2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.

Oh, the places I’ve been … (Dec-2015 version)

Today, since my to-do list is overflowing, I avoided doing anything productive and instead marked places I’ve been on the TripAdvisor.com map. According to them, I’ve seen 26% of the world. I’ve visited all 7 continents — although I did not set foot on Antarctica soil, sailing within sight of penguins on shore still counts, right? However, I’ve barely seen anything of Asia and Africa–obviously I have more traveling to do before I rest.

Places I've been (on TripAdvisor map) 2015-12-29

I guess I also need to write more travelogue posts, too …

Guest Blog by Dann Wonser: Do I stay in my clinical trial?

My friend and fellow lung cancer patient Dann Wonser recently blogged an update about his treatment status.  In it, he shared how he made his decision about whether to stay in his targeted therapy clinical trial after the drug received FDA approval.  It’s a worthwhile discussion–an increasing number of cancer patients will face such decisions as more targeted therapies are approved–so I asked his permission to share it on my blog.  The entire text is listed below.



published December 17, 2015 by 

Friends and Family,

After our usual pre-scan hyper-sensitivity to every indigestion burp, cough, or body ache, I kicked my anxiety into overdrive by getting a cold/flu. It gave me all the symptoms of lung cancer gone rampant: Difficulty breathing, heavy chest, cough, feeling not so great. Then we flew to San Diego, where Dr. Patel gave us the good news: No new growth! We’re celebrating!!! We are now a couple of months past the average time that Tagrisso usually remains effective, which leaves me even more grateful. I have another six weeks of sweet life, and have bought another six weeks of time for the next new drugs to be developed before I need them. Clinical researchers out there, you are my heroes! Keep up the great work!

A couple weeks ago I asked what you would do if you had the choice of ending the clinical trial, but continuing to get the same medication in my home town. I thought I had probably covered the major topics pretty well, but found that there was much more to consider after listening to your thoughts. Thank you for contacting me through every means imaginable to share your thoughtful contributions! If you just want to know what I decided, skip straight to the bottom of this email. If all the facets of this decision fascinated you as much as they have me, keep reading and I’ll share what I learned from you.

First, Tagrisso is so new that the insurance company may not cover it, or may not have a contract with a pharmacy that carries it. They may also have a much higher co-pay for a new drug. This could critical, since the reported cost is $425 per pill. That’s right: $425 per day. I am very fortunate to have an insurance plan that has a maximum out-of-pocket expense. I usually meet that annual maximum out-of-pocket around January 7th, 🙂 and then I’m covered 100% for the year.

But what about those who do not have such great coverage? Fortunately, Astra Zeneca has a patient assistance program. See  http://www.astrazeneca-us.com/medicines/help-affording-your-medicines/ if you are in this boat. I believe other drug companies have similar programs… Worth checking out.

Several people told me they would get out of the clinical trial as soon as possible, to cut radiation exposure in half, by having half as many CT scans. Ashley, my clinical trial coordinator, petitioned the study sponsor to decrease the scan frequency for everyone. I’m impressed, and very grateful! Thank you, Ashley! Hey, I know it’s a long shot, but I appreciate the advocacy!

A friend and fellow blogger, Linnea Olson, actually contacted her study sponsor herself. Way to be your own advocate, Linnea!

But how much radiation is too much? Fortunately, I know someone who has spent years measuring radiation levels in workers at a nuclear-related facility. She can’t give an accurate response without knowing the radiation dose levels of the CT scans, but her best estimate is that the dose is still less than the daily level of radiation considered safe for workers in the nuclear industry. I don’t know whether that makes me feel relieved, or worried for the nuclear workers. All the same, it would be helpful to get dose info from a radiologist who does CT scans. I’ll work on it.

Several people mentioned the advantages of staying close to clinical researchers who are on the cutting edge of treatment. How could I replace that?

The length of the clinical trial was questioned. Dr. Patel has no idea how much longer the trial will continue. However, I have the choice of exiting the trial at any point.

Several of you mentioned the importance of contributing to research that affects the lives of so many. More data will help guide more research, and benefit more people.

The travel expense is not the biggest issue, but one that seemed reasonable for the drug company to cover at this point. The cost is roughly the equivalent to the price of one pill ($425) every six weeks.  UCSD told me that they never go back to the sponsor to ask for travel assistance. So…. I bypassed the system! I have my own Astra Zeneca connections, so I made my own request. We all have to be our own advocates.

I asked Genevieve how this impacts her, since she makes every trip with me. She dismissed the question as trivial and irrelevant. That says a lot about love, doesn’t it? She’s a keeper!

One friend, Joe, had a more noble take. He said that it’s good to stay with the girl that brought you to the dance, and make sure she gets home safe. In other words, since this clinical trial saved my life, perhaps loyalty should be a consideration.

Thank you  all for making me consider so much more, and in so much more depth. It makes me feel more comfortable with my decision… to stay with the clinical trial. You helped me crystalize that my biggest concern was the radiation, which I feel a little better about now. You also helped me to decide just how important it is to contribute to the research, and to realize that the most important factor for me is sticking close to Dr. Sandip Patel. He is the most cutting-edge oncologist that I know about for my situation, and I have direct access to him. That is irreplaceable.

Wishing you happy holidays, and decisions you can live with.



Gratitude, Year Four

What does it mean to be thankful when you have metastatic lung cancer?

Four years ago on Thanksgiving, my extended family gathered for a somewhat somber meal. I had been diagnosed with advanced lung cancer the previous May, and despite aggressive treatment, the cancer had spread further. Although the tumors in my left lung and between my lungs were shrinking due to chemo and radiation, the new mass at the base of my neck was starting to threaten my carotid artery. I could see it growing week by week. I felt flashes of hope mingled with panic, anger and regret. Lung cancer is the biggest cancer killer for both men and women and the survival rate for metastatic disease is less than 5 percent. My presence at future family gatherings was far from assured.

This year, I am immensely grateful to have seen three more Thanksgivings and to have no evidence of disease for three years and counting.

I’m grateful for the support I’ve received from so many throughout my cancer journey. I’m grateful for compassionate … READ MORE

Guest blog: Dear lung cancer patient who didn’t smoke

In February of 2014, I wrote a blog post titled “Dear lung cancer patient who smoked.”  Today that post received a comment from my friend and fellow lung cancer patient advocate K ‘Karen’ Latzka.  Her insight deserves a blog post of its own.  Reposted with author’s permission.


Dear lung cancer patient who didn’t smoke,

I was a pre-teen when my older sister invited me to smoke a cigarette with her. I worshiped her, and was excited she included me. Smoking united us. By sixteen, I had a full-blown addiction that I couldn’t break. But the day before my dad’s birthday, when I was 35 years old, I smoked my last cigarette.

For a decade, people celebrated this accomplishment with me. Relatives, friends and strangers asked me for tips to help them quit. More important, I forgave myself for poisoning my body for so long and committed to a healthy lifestyle.
At age 46, I was diagnosed with lung cancer. Since that day, every time someone hears of my diagnosis for the first time, they ask “Did you smoke?” and, unlike my never-smoker brothers and sisters, I respond yes. Yes, but I quit a decade ago. Yes, but I know lots of people with lung cancer who never smoked. Yes, but I don’t deserve to die!

I remind myself that the question usually is not intended to judge me, but rather the inquisitor is gauging their own risk. Smokers and ex-smokers usually follow-up with questions about my smoking history, perhaps hoping my history was worse than theirs. Never-smokers usually follow-up with questions about a loved-one’s smoking history, or about second-hand smoke. I patiently respond with the things I know, followed by “anyone with lungs can get lung cancer.” And in the end, many walk away still thinking that I deserve what I got, most without showing a bit of compassion. And I forgive myself once again, and tuck away the guilt and shame until the next round.

It’s exhausting. It’s hard enough to fight the guilt and shame we put ourselves through after diagnosis, but to be reminded of it again and again by strangers, while we’re literally fighting for our lives is something most of us don’t have the will or the strength to tolerate. Which is why, when I look at my ever-expanding list of lung cancer friends who are active advocates like me, I don’t see many who have a smoking history.

So you advocate for all of us. The rise in lung cancer among never-smokers has caused an explosion in lung cancer research (relatively speaking). We’re finally seeing this research extend the lives of lung cancer patients! And these patients are actively advocating for more research funding, better education, and better screening methods.

As for this former-smoker, I will continue to fight lung cancer stigma by your side, and to do everything in my power to improve survival outcomes, no matter how exhausting it is.

With much love,

A lung cancer patient who smoked

When your pharmacy plays favorites with cancer

Last week I refilled my prescription for warfarin, a blood thinner I take for my cancer-related pulmonary embolism (such blood clots that are not uncommon in cancer patients).  The Fred Meyer pharmacy did their usual efficient job and delivered my medication promptly.  It looked like this:

pink ribbon pill bottle

I think it’s wonderful when corporations support cancer research and cancer patients. Kroger (Fred Meyer’s parent company) has a large breast cancer awareness campaign featuring Kroger employees who have or had the disease, and I’m sure some breast cancer patients who received this pill bottle cap felt a surge of hope.

“Hope” is not the emotion I felt when I saw this bottle.

I felt stigmatized. Ignored. Devalued. And these feeling were triggered by an organizaion supposedly aiming to make me feel BETTER.

I have lung cancer, the biggest cancer killer, a disease that kills twice as many women as breast cancer  … READ MORE


Image credit:  Creative Commons License
Pink-ribbon pill bottle cap by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

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

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”

Lung Cancer Awareness Month 2015

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

amb 2

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.

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

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.