Monday, November 30, 2015

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...

Sunday, November 29, 2015

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...

Saturday, November 28, 2015

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...

Friday, November 27, 2015

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...

Thursday, November 26, 2015

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...


Wednesday, November 25, 2015

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...

Tuesday, November 24, 2015

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

11226049_10206796271201431_6101692854972382299_nJeff 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...




Monday, November 23, 2015

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...

Sunday, November 22, 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.”

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.”

image11Who 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...

Saturday, November 21, 2015

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...

 

 

Friday, November 20, 2015

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...

Thursday, November 19, 2015

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...

Wednesday, November 18, 2015

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...

Tuesday, November 17, 2015

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


Kim Ringen headshot
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.


Kim Ringen at workHow 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?

Kim Ringen with KadieTwo 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.

Kim RingenHonestly – 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.

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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.

Monday, November 16, 2015

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...

Sunday, November 15, 2015

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...

Saturday, November 14, 2015

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...

Friday, November 13, 2015

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...

Thursday, November 12, 2015

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...

Wednesday, November 11, 2015

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...

Tuesday, November 10, 2015

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

Brendon Stiles, MD
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. 

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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.

Monday, November 09, 2015

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...

Sunday, November 08, 2015

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...

Saturday, November 07, 2015

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...

Friday, November 06, 2015

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...

Thursday, November 05, 2015

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...

Wednesday, November 04, 2015

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...

Tuesday, November 03, 2015

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...

Monday, November 02, 2015

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

Deana Hendrickson
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...

Sunday, November 01, 2015

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.


Friday, October 30, 2015

Adventures in Brain Metastases

I am not new to the world of cancer. I survived childhood osteogenic sarcoma, and have been living with stage 4 non-small cell lung cancer for two and a half years. I have had my share of chemotherapy drugs (adriamycin, ifosfamide, methotrexate, carboplatin, Alimta, Avastin), I have had several radical surgeries to save my right arm, and I have been benefitting from a cutting edge targeted therapy. But, with all of these treatments, the one I have never experienced is radiation.

Until this past Monday, that is.

As I wrote about in "The Other Shoe," my regularly scheduled MRI showed that while the targeted medicine I take for my ROS1 mutation is doing a fabulous job controlling the cancer in my body, some sneaky cancer cells made it into my brain. So, on Monday, I had the super fun experience of stereotactic radiotherapy.

The morning started bright and early with a 7:00 a.m. check-in. I was told to take my Valium and Norco in the parking lot, so that they would start working by the time it came to put on my fancy head piece. You see, because the machine is precise to the millimeter, they need to hold the patient's head completely still. They achieve this by using this wonderfully attractive piece of hardware:





They numbed my scalp with lots of lidocaine and proceeded to clamp what my husband described as "skateboard hardware" onto my head. Seriously, it looks like stuff you would find in your basement workshop.



Next, they took me to have a CT of my head, with my fancy headgear clamped into the machine so that they could plan out exactly how my head would match up with their lasers.

By now, it was about 9:00 am. Frankly, the worst part of the whole experience for me is that I don't tolerate narcotics well at all. I know morphine makes me throw up, and I guess Norco is a close enough cousin to have a similar effect. By this time, I was feeling pretty green, but a dose of Zofran helped enormously. Then, I just had to wait around for several hours while they did all the planning for the actual treatment. I had packed the iPad and earphones, planning for my husband and I to watch movies while we waited, but alas, I didn't realize I wouldn't be able to wear my glasses with the headgear! Here is my attempt to balance them on the contraption. Total fail.





So, my amazing husband/caregiver Jason and I just sat around and chatted for a few hours. I got used to the headpiece fairly quickly, and it soon just felt like I was wearing a very heavy hat.



At noon, they had me take a dose of dexamethasone, a steroid to reduce any swelling from the radiation to my brain. The treatment was scheduled for 1:30 p.m., so at 1:00, they had me take another Valium and norco. By the time they wheeled me back for treatment, the duo was kicking in and I actually slept through the whole process. I remember them clamping my headpiece into the machine, and asking a few times how I was doing, but the next thing I knew they said, "OK, we are all finished!"

They removed the headpiece and sent me on my way. By now, the Norco-nausea was pretty bad and I promptly threw up upon getting home. Yay, narcotics. I slept most of the afternoon and evening. The next day, I felt groggy and had a pretty intense headache, but I decided to go the Tylenol route (no more Norco for me!) and that actually helped take the edge off quite a bit. By Wednesday, I was feeling much more like my old self, just a bit tired, and I still have patches of my scalp that are numb, which is a bizarre sensation.

I will have a follow-up MRI in January. Radiation keeps working for many weeks, so they won't know until then how it went. Fingers crossed that this is just a little bump in the road and I can keep going along with my targeted med Xalkori. I continue to marvel at modern medicine!




Originally published at: http://www.curetoday.com/community/tori-tomalia/2015/10/adventures-in-brain-metastases

Sunday, October 18, 2015

Cancer On My Mind

Ha ha - I couldn't help myself.

My dedicated readers will recall from my last post, "The Other Shoe," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain. 

So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc!

Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know details down to the millimeter.

The good news is that, as far as they can tell, the two tiny spot were not actually mets at all, so there is just one met to treat. Who would have thought I would be happy about being told I have one brain met? It's all about perspective. Maybe they should take this approach with all diagnostic testing.

My SRS is scheduled for Monday, October 26. They do the planning scan in the morning, then I hang out all day while they sit around and chat plan my "brain surgery" (that involves no cutting), then they do the procedure that afternoon. They said to expect to be pretty wiped out the next day, but I shouldn't experience any major side effects.

Oh, technology!

On the home front we have done some major rearranging of the rooms in our house. It is something we have discussed several times, but hearing that the cancer is on the move again pushed us to take the plunge. The kiddos now all share the largest room, an odd-shaped attic space that is actually a much better room for kids than it was for Jason and I. Parts of the room are too small for an adult to stand upright, and there are weird little nooks that were kind of wasted space for us. Now the kids have an art nook, and dress up corner, and a comfy reading spot. And they are still young enough to think it is cool to all share a room. Jason and I have one of the rooms downstairs now, and the other room is a guest room/study. Knowing that we have a space where grandparents can sleep when they help us out is a great comfort, and it helps ease the worry that we may be needing more help in the future.

AND I got to do something I've wanted to do since I was a kid. I always said if I ever owned a house I wanted to paint it. Not in the normal paint-a-wall way, but to just grab some paints and start decorating it. So, we all did just that and painted the stairwell leading up to what is now the kiddos' room. The kids have asked if we can do this every day, and there are still blank spots, so why not?



Tuesday, September 29, 2015

The Other Shoe

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/09/the-other-shoe

Sunday, September 20, 2015

Small But Mighty: ROS1ers Unite!

The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post "A Personal Take on Personalized Medicine," my cancer is driven by a mutation called ROS1.

In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask?

Well, of the over 220,000 new cases of lung cancer each year, only about 1 percent of those have the ROS1 mutation. While being unusual may have a nice charm to it, from a research point of view, it is pretty crummy. Why would researchers focus their efforts on helping such a tiny fraction of people? Us ROS1ers lucked out by riding on the coattails of research for another mutation, ALK, and the drug that I take is actually only FDA-approved for ALK-positive lung cancer. There is no FDA-approved medication specifically for ROS1 lung cancer, it was just a happy coincidence that Xalkori works well for ROS1.

For the time being, this is not a problem. I will keep taking my off-label magic pills for as long as they work. But therein lies the problem — almost certainly, they will stop working someday. There are a few other drugs in trials for ALK that also look like they should work for ROS1, but at some point us ROS1ers have to stop tagging along with our cousin ALK and get some research focused on us.

And herein lies the opportunity. Because we now have the remarkable ability to sequence a person's tumor and discover the driving mutation, ROS1 mutations have also been discovered in colorectal cancer, glioblastoma and others. There are now revolutionary trials underway that are not for lung cancer or breast cancer or prostate cancer, but rather for specific mutations regardless of where they are in the body. Fascinating stuff!

It is true that us ROS1ers make up a tiny fraction of the lung cancer population, but when you add together all of the other ROS1-driven cancers out there, our numbers no longer look so puny. Together we make a group that is worth researching and worth saving. When patients unite, they become powerful activists. If you don’t believe me, read about how a group of lung cancer patients and caregivers petitioned to change the surgical guidelines for stage 4 — and they succeeded! (See "Empowered Patients Change National Cancer Guidelines")





So if any of you out there have a cancer driven by ROS1, please leave a comment below or find me on Facebook or Twitter. I would love to hear more about your treatment experiences and discuss how we can help each other.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/09/small-but-mighty-ros1ers-unite

Saturday, September 05, 2015

A Monster Calls

 
I just finished an incredible young adult book. It is the kind of cancer book I would want to write if I ever write a cancer book. It has monsters and talking trees and tells the truth the way only fiction can. It is so very sad, and it gives me hope. Not the I-think-I-might-be-around-for-a-long-time kind of hope, but the scary, painful, they-will-still-be-okay kind of hope.

"Stories are important, the monster said. They can be more important than anything. If they carry the truth."

The illustrations are stunning, so here is a "book trailer" (I guess that's a thing now?) that gives an overview and shows some of the amazing artwork.




The book was written by Patrick Ness, but as he explains in the Author's Note, the story was conceived by Siobhan Dowd. "She had the characters, a premise, and a beginning. What she didn't have, unfortunately, was time." I'm sure you can guess what caused Ms. Dowd's death at age 47.


Zander saw me reading the book and asked me, "But I thought you didn't like to read scary books? I thought you said scary books and movies give you nightmares?"

What I said: "...Oh, I don't mind some scary books."

What I didn't say: "I already have nightmares about the stuff in this book. Reading it helps me deal with the fears."



To all my cancer pals out there with young children, give this book a read. Or don't. It is powerful and beautiful and very painful, but I'm so glad I read it. When my kids are older, I think they might want to read it, too.

The book is being made into a movie, to be released in October 2016. And my first thought was the same first thought I always have when I think of something scheduled for the future.

I hope I'm still here to see it.

Wednesday, July 08, 2015

7 Chemo Pro Tips

Thanks to my awesome targeted medicine, a pill that I take twice a day, it has been almost two years since I have been on IV chemo. While my scans still look great, my hemoglobin is low so I am having several weeks of iron infusions. I am so out of practice with IV medicine that I had forgotten all the hints I picked up during my time in the chair. I couldn't believe all the newbie mistakes I made, so I am writing down some tips here to help myself and you, my lovely readers.


1) Hydrate

Fluids, fluids, fluids. Drink as much as you can the night before and the morning of your infusion. This will make it easier to find a vein for the IV, and it will help to flush the chemo out. I was kicking myself that I forgot about this when I went in for my infusion. After the third failed attempt at starting an IV I realized that the half-glass of apple juice I had had that morning just wasn’t going to cut it.


2) Pass the Salt

This goes along with no. 1, but I would always have a salty dinner the night before chemo to help keep me nice and thirsty. (Note – I have low blood pressure naturally, so salt is my pal. If you have blood pressure issues, go easy with this.)


3) Get Hot

I mean this is the most literal sense. I used to wear long sleeves and a sweater, and would sometimes even leave my coat on in the waiting area to keep my body temperature up. This helped my veins to dilate, and become nice and visible to the people starting the IV.


4) Distractions

I foolishly showed up for my 10 a.m. infusion with nothing to occupy my time, thinking I would be in and out quickly. HA! When they finally started the IV an hour and a half later, my phone battery was just about gone and I was left twiddling my thumbs for the next hour or so. When I was going through chemo, I would always bring a tablet, headphones, and a charger and would settle in for a nice movie festival during the long wait and infusion. My husband and I would turn it into a bizarre date night. Hey, you gotta make your fun where you can.


5) Snacks

Infusion days tend to be very long, so pack a couple of easy-to-eat snacks. I find that an empty stomach is an upset stomach, so keep something in your belly to stay ahead of the hunger. Many cancer centers also have a snack room, so have a poke around there and see what takes your fancy.


6) Germs

Your doctor should be able to predict how many days after your infusion your immune system will weaken. I managed to go through four months of chemo with a kindergartener and two toddlers in the house without getting sick. It is possible! During my low white blood cell count days, I would wash my hands very frequently (some might say obsessively), and I would avoid touching my face. I never realized how often I would scratch my nose or rub my eyes until my physician's assistant explained that this is how most viruses get passed between people. Try it, you will be amazed how often you touch your face in a day.


7) Meds

Chemo is notorious for causing a whole host of side effects; some of the most common are nausea, diarrhea and constipation. Talk to your doctor about these possibilities before your infusion so you can have the medications on hand when the side effects hit.

Now it's your turn. What tips have you learned from your time in the chair?


Originally posted at www.curetoday.com/community/tori-tomalia/2015/07/7-chemo-pro-tips

Tuesday, June 30, 2015

Fear Less

The heart may freeze or it can burn
The pain will ease if I can learn

There is no future
There is no past
Thank God this moment's not the last

There's only us
There's only this
Forget regret — or life is yours to miss.
No other road
No other way
No day but today


- Lyrics from"No Day But Today" (from the musical "Rent")
Scan time is looming large on the horizon, so in addition to trying to take my own advice (see "10 Tips for Coping with Scanxiety"), I have been ruminating on the meaning of fear.

Why is scan time so scary? First, there are lots of little fears that flit around my mind, such as...

  • I'm scared the IV will hurt.
  • I'm scared the contrast drink will make me throw up.
  • I'm scared that I might have some weird allergic reaction to the injected contrast dye.
  • I'm scared that when they inject the dye and it makes you feel like you wet your pants, that I might actually wet my pants.
  • I'm scared that I might breathe in when I'm supposed to hold my breath, or breathe out when I'm supposed to breathe in.
  • I'm scared that I might reach to scratch my nose when I am supposed to be holding still in the scanner.

But, of course, there is the one fear, the real fear, the one really big fear: The scan might show that my medicine has stopped working.

I used to do partner acro, and my instructor described me as "fearless." While it was a nice compliment, it was completely inaccurate. I certainly was not without fear, it was just that my desire to learn and push myself was much greater than my fear of getting hurt. The thrill of flying was much stronger than the fear of falling.

Now, my fears have shifted. Everything boils down to the one big fear that the medicine has stopped controlling my cancer. If that happened, it would mean pursuing new treatment and facing new side effects. It would mean that one of my limited options is used up. It would mean facing the fear that my time on earth is much, much shorter than I would like it to be and that this disease will take me away from the life and the people I love so much.

I was never "fearless," but now I do have less fear. I have less fear about little things, less fear about speaking my mind, less fear about taking chances and less fear about what other people might think of me. I have one giant fear that trumps everything else and that puts it all in perspective.

My drive to get everything I can out of this life is much greater than all the little fears. We only get this one life (I think), so it only makes sense to grab on tight and get all the living you can out of it.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/06/fear-less

Wednesday, June 24, 2015

I Wish My Doctor Knew / Leading Us Through CancerLand

You feel a lump.A bump.
A something-isn't-right.
You walk into the doctor's office.
Your heart is racing.
You can't breathe.
You see your future disappearing before your eyes.

Clipboard
Forms
Insurance
Blood pressure
Temperature
Weight
Check
Check
Check
I wish my doctor knew
check
I wish my doctor knew
check
I wish my doctor knew
check
What it feels like
check
to be a patient
check
to have to be a patient
check
to have to be patient
check

White coats
Cold hard statistics
Medical jargon diagnosis
Gobbledy goop prognosis           
Protcols
Hear me!
Standard of care
See me!
Aggressive
Know me!
Maintenance
Love me!
Stable
check
check
check
check

Know my fear.
so scared
Take my life in your hands.
all control is you
I am more than my diagnosis.
know my heart
You hold all the power.
your words swim around my head
I wish I was your one and only.
please treat me like your one and only
You don’t want to give false hope.
it’s the only thing keeping me from drowning
You hold my hand
Check.

Please guide me
Not just my body
But me
Not just my body to healing or healed or at-least-not-dead-yet
But me, my whole me, my whole self
Please know how much it hurts
Not the body, but the knowing
Please pretend that you care.
I wish my doctor knew.


Originally posted at: www.curetoday.com/community/tori-tomalia/2015/06/leading-us-through-cancerland

Monday, June 08, 2015

Your Heart's Desire

"Can you think what the Mirror of Erised shows us all?" Harry shook his head.

"Let me explain. The happiest man on earth would be able to use the Mirror of Erised like a normal mirror, that is, he would look into it and see himself exactly as he is.... It shows us nothing more or less than the deepest, most desperate desire of our hearts. You, who have never known your family, see them standing around you."
- Dumbledore, from Harry Potter and the Sorcerer's Stone

I am one of the lucky ones who, despite a diagnosis of stage 4 lung cancer and the terrible prognosis that goes along with it, is doing remarkably very well on a targeted medication. Yes, I deal with side effects, like my ongoing stomach issues ("Mommy has a sore tummy") and I sleep much more than the average mom of three small children. Compared to where I could be, I am doing fabulously well. So well, in fact, that cancer often takes a back seat for our family. It is always there, of course, lurking in the background, but often we can mostly ignore it.

Sometimes, however, its impact sneaks up on me in the least likely of places. Take, for example, when I am reading "Harry Potter" to my six-year-old son.


"However, this mirror will give us neither knowledge or truth. Men have wasted away before it, entranced by what they have seen, or been driven mad, not knowing if what it shows is real or even possible.... It does not do to dwell on dreams and forget to live, remember that."


"Mama," he interrupts me. "Mama, I'd be like Harry."

"… Like Harry?" I asked.

"If you died, the one thing I would want most of all is to see you again," he said.



This simple remark left me frozen in my tracks. I was left speechless. I was trying to process his words with the knowledge that, in all likelihood, this is indeed something that he will face.


How do I prepare my children for the future?


So we talked about Dumbledore's sage advice, that if you get lost in what you wish could be you will end up missing out on the life that you get to live. Harry's parents are gone, and no amount of gazing into that mirror will bring them back. His parents would want him to relish the life he has, and find the joy that is his to discover.


It is impossible to ignore how profoundly my illness has impacted our family. But, as I remind myself over and over (and over and over), none of us are promised tomorrow. All we can control are the choices we make today, and the life that we lead from moment to moment.

"It does not do to dwell on dreams and forget to live, remember that."

If I looked into the Mirror of Erised, I think I would see my husband and I growing old together, watching our children grow up and become the remarkable adults that I know they will be.


Has cancer changed you? Do you live your life differently now? And if you looked into the mirror of Erised, what would you see?



Originally published at: www.curetoday.com/community/tori-tomalia/2015/06/your-hearts-desire