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Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit from Patient Empowerment Network on Vimeo.

How can lung cancer patients optimize their telemedicine visits? Watch as lung cancer patient Jill shares her top tips for how to prepare for virtual visits and how to advocate for yourself when communicating for optimal care.

See More From Lung Cancer TelemEDucation

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

 

Transcript:

Jill:

One thing that someone else recently mentioned to me is to be patient with the doctor who might be late, and I don’t mind actually, the doctor’s late or early. I’ve had a doctor be up to half an hour early or up to an hour late, and that doesn’t bother me, I just go on living life and doing other things while I wait for the call, but I do book a bigger chunk of time on my calendar with the expectation that doctors are really busy people and they can’t always predict how long something else will go or what would come up, so it’s good to be understanding about it for sure. 

It’s also helpful for me and a lot of people to write a list of questions, symptoms, and make sure that you get them all answered, so write them down and actually check them off, or cross them off while you’re in the appointment, because you don’t wanna walk away from there thinking, oh shoot, there was that one big question I had and some doctors are okay with getting an email or something between appointments, and some nurses are great to call, but not everyone has that opportunity. 

So, I would say, make the most of your appointment just like you would in-person. Take good care to make sure that you’re advocating for yourself, and if the doctor says words after you ask your cost your question, you don’t feel like you understood them. Don’t be embarrassed or afraid or anything… just ask again, ask for clarification. Sometimes these doctors talk in big words, and my doctor has been great, my oncologist he would like draw pictures and I ask him often to write words down for me if I don’t know how to spell them because why would I know how to spell that? I don’t have a medical and oncology degree, so there’s no shame in asking questions, asking questions is smart, and it helps make us better informed, and it’s true that a better informed and a better-informed patient is a more empowered patient, and we tend to have better outcomes, when we know what’s going on in our treatment, so take the time to ask your questions.

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Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Stage IV lung cancer survivor and nurse Gina has taken advantage of telemedicine opportunities in her care. Watch as she shares her perspective about the benefits of telemedicine and her hopes for the future. In Gina’s words, “..no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care…”

See More From Lung Cancer TelemEDucation

Download Guide

Related Programs:

 
Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

 

Transcript:

Gina:

When it comes to telemedicine, I think that we have to think of it as an adjunct to care, so it wouldn’t replace your actual care with your doctor, and so I think that utilizing telemedicine would really just be kind of like getting a second opinion, getting somebody else to look at your case, and it would have been an opportunity really for you and your community doctor to work with an expert in the field, wherever, whatever disease state you’re being treated it with, and I think that’s one of the silver linings of COVID that we can use, so it wouldn’t necessarily be that telemedicine is taking over your care, but it’s really just an adjunct to your care. So, you would still be touched by your doctor, you still would be assessed by your community doctor, but that community doctor would be leaning on the expertise of the doctor in which you’re getting a second opinion or you’re consulting with…so I think that’s the way that we have to think of telemedicine and diversifying and really making sure that everybody has access to the best care, it’s not really in placement of your normal care, but just an adjunct, so in addition to your care. 

One thing that I really hope that we can benefit from is…I hope that we can really learn from COVID. We learned that really there is a disease that is not defined by borders, and so I hope that we can use the opportunities and the things the way that we were, so I guess we persevered in spite of a disease, I hope we can use that for clinical trials to and so what I mean by that is I feel like the silver lining of COVID was telemedicine, and we were able to provide telemedicine to patients no matter where they were, no matter how they felt, they were able to have the best of the best care right in the comfort of their own home. And so one of the things that I actually personally benefited from was because of COVID, telemedicine was open up everywhere, and so I was able to actually get care from some of the best ALK cancer experts in Boston through telemedicine, and so I wasn’t actually required to travel to Boston instead, I could meet with that doctor by Zoom, and sadly, once the COVID mandates were lifted, that hospital was no longer providing telemedicine, so I was getting this great care, this expert advice in my disease process, and all of a sudden it was stopped, and so I hope that one of the things that we can do is figure out ways to utilize telemedicine to really bring the best care to patients no matter where they are in the United States or really…no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care, and I think it can be delivered through telemedicine.

Lung Cancer: Gina’s Clinical Trial Profile

Lung Cancer: Gina’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer survivor Gina was shocked after receiving her diagnosis at age 38. Watch as she shares her lung cancer journey including her diagnosis, treatment, clinical trial experience, and advice to other patients. In Gina’s words, “So what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial.”

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Gina:

My lung cancer story is probably not that unique. There are actually a lot of people that are just like me. I was 38 years old, a nurse at the peak of my physical health, and I was actually training for a triathlon. And I just developed a cough, and no one would take me seriously. As a nurse, I felt like something was wrong because I was losing weight, and I wasn’t trying, and eventually I had to self-pay for a chest X-ray, and the chest X-ray showed that I had something going on in my left lung, but they weren’t really sure what it was. So, I took that chest X-ray to the emergency room for exactly what they tell you not to — a cough, and thankfully, the ER doctor took me very seriously and finally that led to a stage IV incurable, inoperable lung cancer diagnosis. As a nurse, I knew the severity of, of the diagnosis, and I knew that also there was a possibility for some new drugs, and so I’m so thankful that my doctor in Memphis knew to do biomarker testing, he found out that I was ALK-positive (anaplastic lymphoma kinase). My very first thing that had to happen was I had brain surgery.

And I feel like I’m a very lucky girl to have survived all that I have, and I watched the pain in my husband’s eyes as I rolled back from brain surgery and the f as I woke up from that brain surgery. And then the next thing was my left lung was removed, and I remember seeing my two boys and as I rolled back, how they were afraid for me to lose my lung, something that they felt like I needed. And so again, we experienced so much joy as I came back from that lung surgery and eventually recovered, and then I remember the first day that I actually was able to run a mile again, and that was so incredibly exciting for me. So now I was diagnosed in 2015, and now it’s 2021 and through the years, I went through each targeted therapy and cancer outsmarted it, and so the targeted therapy failed me eventually. And each one lasted about a year or so, and I think that through these years, I kept thinking that science would keep up with me, and I kept riding that wave of science and research, and I was so thankful. But we knew that it was incredibly important to continue to fund research for lung cancer, because when it comes to lung cancer, it seems like even though it’s the number one cancer killer of men and women and anyone with lungs can get it. The funding for it is so low because there’s still a thought process that smoking is the cause of lung cancer, and while we know that there’s a lot of people that are just like me who have absolutely no risk factors, we know that research is incredibly important for this disease. So, fundraising for lung cancer research and through our group, ALKpositive.org was incredibly important for me.

I just kept hoping that the next thing would happen, but I finally ran out of the last targeted therapy, and so that’s when I started looking for a clinical trial. And right now, it’s not that easy to find a clinical trial. Within our group, we have some amazing volunteers and members who really work to put the clinical trials out there for ALK-positive patients and to make sure that we know that we’re aware of them. And so anyway, I had a great friend who helped me look through the clinical trials, and eventually I found the perfect clinical trial for me. But it required me to travel to Boston, Boston quite a bit, and so that was really difficult raising two young boys and having my husband, who is also working, not be available. It was just really not fitting with our family to be able to travel and be away from my family so much, so I kept looking for clinical trials, and I finally found one that was about 200 miles away. And it still requires me to leave my family about every two weeks or so, sometimes just for a blood draw, but I’m so incredibly encouraged, because we found out that the clinical trial of this combination drug is working, and we found that cancer though it had kind of spread everywhere in my body, in my brain and in my pancreas, and even around my pulmonary artery, all of the cancer had decreased by about 50 percent. So, I’m incredibly encouraged, and that’s where we are now in the journey, and we’re just going to hope that the clinical trial keeps working and that new options are coming down the pipeline for other lung cancer patients.

A clinical trial is something that has, my perception has completely changed about. I thought when I was first diagnosed, a clinical trial was kind of like being a guinea pig, and now I think that it’s more like being a pampered poodle. So, what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial. We know that sometimes clinical trials don’t always pan out to have the best thing, but I see over and over again that clinical trials for patients have a lot of science behind them, and it’s an opportunity for patients to try the latest and greatest.

If you’re considering a clinical trial as an option, the most important thing is for you to become informed, really make sure you understand some clinical trial, really understand what the expectations are of you, and make sure that you’re willing to do what’s required of the clinical trial, make sure, that also that it’s conducive to your lifestyle and to your family. I think those are the things that are the most important. A clinical trial is an opportunity for the latest and greatest, but you also have to make sure that you understand what’s required and make sure that you are okay with the requirements of the trial.

If I were to tell you how I’m feeling today, I would tell you that I’m feeling encouraged that I have so much hope for the future. Being a part of a clinical trial has…honestly, if I’m very, very truthful, it was scary at first. In fact, I even cried when I signed the clinical…the clinical trial consents. It was completely scary, but now that I’ve been into the clinical trial now about nine weeks, my last scans were really good and really promising, and so for me, I feel very, very hopeful for the future, and I’m hoping that this is a drug combination that can be brought to other patients and that they can all benefit from this clinical trial and from my experience.  

Lung Cancer: Donna’s Clinical Trial Profile

Lung Cancer: Donna’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer patient Donna had a sub-optimal experience with her first treatment regimen. Watch as she shares her lung cancer journey, knowledge and benefits gained from a clinical trial, and her advice to patients seeking additional treatment options.

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Donna: 

I’m Donna, I am 68 years old, and I was diagnosed with lung cancer in 2012. 

When I was first diagnosed with lung cancer, I was put on a regimen of paraplatin (Carboplatin) and bevacizumab (Avastin) drugs. I received that for four or five months and did not do particularly well on it.  My body did not react well to those chemicals, my tumors, however, did respond as long as I was getting the drug. 

After we discovered that my tumors were not going to respond to chemo unless I was getting it all the time, my doctor suggested that I either go on another drug, chemo drug that was even harsher than what I had been on and did not have as good of results or suggested that I might do a clinical trial. I had been told that I probably only had about four months to live. And I decided that, number one, I was in no hurry to be sicker than I already was and number two, that if there was a way I could help future patients by participating in a trial that the trial was the way I wanted to go. I never ever assumed that I would benefit from being in a clinical trial, I was very uninformed about clinical trials. 

A clinical trial is a way that the pharmaceutical company or researchers test certain drugs. They will see if the drug works at all, it moves to humans and out of the laboratory, and everything doesn’t necessarily work the same way or on humans as it did in the lab. So…in the Phase III trial like I was in, by that point in time, they’re learning how in the fairly general population, how the drug is going to react, if it’s actually going to work, how much of a dose is the right dose, and how frequent it should be. The clinical trial is just to provide the information that’s needed to determine whether a drug should go forward into the general population or not.  

One tumor started growing again, and I chose to have radiation, which made me have to get out of the clinical trial. But after radiation, I went back onto the same drug that we had been testing through the clinical trial, because I had responded so well through it, and I stayed on that drug until from 2013 until 2019. And during in April of 2019, I quit having any kind of treatments, and so now I’m just monitored every four months to make sure that my tumors have remained stable and so far, so good. 

I would go into a clinical trial without hesitation if my tumors begin to grow again, my first consideration will be to get into another clinical trial, you are getting the cutting-edge drug. And not only that, while I was in the clinical trial, I had a researcher and I had my oncologist, I had a lot of people really following my health. I had multiple, far more scans done, which some people might look at as a negative, but they were really following me closely to make sure that my response was what it needed to be. You can get out of the clinical trial, you are not stuck in a clinical trial. So, if you get into it and you are either sick or if your tumors are not responding the way you hope they would, you’re not stuck in a clinical trial, and that’s an important thing to know. To me, there will never be another option that I will consider first, I will always consider the clinical trial first. And because I felt that the quality of care I got was higher, and it also saves you a lot of money because at least the drug itself is going to be provided at no cost. 

So that’s a huge consideration too. 

I would not be afraid to look into clinical trials, I would never accept a doctor telling me that there were no options for me. I have friends who had doctors tell them that they just didn’t think there was anything more that could be done, they needed to go into hospice. My advice is to look for a different doctor, because that’s not always true. And clinical trials are not necessarily easy to find, but I would certainly do my due diligence and look into whether there is one that’s good for you. And I would also strongly recommend that you immediately go through genetic testing so that you know what kind of mutations you might have, because that will drive the kind of clinical trial you might be wanting to get into, and also just the treatment in general. 

BIPOC Lung Cancer Patients and Health Disparities

BIPOC Lung Cancer Patients and Health Disparities from Patient Empowerment Network on Vimeo.

What do some BIPOC lung cancer patients experience in terms of health disparities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain health disparities at the different stages of lung cancer diagnosis and treatment – and note differences in diagnosis and survival statistics. 

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Transcript:

Dr. Nicole Rochester: 

So I want to talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer?  

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage, there’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for Black patients is worse than white patients, even though Black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than Black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects Black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lot    s and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well. And it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care.

Who Is Eligible and How Can I Learn More About Clinical Trials?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about who is eligible for clinical trials and how you can learn more about them. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the lung cancer experts advice.

Who is Eligible and How Can I Learn More About Clinical Trials? from Patient Empowerment Network on Vimeo.

Clinical Trials: Building on What We Know and What We Can Achieve

Interview with Dr. George Simon, MD, FACP, FCCP at MD Anderson and Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center

At the LUNGevity Live Lung Cancer Town Meeting, Andrew Schorr interviews Dr. Simon and Dr. Heist about clinical trials. Dr. Simon explains how clinical trials can give you access to tomorrow’s medicine today. For example, Bevacizumab was first introduced in a clinical trial in 1999, but did not get approved or become standard of care until 2006/2007. Next. Dr. Heist explains how the phases of clinical trials.

  • Phase 1: Testing to find the right dosage in people
  • Phase 2: Once the recommended dose is know, testing is done to find out the real response rate and real efficacy in people
  • Phase 3: Once the dose and results are known, a randomized study is done to compare it to the standard of care to see if it really is better

Watch the full video below to hear all about clinical trials from two lung cancer experts.

Clinical Trials: Building on What We Know and What We Can Achieve from Patient Empowerment Network on Vimeo.

The Bureaucracy of Clinical Trials

At a press interview with Dr. David Stewart, Head, Division of Medical Oncology, University of Ottawa, Dr Stewart laments the extreme inefficiency of the clinical trial process. Patients are dying while government is regulating. The clinical trial process is too long, too costly and too inefficient. Watch this video from The World Conference on Lung Cancer that recently took place in Denver, Colorado:

The Bureaucracy of Lung Cancer Clinical Trials from Patient Empowerment Network on Vimeo.