addressed?

How Can Lung Cancer Disparities Be Addressed? from Patient Empowerment Network on Vimeo.

Lung cancer disparities work against care for some patients, but how can they be addressed? Expert Dr. Christian Rolfo from Mount Sinai explains some disparities in patient populations and how care can be improved for these underserved patients. 

See More from Best Lung Cancer Care

Related Resource:

How Can Specific Biomarkers Impact Lung Cancer Progression?

How Can Drug Resistance Impact Non-Small Cell Lung Cancer?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester: 

So I’d love for you to talk a little bit, Dr. Rolfo, about some of the challenges related to appropriate access to lung cancer care as it relates to different socio-demographic populations, and then how can we begin to address those disparities.

Dr. Christian Rolfo: 

Yeah, this is a topic that is really in my heart because I was coming with you before we start the communication, the recording of this. I was working in Europe before coming to the United States. I was shocked by the disparities that we see in some healthcare situations, so in my position before in Europe, we have a healthcare system that discovering for patients and we have, obviously, difficulties, but here I saw in some communities really under-served in terms of access to different service and healthcare is one of them. 

So we need to be conscious about that when we have patients that are struggling to get transportation, we have patients that are struggling to get approval for some drugs. So, there are a lot of areas that need to be addressed, disparity also in terms of language, we have also patients that are not understanding the doctors, we have patients that are having difficulty when to get to the app information when we are saying, Oh, you can see your report in your app, so it’s not easy for some of them, we have generational gaps as well, these are disparities as well. So taking or being conscious of all these factors is making us take action and how we can take actions in our institutions, and in several institutions in the country, we have the support of an experienced team that is addressing that, and teams are specific that are working for disparities. Some of them are social workers, some of them are advocate patients, so we have a big team of institutions that are helping to the patients to go for different scenarios, and even we have patients that are homeless, so how we treat patients in these conditions when we know that the patient is in a shelter, so if you have toxicity, what will we be doing. So all these things are taken into consideration, believe me, because it is like New York, you have a big disparity of or a big diversity, and we say of populations in one consultation morning, you can see all of them in your waiting room, so we need to try to address all this, and there are politics that are coming from us as a healthcare system, but there are also politics that they need to come from governmental politics, so try to use these…all the tools that we have at our disposal are important, and also we have a very good support of advocacy groups. 

And this is something that I want to really profit their patient to say thanks because we have several, several advocacy groups that are doing a terrific job from testing to helping patients to go through this journey. So it’s really an important job, and obviously families, families are helping to these disparities and patients, so patients themself. So what I say always to the patient, raise your voice, empower yourself. Try to ask for your rights if you don’t understand your doctor… Ask again, if you want to have a second opinion, talk to your doctor, that is the most important thing. We are very open to help the patients, and that is our mission. So if I say to my patients, If you want to have a second opinion, please let me know, and I try to direct you to somebody who is an expert in the field and can help us to learn better your disease or your treatment, but I think it’s a situation that everyone is winning, especially the patient, but also ask for future patients understanding better every case. 

How Can Specific Biomarkers Impact Lung Cancer Progression?

How Can Specific Biomarkers Impact Lung Cancer Progression? from Patient Empowerment Network on Vimeo.

Lung cancer progression can be aided by monitoring of biomarkers, but what do they indicate? Expert Dr. Christian Rolfo from Mount Sinai explains biomarker characteristics that help monitor disease progression and how clinical trials help in treatment advances.

See More from Best Lung Cancer Care

Related Resource:

How Do Lung Cancer Patients Benefit From MRD Testing?

How Can Biomarkers Help With Lung Cancer Treatment?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester:

So with regard to the biomarkers, you mentioned that these are kind of unevenly distributed among different populations depending on your origin, and so how does that play into the progression of the disease, what do we know about why patients with specific biomarkers have a different degree of disease progression?

Dr. Christian Rolfo:

Yeah, so we know more or less that the characteristics, I mean more or less in terms of the evolution of the clinical characteristics of these patients, in terms of organ affection in case of progression, but what is most important of this is that we are able to continue to identify, and I say monitoring these patients with liquid biopsy, for example, this is a good tool to understand or to understand it a bit better, which kind of mechanistic involvement. 

So because we have, for example, patients who were receiving the case that I was discussing before EGFR mutations and they received one graft from the very beginning, a third-generation TKI is the one that is approved for the first line, and this patient has a progression. The possibility to have a mechanism of resistance is different, so we can have mutations that are coming in the same pathway, so in the same area, same kind of mutation, but different location, just to the people understand is the kind of line and we have the mutation that is here, the one that we are attacking, but we have another mutation that is in this area, and it’s not covered by the track that is covering this mutation. 

So we have nowadays drugs that are going to, in this area in clinical trials, or we have in other cases other areas of the task of mutations that have nothing to do with the original one. So we are activating another kind of pathway, or we are transforming the tumor from one kind of tumor to another kind of tumor, so for this reason, identify which kind of mechanism of resistance is in place can have an important or have important implications for how we are treating these patients,  so we need to look at that to treat the patients.

Dr. Nicole Rochester: Wonderful. And speaking of resistance, we know that there are some patients who end up trying multiple therapies in order to treat their lung cancer, are there alternative treatment strategies for lung cancer patients who have failed all therapies? 

Dr. Christian Rolfo: 

Yeah, absolutely, we have research in lung cancer is never stopping in oncology generally, but in lung cancer it’s really exciting to see how this research is evolving, and it’s arriving to the patients the meaning of the research when we are doing access to the patients, to the discovery of the finding that we have, and obviously, we have strategies in the clinical practice, but also we have the clinical trials. So clinical trials, and that is something we need to try to define very well because some patients believe that when we are going to clinical trials there are no more options or we don’t have any other options to do. 

We are sometimes using clinical trials even in the first line, so even in patients that are for the first time being treated. Because we know that some of the cases we are treating patients with from some standard of care and using drugs on top, we want to explore it, we can improve these outcomes that we already know. That could be also a clinical trial, that is also a clinical trial. So don’t take the participation in a clinical trial as the last option that you have, sometimes you will go to your doctor and the first time that you see a doctor for your first diagnosis, they can propose a clinical trial. 

And this is really valuable. What we really appreciate is the collaboration of the patients to be in clinical trials, because we need to remember that the drugs that we are using today were analyzing other patients before, so the treatment that you are receiving in a standard of care today were before a clinical trial, it’s really important how we can interact with the research and the clinical practice very easily, so we have also some options that are…for what we call early drug development, that there are some drugs that are in patients who are receiving the standard of care, and they have the opportunity to be treated in new drugs, and you can discuss…believe me there, and 

I know that there is a lot of questions about clinical trials but the clinical trial setting is really restrictive, it’s very well-coordinated, so you would be part of a very coordinated and structured things that they try to protect the patients in the first instance, and try to understand also how we can help the patients and the future generations. So that is really why we appreciate patients that the contribution of patients that are giving to this clinical research because it’s helping to advance the knowledge for the new patients as well.

Dr. Nicole Rochester: 

And I really appreciate how you described clinical trials, and particularly your distinction about it’s not always this last ditch effort that sometimes you all are using clinical trials as first-line therapy. One of the common things is that clinical trials are tomorrow’s medicine today, and helping patients and families to understand that there’s value in being involved in clinical trials and that…and I think with COVID there’s a little more understanding, but certainly, we have a long way to go, and so I appreciate you sharing that. Do you have any specific examples of patients in your practice, and not names, of course, but examples of…that have benefited from clinical trials?

Dr. Christian Rolfo: 

Absolutely, we have several of examples, and actually FDA was doing a terrific job in the last year to try to get access quickly access to the drugs for patients, and some of this access that was granted was based in clinical trials that we’re starting for a Phase I or Phase II trials, owe are really doing a very rapid evolution of the drug development, and this is a revolution actually of the drug development because we have access very quickly. I can tell you that it was certainly in my career, several patients in clinical trials that they got benefits. Obviously, clinical trials are answering questions, so that is the way that we can answer questions scientifically and is the only way that we can advance in clinical therapeutics. 

How Can Biomarkers Help With Lung Cancer Treatment?

How Can Biomarkers Help With Lung Cancer Treatment? from Patient Empowerment Network on Vimeo.

Biomarkers can assist with lung cancer treatment, but how are they used exactly? Expert Dr. Christian Rolfo from Mount Sinai explains what is examined in biomarkers and how they aid treatment of specific population groups.

See More from Best Lung Cancer Care

Related Resource:

How Do Lung Cancer Patients Benefit From MRD Testing?

How Can Specific Biomarkers Impact Lung Cancer Progression?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester: 

We know that no two lung cancers are the same. Can you explain to the audience how biomarkers help with lung cancer treatment and they can be so important? 

Dr. Christian Rolfo: 

Yeah, we have different…as I say, we are looking at specific characteristics from the tumor when I’m referring to genomic alterations that I’m not referring to something that you can get from your family and bring to your descendants. So I’m talking about mutations that are occurring inside the tumors and only for the tumor, and so affecting only the subject that has this patient that has this alteration. So these biomarkers are an important way to identify populations that we can treat specifically, and I would like to be a little bit more specific on that. We have some of the alterations, for example, one of the mutations that we call EGFR or epidermal growth factor receptor mutation that is supported in different populations in different frequencies. For example, if we have patients that are with an Asiatic origin, we have there the possibility to have a…and I’m referring, for example, Chinese, Japanese, this area of the East Asia, we have a hyper-prevalence of these mutations in around 50 percent of the patients with lung cancer, non-squamous we’d say this is another characteristic of the tumor can have this specific alteration. If we are moving, for example to Latinos, the pains of the areas of Latinos they are coming from, if you have Mexican or, for example, Peruvian, they have also due to their ancestry, they are similar to the Asiatic population, 40 percent we’re going to white populations and Anglo-Saxons or Europeans, they have around 7 to 15 percent  according to the different regions. 

African Americans within 15 to 20 percent. So these kinds of alterations are giving us the opportunity to treat and we have nowadays inhibitors and that’s drugs that are from first, second and third generation, so we were evolving in January, this pharmaceutical in January to develop all drugs that are able to penetrate in the brain and acting not only in the tumor, but also in brain metastases. And patients who have this mutation, for example, are treated in first line, in front line, or the first treatment that they receive are pills, no chemotherapy. So for this reason, and that is something that is important because when we know that patients, when they start this journey of lung cancer diagnosis before they see an oncologist, they were struggling to get the diagnosis and then we’re passing through several doctors from the general practitioner or to the emergency room, going to CT scan and then a biopsy then a pulmonologist until they get the diagnosis, it’s a big period of time sometimes that we are very nervous because we want to each patient to have a treatment as soon as possible, and sometimes when they arrive to us, we say they need to wait until we have the results of these biomarkers. 

So it’s difficult to understand, I put in the place of the patients and the families are really difficult to understand that I was passing a lot, I went here, I came here and I want your treatment right away, but this period that we are asking to wait is really important, because we will have information that can change radically the treatment and the history of these patients. So one of the problems that we have in America is the lack of testing, so we have all the tools to test the patients, but if we are looking at some of the statistics, 50 percent of the patients have been tested. 39 percent if we are moving to groups, for example, of AfricanAmericans, so we need to be very careful that don’t push to get the treatment very quickly without having all the elements to this thing, which kind of treatment is the most adequate for the patient. 

Dr. Nicole Rochester:

That is such important information, and I really appreciate that, I appreciate it. That you put it in the perspective of the patients and family members. And that grueling, long wait, long time to diagnose this, and finally you’re in front of a specialist and the perception is that, Okay, now I’m going to get this treatment that I need, and then like you said to hear, now you have to wait a little bit longer, but also to understand that that wait is important to make sure that you get the treatment that is meant for your specific type of cancer, I think that is so incredibly important.

Dr. Christian Rolfo:

And believe me, we are trying to push as well from the that there are, unfortunately, technical times that we cannot overcome that are for testing and for having these results, and we can do that by like I said liquid biopsy, but also tissue biopsy, so we are sending the tissue that the patients gave for a biopsy in a biopsy or in a resection when they have surgery. We take these small biopsies and we send them for analysis and take longer sometimes, so it’s a pity and we know, but it’s the only way to go for the right treatment. 

What Are the Latest Lung Cancer Treatment Updates?

What Are the Latest Lung Cancer Treatment Updates? from Patient Empowerment Network on Vimeo.

With lung cancer research advances, what are the latest treatment updates? Expert Dr. Christian Rolfo from Mount Sinai explains treatment and monitoring advances and shares about lung cancer types that need more research funding.

See More from Best Lung Cancer Care

Related Resource:

How Can Biomarkers Help With Lung Cancer Treatment?

How Can Specific Biomarkers Impact Lung Cancer Progression?

How Can Drug Resistance Impact Non-Small Cell Lung Cancer?


Transcript:

Dr. Nicole Rochester: 

Are there any other exciting updates that patients and families should know about related to lung cancer, maybe things that are in the works that we may hear about in 2023?

Dr. Christian Rolfo: 

Yeah, I said, for example, liquid biopsy I was mentioning liquid biopsy, and we are focused obviously, and in patients that have advanced disease or when they have this disease that is already confirmed. But we are now moving the tools that we have to the dedication of cancer using liquid biopsy from the very beginning, so we can use a minimal residual disease, that is patients after the surgery. And I think I hear answering one of the questions that we have in the chat that this minimal residual disease is the quantity of two more that sometimes we are not able to see in the images or is very tiny, and we have equivocal information, the possibility to discover the patients that after surgery, have the possibility to recurrence or have come back of the disease is really important.  

And also we are looking for early detection of lung cancer trying to identify patients with the high-risk populations that they are maybe having the opportunity to be in lung cancer screening because they are smokers, or because they have all the characteristics on top of this model that we can also use the liquid biopsy there. But one of the most important messages that I want to say, because I mentioned it here smokers, and I want to remind you that we have a big proportion of patients around 20 to 25 percent of the patients that they never smoked and that they can develop lung cancer. So we have a motto, we say if you have a lung, you can have it because we want to break this stigma that lung cancer has the only patients who are smoking, obviously smoking and tobacco are related highly with lung cancer. 

But also we have patients that are second-hand smokers or they have other causes of lung cancer. So we need to be aware and we need to try to get attention for that because, in this special population of non-smokers, we know that there is a special characteristic that we can treat them completely different, so it’s very important that we identify those patients as well.

Dr. Nicole Rochester: 

I really appreciate you sharing that, Dr. Rolfo, because as I’m sure you know, there’s a lot of stigma associated with lung cancer and the assumption that if you have lung cancer, then that automatically means that you are a smoker. And now that we know that people who smoke, those are challenges. But to just acknowledge that not everybody with lung cancer is someone who is a smoker, and also that the approach, the treatment approach may be different, so I really appreciate you pointing that out.

Dr. Christian Rolfo: 

And actually, Dr. Rochester, you know this stigma was causing several domino effects. We have less funding for research, we have less support from the community sometimes like other tumors have, for example, breast cancer. So if we are looking specifically in lung cancer, the quantity of women that are dying or are going to a diagnosis of lung cancer, it’s very impressive, but actually it’s killing more people sometimes than other tumors. So we need to be very careful with this stigma because we need…and this is a call for action, now we need more funds, we need more support from the community, because this is a very important area that will need research. 

How Can Drug Resistance Impact Non-Small Cell Lung Cancer?

How Can Drug Resistance Impact Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Drug resistance can develop for some lung cancer patients, but is there impact to non-small cell lung cancer (NSCLC)? Expert Dr. Christian Rolfo from Mount Sinai explains drug resistance, patients who may be at-risk for this issue, and monitoring that is performed for optimal treatment.

See More from Best Lung Cancer Care

Related Resource:

How Can Biomarkers Help With Lung Cancer Treatment?

How Can Specific Biomarkers Impact Lung Cancer Progression?

How Can Lung Cancer Disparities Be Addressed?


Transcript:

Dr. Nicole Rochester: 

What have we learned about drug resistance as it relates to non-small cell lung cancer? Are there any new developments in that area?

Dr. Christian Rolfo: 

Yeah, obviously the patients of the…as I just commented, we have different patients with different needs and different scenarios, so we are now fragmenting a lot of the diseases, and we have actually different diseases. And one big disease that is the lung cancer, so now we are treating patients in a different way. And some patients have, for example, patients who are under treatment with targeted therapies, they can develop mechanics of resistance that we can nowadays not only identify but also treat. 

So we can treat and change the recurrence of these patients. One of the tools that we are using for that is liquid biopsy, for example, that is this blood draw that we are going for the patients, and actually, we are trying to do this determination from the very beginning and also monitoring the patients after we have this information to see if we are able to determine the mechanics of resistance, see also the outcomes of some of the therapies and change the treatment when it’s necessary. In immunotherapy, we have alterations that are resistant or refractory, that is another way of definitions so refractory we say patients that are not responding during the treatment and resistance of patients that or simply patients that are after the treatment having a progression in a very short time, so we need to identify these two categories and try to treat them in different ways that we have armamentarium for that as well. 

Lung Cancer Treatment Landscape Overview

Lung Cancer Treatment Landscape Overview from Patient Empowerment Network on Vimeo.

Lung cancer treatments have been rapidly expanding, so what are the current options? Expert Dr. Christian Rolfo from Mount Sinai outlines the lung cancer treatment landscape and which patients might benefit most from some treatments.

See More from Best Lung Cancer Care

Related Resource:

How Can Lung Cancer Disparities Be Addressed?

How Can Drug Resistance Impact Non-Small Cell Lung Cancer?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester: 

Now, let’s delve into this very important topic, how can I get the best lung cancer care? And, Dr. Rolfo, we’re going to start with an overview of the lung cancer treatment landscape. We know that this landscape is rapidly changing and keeping up with the pace of developments could be a challenge not only for doctors, but certainly for patients and family members, so I was hoping that you could give us an overview of the current lung cancer treatment landscape.

Dr. Christian Rolfo: 

In the last year, lung cancer treatment was changing radically. We have actually, including some of their new concepts as precision medicine or personalized medicine, that we have actually different therapies that are specifically for some group of patients, that they have specific alterations in their tumors.  And when I’m talking about alterations, I refer to mutations, genomic alterations that can be targeted nowadays with specific medications, and currently, some of them are actually, the majority of them are actually pills, for example. So it was changing radically, and we are not using it like before chemotherapy for everyone. Another area of important interest was the introduction of immunotherapy, this is also an important tool for fighting cancer. And there you have a substance that are administered generally, all of them are intravenous, and this is the principle of that is to await from your own inner system, from the patient immune system, they are the tools to fight against the cancer. 

So it’s a very innovative way to approach cancer, and this is…the good thing is that these two approaches targeted therapies, immunotherapy, and also still obviously the combination with chemotherapy in some of the case with immunotherapy, we can use not only metastatic patients, so in patients who have advanced disease, but also we can use in patients who have earlier stage that they were operated, for example, and we want to prevent that this patient is not going to a further process of cancer metastases, or there are several, several innovations. Then we have innovations that are coming also from local treatments and we call local treatments the one that, for example, surgery or radiation, we have new technologies also that are arriving there, and the combination sometimes with the medical treatment or systemic treatments that are going everywhere that is the description of systemic are helping these patients to have not recurrence and improving. Actually, lung cancer survival was really improving in the last years, and we are very excited by that because, unfortunately, it’s very still an aggressive disease that we were able to change with all this armamentarium the prognosis of these patients. 

How Can I Get the Best Lung Cancer Care?

How Can I Get the Best Lung Cancer Care? from Patient Empowerment Network on Vimeo.

How can lung cancer patients access optimal care? Expert Dr. Christian Rolfo from Mount Sinai and Dr. Nicole Rochester discuss the latest lung cancer treatments and research, lung cancer testing, equitable care, and patient-centered care for the best health outcomes.

See More from Best Lung Cancer Care

Related Resource:

Lung Cancer Treatment Landscape Overview

How Do Lung Cancer Patients Benefit From MRD Testing?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, I’m a pediatrician, a professional health advocate, and your host for today’s Patient Empowerment Network program. We are so happy that you tuned in. How can you access the best possible lung cancer care? What do the latest combination therapies mean for you? Should you consider a clinical trial as a path to enhancing your lung cancer care? This Best Lung Cancer Care program focuses on providing actionable steps to achieving equitable care and connecting to patient-centered care on your path to empowerment. We are joined today by international lung cancer expert, Dr. Christian Rolfo, Professor of Medicine and Associate Director for Clinical Research in the Center for Thoracic Oncology at the Tisch Cancer Institute. Thank you so much for joining us today, Dr. Rolfo.

Dr. Christian Rolfo: 

Thank you, Dr. Rochester, for having me. It’s a pleasure to be here. 

Dr. Nicole Rochester: 

Wonderful. I’m looking forward to our conversation. Now, following this program, you will receive a survey and we would be thrilled to get your feedback because this helps inform future lung cancer programs we produce. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team regarding the best options for your care. Now, let’s delve into this very important topic, how can I get the best lung cancer care? And, Dr. Rolfo, we’re going to start with an overview of the lung cancer treatment landscape. We know that this landscape is rapidly changing and keeping up with the pace of developments could be a challenge not only for doctors, but certainly for patients and family members, so I was hoping that you could give us an overview of the current lung cancer treatment landscape.

Dr. Christian Rolfo:

In the last year, lung cancer treatment was changing radically. We have actually, including some of their new concepts as precision medicine or personalized medicine, that we have actually different therapies that are specifically for some group of patients, that they have specific alterations in their tumors. And when I’m talking about alterations I refer to mutations, genomic alterations that can be targeted nowadays with specific medications, and currently, some of them are actually, the majority of them are actually pills, for example. So it was changing radically and we are not using it like before chemotherapy for everyone. Another area of important interest was the introduction of immunotherapy, this is also an important tool for fighting cancer, and there you have a substance that are administered generally, all of them are intravenous, and this is the principle of that is to await from your own inner system, from the patient immune system, they are the tools to fight against the cancer, so it’s a very innovative way to approach cancer, and this is.

The good thing is that these two approaches targeted therapies, immunotherapy, and also still obviously the combination with chemotherapy in some of the case with immunotherapy, we can use not only metastatic patients, so in patients who have advanced disease, but also we can use in patients who have earlier stage that they were operated, for example, and we want to prevent that this patient is not going to a further process of cancer metastases, or there are several, several innovations. Then we have innovations that are coming also from local treatments and we call local treatments the one that, for example, surgery or radiation, we have new technologies also that are arriving there, and the combination sometimes with the medical treatment or systemic treatments that are going everywhere that is the description of systemic are helping these patients to have not recurrence and improving. Actually, lung cancer survival was really improving in the last years, and we are very excited by that because, unfortunately, it’s very still an aggressive disease that we were able to change with all this armamentarium the prognosis of these patients.

Dr. Nicole Rochester:

Wow, that’s a lot. I mean it’s exciting to hear that there are so many new developments on the horizon and that so much has happened just in the last year as it relates to therapy. What have we learned about drug resistance as it relates to non-small cell lung cancer? Are there any new developments in that area?

Dr. Christian Rolfo:

Yeah, obviously the patients of the…as I just commented, we have different patients with different needs and different scenarios, so we are now fragmenting a lot of the diseases and we have actually different diseases, and one big disease that is the lung cancer, so now we are treating patients in a different way. And some patients have, for example, patients who are under treatment with targeted therapies, they can develop mechanics of resistance that we can nowadays not only identify but also treat. 

So we can treat and change the recurrence of these patients. One of the tools that we are using for that is liquid biopsy, for example, that is this blood draw that we are going for the patients, and actually, we are trying to do this determination from the very beginning and also monitoring the patients after we have this information to see if we are able to determine the mechanics of resistance, see also the outcomes of some of the therapies and change the treatment when it’s necessary. In immunotherapy, we have alterations that are resistant or refractory, that is another way of definitions so refractory we say patients that are not responding during the treatment and resistance of patients that or simply patients that are after the treatment having a progression in a very short time, so we need to identify these two categories and try to treat them in different ways that we have armamentarium for that as well.

Dr. Nicole Rochester:

Wonderful, thank you for that. So you’ve mentioned a lot about updates, are there any other exciting updates that patients and families should know about related to lung cancer, maybe things that are in the works that we may hear about in 2023?

Dr. Christian Rolfo:

Yeah, I said, for example, liquid biopsy I was mentioning liquid biopsy, and we are focused obviously, and in patients that have advanced disease or when they have this disease that is already confirmed. But we are now moving the tools that we have to the dedication of cancer using liquid biopsy from the very beginning, so we can use a minimal residual disease that is patients after the surgery. And I think I hear answering one of the questions that we have in the chat that this minimal residual disease is the quantity of two more that sometimes we are not able to see in the images or is very tiny, and we have equivocal information, the possibility to discover the patients that after surgery, have the possibility to recurrence or have come back of the disease is really important. 

And also we are looking for early detection of lung cancer trying to identify patients with the high-risk populations that they are maybe having the opportunity to be in lung cancer screening because they are smokers, or because they have all the characteristics on top of this model that we can also use the liquid biopsy there. But one of the most important messages that I want to say, because I mentioned it here smokers and I want to remind you that we have a big proportion of patients around 20 to 25 percent of the patients that they never smoked and that they can develop lung cancer, so we have a motto, we say if you have a lung, you can have it because we want to break this stigma that lung cancer has the only patients who are smoking, obviously, smoking and tobacco are related highly with lung cancer. 

Dr. Christian Rolfo:

But also we have patients that are second-hand smokers or they have other causes of lung cancer, so we need to be aware and we need to try to get attention for that because, in this special population of non-smokers, we know that there is a special characteristic that we can treat them completely different, so it’s very important that we identify those patients as well.

Dr. Nicole Rochester:

I really appreciate you sharing that, Dr. Rolfo, because as I’m sure you know, there’s a lot of stigma associated with lung cancer and the assumption that if you have lung cancer, then that automatically means that you are a smoker, and not that we know that people who smoke, those are challenges, but to just acknowledge that not everybody with lung cancer is someone who is a smoker, and also that the approach, the treatment approach may be different, so I really appreciate you pointing that out.

Dr. Christian Rolfo:

And actually Dr. Rochester, you know this stigma was causing several domino effects. We have less funding for research, we have less support from the community sometimes like other tumors have, for example, breast cancer. So if we are looking specifically in lung cancer, the quantity of women that are dying or are going to a diagnosis of lung cancer, it’s very impressive, but actually it’s killing more people sometimes than other tumors. So we need to be very careful with this stigma because we need…and this is a call for action, now we need more funds, we need more support from the community, because this is a very important area that will need research.

Dr. Nicole Rochester:

Absolutely, so that brings me to the next section of our program, you’ve mentioned a lot of these therapies already, I just want to go a little bit deeper into exploring some of the lung cancer treatment strategies and also talk about clinical trials, so you talked about bio-markers. Can you expand a little bit on that? We know that no two lung cancers are the same. Can you explain to the audience how biomarkers help with lung cancer treatment and they can be so important? 

Dr. Christian Rolfo:

Yeah, we have different…as I say, we are looking at specific characteristics from the tumor when I’m referring to genomic alterations that I’m not referring to something that you can get from your family and bring to your descendants. So I’m talking about mutations that are occurring inside the tumors and only for the tumor, and so affecting only the subject that have this patient that has this alteration. So these biomarkers are an important way to identify populations that we can treat specifically, and I would like to be a little bit more specific on that. We have some of the alterations, for example, one of the mutations that we call EGFR or epidermal growth factor receptor mutation that is supported in different populations in different frequencies. 

For example, if we have patients that are with an Asiatic origin, we have there the possibility to have a…and I’m referring, for example, Chinese, Japanese, this area of the East Asia, we have a hyper-prevalence of these mutations in around 50 percent of the patients with lung cancer, non-squamous we’d say this is another characteristic of the tumor can have this specific alteration. If we are moving, for example, to Latinos, the pains of the areas of Latinos they are coming from, if you have Mexican or for example, Peruvian, they have also due to their ancestry, they are similar to the Asiatic population, 40 percent we’re going to white populations and Anglo-Saxons or Europeans, they have around 7 to 15 percent according to the different regions. 

African-Americans within 15 to 20 percent. So these kinds of alterations are giving us the opportunity to treat and we have nowadays inhibitors and that’s drugs that are from first, second and third generation, so we were evolving in January, this pharmaceutical in January to develop all drugs that are able to penetrate in the brain and acting not only in the tumor, but also in brain metastases. And patients who have this mutation, for example, are treated in first line, in front line, or the first treatment that they receive are pills, no chemotherapy. 

So for this reason, and that is something that is important because when we know that patients, when they start this journey of lung cancer diagnosis before they see an oncologist, they were struggling to get the diagnosis and then we’re passing through several doctors from the general practitioner or to the emergency room, going to CT scan and then a biopsy then a pulmonologist until they get the diagnosis, it’s a big period of time sometimes that we are very nervous because we want to each patient to have a treatment as soon as possible, and sometimes when they arrive to us, we say they need to wait until we have the results of these biomarkers.

So it’s difficult to understand, I put in the place of the patients and the families are really difficult to understand that I was passing a lot, I went here, I came here and I want your treatment right away, but this period that we are asking to wait is really important because we will have information that can change radically the treatment and the history of these patients. So one of the problems that we have in America is the lack of testing, so we have all the tools to test the patients, but if we are looking at some of the statistics, 50 percent of the patients have been tested…39 percent if we are moving to groups, for example, of African-Americans, so we need to be very careful that don’t push to get the treatment very quickly without having all the elements to this thing, which kind of treatment is the most adequate for the patient. 

Dr. Nicole Rochester:

That is such important information, and I really appreciate that, I appreciate it. That you put it in the perspective of the patients and family members. And that grueling, long wait, long time to diagnose this, and finally you’re in front of a specialist and the perception is that, Okay, now I’m going to get this treatment that I need, and then like you said to hear, now you have to wait a little bit longer, but also to understand that that wait is important to make sure that you get the treatment that is meant for your specific type of cancer, I think that is so incredibly important.

Dr. Christian Rolfo:

And believe me, we are trying to push as well from the that there are unfortunately technical times that we cannot overcome that are for testing and for having these results, and we can do that by like I said liquid biopsy, but also tissue biopsy, so we are sending the tissue that the patients gave for a biopsy in a biopsy or in a resection when they have surgery. We take these small biopsies and we send them for analysis and take longer sometimes, so it’s a pity, and we know but it’s the only way to go for the right treatment.

Dr. Nicole Rochester: 

So with regard to the biomarkers, you mentioned that these are kind of unevenly distributed among different populations depending on your origin, and so how does that play into the progression of the disease, what do we know about why patients with specific biomarkers have a different degree of disease progression?

Dr. Christian Rolfo: 

Yeah, so we know more or less that the characteristics, I mean more or less in terms of the evolution of the clinical characteristics of these patients, in terms of organ affection in case of progression, but what is most important of this is that we are able to continue to identify, and I say monitoring these patients with liquid biopsy for example, this is a good tool to understand or to understand it a bit better, which kind of mechanistic involvement. So because we have, for example, patients who were receiving the case that I was discussing before EGFR mutations and they received one graft from the very beginning, a third generation TKI is the one that is approved for the first line, and this patient has a progression.

 The possibility to have a mechanism of resistance is different, so we can have mutations that are coming in the same pathway, so in the same area, same kind of mutation, but different location, just to the people understand is the kind of line and we have the mutation that is here, the one that we are attacking, but we have another mutation that is in this area and it’s not covered by the track that is covering this mutation. 

Dr. Christian Rolfo: 

So we have nowadays drugs that are going to, in this area in clinical trials, or we have in other cases other areas of the task of mutations that have nothing to do with the original one. So we are activating another kind of pathway, or we are transforming the tumor from one kind of tumor to another kind of tumor, so for this reason, identify which kind of mechanism of resistance is in place can have an important or have important implications for how we are treating these patients, so we need to look at that to treat the patients.

Dr. Nicole Rochester: 

Wonderful. And speaking of resistance, we know that there are some patients who end up trying multiple therapies in order to treat their lung cancer, are there alternative treatment strategies for lung cancer patients who have failed all therapies? 

Dr. Christian Rolfo: 

Yeah, absolutely, we have research in lung cancer is never stopping in oncology generally, but in lung cancer it’s really exciting to see how this research is evolving and it’s arriving to the patients the meaning of the research when we are doing access to the patients, to the discovery of the finding that we have, and obviously, we have strategies in the clinical practice, but also we have the clinical trials. So clinical trials, and that is something we need to try to define very well because some patients believe that when we are going to clinical trials there are no more options or we don’t have any other options to do. We are sometimes using clinical trials even in the first line, so even in patients that are for the first time being treated. 

Because we know that some of the cases we are treating patients with from some standard of care and using drugs on top, we want to explore it, we can improve these outcomes that we already know. That could be also a clinical trial, that is also a clinical trial. So don’t take the participation in a clinical trial as the last option that you have, sometimes you will go to your doctor and the first time that you see a doctor for your first diagnosis, they can propose a clinical trial. 

And this is really valuable. What we really appreciate is the collaboration of the patients to be in clinical trials, because we need to remember that the drugs that we are using today were analyzing other patients before, so the treatment that you are receiving in a standard of care today were before a clinical trial, it’s really important how we can interact with the research and the clinical practice very easily, so we have also some options that are…for what we call early drug development, that there are some drugs that are in patients who are receiving the standard of care, and they have the opportunity to be treated in new drugs, and you can discuss…believe me there, and 

I know that there is a lot of questions about clinical trials but the clinical trial setting is really restrictive, it’s very well-coordinated, so you would be part of a very coordinated and structured things that they try to protect the patients in the first instance, and try to understand also how we can help the patients and the future generations. So that is really why we appreciate patients, that the contribution of patients that are giving to this clinical research because it’s helping to advance the knowledge for the new patients as well.

Dr. Nicole Rochester: 

And I really appreciate how you described clinical trials, and particularly your distinction about it’s not always this last-ditch effort that sometimes you all are using clinical trials as first line therapy. One of the common things is that clinical trials are tomorrow’s medicine today, and helping patients and families to understand that there’s value in being involved in clinical trials and that…and I think with COVID there’s a little more understanding, but certainly, we have a long way to go, and so I appreciate you sharing that. Do you have any specific examples of patients in your practice, and not names of course, but examples of…that have benefited from clinical trials?

Dr. Christian Rolfo: 

Absolutely, we have several of examples and actually FDA was doing a terrific job in the last year to try to get access quickly access to the drugs for patients, and some of this access that was granted was based in clinical trials that we’re starting for a phase one or phase two trials, so we are really doing a very rapid evolution of the drug development, and this is a revolution actually of the drug development because we have access very quickly. I can tell you that it was certainly in my career, several patients in clinical trials that they got benefits. Obviously, clinical trials are answering questions, so that is the way that we can answer questions scientifically and is the only way that we can advance in clinical therapeutics. 

Dr. Nicole Rochester: 

Wonderful. So I want to move into treatment access, we’ve talked a little bit today about some of the differences that we see in lung cancer with regard to the biomarkers, you and I know, and I’m sure that was in the audience, know that health disparities are widely reported here in the United States with really any all conditions, including lung cancer. So I’d love for you to talk a little bit, Dr. Rolfo about some of the challenges related to appropriate access to lung cancer care as it relates to different socio-demographic populations, and then how can we begin to address those disparities.

Dr. Christian Rolfo: 

Yeah, this is a topic that is really in my heart because I was coming with you before we start the communication, the recording of this. I was working in Europe before coming to the United States. I was shocked by the disparities that we see in some healthcare situations, so in my position before in Europe, we have a healthcare system that discovering for patients and we have, obviously, difficulties, but here I saw in some communities really underserved in terms of access to different service and healthcare is one of them. So we need to be conscious about that when we have patients that are struggling to get transportation, we have patients that are struggling to get approval for some drugs. 

So, there are a lot of areas that need to be addressed, disparity also in terms of language, we have also patients that are not understanding the doctors,  we have patients that are having difficulty when to get to the app information when we are saying, “Oh, you can see your report in your app,” so it’s not easy for some of them, we have generational gaps as well, these are disparities as well. So taking or being conscious of all these factors is making us take action and how we can take actions in our institutions, and in several institutions in the country, we have the support of an experienced team that is addressing that and teams are specific that are working for disparities. Some of them are social workers, some of them are advocate patients, so we have a big team of institutions that are helping to the patients to go for different scenarios, and even we have patients that are homeless, so how we treat patients in these conditions when we know that the patient is in a shelter, so if you have toxicity, what will we be doing. 

So all these things are taken into consideration, believe me, because it is like New York, you have a big disparity of or a big diversity, and we say of populations in one consultation morning, you can see all of them in your waiting room, so we need to try to address all this, and there are politics that are coming from us as a healthcare system, but there are also politics that they need to come from governmental politics, so try to use these…all the tools that we have at our disposal are important, and also we have a very good support of advocacy groups. 

Dr. Christian Rolfo: 

And this is something that I want to really profit their patient to say thanks because we have several, several advocacy groups that are doing a terrific job from testing to helping patients to go through this journey. So it’s really an important job, and obviously families, families are helping to these disparities and patients, so patients themself. So what I say always to the patient, raise your voice, empower yourself.

 Try to ask for your rights if you don’t understand your doctor… Ask again, if you want to have a second opinion, talk to your doctor, that is the most important thing. We are very open to help the patients, and that is our mission. So if I say to my patients, If you want to have a second opinion, please let me know, and I try to direct you to somebody who is an expert in the field and can help us to learn better your disease or your treatment, but I think it’s a situation that everyone is winning, especially the patient, but also ask for future patients understanding better every case.

Dr. Nicole Rochester: 

Well, as an independent patient advocate, myself, Dr. Rolfo, I always get super excited when physicians like yourself are talking about and emphasizing the importance of patients and families advocating for themselves, so I just want to reiterate a couple of things that you said just to make sure that our audience heard it very clearly and asking questions is one of the things that you said that is, I believe one of the most important ways that we can advocate for ourselves and for our family members in healthcare settings, and I really appreciate that you offer advice around second opinions.

A lot of people feel that they are sending their doctor if they ask for a second opinion, but a confident doctor like yourself and a good doctor is going to encourage that, particularly if the patient or family just needs that extra reassurance, so I just really appreciate that you brought that up. Before we wrap up, there are a few questions from our audience that I would love to present to you, and so one of them comes from MacKenzie and MacKenzie asked, can you speak about MRD testing and what that means for lung cancer?

Dr. Christian Rolfo: 

Yeah, and that we were discussing briefly. So minimal residual disease is the… As I say, when we have an operation, we can have the opportunity to have completely resected a tumor, but we don’t know more than with the CT scan when the patient will recover. So we are without an answer believing every follow-up visit what has happened, seeing if it has gone). So we are trying to reduce this…reduce the anxiety first of all, to try to get the tools that are able to identify patients that they can recurrence, have a recurrence so liquid biopsies, one of them, and we have now the several methods that are trials and several data coming that there are some companies that actually they are a market for some of the options, we are still having validations,  required validations, but we will certainly be there very shortly in time to identify these patients and to treat them in the proper time.

Dr. Nicole Rochester: 

Wonderful, and I think you just addressed a question that came in from Herald, which was is liquid biopsy playing a role in monitoring disease recurrence in lung cancer?

Dr. Christian Rolfo: 

Sure, we are actually tailoring treatments and checking the patients, and I have several, several experiences in patients that they’re monitoring over the time, and we have actually some of the vendors that are proposing this approach monitoring, liquid biopsy is a great tool because it’s minimally invasive, it’s just a blood draw and we can continue. Not all the patients have the possibility in terms of they are not all cheaters, that is something we need to know DNA, so it’s the majority of them, we can do it in some minimal proportion, we cannot do it when there are also possibilities to follow them.

Dr. Nicole Rochester: 

Excellent, and our last question from the audience comes from Laura, and she wants to know, “Are immunotherapy combinations in the metastatic setting, expanding to treat earlier stage lung cancer?”

Dr. Christian Rolfo: 

Yeah, absolutely, we have actually an FDA approval for us, one of the immunotherapeutic drugs in patients after the resection of the disease with some characteristics, but we are there and actually we are having more and more clinical trials using in earlier stages so we will say in the other stage from the earlier stage from that is the neoadjuvant and we call that when we are doing a treatment to reduce two months to be operated later on, so we have also some trials that are going there, but we have an approval already for the adjuvant setting that is after the surgery in some patients.

Dr. Nicole Rochester: 

That’s wonderful. You’ve given us a lot of good news. A lot of hopeful news, Dr. Rolfo, it is time for us to wrap up. I want to thank you again for being here for sharing your expertise. In closing, is there any takeaway that you want to leave with our audience today regarding lung cancer and advocating for themselves.

 Dr. Christian Rolfo: 

I will say that, first of all, thanks for the opportunity and it was a pleasure to discuss with you and I’d write to the population and say, Try to ask for your rights as a patient, so ask for your rights, be proactive in terms of your disease, you are the main actor here,  we are tools of trying to help you to arrive to the destination, but the good important thing is to create a good relation with your doctor, and to create a good relation with your doctor is part of the trust from both sides, so having an open communication… Open communication with the family as well. Sometimes we are smuggling or hiding things as a patient for our families to don’t help them, and vice versa that is not helping in this process, absolutely. And if you want, if you have that asking if you’re never deserving, so this is what we are here and all the team is here to help you.

Dr. Nicole Rochester: 

Wonderful. Well, I just want to echo what Dr. Rolfo said about asking questions about being an active member of your medical team, the doctors are there to assist you, but you are ultimately the expert for your disease for your body, so I just wanna thank you again deferral for being here for sharing such important information thank you all again for tuning into this patient empowerment network program. If you’d like to watch this webinar again, there will be a replay and you will receive an email when that recording is available, and remember, following this program, you will receive a link to a survey, please fill out that survey. Let us know what was helpful so that we can serve you better in the future to learn more about lung cancer and to access tools to help you get the best care no matter where you live. Visit powerfulpatients.org/lung cancer. I’m Nicole Rochester, thank you so much for joining us. 

A Patient Profile: My Aunt Jan

In early March 2020, just days before the world shut down, my mother stepped out of her sister’s Hospice room. My mother, the oldest of three, and her other sister, the youngest of three, had spent the last couple weeks by their middle sister’s side as she used every last ounce of strength she had to fight the cancer that had so deeply taken hold of her body. That day in March, though, my mother left early so she could meet me and my three children to go shoe shopping. She told her sister goodbye and explained she was going to spend some time with her grandchildren. She’d barely left the parking lot when her youngest sister called. A few moments after my mother had left the room, my aunt breathed her last breath.

My Aunt Jan, at 72, was too young, too healthy, and too disciplined to die from cancer. She had devoted much of her life to staying physically fit and consuming only the healthiest diet. She ate organic foods long before there were grocery stores selling them. She belonged to co-ops and sought out health food stores and juiced her vegetables when most people had never heard of those things. The rest of us were enjoying the processed food revolution that came about in the 1980s while Jan was biking to the health food store to get some bulk, organic grains. She stayed lean her entire life and enjoyed showing off her muscles. Her favorite way to spend time with anyone was by taking long walks, preferably on the beach on Sanibel Island, Florida, where I grew up and where she was able to retire. She was a music professor. A PhD. She was widely respected in her field for her knowledge, her expertise, and her own talents at the piano. She was extremely passionate about practicing the piano. She never missed practicing. She loved the classical composers: Bach, Beethoven, and Chopin. She knew them all. She taught them all. She played them all. She was so excited about classical music that I am sure her students couldn’t help but pick up some of that enthusiasm just by being in the room with her.

Jan never married or had kids. She had pets. First a dog named Bear who I think she mourned until the day she died. Later she had cats who found their way into her life in a variety of ways. She enjoyed their company, and they never complained when she practiced the piano for hours at a time, as my brother and I had as kids when she lived with us for a short time. Her practice interfered with our afternoon cartoons, and we let her know it, but she never relented. Practicing took priority over her niece and nephew. Practicing took priority over everything. I imagine it was her go-to escape mechanism. It must have been her therapy. She would have needed an outlet as the middle child in her family. She absolutely had middle child syndrome. She often recalled how my mother, the oldest, got to go out of state for college, while she got stuck going in state at the local school. And, of course, she and my mother both had stories about how their youngest sister, the baby of the family by a good seven years, got to do whatever she pleased. All families have similar stories, but Jan, I think, really felt the burden of being a middle child. My grandmother was not the most supportive of personalities and could be quite soul crushing when she put her mind to it, and she put her mind to it a lot. When my mother graduated from law school as a single mom with two kids in toe, my grandmother told her, “Well, we didn’t think you could do it.” She had similar zingers for all her daughters (and her granddaughter) for just about every important life event. None of us was unscathed, and Jan came out of that incredibly stubborn and with an insatiable drive to achieve, to succeed, and to prove herself. She did all those things, but I don’t think they were ever enough. I’m not sure anything ever would have been enough.

When Jan finally retired to Sanibel, which had been one of her life goals, she didn’t really retire. She began playing the organ and became involved in the music program at church. She wrote articles for the local paper, she biked all over the island, she walked the beach, she continued to teach college classes online. She just kept on achieving and never slowed down until things came to a screeching halt. Our first indication came when she had to go to the emergency room. It was then we found out that she was sick. Really sick. She had known for a while but hadn’t told any of us. She had been diagnosed with cancer — uterine we think, but it was never really made clear — about a year prior, and she ignored the recommended treatment. Instead, she sought alternative healing. It didn’t work, and she finally told her sisters what was going on and agreed to chemotherapy. But that is all she agreed to.

Even though I had been writing for Patient Empowerment Network (PEN) for several years and knew about the resources they offered, she was not interested. She was not interested in the information I could share with her about the latest studies and research. She was not interested in the many programs PEN has that help guide patients and their care partners through the process of diagnosis and treatment and the best ways to be an empowered patient. She was so stubborn. She had done things her own way her entire life and been pretty successful, so she was going to do cancer her way, too. I can’t say as I blame her. She had only always relied on herself, and she really believed that she had done all the things to set herself up to beat cancer her way. On paper she really had. Fit, healthy, ideal weight, superfoods, no processed foods. She did all the things. The only thing she didn’t do was embrace the resources she would need to become an empowered patient and to partner with caregivers to advocate on her behalf when necessary. She tried to go it alone, but she didn’t have to. PEN had all the resources she needed.

Had she embraced an organization like PEN, it’s impossible to say if her outcome would have been different. Some people just don’t survive cancer no matter what the circumstances, and Jan’s circumstances weren’t great. Not only had she delayed treatment, but there was poor communication among doctors, a botched surgery, and a generic treatment plan that didn’t seem to be tailored to her or her cancer. The treatment didn’t work and a lot of trips to the emergency room later she found herself in Hospice with the “thoughts and prayers” of her doctor sent via his nurse. Even in Hospice, barely eating, barely awake, I could tell she was still determined to beat the cancer. She just couldn’t seem to accept that it had been stronger than she. Looking back, I still wish she had decided to access the many resources available, either through PEN or another organization, but I do also see why she felt the need to rely only on herself.

Now, more than two years later, my mother has cancer. Lung cancer. Adeno carcinoma. It’s advanced, but very treatable and we are focusing on the very treatable portion of the diagnosis. A lung cancer diagnosis isn’t the death sentence that it was in 1992 when her father died from it. I’m very thankful about that. In a couple days from my writing this, I will go with her to her first treatment at the research hospital where my aunt refused to get treatment. I may still be a little in shock from her diagnosis, but I have already been comforted by the knowledge I’ve gained over the past several years while writing for PEN. My mom and I have already had discussions about some of the treatments I’ve written about, and she too seems to be comforted in all that she’s learned through PEN. She’s very supportive and a top-notch proofreader who knows I love to submit clean copy, so she’s read everything I’ve written at least once. She also took a dive into the PEN website on her own and found the section that tells you the questions to ask your care team. We’ve both learned so much through PEN that we feel pretty prepared to face this. I mean, nobody wants to get cancer. Nobody wants to go through chemotherapy, so we are overwhelmed and scared, for sure, but mostly we feel empowered. As we embark on this journey, we know that she, the patient, and I, the care partner, don’t have to figure it all out on our own. We’ve got a community of support at our fingertips. And that is the power of PEN.

Understanding MRD and What It Means for Myeloma Patients

Understanding MRD and What It Means for Myeloma Patients  from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Melissa Alsina, of Moffitt Cancer Center, provides an explanation of minimal residual disease (MRD) and how she uses MRD in patient care.

Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.

See More From INSIST! Myeloma

Related Programs:

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

Myeloma Research | CAR-T Cell & Bispecifics Study Updates

How to Thrive and Set Myeloma Treatment Goals

How to Thrive and Set Myeloma Treatment Goals

Key Factors That Guide Myeloma Treatment Decisions

Key Factors That Guide Myeloma Treatment Decisions


Transcript:

Katherine:

What is MRD, and what does it mean for patients? 

Dr. Alsina:

So, MRD stands for minimal residual disease. So, it means that if a patient is in complete remission, what it would mean is that I don’t see any myeloma cells in the bone marrow and I don’t see an M spike. The M-spike is zero in the blood and in the urine, and the light chains are fine.  

But even with that, there maybe be some disease that is residual that I can’t see by conventional methods, so there’s two methods that have been developed that are able to detect one cancer cell in a million cells. 

Katherine:

Wow. 

Dr. Alsina:

So, if I have a patient that is in complete remission, I can use one of those methods to look, and that will tell me if the patient still has minimal residual disease or not. 

So, the reason why it is important is because there are many studies that have shown that if I can get a patient to be minimal-residual-disease-negative, no evidence of disease by those two tests – that I can explain a little bit more if you want – then those patients are going to do better, their response is going to last longer, and the patients are going to live longer. 

So, nowadays, with our better treatments, we use also that as a goal. We say okay, I not only want to get a patient in a complete remission, I want to get that patient to MRD negativity.  

And we do adjust our therapy to get there. As an example, I can do a transplant in a patient, and three months after transplant, I look at that minimal residual disease. If it’s negative, then I do Revlimid (lenalidomide) maintenance, which would be standard of care. If it’s positive, I use two drugs to try to get that patient to that MRD-negativity level, and there are many studies right now looking at how to adjust our treatment based on response. 

September 2022 Notable News

This month, researchers and scientists reveal the results from studies that are valuable tools for the prevention and treatment of cancer. Currently, they are studying the reasons why there has been a dramatic rise in the number of people getting cancer under the age of fifty. The results of this study may promote people to make changes in their lifestyle to prevent cancer. Stress is also a significant risk factor for causing cancer; it is now considered the 6th vital sign for detecting cancer. Researchers have discovered why air pollution causes cancer; the reason is different than what was previously thought. This discovery could offer hope for people diagnosed with lung cancer that are not smokers.

Dramatic Rise in Cancer in People Under 50

A study by researchers from Brigham and Women’s Hospital reveals that the incidence of early onset cancers-including breast, colon, esophagus, kidney, liver, and pancreas- has dramatically increased around the world, with the rise beginning around 1990 reports news.havard.edu . People born a decade later have a higher risk of developing cancer later in life due to things they were exposed to earlier in life. Some factors that are causing this increased risk are diet, lifestyle choices, weight gain, environmental exposures, and a persons’ microbiome. The best weapons to fight cancer are still screening and early detection. Some other factors that are on the rise are alcohol consumption, sleep deprivation, smoking, obesity, and a diet high in processed foods. There has also been an increase in eight cancers that are related to the digestive system. Many of these factors are easily changed with lifestyle modification. Find more information here.

The Role of Distress in Cancer

For those who do not know, cancer is not a specific disease but a cluster of over 200 diseases typified by dysfunctional cell growth that is rapidly replicated. The challenge is that the body’s immune system often misses detecting the stealth cell growth and then has difficulty eliminating it reports Psychologytoday.com . Stress causes inflammation, the proteins involved in inflammation are what feed cancer. Stress has been found to be the 6th vital sign in finding cancer. People can manage other risk factors for cancer such as smoking, alcohol consumption, and chemical exposures; stress can be managed as well. People need to be encouraged to overcome trauma, treat anxiety and depression, and promote emotional healing. More effort needs to be made to decrease stress to help prevent cancer. Find more information here.

Mystery of Why Air Pollution Causes Cancer is ‘Solved’ in Major Breakthrough Offering Hope for Treatment

Researchers at the Francis Crick Institute in London found that rather than damaging cells directly, air pollution instead ‘wakes up’ dormant mutations and causes them to become cancerous reports The-sun.com . This new research explains why non-smokers are getting cancer. This knowledge changed previous ideas that cancer was formed from a healthy cell mutating. Air pollution triggers the damaged dormant cells to turn into cancerous cells. Discovering the mechanism that causes the cancer cells to grow can help scientists develop cancer blocking treatments. The air pollution causes this mechanism to start in the lungs. Smoking is still the leading cause of lung cancer, but air pollution has a significant impact on lung cancer as well. Find more information here.

September 2022 Digital Health Roundup

The diagnosis of pancreatic cancer used to be considered a death sentence, due to its late detection and difficulty in treatment delivery. With the help of science and technology, pancreatic cancer is a now treatable cancer. Scientists have created a glass bubble nanocarrier to help make the treatment of pancreatic cancer more effective. An Artificial Intelligence program has been created to help detect pancreatic cancer in its early stages to help increase survivability for patients diagnosed with this cancer. Scientists have discovered that using photodynamic therapy to treat many cancers, including pancreatic cancer, is more specific in its delivery and less harmful to the patient.

‘Glass Bubble’ Nanocarrier Boosts Effects of Combination Therapy for Pancreatic Cancer

In hopes of turning the tide, UCLA researchers have developed a technology that delivers a combination therapy to pancreatic tumors using nanoscale particles loaded with irinotecan, a chemotherapy drug approved as part of a drug regimen for pancreatic cancer, and 3M-052, an investigative drug that can boost immune activity and help overcome tumors’ resistance reports Phys.org . One of the reasons pancreatic cancers are hard to treat is that the cancer is protected by biological factors that make it resist treatment. The use of the nanoparticle for treatment helps to shrink the cancerous tumors and prevent metastasis. This nanocarrier attracts more cancer killing immune cells to the pancreatic tumors. There is a double layer of lipids surrounding the core of the glass bubble. The bubble is made of silica and has a hollow core filled with the cancer drugs. The fatty tail of the carrier is used for the second drug delivery. This nanocarrier method helps prevent drug leakage and toxicity to surrounding tissues. It can break through the rugged barrier that is around the pancreatic cancer tumors to deliver the treatment. Find more information here.

Pancreatic Cancer: New AI Program Could Help with Early Detection

If caught early, pancreatic cancer is treatable. Experts say that early detection is the best way to improve the chances of survival as the prognosis worsens significantly once the tumor grows beyond 2 centimeters reports healthline.com . There are currently no valid screening tests for this deadly cancer for patients without any symptoms. The standard use of CT scans for detection does not always find the tumors in the difficult to visualize pancreas. The pancreas is close to many other structures and varies in size and shape. In Taiwan, scientists have made a clinically applicable computer aided detection tool that helps to easily find the pancreas. This program is accurately finding pancreatic cancer in its early stages. The use of liquid biopsy in combination with this AI program work together for early detection. Liquid biopsy is a blood test that finds the biomarkers showing there is cancer present. This program offers hope for early detection of pancreatic cancer and increases survivability for patients. Find more information here.

Photodynamic Therapy Offers Promise for Cancer Treatment

Photodynamic therapy –the use of precisely targeted light, usually from a laser, that activates or “turns on” a drug to kill cells- has been used mostly to treat skin cancers, since it is easier to deliver light to the outside of the body. But light does not travel far through the body tissues reports MedicalXpress.com . The goal of this therapy is to get the light as close as possible to red light, which has the longest wavelength, to penetrate tissue using the lowest energy. The use of the lower energy causes less harm to surrounding tissues. Doctors use a two-photon light, in which two particles of light hit at the same time. The cancer killing molecule that is activated only by light can destroy cancer cells that are resistant to chemotherapy. This therapy has been tested on drug resistant pancreatic and breast cancers. Scientists can examine cancers for levels of a certain protein using phototherapy. The light fluoresces differently for various levels. A high level of the protein shows red, and a low level shows yellow. This test shows whether the patient will be responsive or resistant to chemotherapy. If the patient is resistant, doctors can use the photodynamic therapy. This therapy is given via IV infusion in an outpatient setting and fiber optics deliver the light. Find more information here.

Equity through Empowerment

Lazarex Cancer Foundation Utilizes digital sherpa™ Train-the-Trainer Program to Create Health Equity

Dr. Marya Shegog is all about health equity, and when she joined the staff of Lazarex Cancer Foundation in January 2021, she knew right away that the foundation’s partnership with Patient Empowerment Network’s (PEN) digital sherpa™ Train-the-Trainer Program was going to help bring health equity to the communities that Lazarex serves. “We saw the digital sherpa™ digital literacy skills training workshops as a tool that so many in our communities need,” says Shegog. “We offer digital sherpa™ to our communities to help increase their feelings of empowerment.”

The digital sherpa™ Train-the-Trainer program was designed so that organizations like Lazarex could train their employees, volunteers, and other individuals to be trainers, for the digital sherpa™ program, which helps cancer patients learn to use technology as a tool to help them through their cancer journey. The digital sherpa™ program’s personalized workshops help patients and their care partners learn basic internet and social media skills, how to access their patient portals and find information and support regarding their illness, and often answer their specific technology-related questions.

Lazarex has primarily implemented a part of the digital sherpa™ Train-the-Trainer program called the Digitally Empowered™ Course, which is a 10-module, self-guided, online tool that can help patients learn things like how to access and navigate the internet, how to use social media and online support communities, and how to identify credible websites. Dr. Shegog found the Digitally Empowered™ Course so impactful that she says she wanted it embedded in their program. She ensures that every employee, every volunteer, and every one of their community members have access to the course. She has even insisted her family members and friends take the course regardless of age or health background. She says she wants everyone in her community to feel so comfortable with the course that they would feel confident teaching it to others. “These days when you have cancer, you have no choice but to use electronics and technology,” says Dr. Shegog, adding that the self-guided aspects of the Digitally Empowered™ Course are particularly helpful because patients can do it whenever they need to and differing time zones don’t get in the way, which is important for a group like Lazarex that operates in both California and Philadelphia.

Lazarex operates Cancer Wellness HUBs in Philadelphia, Los Angeles, and in the San Francisco Bay area. The HUBs are described by Lazarex as fully immersive cancer programs that are place based, community led, and culturally appropriate safe spaces for at risk community members. Through the HUBs and their other programs Lazarex helps patients who are often “medically underserved” gain access to clinical trials. The organization helps to identify clinical trials, helps offset expenses incurred through treatment, and provides community outreach and engagement. The hope, says Dr. Shegog, is to create health equity especially in the cancer space. “We know that healthcare is still very much physician led, and that there are so many biases in healthcare, and they go very deep and can hinder who has access to clinical trials,” she says. “Doctors need to inform patients about clinical trials but, if they have biases about their understanding of who the patient is, they may not do that.” PEN’s programs help combat any biases doctors may have by giving patients the knowledge to use technology to learn about their cancers and the treatment options available. “PEN is critical in creating health equity. That’s why I was so strategic about making everyone so comfortable with it, so they weren’t just comfortable using it, but also with sharing it.”

While digital sherpa™ workshops are typically targeted toward older patients and care partners, Dr. Shegog points out that Lazarex community members of all ages have benefited from the program, and that while younger users are very comfortable using technology, they aren’t always educated about identifying trustworthy sources online. One of the Lazarex volunteers that is in her early 20s completed the Digitally Empowered™ Course and learned how to find reliable sources online. “Gaining insight into how to identify what’s reliable was really helpful for her and came on time as she just recently had a family member diagnosed with cancer, and she reported that she was better able to support that family member through the tools she learned.”

In 2021, organizations participating in the digital sherpa™ Train-the-Trainer program were each given a microgrant of $2,500 to use in whichever way the organization chose to best implement the program in their community. Lazarex used their microgrant to ensure community members had access to the programs by providing hot spots and other means of technological support. Going forward, Dr. Shegog plans to continue using the digital sherpa™ Train-the-Trainer program for all new employees and new volunteers. “The Patient Empowerment Network Train-the-Trainer program surpasses the name of the organization,” says Dr. Shegog. “It does more than empower people. It gives them real life tools so they can navigate healthcare through technology.” She plans to ensure that the Digitally Empowered™ Course continues to be introduced to every person within their community, whether they are an employee, a volunteer, or a patient. She says a great time for patients to take the Digitally Empowered™ Course is during their cancer treatments when they spend a lot of time sitting. Patients can utilize the down time to learn about how to have better health outcomes through understanding technology.

Dr. Shegog speaks from experience. She was diagnosed with cervical cancer 15 years ago. At the time she was in graduate school, was far from her family and support system, and during diagnosis she dealt with the doctor bias that she now works so hard to flush from the system. Eventually she found the right doctor, but the process was difficult and expensive and filled her with self-doubt, and it is what led her to focus on health equity. “I choose to stay on the positive side of things,” she says. “I don’t talk about health disparity; I talk about creating health equity.”

Dr. Shegog earned her master’s and her doctorate degrees in public health with a focus on health promotion, education, and behavior. She also has a graduate certificate in women’s studies, and her bachelor’s degree is in biology, with a molecular emphasis. She also completed a postdoctoral fellowship with the Center of Health Disparities Research at the University of Nevada, Las Vegas. She served on the Lazarex board for more than six years before she joined the staff as the Health Equity and Diversity Coordinator. She is truly an empowered patient advocate empowering patients and advocates.

“The Patient Empowerment Network Train-the-Trainer program surpasses the name of the organization. It does more than empower people. It gives them real life tools so they can navigate healthcare through technology.” – Dr. Marya Shegog, PhD, MPH, CHES, Lazarex Cancer Foundation Health Equity and Diversity Coordinator

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope