Four years on a cancer clinical trial, and still NED–yay for research and hope!

Four years ago today, I took my first dose of crizotinib in a clinical trial for patients who had ROS1-positive lung cancer. My first scan–and every scan thereafter, including this past Monday 10/31– has shown no evidence of disease (NED). Not bad for a metastatic lung cancer patient who previously progressed on two separate lines of combined chemo and radiation.

I’m very grateful for cancer research and the availability of clinical trials. We’ve had more new drugs approved in the past five years than in the previous five decades!

During November, which is Lung Cancer Awareness Month (#LCAM on Twitter), please consider donating to your favorite lung cancer research facility (one option is the Lung Cancer Colorado Fund at the University of Colorado) or a lung cancer advocacy organization that supports research. 

And for a bit of hope, check out the NEW LCAM website, which represents a partnership among 19 lung cancer advocacy organizations led by the International Association for the Study of Lung Cancer (IASLC).

 
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HOPE LIVES! More research. More survivors.

Profiles in Lung Cancer – Day 21: Dr. Ross Camidge “Progress will come from changing the way we think about cancer”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

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

I am incredibly fortunate to have Dr. Ross Camidge as my lung cancer oncologist, clinical trial researcher, advocacy cheerleader, and friend. He goes above and beyond to help lung cancer patients better understand their options and find hope.  And he adores his two small daughters.

Camidge and daughtersA sample of the hope Dr. Camidge offers shows in his “User’s Guide to Oncology” presentation.  He explains the basic of cancer in understandable language, talks about how to sort through information available online and elsewhere, shares do’s and dont’s of cancer care, and offers some patient inspiring stories.  I’m honored that he chose mine as one of them.

Oh, and he has an awesome British accent.

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.

What does your typical day look like?

Get up before my wife and daughters, try not to wake them on my way out to work. If its a clinic day (two days a week) talk through the plan for every patient with the nurse practitioner, fellow, clinic nurses, schedulers and medical assistant before the first patient arrives. Then jump in and about eight hours later talk through it all again and see how well the battle plan stood up when the enemy (the cancer) was actually engaged. Do follow up emails, calls, dictations, etc. Go home and put one of our two daughters (5 and 3) to bed (pajamas, clean teeth, story), alternating nightly, with my wife doing the other one. Have dinner. Watch variably trashy movie (‘While We’re Young’ with Ben Stiller and Naomi Watts last night was really very touching. ‘Enders Game’ was less touching but still fun the night before). Go to sleep. On a non-clinic day, it is similar but the middle bit involves lots of meetings and emails and phone calls, with senior and  often junior faculty here and around the country and the world (I mentor a lot of bright young things), drug companies and various educational/advocacy groups trying to move clinical and translational research on new treatments for lung cancer forward.

What might we not know about you?

I am grossed out by slugs. Oh, and I taught myself to juggle while revising for my Royal College of Physicians exams in the UK many years ago and still occasionally do it to keep my children amused.

What do you want us to know about lung cancer?

Progress will come from changing the way we think about cancer as much as through specific drug or molecular breakthroughs.  A lot of the advances I have been fortunate enough to be involved with have come from not being shy about defining the edges of human knowledge, and then pushing on through.

What brings you hope?

Seeing the courage, dignity, love and humor of people who triumph over cancer simply by being themselves regardless of whether the cancer gets better or worse.

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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 Lisa Buonnano’s blog “Faith, Family & Friends.”

Tommorow’s post will on Lisa Goldman’s blog Every Breath I Take.

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.

NCI & #LCSM Chat present a Google Hangout on Air 11/19 at 2pm ET: “Changing Landscape of Lung Cancer Research & Treatment”

[Reblog of 11/15/2015 content from LCSMchat.com — used with permission]

Last year in November, The National Cancer Institute (NCI) and #LCSM Chat worked together to conduct a Twitter chat on precision medicine in lung cancer treatment.  This year, we’ve taken our collaboration a step further to create a highly engaging, interactive online event.

For Lung Cancer Awareness Month this year (#LCAM15), The NCI and #LCSM Chat are excited to announce we will co-host a one hour Google Hangout on Air on “The Changing Landscape of Lung Cancer Research and Treatment” on November 19, 2015 at 2:00 ETYou can watch the Hangout LIVE online by clicking HERE.

During the Google Hangout, we will also be co-hosting a simultaneous #LCSM Chat on Twitter on the same topic to expand on the discussion.  If you have questions you would like answered by the experts in the Hangout, tweet them during the chat (or before) using the #LCSM hashtag.  You can read about how to participate in an #LCSM Twitter chat here.

Our Hangout on Air will be moderated by #LCSM co-founder Janet Freeman-Daily (@JFreemanDaily), who will share questions submitted on Twitter with our three lung cancer experts:

During the Hangout, Dr. Jack West (@JackWestMD) will moderate the #LCSM Chat on Twitter.  The questions in the chat will reflect the topics to be discussed in the Hangout:

  • T1: What new aspects of lung cancer clinical research are you excited about? What’s new in clinical trials?
  • T2: How is translational research different from clinical research? What new projects in translational research are you excited about?
  • T3: What new directions in basic lung cancer research give you the most hope?
  • T4: How can the lung cancer community help researchers to give us more new treatments sooner?

Feel free to tweet questions of the presenters in the #LCSM tweetchat—just include the hashtag “#LCSM” in your tweet.  NCI social media people will collect the questions from the Twitter feed and feed them to Janet so she can ask them during the Hangout.  If you’re not comfortable with Twitter, just post your question in the comment section of this blog post.  We will make sure your question gets added to the list.

It promises to be a lively and vibrant discussion about current lung cancer research, clinical trials, and future treatment options.  We hope you tune in to the Hangout on Air and/or join the #LCSM Chat on Twitter.  If you aren’t able to join us live, don’t worry — the hangout will be recorded and posted on YouTube shortly after the event, and a Storify of the Twitter chat will be posted within a week.  As usual, you can find transcripts of past #LCSM Chats on our “Schedules and Transcripts” page.

After the 11/19 Hangout is over, we’d appreciate your completing a brief survey to let us know what you thought about the Hangout, and what you would like to see in future #LCSM Hangouts. Click here to take the survey.

Profiles in Lung Cancer – Day 14: Anne-Marie Baird, PhD “Lung cancer can affect anyone, anywhere”

PROFILES IN LUNG CANCER – DAY 14
Lung Cancer Awareness Month 2015

Dr Anne-Marie Baird, Lung Cancer Researcher and Advocate
“Lung cancer can affect anyone, anywhere.”
Twitter handle: @BairdAM

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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?
I am close to obsessive in my god-motherly dealings with my delightful nephew Oscar. I reserve a special affection for Scottish Highland cows (amongst other varieties), and have a fervent aversion to Australian spiders.

What does you want us to know about lung cancer?
Lung cancer can affect anyone, anywhere. All lung cancer patients and their families deserve to be treated with empathy, dignity and respect irrespective of their smoking history.

What brings you hope?
The recent advances in targeted and immuno-oncology therapy for lung cancer and the remarkable efforts of the very special lung cancer social media family.

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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 Linnea Olson’s blog “life and breath: outliving lung cancer” profiled Diane Legg.

Tommorow Lisa Goldman’s blog Every Breath I Take will profile Lucy Kalanithi.

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.

Profiles in Lung Cancer – Day 2: Deana Hendrickson

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

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.”

What is her typical day like?
She’s online either connecting with lung cancer patients, caretakers and their families, or on Twitter promoting #LCSM Chat and lung cancer awareness.

What might you not know about her?
Much to the chagrin of her ever-patient husband of 31 years, Deana is a veteran animal rescuer, devoted dog mommy, and crazy cat lady. She’s also mom to two adult children, who thankfully do not live at home!

What does she want you to know about lung cancer?
Smoker, former smoker, never smoker: no one deserves lung cancer. #NoStigma

What brings her hope?
Survivors who are *living* with advanced lung cancer. Deana envisions a world where lung cancer is a chronic disease, one that is detected early for the majority of patients, rather than a life-limiting condition.

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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 Tori Tomalia profiled Melissa Crouse on her blog “A Lil’ Lytnin Strikes Lung Cancer.”

Tommorow’s post will be on Lisa Goldman’s blog Every Breath I Take, where she will profile Bonnie Addario.

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.

Please join #LCSM Chat 10/22 at 8PM ET for “Sharing Your Story: Talking Points for #LungCancer Advocates”

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As Lung Cancer Awareness Month (November) grows nearer, patients and advocates become more focused on how to raise awareness of our disease. But what should we say to have the most impact? What “talking points” and tips do successful advocates use in writing, interviews, and public speaking?

The October 22 #LCSM Chat at 8 PM ET (5 PM PT) will discuss the most effective ways to share our patient and caregiver stories as we work to raise awareness of our disease in the media, online, and in person. Although our focus will be on lung cancer, the concepts will be applicable to advocates for any cancer or serious disease. Our moderator will be Janet Freeman-Daily, who has spoken to patient groups, industry, researchers, medical meetings, and the President’s Cancer Panel. Other experienced advocates such as LUNGevity’s Katie Brown (@brownbeansprout), lung cancer blogger Tori Tomalia (@lil_lytnin), and breast cancer survivor Casey Quinlan (@MightyCasey) will also share their knowledge.

These topic questions will guide the conversation:

  1. Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
  2. What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
  3. Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
  4. How do you make contact with potential speaking, online and print publication opportunities?

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.

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This content was reblogged from the LCSM Chat website (with permission).

Special #LCSM Chat Topic 11/05 1 PM ET: @TheNCI hosts chat on precision medicine in lung cancer

This is a repost of a blog on the #LCSM Chat website (posted with permission):

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#LCSM Chat is pleased to announce a special #LCSM Chat for Lung Cancer Awareness Month will be held on WEDNESDAY, November 5 at 1 PM Eastern Time (NOT our usual day and time). The National Cancer Institute (@theNCI) and a panel of experts will be using the #LCSM hashtag to talk about exciting new lung cancer treatment options!

This chat will be in question-and-answer format, with a panel of experts addressing specific topics posed by @theNCI as well as fielding audience questions related to those topics. This format is great for patients, caregivers, medical personnel and advocates regardless of their previous experience with tweetchats.  We hope you’ll join us!  (Check out our refresher on how to join a tweetchat)

Below is NCI’s announcement about the November 5 Chat.

On Wednesday, November 5 from 1:00-2:00 ET, the National Cancer Institute (@theNCI) will be hosting a Twitter chat on precision medicine in lung cancer using the #LCSM hashtag.

We’ll have a “who’s who” of precision medicine lung cancer experts on the chat, including:

  • Dr. David Gerber, Lung Cancer Specialist, UT Southwestern Medical Center
  • Ryan M. Hohman, JD, Managing Director, Policy & Public Affairs, Friends of Cancer Research
  • Dr. Shakun Malik, Head, Thoracic Cancer Therapeutics in the Clinical Investigations Branch of the Cancer Therapy Evaluation program at the National Cancer Institute
  • Dr. Geoffrey R. Oxnard, MS, Instructor in Medicine, Harvard Medical School
  • Dr. Vassiliki Papadimitrakopoulou, M.D., Professor, Department of Thoracic/Head and Neck Medical Oncology, at the University of Texas MD Anderson Cancer Center, Houston, TX

During the chat, the experts will be discussing, among other topics, how lung cancer treatment has changed over the last few years, provide more information about the definition of “precision medicine” as it applies to lung cancer, discuss when patients might consider a clinical trial, as well as provide more background and specifics on the Lung-MAP and ALCHEMIST clinical trials.

For more background information on Lung-MAP, we also recommend Friends of Cancer Research’s “What Leaders in the Field are Saying About Lung-MAP.”