Day 30: Jamie Shull, advocate. "Anyone with lungs can get lung cancer."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 30: Jamie Shull, advocate
"Anyone with lungs can get lung cancer."

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole.
...continue reading...

Day 29: Genevieve de Renne, caregiver. "Never underestimate the power of love, and the power of your own thoughts."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 29: Genevieve de Renne, caregiver
"Never underestimate the power of love, and the power of your own thoughts."

How long have you been a caregiver?
"If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years."

What was it like in the beginning?
"I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear."
...continue reading...

Day 28: Dr. Alice Shaw. "Alice is my super-hero."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 28: Dr. Alice Shaw
"Alice is my super-hero."

(From Linnea Olson's blog, Outliving Lung Cancer)

Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale’s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he’d broken up with me via email. In my head I was already thinking I’d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch–as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even heard of an ALK mutation.
...continue reading...

Day 27: Dave Bjork, survivor. "It’s all about relationships."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 27: Dave Bjork, survivor
"It’s all about relationships."
Twitter: @bjork5

Who is Dave?
I am a lung cancer survivor, and I am a passionate advocate for cancer research and education. Professionally I’m the Vice President of Development for the National Foundation for Cancer Research in Bethesda, Maryland. In my role I advocate for funding important research projects led by scientists at places like Massachusetts General Hospital (MGH), MD Anderson, Dana Farber and so many others. Among the researchers that I am very vocal about, and that are supported by my organization in the area of lung cancer, are Drs. Daniel Haber and Alice Shaw at MGH, and Dr. Jin Jen at Mayo Clinic.

What is your connection to lung cancer?
I was diagnosed with lung cancer. I was 34 years old, married with 3 young boys age 5, 3 and 1, and I had never smoked. I received amazing treatment at Mass. General Hospital by thoracic surgeon Dr. Doug Mathisen among others. I had a lobectomy to remove my lower left lobe, and was fortunate that there was no spread of disease. I have been forever grateful and am committed to advocating for more research for lung cancer.
...continue reading...

Day 26: Christian Nataline, survivor. "You understand that we’re all interconnected to each other and with the planet."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 26: Christian Nataline, survivor.
"You understand that we’re all interconnected to each other and with the planet."

(From Linnea Olson's blog "Outliving Lung Cancer.")

I met Christian Nataline five years ago—we were guests of our mutual oncologist Dr. Shaw at a function where she was being honored. I was struck by how young Chris looked and learned that he’d been diagnosed just after turning thirty-one. He’d been married less than a year (to his amazing wife Karen) and was the father of an eight month old. Like me, he was also a mutant—ALK+ and stage IV.

...continue reading...

Day 25: Roz York Brodsky, survivor. "There is much more hope than there used to be"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 25: Roz York Brodsky, survivor.
"There is much more hope than there used to be"

Eleven years ago Roz York Brodsky was diagnosed with non-small cell, giant cell, locally advanced lung cancer. This is a very rare form of lung cancer. At the time there wasn’t the social media support and people like Peter Jennings and Dana Reeves were dying from lung cancer. She was terrified. The upper right lobe of her lung was removed. She was only 46 at the time. Afterwards, she began regular check ups.

A year ago, she was diagnosed with stage 1 non-small cell adenocarcinoma lung cancer. Luckily, it was caught early due to her on-going regular check-ups. At this point they removed the middle right lobe of her right lung. She currently has stage 0 but with pre cancer cells in her left lung, so is facing another possible surgery.

Roz has been able to resume a normal life to an extent. ...continue reading...

Day 24: Jeff McManus, caregiver and advocate. “I used to be a loner before meeting Cara.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 24: Jeff McManus, caregiver and advocate.
“I used to be a loner before meeting Cara.”
Twitter: @Jeff3263827

Jeff was a caregiver for his wife, Cara, who passed away in April 2015. She only survived 20 months after being given her stage IV lung cancer diagnosis. They met in 2006 and quickly became good friends. They would have been married for 4 years in June of that year. Jeff confessed to me, “I used to be a loner before meeting Cara. She brought me out of my shell and we started hanging out with friends.”

Jeff has a PhD in biology and works full time in a research lab. He enjoys his work and his coworkers. In his free time he likes playing trivia with his friends, going to Indie rock concerts, and cooking. He and Cara both loved cooking and often made meals together. He also likes to stay active by riding his bike, another fun activity him and Cara did together, lifting weights, and playing basketball.
...continue reading...

Day 23: Rachael Willeford, advocate. "Everyone deserves hope!"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 23: Rachael Willeford, Lung Cancer Advocate and Co-chair of Lafayette (Louisiana) Free to Breathe
"Everyone deserves hope!"
Twitter: @PollywogPrinces

Rachael, what is your connection to lung cancer?

Four members of my mom's side of the family have died from lung cancer. Two of them were my mom's best friends - her brother and her cousin. They both were ever present in my life. In 2012, I learned that someone had started a fundraiser called Free to Breathe in my town, and I decided to participate. Afterwards, I volunteered on a committee and would eventually become the co-chair of the event a few months later. After I learned that my mom's cousin, (who passed away in 2009,) and her father, (who also passed away from lung cancer in 1978,) had virtually the same survival rate, I dove headfirst into advocacy. I now focus on patient and community education and outreach, locally, with Free to Breathe.
...continue reading...

Day 22: Sandy Arlin Jauregui-Baza, survivor. “Life doesn’t have to end after diagnosis. It can be a wake-up call to start making YOU your biggest priority in life.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 22: Sandy Arlin Jauregui-Baza, survivor
“Life doesn’t have to end after diagnosis. It can be a wake-up call to start making YOU your biggest priority in life.”

Who are you?
 
I’m a 32 year-old “kid” from Los Angeles, California with an amazing husband and two lovely fur babies: Gambit and AmaDablam. I love everything about the great outdoors, from camping, hiking, jogging, kayaking…. well, you get it

 

What is your diagnosis history? 

 

I was diagnosed a few months short of 30, at age 29, with NSCLC. At the time of diagnosis, I’d already developed multiple lung nodules in both lungs and lesion along my spinal column; in other words, I was considered a stage IV patient....continue reading...

Day 21: Dr. Ross Camidge, MD, PhD. “Progress will come from changing the way we think about cancer”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

 

Day 21: D. Ross Camidge, MD, PhD, Director of the Thoracic Oncology Clinical and Clinical Research Programs, University of Colorado 
"Progress will come from changing the way we think about cancer"

What is your connection with lung cancer?

The first lung cancer patient I remember was called John and he was a plumber in Edinburgh in Scotland. He had never smoked and was one of the first people to go on an EGFR inhibitor in a trial and had a great and long lasting response. He was the nicest of people and introduced me to all his tradesmen friends and I will be forever grateful to him for getting me on the inside track for fixing up my ‘fixer upper’ at the time. We didn’t know about EGFR mutations at that point but it was enough for me to see the potential and the need for breakthroughs in this common serious disease. Now, 15 years later, I run the lung cancer program at the University of Colorado Cancer Center where I am a physician and a clinical and translational researcher.
...continue reading...

 

 

Day 20: Denise Cutlip, survivor. "I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 20: Denise Cutlip, Lung Cancer Survivor
"I saw the hopelessness in my family’s eyes when I was diagnosed and I want to help alleviate that for others."
Twitter: @dennycee

Her connection to lung cancer-
Denise is no stranger to lung cancer. Her father passed away when she was just 15 from mesothelioma from working in boat yards and the plastic industry. She then lost her mother to adenocarcinoma lung cancer in 2006 shortly after being diagnosed. So when Denise was diagnosed on 10-10-10 with stage IV adenocarcinoma, her first thought was “Oh crap! What can I do to live longer than 6 months?”

She was given 15 months to live and she felt like she lost all of her independence. She did some research and later connected with other survivors on Inspire. Learning and sharing with others in her position is what gave her courage and hope to carry on. Even though her family just wanted her to rest, she did not want to be a burden on them. So she slowly started doing little things around the house, not only to contribute, but to also feel like a productive person again. She also started with short walks down the driveway, which eventually graduated to down the street, and then to a whole mile. She was finding her “new normal.”
...continue reading...

Day 19: Anne Gallagher, survivor. "I feel like I’m here to take care of others"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 19: Anne Gallagher, Lung Cancer Survivor
"I feel like I’m here to take care of others"

Anne Gallagher spends her days as a patient navigator at Willamette Valley Cancer Institute in Eugene, Oregon. She is a valuable team member dedicated to all kinds of cancer patients, keeping a close eye on them to ensure that they receive great care in all areas of health.

Her professional career in healthcare began 11 years prior in Women’s Health. The transition to oncology came shortly after Anne’s own cancer diagnosis in 2002 at age 25; clearly a shock and turning point in her life.

Diagnosed with early stage neuroendocrine lung cancer, surgery was recommended. Specifically, removal of two lower right lobes. ...continue reading...

Day 18: Gail Lemaire, Lung Cancer Survivor. "I have 30% lung capacity and I'm still laughing my head off!"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 18: Gail Lemaire, Lung Cancer Survivor
"I have 30% lung capacity and I'm still laughing my head off!"

Gail, what is your connection with lung cancer?
“I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!!
“First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”
...continue reading...

Day 17: Kim Ringen, survivor. "Everyone kept blowing off my concerns as typical pregnancy symptoms."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 17: Kim Ringen, Lung Cancer Survivor
"Everyone kept blowing off my concerns as typical pregnancy symptoms."
Twitter handle: @KimberlyRingen

Who is Kim Ringen? Tell us a little bit about who you are, aside from cancer.

Funny I can’t get away from cancer even in my former life….I’m a veterinarian oncologist. I love being a veterinarian. I wanted to honor the human animal bond when picking a specialty - I chose oncology for 2 reasons. #1 I wanted to help further honor that bond by helping guide pet owners through what is considered one of the darkest days for their companions. #2 I find the intricate cellular backbone that drives cancer biology so intriguing from a science standpoint. This has been one of the hardest parts of my former life to let go… being a veterinarian is not just a job it becomes part of who you are..regardless if you are able to practice of not.

I love skee ball. If I walk into a restaurant or bar with a skee ball machine I am hooked.

I have 3 dogs (lab, grey-mixed breed, and pug), a cat and 7 chickens – in the city. We named the chickens after our friends. We have them kinda trained like dogs.

I was a avid runner prior to my diagnosis – I loved running. If I could run again I would feel more like my former self. My previous half-marathon pace was 8:28/mile…. I would settle for 20 min miles now if I could.

Since I no longer run I have taken up watercolor painting and writing. I am enjoying these hobbies.


How did they find out you had lung cancer?

I was early in my 2nd trimester of pregnancy and I was very short of breath – I kept telling my OBGYN that was also very tired… I used the words morbidly tired. Everyone kept blowing off my concerns as typical pregnancy symptoms. I told my running coach that I swore I’d be that girl running as a preggo – but I couldn’t. I just kept trying and each week got harder and harder and I would say.. Damn, this pregnancy is kicking my ass….

The end of May 2013 I felt an enlarged lymph node along my collar bone and pointed it out to my OBGYN that it was enlarged. He wanted to have an ultrasound of my neck performed and I thought… Well Geez I could perform an ultrasound of my own neck at work… so I did… I knew right away that I had cancer. I was hoping for a curable kind and lung cancer was definitely not on my list of rule outs. Within 3 days of me performing my ultrasound the shortness of breath worsened and I could barely stand unassisted – I presented to the ER and a chest CT scan was performed right away. That’s when they discovered liters of pleural effusion, too many to count lymphs nodes, diffuse lung masses on right and left lobes and a right femur metastasis. Our goal was to continue with the pregnancy – however after a week in the hospital it was determined that my clinical status was too poor to continue with the pregnancy. On the same day I had a D and E and a left pleurodesis. 06-7-13, worst day of my life.


What is a typical day like for you, living with stage IV lung cancer?

Two years later and I am still adjusting – out of the last 2 years I have spent about a 1 year of it on supplemental oxygen. Therefore I get winded fairly easy. I have to take breaks while getting dressed because the minimal effort to put my arms above my head makes me short of breath. I was able to spend 6 months traveling around visiting friends and family while I was on a clinical trial for Alectinib and that was amazing! I typically wake up and cater to the dogs and chickens – I try to keep myself motivated with writing and painting – currently that is harder as my lung cancer is growing – so I retire to the couch often. I attend art classes twice a week – I suspect most of the “ladies” in the class are more naturally retired vs. me medically retired! That’s what I call the other students – “the ladies.”

Most days - I spend several hours a day researching lung cancer – I look for treatment options, survivorship articles and lung cancer community postings – some days I take a cancer break – but it’s never a full break – given I feel it every time I try to do routine household chores.

Honestly – thoughts of the cancer and/or its impact creeps into ~ 98 percent of my day – but I try to put on a smile as much as I can. It’s almost painful to try to fill this section in… compared to my previous life I am doing nothing. Geez, before I was a super busy body – between work, working out and family!


What do you want people to know about lung cancer?

Anyone with lungs can get lung cancer. Even healthy, athletic never smoking pregnant women.


What brings you hope?

Knowledge – knowing that lung cancer research has started to gain its momentum allows me to feel hope that I could possibly live long enough for the next miracle drug to come down the pipeline.

---

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday's post was on Anita Figueras' blog, SciFiKnitter, where she profiled lung cancer survivor Kelli Cathy Stramel Joseph.

Tomorrow's post will be on Dann Wonser's blog Dann's Cancer Chronicles, where where he will profile Gail Kock Lemaire.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Day 16: Kelli “Cat” Joseph, Survivor. “If there was ever a time in history to get lung cancer, that time is now.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 16: Kelli “Cat” Joseph, Survivor
“If there was ever a time in history to get lung cancer, that time is now.”

Kelli, tell us about yourself.

I’m a 48 year old lung cancer survivor, currently NED (no evidence of disease). I am a wife to a gorgeous, caring, patient husband, and we are parents to a beautiful, loving, smart teenage boy who has been so resilient throughout the ups and downs of this cancer ordeal. He is amazing. I’m also a business owner. I have a bar called The Cuckoo’s Nest.

That sounds like a recipe for being very busy. Is it fun to be a bar owner?

Yes it is, and it’s even more fun now that the bar is smoke free. When I think of how much second hand smoke I breathed in from the age of 17, I’m very happy that smoking in my bar is now against the law.
...continue reading...

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver. “Lung cancer happened to Paul, but it’s something we did together.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver
“Lung cancer happened to Paul, but it’s something we did together.”
Twitter handle:@rocketgirlmd

Who are you?

I am Paul Kalanithi’s widow, I’m a doctor, and I’m Cady’s mom. 

My husband was Paul Kalanithi, a neurosurgeon and writer who was diagnosed with stage IV lung cancer in 2013 and who passed away this year at age 37. Paul and I met and married in medical school at Yale and moved to California together 8 years ago to start our residencies. When he was diagnosed, our top priority (apart from the best medical care) was to clarify what was truly important to us and help him seek meaningful time. That included going back to work and, for him, writing (including the essay “How Long Have I Got Left?” in the NYT and working on a memoir). We’d always thought we’d have a child together at the end of residency and when he got sick, it was about that time. We decided we were still going to do it, despite Paul’s illness. So, I am also Cady’s mom! [Cady was born in 2014, 14 months after Paul was diagnosed with lung cancer, and 8 months before Paul passed away.] She brought us incredible joy.
...continue reading...

Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate. “Lung cancer can affect anyone, anywhere.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 
Day 14: Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate
“Lung cancer can affect anyone, anywhere.”
Twitter handle: @BairdAM

What is your connection with lung cancer?
Both my grandmother and aunt died from the disease. My aunt died while I was researching lung cancer at university.

What does your typical day look like?
I am usually in the lab or labland (as I call it) and am active on the Twitter feed #LCSM. Outside of the lab, I keep an eye out for dangerous Australian wildlife!

What is something we might not know about you? 
...continue reading...

Day 13: Diane Legg, survivor and advocate. “I turned her loss into advocacy.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 13: Diane Legg, survivor and advocate
“I turned her loss into advocacy.”

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.
...continue reading...

Day 12: Karen Loss, survivor. “I am living with lung cancer, not dying from it.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 12: Karen Loss, survivor
“I am living with lung cancer, not dying from it.”
Twitter handle: @CancerTrek

What is your connection to lung cancer?

I will celebrate my 3rd anniversary since my lung cancer diagnosis on Thanksgiving this year. When I was originally diagnosed, I was already a nearly 16-year survivor of concurrent primary cancers of the uterus and ovaries. In January, I will celebrate my 19th anniversary after those diagnoses. I am currently undergoing my 3rd treatment regimen. First, I had a combination chemotherapy comprised of Taxol, Carboplatin and Avastin. That was followed for about 6 months by Avastin maintenance therapy. When progression began again, I was put on my second tier treatment of Taxotere. After that shrunk my tumors once more, I went off all cancer treatments and stayed off for about 15 months, though I still received CT scans every three months. The last three scans showed ongoing slow growth in both tumors, but especially in the one on my hepatic dome. The trend was undeniable, so my medical team and I felt it was time to resume treatment and with a few different potential alternatives to consider, I chose to try Opdivo/Nivolumab. I have now had four infusions of this drug and have not yet had my first CT scan since beginning this new therapy. That will happen in the week following Thanksgiving, and I am already looking forward to seeing what it will tell me. During these past three years, I have never reached NED status, but the treatments I have been given have shrunk my tumors, keeping things well in hand so far.
...continue reading...

Day 11: Kelly Shannon, Survivor. "We need to show the world who we are"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 11: Kelly Shannon, survivor
"We need to show the world who we are."

Nearly 4 years ago, Kelly Shannon was diagnosed with Stage 4 non-small cell adenocarcinoma with the KRAS mutation (more commonly associated with people who have smoked). Kelly was a 35 year old non-smoker when she was diagnosed in January 2012, and since then has endured numerous types of treatments from traditional chemo to 2 separate clinical trials. There aren't many options for someone with the KRAS mutation, as there are with and EGFR or ROS-1 mutations. She is now a 39 year old single mother raising two children, ages 5 and 7, while jumping from treatment to treatment in order to buy time for a KRAS treatment to come out.
...continue reading...

Day 10: Brendon Stiles, MD. "Even a diagnosis of advanced lung cancer is not a death sentence."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 10: Brendon Stiles, MD, Health Care Provider
"Even a diagnosis of advanced lung cancer is not a death sentence."
Twitter handle: @BrendonStilesMD

Who is Brendon Stiles? Tell us a little bit about yourself.

Ten years ago, I lost my father to lung cancer. After training at Memorial Sloan-Kettering Cancer Center and New York-Presbyterian Hospital, I am now an Associate Professor of Cardiothoracic Surgery at Weill Cornell Medicine, New York-Presbyterian Hospital. I operate on and care for patients with lung cancer. I have written extensively about lung cancer screening and the management of early lung cancer. I am also a basic science researcher, trying to characterize a new therapeutic target for lung cancer. I am on the Board of Directors and Medical Advisory Board of the Lung Cancer Research Foundation. In addition to being a surgeon and researcher, I consider myself to be a patient advocate.



What made you want to go into your line of work?

I love taking care of patients. In particular, I find that surgically resecting tumors from patients with early stage lung cancer and curing many of these patients is immensely satisfying. I enjoy the technical challenges and instant gratification of surgery.


Tell us about your father's experience with lung cancer.

My dad died from metastatic lung cancer 10 years ago. Five years prior to that he had entered a pilot program for CT screening for lung cancer, however the program was stopped early and he did not continue with annual screening CT scans. By the time he was diagnosed after a visit to the emergency room, his cancer had spread outside the chest. This was prior to targeted therapies and immunotherapy. Despite chemotherapy, my dad's disease progressed rapidly and he died just months after his diagnosis.


What do you want people to know about lung cancer?

Lung cancer can be cured if diagnosed at an early stage. Eligible patients should consider entering CT screening programs. Remarkable technical advances have been made in the surgical care of lung cancer which have made surgery safe and effective for early stage disease. People should also understand that even a diagnosis of advanced lung cancer is not a death sentence. Several new, targeted therapeutics have become available to lung cancer patients along with drugs that boost patients' own immune systems to fight cancer. It is critical for patients to seek out experienced centers for treatment and to consider mutation analysis of their tumors.


Where do you see lung cancer treatment going in the future?

I believe that instead of a "one size fits all" approach, we will continue to see progression towards individually tailored treatment regimens for each patient. Both surgical approaches and systemic therapy choices will be decided based upon improved imaging, staging, and molecular profiling of individual tumors.


Is there anything else you would like to share?

As well as remarkable treatment advances, we are at a "tipping point" for lung cancer awareness, advocacy, and research funding. The #LCSM movement is critical to all of that. It is incredibly rewarding to me to be a part of that. 

---

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Yesterday's post was on Lysa Buonanno's blog, Faith, Family and Friends - Living with Stage IV Lung Cancer, where she profiled lung cancer survivor Andy Trahan.

Tomorrow’s post will be on Samantha Mixon's blog, Keeping my Faith - Living with Stage IV Lung Cancer, where she will profile lung cancer survivor Kelly Shannon.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Day 9: Andy Trahan, survivor. "If you have lungs, you're at risk for lung cancer."

Lung Cancer Awareness Month 2015
Day 9: Andy Trahan, survivor
"If you have lungs, you're at risk for lung cancer."

A 35 year old father of 3, husband, and stage 4 lung cancer survivor. Diagnosed 2-14-13

Andy has been involved in advocacy by speaking to Representatives and Senators to share his story. Along with LCA he helped convince them to sign the bill for Low-Dose CT as a screening option. He and his wife, Leslie, also got a lung cancer specialty license plate in their state of Louisiana. He occasionally connects with other survivors that need support. His dad does a lot of research and connects with other survivors too and his sister created a Facebook page “Andy’s Team.” His brother has helped Andy with his work when he’s not up to doing it himself. Everyone has come together and has a role in the family to support Andy.

...continue reading...

Day 8: Jill Feldman, Lung Cancer Advocate and Warrior, in that order. "Nobody fights alone"

Lung Cancer Awareness Month 2015
Day 8: Jill Feldman, Lung Cancer Advocate and Warrior, in that order
"Nobody fights alone"

Jill Feldman, Lung Cancer Advocate and Warrior, (in that order.)

Who is Jill?
She is the 13-year-old granddaughter who lost two grandparents to lung cancer within weeks of each other. She is the daughter whose father died at 41 years old of lung cancer, nine months after her grandparents died. She is the daughter whose mother died at 54 years old of lung cancer. She is the niece whose aunt died at 56 years old of lung cancer. She is the former president of LUNGevity who was diagnosed with lung cancer, during her term, at age 39. She is a wife and mother of four teenagers ages 18, 17, 15, and 13 years. Jill has been a lung cancer warrior for 6+ years.

...continue reading...

Day 7: AnneMarie Ciccarella, "I got a bully cancer, no cancer is a good cancer"

Lung Cancer Awareness Month 2015
Day 7: AnneMarie Ciccarella
"I got a bully cancer, no cancer is a good cancer"
Twitter handle: @chemobrainfog

AnneMarie Ciccarella is a 58 year old passionate Lung Cancer advocate although she was diagnosed and treated with breast cancer, which she is currently NED.

Why is she so dedicated to lung cancer advocacy? 

 She lost her father to complications from treatment of this horrible disease on July 19, 2007. His body couldn't take the second round of chemotherapy. In addition to her father, she lost her grandfather when he was merely 55 to lung. These thoughts still bring tears to her eyes. Finally, she lost her high school love to lung cancer not too long ago. So three of the first men she loved were all taken too early by this disease.

...continue reading...

Day 6: Jessica Steinberg, survivor. “Cancer picked the wrong bitch!”

Lung Cancer Awareness Month 2015
Day 6: Jessica Steinberg, survivor
“Cancer picked the wrong bitch!”
Twitter handle: @chemosabemomma

If you are out and about in the Portland area you might encounter this dynamic woman on the Portland State University campus where she is working towards a second masters degree, this time in Social Work. If you happen to be just South of town, chances are good you’ll bump into her while in single parent mode. Parenting two boys, 10 and 13 (who’d most likely describe mom as embarrassing as she is juggling 16 items, 4 of which she forgot to write down and may likely be forgotten. If you are anything like me, you see Jessica at Knight Cancer Institute at Oregon Health and Science University where she checks in with her much liked Medical Oncologist while waiting for her next cycle of of her ALK+ cancer controlling targeted therapy pills. Alectinib, slated for FDA approval, has been successfully managing her cancer burden since February 2014.

...continue reading...

Day 5: Lysa Buonanno, patient. “Every day is a gift… even on my not so great days.”

Lung Cancer Awareness Month 2015
Day 5: Lysa Buonanno, patient.
“Every day is a gift… even on my not so great days.”

How are you connected with lung cancer?
I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

...continue reading...

Day 4: Naomi Farley, Caregiver. “Hope is so important...”

Lung Cancer Awareness Month 2015
Day 4: Naomi Farley, Caregiver
“Hope is so important...”

Naomi’s connection with lung cancer:

I am my husband Corky’s caregiver. Corky was a coach running an after school athletic program when he was diagnosed with stage 4 adenocarcinoma. He has never smoked in his life. Our oncologist tested him right away for a genetic mutation, and found he has the EGFR mutation. Corky went on Tarceva as soon as we had his biopsy results. Tarceva was effective for 2 1/2 years until earlier in 2015 when he enrolled in the Clovis CO-1686 clinical trial. He is now in Cycle 10 of the Clovis trial (end of October 2015) and doing very well.

...continue reading...

Day 3: Bonnie Adario, “Lung Cancer patients are on my mind and in my heart every day”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 3: Bonnie Addario, Lung Cancer survivor and advocate extraordinare.
“Lung Cancer patients are on my mind and in my heart every day.”
Twitter handle:@bonniejaddario
 

Who are you? — I am a daughter, a wife, a Mother and a Grandmother who just happens to want to end lung cancer …

What is your connection to the LC community? — I am hoping that my connection to the LC Community is one of HOPE, LOVE and IMPACT.
...continue reading...

Day 2: Deana Hendrickson, advocate. "Smoker, former smoker, never smoker: no one deserves lung cancer. #NoStigma"

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 2: Deana Hendrickson, Lung Cancer Advocate
Co-founder of #LCSM Chat (Lung Cancer Social Media) on Twitter
Twitter handle: @LungCancerFaces

What is her connection with lung cancer?

Deana’s mother, Rita Stein, was diagnosed with stage 3b lung cancer in June 2012. During Rita’s treatment (concurrent chemo and radiation for 6 weeks) Deana found herself spending a great deal of time in waiting rooms, infusion centers, and unfortunately, her mother’s hospital room. In order to pass the time, Deana began to post lung cancer awareness messages on Twitter, which led to “meeting” other advocates, patients, and physicians on social media. When Deana’s mother died in April 2013, she continued her advocacy, in part, to help her heal from the terrible ordeal of losing her NED (no evidence of disease) mother to treatment complications.

Deana helped found #LCSM Chat (Lung Cancer Social Media) on Twitter, and does whatever she can to raise money and awareness, mixed with a little bit of outrage, on behalf of lung cancer patients and their families. As Deana says, “My mom survived the Holocaust, living in a DP (refugee) camp for two years, and the death of my dad after 53 years of marriage. She never backed down from a challenge. In her honor and memory, neither will I.”

...continue reading...

Profiles in Lung Cancer - Day 1: Melissa Crouse, "So the chess match goes on."

Hey folks, it is November, which is Lung Cancer Awareness Month. In honor of this, a group of lung cancer bloggers will be interviewing people in the lung cancer community and profiling a patient, caregiver, advocate or health care provider each day. I will post them here for your enjoyment. I am excited to get to know more people who are impacted by this disease, and I hope you will join me on this ride.


PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 1: Melissa Crouse, Lung Cancer Patient and 10 year survivor.
"So the chess match goes on." 
Twitter handle: @mcrouse53


Who is Melissa Crouse? Tell us a little about yourself, outside of cancer. 

I am the mother of three grown children and a grandmother to two boys (ages 10 and 7) and a girl (age 2-1/2). I also just recently retired from teaching middle school orchestra and chorus………a job I loved and miss. I’ve always been very physically active. Skiing (snow), horseback riding, bike riding, working out and gardening were some of the activities I regularly enjoyed. I was a certified ski instructor when I lived in western Pennsylvania and taught skiing for about 15 years. Those were very happy and fulfilling times. I especially loved the night time chairlift rides when the sky was lit up with so many stars. Everything was hushed and calm. I also had two Tennessee Walking horses before I had children. I can still remember riding during crisp, cool fall days when the leaves of the trees were brilliant. I now live in Florida and enjoy all that this beautiful weather has to offer. The beach is close by which is an added bonus. I enjoy the beach and boating with my son-in-law and daughter on their boat. My children have all moved also, so I am blessed to have them all close by.


How did they find out your had lung cancer? What was that like? How did you feel?
 
My lung cancer was an accidental finding. I accepted a teaching job in Fort Myers, Florida 10 years ago which involved having to move from Pennsylvania. (Long story there.) I needed to have a routine physical as part of the hiring process, so I went to a walk in clinic to get it done. I developed an upper respiratory infection right around the time of orientation week for my new teaching position, so the doctor did a chest x-ray to rule out pneumonia and also for the TB test. The x-ray revealed a tumor in my left upper lobe. Because the radiologist knew my brother (who is a surgeon here in Fort Myers), he called my brother with his concerns. I was in the dark for a few days and it was my sister-in-law who finally answered my question of “I wonder what’s wrong with me?”. We were in her car at Bed Bath and Beyond when she turned to me and said “You have cancer”. I was shocked and speechless. I felt as if I was was falling in slow motion down an endless hole. When we met with the oncologist I asked him, “How can I have lung cancer? I never smoked”. Needless to say, I’ve learned a lot since then. Here I was, a relatively young, otherwise healthy woman who worked out regularly and took good care of herself. I was incredulous. Moving to Florida likely saved my life.


What sort of treatments have you had, and what were they like?

I had an an upper left lobe lung resection followed by the typical 6 cycle carboplatin-taxol regime and was NED for about 3 years. Then a follow-up scan showed “multiple and numerous” lesions (about 17) in my liver, so I became a stage 4 patient. I should say that I was originally diagnosed August of 2005 and my recurrence was discovered in Feb. 2009. I was put on a phase 2 clincal trial of Carboplatin, Ixempra and Avastin which knocked all of the cancer except one particularly large tumor away. I then had sterteotactic radiation therapy to that lesion along with a 6-cycle course of Alimta and Avastin. So, I’ve had numerous IV infusions of all types of agents including Alimta, Avastin, Taxol, Carboplatin in various combinations. Then, in Nov. 2009, I hooked up with a specialist at Mass Gen and am currently on my 4th clinical trial of a targeted therapy. Among the “tinibs” I’ve been on are Cabozantinib (a horrid, toxic, evil drug), Lenvantinib (almost as bad) and currently on Alectinib. Each “tinib” was a little less toxic as the one before. I just recently was taken off the Alectinib trial (a trial that was created just for me…a RET patient. It is already approved for ALK) The drug was working for me, but is affecting my bilirubin levels, so I was recently pulled from it and the plan is for me to go on Opdivo. Also, two years ago I underwent proton beam therapy at Mass Gen. which successfully zapped the 4-5 tumors that were still in my liver, but the nature of NSCLC is sneaky and persistent and it just keeps slowly creeping back. So the chess match goes on.


What is a typical day like for you, living with stage IV lung cancer?

Up until this year, a typical day involved going to work. I am still trying to adjust to not working which is hard for me. I stay busy helping out with my grandchildren. Picking them up from school, babysitting etc. I also spend a lot of time doing advocacy and mentoring other lung cancer patients. I also am a peer reviewer for the SRA and have been trying to establish a local lung cancer support group. A typical day involves getting up, having coffee, checking and responding to emails, reading, going to the beach if I feel up to it. The beach is great therapy!! Meeting friends for lunch and/or dinner and taking care of my two dogs. As a matter of fact, my response to this email was interrupted by a local newspaper photographer who came to take some pictures that will run along with an article(s) that are being planned for next month. I’ve already been interviewed. Our local paper is focusing on lung cancer in November!! Yay!!

What is something you want people to know about lung cancer?

I want people to know that ANYONE can get lung cancer. That it’s the number one cancer killer of women and that the funding is extremely disproportionate compared to other cancers.


What gives you hope?

My wonderful oncologist gives me hope. He’s always thinking ahead and always has a plan B, C and D in place. He also educates me about all the new research that is happening (much of it in his lab). He keeps me in the loop and thoroughly explains everything to me. My appointments with him are unhurried and he is caring and kind. He calls me and encourages me to call him anytime. I also refuse to quit. I’m very competitive and cancer will NOT get the upper hand!!! Period!!!




Is there anything else you would like to share?

I want to add that all three of my children have moved from Penna. to Fort Myers and now live and work near me. It’s such a blessing to have my family close by.


---

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a brief profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

Tomorrow’s post will be on Janet Freeman-Daily's blog Gray Connections, where she will profile lung cancer advocate Deanna Hendrickson.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.