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).

 
lcam-multi-color-logo

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.

——–
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.

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.

——–
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.

Tweets for #LCAM2013 Week 2 — Personal Stories

This was posted today on the #LCSM website. Throughout November, please tweet a lung cancer fact at noon Eastern Time for Lung Cancer Awareness Month (#LCAM2013) and help us trend!

#LCSM

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.

PERSONAL STORIES OF LUNG CANCER

November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeashahttp://www.catchitintime.org/story/chris-draft#LCAM2013 #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett…

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