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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.

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

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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 Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool from Patient Empowerment Network on Vimeo.

Can lung cancer patients look to telemedicine as a long-term tool in their care? Watch as lung cancer patient Jill explains how telehealth has been a benefit for her care and how it can serve as a benefit for other patients.

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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 Advocate Shares Importance of Staying Hopeful During Pandemic

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

 

Transcript:

Jill:

In the future, I hope that telemedicine plays a really significant role in my care and in the care of others as well, so I would really like to not have to travel to my cancer clinic for every single appointment. For some of them, I definitely want to go. There are times when we want to look our doctor or nurse in the eye and really have strong, stronger communication, but for the most part, I would rather not have to travel and I live really close to my cancer center, so I always think about people who live farther away, and there are so many people who travel hours, there are people who travel days to get to their appointments, there are people who have to leave their communities and be, away for an extended period of time, and that’s not something that I would want to do, especially when we’re in a going counter treatment, we can feel so alone and fragile, and I would rather that people had more support and other people with them could stay at home, could stay in their communities and just have a call and their people could be with them if they wanted it during the call, they can all gather around and listen to.

And I think it matters so much. It’s not just convenience, it’s better care for people to have their loved ones near them, that’s one thing we’ve learned during COVID, even more so that it’s not good to be alone. It’s good to have our loved ones near us supporting us, and so as much as possible, if we can keep telemedicine as an option to use for the times when it doesn’t really matter if we’re in person or not, let’s make that choice, let’s make second opinions available let’s work out whatever permissions need to be in place for people to get care across regional lines or state lines, let’s get those things in place so that we can provide the best care possible, and let’s always be thinking about our most vulnerable people, and those are usually the people in the rural and remote regions, the people with a really hard cancer diagnosis, the people who are feeling alone and vulnerable, let’s take it, care of them.

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic from Patient Empowerment Network on Vimeo.

How can lung cancer patients stay hopeful during a pandemic? Watch as lung cancer patient Jill shares her advice on coping methods that have been helpful for her during the COVID-19 pandemic.

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

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

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

 

Transcript:

Jill:

These are really hard times, and we need to recognize that we’re not alone, that we’re not the only ones, we’re not the only one going through the hard time, and it’s so important to reach out to others, to reach out to someone, to ask for help, and we hear some really, really sad stories of things like people being turned away from the ER or we can have a lot of fear about what might happen. And I think it’s really important to not let those fears rule our lives, that can be really challenging to do, it’s very easy to say, but it takes a lot of skills to live without letting fear take hold at times. So, reach out for help. Talk to people, ask them, how do they cope? What do they do? For me, I talked to friends and my friends help remind me of what’s real and what’s true, my friends helped me hold on to hope. I’m a person of faith, so I believe in Jesus, and I read the Bible and I pray, and that really helps me too.

But each person finds their own ways to hold on to hope and let go of fear, and fear is, fear is not our friend. Good things don’t come from fear. So the other thing is we need to be advocates for ourselves, sometimes we need to ask for what we want, and if we believe in something, we need to fight for it, we can’t just sit back and expect things to be dropped in our lap, so they’re gonna be tons, when we’re going to have to really, really work hard, and that could hurt and in my life is an advocate, I find there’s a lot of pain and a lot of hard work, but there’s also a lot of real joy, and I get to meet some of the most amazing new people, and those are people who helped me have hope, so grab a hold of the people who help you have hope and don’t let go, call them up and reach out to them, lean on them.

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Understanding Telemedicine Pros and Cons for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What can lung cancer patients expect for telemedicine opportunities and challenges? Watch as lung cancer patient Jill shares some situations telemedicine has served well and some patients who have run into care disparities.

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

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Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

 

Transcript:

Jill:

Telemedicine offers some opportunities as well as challenges, so I’ll speak to some of the challenges at first, which are…we don’t in-person, tend to build relationships as quickly. In general, I find when we’re just talking over the phone, when we’re in-person, we can get to know each other more comfortably, for the most part, everyone is unique, so you could be different, but for me, the relationship-building aspect is something that I’ve missed out on to some degree. 

And the doctor may miss some visual cues, so for example, there might be something that he or she would pick up on, would notice some sort of symptom or side effect that we had perhaps not noticed, we’re not, thought important enough to raise. So those are challenges. How do we get past not being able to see each other, so also, what if the doctor is delivering some tough news that could be harder to do if we’re not in-person, if we’re not able to see those visual, non-verbal cues, that can help us understand how to help the doctor understand how the patient is processing, receiving the news. Another thing is that sometimes patients, and I’m not going to say that I do this, but I’ve heard quite a few patients say that they might try to hide some of their side effects because they’re concerned that they’ll get a reduced dose and they’re concerned that it won’t be as effective. 

Now, from what I’ve heard, you know I understand that’s not a really wise choice to make, but everyone makes their own choices, and so if the patient is trying to hide the side effects from their doctor and their nurse, it might be more helpful for that patient to actually be present with their healthcare team, so the healthcare providers can actually notice and pick up on things. 

The opportunities are really powerful though, because it frees up so much more time for the system and generally, we often, I’ve had an awful lot of appointments, I know my oncologist quite well because I’ve had the same one since 2013, and we don’t need to talk for a long time, so usually 10 minutes is good and it saves the travel time in. Also, it opens up possibilities for remote consults with potentially anyone anywhere in the world, which is so terrific as an opportunity for a second opinion perhaps, or for someone who doesn’t have a doctor in their community, it makes it so much easier for them to gain access to care that they need.

And we really need to focus on the disparities that occur, especially people in rural and remote regions can miss out on some of the best healthcare. And if this is a great opportunity for us to serve them better.

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool from Patient Empowerment Network on Vimeo.

How can telemedicine serve as a vital tool in lung cancer care? Watch as stage IV lung cancer patient Jill shares how telehealth has helped her during the COVID-19 pandemic and how she views it in the future of her care.

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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:

I was diagnosed with stage IV lung cancer back in 2013, and prior to the COVID pandemic, I had never had a telemedicine appointment, but now that I’ve had quite a few.

I think they’re such an important tool in lung cancer care, especially during a pandemic, when they protect us from exposure to various potential infections, not just COVID, but it can protect us from illness, so that’s terrific. But also, they’re really convenient, I just have a quick 10-minute appointment, there is no waiting in the waiting room, there’s no traveling to the clinic, which is…I’ll be honest, that’s not a very big inconvenience for me because I live quite close to my cancer center, but especially for people in rural and remote regions, what a game changer it can be to just be able to talk on the phone or perhaps have a video chat with a health care provider. So, I think that telemedicine is a very important tool in lung cancer care, and I hope that it will continue, maybe not 100 percent of the time, but there will still be available to him after the pandemic is over.

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

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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:

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.

Patient Profile: Bob Lawson

“I had a clinical trial in my hip pocket already because I had taken the extra steps. I think it saved my life and got me in the right place,” says empowered patient Bob Lawson who is currently participating in a clinical trial for his non-small cell lung cancer, which recurred a little over three years after his initial cancer diagnosis and treatment. While Bob is in the right place now, his cancer journey has not been an easy one, and he has had to be actively involved in his treatment to ensure the best possible outcome. “It’s so difficult to know what to do, it’s overwhelming. You have to do research on your own,” says Bob, who recommends the Patient Empowerment Network (PEN) website for patients looking for a place to start. “For patients seeking out advocacy, PEN has something that’s very important,” he says referring to the free, online resources provided by PEN. Bob especially likes the PEN-Powered Activity Guides, found here, and says they are powerful tools for patients to find hope and ways to benefit from the new technology and treatments available. His best advice, though, is to do what he’s done all along. “I would say ask questions. A lot of them. You want to ask the right questions and the right questions change,” he says. “If you don’t ask the questions, you’ll never know.”

When he was first diagnosed with lung cancer, Bob says he had no idea what to expect. “At that time, I didn’t know anything about anything,” he says, but he adds that he did know enough to ask questions, and by asking questions, he improved his treatment outcomes. He was diagnosed as the result of some testing that was done for a medical episode that ultimately turned out to be a transient ischemic attack (TIA), which is often referred to as a mini stroke. During the testing, an x-ray revealed a shadow on his left lung, and a fine needle biopsy confirmed that it was cancer.

Bob says when he talked to the surgeon at the hospital, he wasn’t comfortable with the treatment plan, which included a surgery where his ribs would be cracked. He asked the doctor if the invasive surgery was really the only option, and that question got him referred for a second opinion. “Most doctors encourage a second opinion,” he says. “You have to become educated very quickly about what you’re dealing with.”

Bob says the second doctor won his confidence almost immediately. He recommended a minimally invasive lobectomy of the upper left lung and, although his cancer was stage 1B and did not require chemotherapy, the doctor strongly recommended it. The surgery was successful as was his round of chemotherapy. “I did the entire regimen, rang the bell on my way out the door, and they said I was cancer free,” says Bob. That was seven years ago.

Bob Lawson

A few years after being declared cancer free, Bob decided it was time to address the TIA he’d experienced. The cause of the TIA had never been discovered so Bob had a scan of his carotid artery. His artery was clear, but the technologist noticed something on his thyroid. That something turned out to be cancer. It was a nodule classified as malignant neoplasm, and it was unrelated to his lung cancer. Fortunately, the nodule was completely encapsulated in the tissue and was removed. However, the treatment protocol at the time was to completely remove the thyroid. “I didn’t like the sound of that,” says Bob who once again asked a question. “What would you do,” he asked his doctor. Later that night, Bob says his doctor called him. Because of Bob’s question the surgeon dug a little deeper and spoke with the pathologist who said he wouldn’t remove the thyroid. Bob kept his thyroid and, with the assistance of minimal medication, he’s had no problems with his thyroid since. He says five months after he turned down surgery to remove his thyroid, the nodule he had was declassified as cancer.

However, just ten months after the issue with his thyroid, Bob lost his voice and noticed he was coughing a lot. At the same time, he was experiencing significant pain in his right hip. He attributed the hip pain to not getting any younger and the natural consequences from old injuries, but it bothered him enough that he went in for some tests. The tests revealed a little bit of discoloration on the bone that the doctor said he normally wouldn’t worry about, but since Bob had a history of cancer, he wanted to do a scan of the area. “The scan lit up like a Christmas tree,” says Bob. His lung cancer was back, and it had spread to his right femur and hip. Bob had successful radiation treatment on his hip, but he couldn’t have radiation on the tumor in his lung because of its location near the vagus nerve and vital organs. The tumor location also meant surgery was not an option, so his doctor recommended a targeted monoclonal antibody immunotherapy.

Once again, Bob sought a second opinion. “What I had done when they discovered the hip tumor was called the insurance company and got permission to get a second opinion,” he explains. He actually got the opinion of two other oncologists who both agreed with his doctor’s recommended treatment course, but the second doctor, with Johns Hopkins Medicine, went a step further and said, if the treatment stopped working, he had a clinical trial that Bob might want to consider. So, Bob took home the paperwork for the trial and began immunotherapy treatment with his doctor.

It was a relatively new therapy at the time, and, for a while, it worked to reduce the size of the tumor in his lung. Then, he had two months in a row where his scans showed disease progression, and he was taken off the therapy and given a prognosis of 10 to 18 months to live. He asked his doctor what they were going to do, and his doctor said he could do chemotherapy again. “That was the last thing on earth I wanted to do,” says Bob, who asked his doctor about a clinical trial. The doctor agreed that a trial was probably the best course of action for Bob, but he didn’t have any to recommend.

That’s when Bob pulled the Johns Hopkins clinical trial out of his hip pocket. He’s been having infusions every month for the past 17 months, and he’s really happy with the results. “The tumor is steady or reducing all the time, which is great, obviously,” he says.

Bob remains vigilant about his healthcare and continues to pay attention to what other treatments might be available to him should this trial stop working. He continues to research other trials, sometimes reviewing as many as 20 in a week. “Most people just trust the doctor, and that’s the wrong approach,” he says. “Get a second, third, and fourth opinion, and have something ready to go in case what you’re doing doesn’t work.” Bob has learned that approach through experience, but he hopes his story will help make it easier for others. “How can I best support someone who’s like me,” he often asks himself. “I think that’s something I’d like to do,” he says.


Patients who want to ask questions like Bob did, but aren’t sure what the right questions are, can start here with the PEN downloadable office visit planners available for free at powerfulpatients.org.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Randy Broad: Voice of the Patient

Board Member, Randy Broad, speaks at House Minority Leader Nancy Pelosi (D-CA) Press Conference

Patient Empowerment Network Board Member, Randy Broad, was invited by Minority Leader Pelosi to the Capitol building to give a ‘Voice of the Patient’ presentation on the subject of continued coverage of pre-existing conditions. Above is a clip from Minority Leader Pelosi’s new conference on June 27, 2018. You can see the full conference on C-SPAN here.


Transcript:

Rep. Joe Kennedy III :

For many of us, battling lung cancer would be the ultimate fight for our lives. For Randy, that fight was just beginning. Now, he fights for every single patient who has had to confront what he did. We’re lucky to have Randy with us today.

Randy Broad:

Thank you, Congressman. 10 years ago, this last March, I went to bed that night just like everyone in this room who go to bed tonight. The next morning, I woke up in a coughing fit, and I coughed up blood and I knew something was obviously amiss. Called my doctor. Went in and within seven days I had been diagnosed with Stage 3 Small Cell Lung Cancer.

Being 52, businessman, a father of two teenage kids, and considered extremely low-risk for such, this came as quite a shock. Fortunately at the time, my company provided excellent healthcare for me and my employees.

During treatment, I was deemed inoperable and the post surgeon meeting I learned I had maybe a year, two tops, to live. Well, as you can imagine that had a pretty profound effect on my life. So, the first thing I did was sell my business and focus on my family. Now, I was faced with personal healthcare insurance and was now paying $1,000 a month with $1,000 deductible and a significant co-pay. But in a few years from there, came along The Affordable Care Act and this changed everything with how I was insured for my health care needs moving forward, both insuring access and treatment with financial protections. Needless to say, I slept better that night.

I joined the Washington state Health Care Exchange, called Apple Health. We grow apples. My insurance premiums were cut in half while maintaining the exact level of care and I was able to maintain and keep my existing treatment team, at Seattle Cancer Care Alliance, which I cannot even begin to tell you how huge that is.

With the recent rumblings here in Washington D.C. to abolish The ACA, me, along with 16 million other cancer patients alone are extremely concerned about maintaining our access to quality health care coverage. Especially, when it comes to pre-existing conditions which we will all have. Health care is the number one cause of bankruptcy in The United States. That probably doesn’t come as a surprise to too many people in this room. And it’s going to get worse as those of us who will forever have a pre-existing condition, can be discriminated against it.

With The ACA, we had begun to experience what patient-centered care can be like and truly means. We cannot go backwards. To what it was like before the protections for pre-existing conditions. And I request Congress to protect The ACA so it remains available to other patients like all of us and like yourselves now and in the future.

Thank you very much for having me here.

Clinical Trial Helps Lung Cancer Patient Live Active Life

Editor’s Note: This blog originally appeared on the American Lung Association’s Blog. You can view it here.


Donna Fernandez’s father died of adenocarcinoma at the age of 49, just six months after he was diagnosed, so when she learned she had the same disease, she knew exactly what it meant.

“They told my husband that I would live for four months,” she recalled.

Adenocarcinoma is a form of non-small cell lung cancer often found in the outer area of the lungs and makes up about 47% of lung cancer cases, and usually grows and spreads to other parts of the body more slowly than small cell lung cancer does. It develops in the cells of the outer layers of lung tissue, which line the cavities and surfaces of the body and form glands.

Donna was put on traditional chemotherapy and the cancer tumors did shrink, but the moment she stopped chemotherapy, they came back. “I was most worried about my dogs,” Donna said. “They can be pretty evil, and no one is going to love these little devils the way that I do.”

Like many patients, Donna, who worked through her treatment, had a tough time with chemotherapy. If she had treatment on Thursday, she would feel fine until the steroids from the treatment wore off by the weekend.

“I’d be so nauseated that I could not bring myself to drink anything,” she remembered, “I wouldn’t be able to walk from the couch to the refrigerator.”

During chemotherapy in 2013, Donna was approached with the opportunity to join a clinical trial, and it changed her life.

“I had no idea that it would help me,” she said. “I thought that I was helping future generations.”

Still an active participant in her clinical trial for treatments, Donna checks in every two weeks for an infusion and extensive blood tests. With the personal care administered from her healthcare team, to the tailored medical regimen, down to the feeling of being among family when she visits the Cancer Center at University of Texas Southwestern, Donna admits that she went from surviving to thriving.

“I can’t say enough about the ramifications [of the clinical trial],” she said. “I’m living proof. I’m not just alive, I’m living.”

Donna and her dogs travel often as they participate in dog agility competitions throughout the country. They went to Tennessee last year, and Donna is now preparing for a trip to Missouri, all thanks to the tremendous treatment received as a result of a clinical trial.

“I’m living my life and that’s so significant,” she said. “Just a few year back, I probably would not have made it.”

Donna’s story is proof that clinical trials are a valid treatment option and should be considered as an option throughout treatment.

The Conversation: Getting The Right Treatment & Testing For Lung Cancer

Panel Interview with Emma Shtivelman, PhD, Chief Scientist Cancer Commons, Mary Ellen Hand, RN, BSN, Nurse Coordinator Rush University Medical Center, and Stage 4 Lung Cancer Patient, Mary Williams.

Janet Freeman-Daily (@JFreemanDaily), patient advocate, metastatic lung cancer patient, and co-moderator of #LCSM chat hosts The Conversation about what patients and caregivers can do to get the right treatment and testing for lung cancer. The panel covers a wide variety of topics including the following:

  • Information needed to make decisions about treatment options
  • Molecular and genetic testing, and where to go to learn more about them
  • Targeted therapies, clinical trials, and liquid biopsies
  • Barriers to getting the right treatment at the right time
  • Seeking second opinions
  • What to ask your health care professionals

Check out the full conversation between lung cancer experts below.

The Conversation: Getting The Right Treatment & Testing For Lung Cancer from Patient Empowerment Network on Vimeo.

Getting a Grip on Anxiety While Fighting Lung Cancer

Panel Interview with Susan Varghese, RN, MSN at MD Anderson, Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center, Dr. George Simon, MD, FACP, FCCP at MD Anderson, and Melinda Dunn, Stage IV Lung Cancer Survivor, Patient Advocate

At the LUNGevity Live Town Meeting at MD Anderson Cancer Center in March 2016, Andrew Schorr interviews the panel about understanding anxiety, depression, and the statistics of lung cancer. Susan Varghese begins by explaining that by patients talking and asking their healthcare team for help allows them to understand and then prescribe the appropriate care for them. Dr. Heist and Dr. Simon caution patients to interpret statistics with care because the are only averages, and not specifically about you. Every case and person are different. Melinda adds to that by saying she overcame her cancer by refusing to believe the statistics because “it’s not me, Melinda, it’s some group.”

Watch the full video below to hear all about anxiety and statistics from four lung cancer experts.

Getting a Grip on Anxiety While Fighting Lung Cancer from Patient Empowerment Network on Vimeo.

Frederique’s Lung Cancer Story

This post was originally published on MyLifeLine.org. MyLifeLine.org Cancer Foundation connects MyLifeLine logocancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Frederique was with her son when she started speaking strangely; she wasn’t finishing her sentences and her words weren’t making sense. She didn’t realize it was happening but her son was alarmed and contacted his dad and emergency medical services. The next day, Frederique learned she had tumors in her lung and brain. Her diagnosis was  Stage IV  lung cancer which had metastasized in the brain.

“We fear cancer so much as a society that when you find you have it, you just have to face it,” Frederique recalled upon learning her diagnosis. “The fear was gone.”

Two rounds of chemotherapy, two gamma knife sessions and three rounds of radiation were part of her treatment process over the two years she has been diagnosed , and she is now looking into a clinical trial.

Although she doesn’t know if she will ever be cancer-free, Frederique chooses to look at her cancer journey as an adventure, see the joy in her experiences and live a normal life. She does power yoga, exercises through hikes and walks, and even traveled to France, all while living with cancer.

“There is a disconnect with this diagnosis and how my body is doing. I really do live a normal life,” Frederique explained.

Frederique MLLEarly on, she created what she calls a “healing circle” to help her and her family throughout her cancer experience. She used MyLifeLine.org to share her story and coordinate volunteers.

“I think the technology is amazing. It helps me not only to receive support but also to give hope around me. Staying vibrant and positive throughout such a challenge seems to be inspiring for people. I am delighted that my experience can be of service that way,” she said.

Frederique’s advice for others facing a cancer diagnosis is to find a way to relieve the fear. “Cancer is such a fearful event, especially stage IV,” Frederique explained. “Find a way to ­not be scared of the disease. In my opinion, fear is detrimental to the healing process.” She keeps the fear at bay by meditating and connecting with the energy around her (yoga, chi gong, reiki), but she explained that anybody can find their own way of relieving the fear.

“I could live this journey in total fear and be in a dark mood all of the time, but then I would lose precious time. Yes, I have days where I am scared or sad but most of the time I prefer to live in joy,” Frederique said.

Thanks to the cancer, Frederique rediscovered herself, deepened her connections to others and shifted to a new understanding of the world. “I’ve never been happier, to be honest. I’m where I’m supposed to be now,” she reflected.

Activating a Community of People Living With Lung Cancer

November is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

LVNG With Program

Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer FoundationFree to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.

Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”

Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underserved community. We intend to add social media elements, such as Facebook and Instagram,  to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.

Following are excerpts from the personal stories you can find on at www.LVNG.com.

Dann’s Story

Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:

“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.

“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.

“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.

“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.

“There is so much more that I appreciate.”

Deena’s Story

Deena, who was diagnosed with lung cancer in 2012, shares the following perspective on Friends and Family:

“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.

“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”

 

If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.

 

John McCarthy

John McCarthy

John McCarthy is VP, Global Commercial Excellence, AstraZeneca

How to Communicate With Your Medical Team

During a recent town meeting for lung cancer patients, families and caregivers, Katie Brown, Certified Patient Navigator and Vice President of Support and Survivorship Programs at LUNGevity, explains how LUNGevity can help patients gain the knowledge and support they need to participate in meaningful and productive discussions with their medical team. An informed patient is a confident and empowered patient. Knowledge leads to confidence and shared decision-making.

LUNGevity and other patient advocacy organizations offer patients information about their disease, clinical trials and treatment options. Patients will have the opportunity to connect with other patients that have the same disease condition and share stories about their diagnosis, treatment and how they cope with their illness. They can then take comments and questions back to their medical team for discussion.

In the video below, Dr. Malcolm DeCamp, Chief of Thoracic Surgery, Robert H. Lurie Comprehensive Cancer Center of Northwestern University explains that it is crucial that patients communicate physical and emotional changes to their medical team. The patient plays a major role in their plan of care and they need to provide constant updates and information to their team so that they can get the best care they deserve.