Tag Archive for: lung cancer diagnosis

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.  

Empowering Lung Cancer Patients to Increase Their Treatment Options

Empowering Lung Cancer Patients to Increase Their Treatment Options from Patient Empowerment Network on Vimeo.

How can lung cancer patients be empowered to increase their treatment options? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyaexplain ways to improve access to lung cancer treatments and to process information more completely for the best care. 

See More from Best Lung Cancer Care No Matter Where You Live


Related Resource:


Transcript:

Dr. Nicole Rochester: 

If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is going to love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re going to feel pretty good about saying, “Okay, then I should just go where I think I feel best or who I have the best sort of relationship with?” And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15 to 20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester: 

I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions.

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities?

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities? from Patient Empowerment Network on Vimeo.

How can BIPOC lung cancer patients guard against health inequities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare advice for questions to ask your doctor and ways to ensure optimal lung cancer care. 

See More from Best Lung Cancer Care No Matter Where You Live


Related Resource:


Transcript:

Dr. Nicole Rochester:

What are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a Black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor Black and minority patients, so you want to find someone who deals with these disease processes all the time because they’re going to look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester:

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that…that’s so incredibly important. Doctor means teacher, right? I think that’s the Latin…we are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice.  

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

Diagnosed with Lung Cancer? An Expert Outlines Key Steps from Patient Empowerment Network on Vimeo.

Dr. Heather Wakelee outlines key steps that patients should consider taking following a lung cancer diagnosis. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

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Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

Trustworthy Resources to Help You Learn More About Lung Cancer

Critical Questions to Ask Your Lung Cancer Doctor


Transcript:

Dr. Wakelee:

For a patient who is facing a new diagnosis of lung cancer, there are a lot of really important things to keep in mind. But really thinking about top three of them, the first one is that you wanna know what stage the cancer is. And when we talk about stage, we’re talking about how far the caner has spread. So, sometimes a cancer is found at Stage I when it’s still just a mass, a tumor in the lung.

Stage II means that it’s spread into some of the lymph nodes that are still in the lung. And for Stage I and II, for most people, we know that that means surgery is the treatment option. The next stage is Stage III, and that means that the cancer has started to spread into these lymph nodes.

And lymph nodes are just normal part of the body, but it’s a place cancer often will go. And if it goes into the lymph nodes in the center of the chest, called the mediastinum, then it becomes Stage III. And that changes the treatment. It’s usually more complicated. You wouldn’t normally just have surgery. There’s still sometimes surgery, and sometimes radiation, and almost always some sort of treatment like chemotherapy.

But it’s very complex. And usually we recommend that if you know it’s Stage III that you have a team that’s surgeons and radiation oncologists and medical oncologists to think about it. And then Stage IV means that’s it’s spread. So, knowing – meaning that it’s spread in a way where treatments are gonna involve chemotherapy or targeted treatment or immune therapy, and sometimes radiation, but not normally surgery.

And so, because it’s such a big difference in how things are treated based on stage, that’s the most important question to talk to your treating team about. The next most important question, assuming that it’s metastatic or Stage IV because that’s the most common way that we find lung cancer.

If it is metastatic or Stage IV then you wanna find out well, are there any markers, any tumor markers or cancer genetic changes, that are gonna help pick the treatment. And when I say that, I’m talking about gene changes in specific genes. The ones we think about a lot is something called EGFR, or epidermal growth factor receptor; or ALK, which is A-L-K; KRAS. There’s a whole list of them. But the most important are EGFR, ALK, and ROS, and BRAF.

And why that’s so critical is that if you have metastatic cancer and the tumor has one of those mutations then instead of chemotherapy, the best treatments are gonna be pill drugs, so basically, medications that you take my mouth. And we know that when the tumor has one of those specific mutations, the pill drugs are gonna be more likely to shrink the tumor and have that last longer. So, that’s why it’s so important to know about that. And then the other thing that we look at a lot is something called PD-L1, and that helps us determine about the immune therapy.

So, there’s been a lot on the news about this new class of treatments called immune therapy. And those can work for a lot of different people with a lot of different kinds of cancers. But they don’t always work. And this PD-L1 test can help us know a little bit more about when it might be the best choice, or when it might be something we can add to chemotherapy. And so, getting that information back is important, too.

And I’m gonna add a little bit extra to that. A lot of times that PD-L1 result will come back faster than the gene changes of the tumor, the molecular changes to the tumor. And it’s important to have the whole picture, so you wanna know not just what stage, not just the PD-L1, but also if there are any gene changes in the tumor, so that the best treatment choice can be talked about with the care team.

Surviving Lung Cancer

(Editor’s note: Randy Broad is a 7 year lung cancer patient, avid lung cancer patient advocate, and Secretary of the Patient Empowerment Network Board of Directors. He is a former international business executive and author of the book, It’s an Extraordinary Life – Don’t Miss It.)

At 52 years of age, Randy Broad was diagnosed with non-small cell lung cancer. There was no history of lung cancer in his family. He had no idea of what the disease was. He was recommended to an oncologist, but realized pretty quickly that this oncologist was not for him. Randy did some research and, as he says, ‘got really lucky’ and found Dr. Renato Martins at Seattle Cancer Care Alliance. Randy knew right away that Dr. Martins was the right doctor for him.

Dr. Martins enrolled Randy in a clinical trial, telling him that a trial was ‘tomorrow’s drug today’. That’s all that Randy needed to hear. Eight years later, Randy is living well and telling his story to countless other lung cancer patients world-wide.

In honor of Lung Cancer Awareness Month, I interviewed Randy to ask him about how he is living and coping with the history of a lung cancer diagnosis. Below are his thoughts.

Joan: How did you deal with the initial diagnosis of lung cancer?

Randy: All I could think about was my kids. That they would grow up without a dad. As soon as I was diagnosed, I had to text my kids and tell them that I loved them. I had to figure out what it was all about and what really mattered to me. I went to the local oncologist and was told that I had 2 years to live. I thought, how does he know? How can he say that without even knowing me? I just knew that I had to shop for another doctor. This is a life and death decision. Then I stumbled upon Dr. Martins at Seattle Cancer Care Alliance and I knew that he was the doctor for me. He advised me to enroll in a clinical trial and I trusted him and did just that.

Joan: Knowing what you know now, what would you have done differently?

Randy: Back then, some of the resources weren’t available like they are now. I didn’t really know how to search for a good doctor. Now I really think that the best way to find a doctor is through a pharmaceutical representative. They know all the doctors at all the hospitals. They know which doctor is doing what research and who is most knowledgeable about drugs and clinical trials.

Joan: What would you tell a newly diagnosed lung cancer patient?

Randy: Take someone with you to every doctors appointment. Take notes, talk it over with someone else, because really, you will only take in about half of what the doctor says. You really need someone there with you. Get a good doctor that you can relate to – a specialist for your condition. And even if you really like your doctor, get a second if not a third opinion.

Joan: How do you stay healthy today physically and mentally, knowing that you have survived a serious illness?

Randy: You have to live your life. Do what you love. Focus on what matters and not on what doesn’t. Assess what you want out of the rest of your life. A cancer diagnosis puts life into perspective. Take time to enjoy. Personally, I started writing. First I wrote a blog and got my thoughts down every day. This was cathartic for me and really helped me. It also helped me keep in touch with family and friends who were interested in how I was doing. A blog was a way to communicate my story to all of them. Then I started writing a little more philosophically and my blog turned into a book! Writing this book was a great experience. I wrote favorite stories about my life so that my children could read them and know about my past experiences.

As far as exercise goes, I did yoga and meditated during the time I was getting chemo. Now, I ride my bike and walk. I only really have half a lung that works, so stairs are difficult for me. I have always eaten well. I like to cook and eat healthy. People used to send me information about diet plans. I’d receive about a diet a day: melon diet, this diet, that diet. What I do is I eat in moderation. If I want to eat a steak, I eat it. I enjoy it. I really try and live each day and enjoy what I have.

Joan: Any last thought as a 7 year lung cancer survivor?

Randy: As lung cancer patients, we don’t think about the destination, but live life in moments. When lung cancer patients share their stories, you will hear, ‘I just want to see my daughter get married’, or ‘I just want to see my grandson take his first step.’ I have seen my daughter go through high school, graduate from college, fall in love and now she lives with her boyfriend and they just got a dog together. My life is now measured by milestones that I will always remember.

 

“The greater the obstacle, the more glory in overcoming it” Moliere